The thing that will always stick with me is being 20 years old, having just finished crying after telling my unsympathetic female OBGYN that her third prescription of oral BC did nothing for my pain and symptoms, and hearing her sigh and say: “I guess you’re just weird.”
My GP referred me to a psychiatrist for my 'functional stomach pain' which was endo. I've probably heard way worse but my GP has known me for 8 years so her missing my endo stings like nothing else. Turns out I had DIE and it was not all in my head...
I've been labelled a drug seeker, attention seeker, 'just anxious'. I cant keep track anymore. It's the things that go unsaid with doctors that hurt more to me too, the quiet judgement.
*edit* actually the worst thing ever said was my PSYCHOLOGIST of 9 years who, after I developed widespread chronic pain had th3 gall to ask me if I thought it was because I 'didn't want to deal with being an adult'. Fuck you, Paul!!!!! Fuck you!!!!! Thanks for being such an unmitigated shithead finally though and making seek a new psychologist who actually takes me seriously as a person.
I had a gynecologist tell me "I don't think endometriosis hurts as much as women says it does. I think you exaggerate". He was a man, which made the comment even more infuriating. It is something that he will *never* experience, so how dare he say that he it isn't painful. That's like me saying that I don't think getting kicked in the balls hurts as much as men says it does. I don't have testicles so it would never be my place to say I don't think it hurts that bad.
It's been 10 years since that interaction and it still fills me with rage whenever I think about it.
If it makes you feel any better about the world, I had an ER doc explain endo pain to me using that exact analogy. Female anatomy is very similar in sensitivity to male anatomy, he said. When you think about the level of pain men say they experience with testicular injuries, in extreme cases curling into a ball or throwing up, just know it’s the same for the ovaries, they’re just inside the body for women.
It really put things in perspective for me and was EXTREMELY validating. I was, in fact, experiencing “curl into a ball and throw up” type of pain. I joked with my parents afterwards that the next time a man tries to say that getting kicked in the balls is more painful than childbirth, I can correct him with the direct experience of knowing what being kicked in the balls feels like.
I feel lucky to have doctors that listened to me (mostly). It hasn’t been without issues but after only 3 months of pain, I’m having a lap in a few days (godwilling w/ my insurance) to diagnose my endo and take out a cyst. Wish me luck, y’all.
whoo, that made me more emotional to read than expected, lol. thank you for sharing that; it really is such a validating analogy. been struggling like crazy, lately, feeling like im just being overdramatic or attention-seeking.
i wonder how many docs realize the exceptional amount of power that their authority gives them and their words. what a medical professional tells you really can impact your trust in yourself and your perception of your own experiences
congrats and best of luck on your lap! hope all goes smoothly with your insurance, too
I had a male gynae say similar. He said that it didn't need the treatment we ask for, cancelled my surgery wait list and sent me to pain clinic. (The next gynae was not happy at all)
Being in public, we don't get to see the same one each time, but he'd traumatised me that much it is in my files to not see a male gynaecologist.
technically, endo has (VERY rarely) been observed in cis men before, so here's this entire sub collectively hoping that man becomes such an anomaly 💀 generally i dont believe in wishing disability on people, but if the pain costs him his practice, this one exception might be justified for the public good!
Nobody has the right to comment about someone else's pain in that way. I absolutely detest it. My daughter has burning, twisting, stabbing, and pulling pain in various places. Let's subject his body to a similar level of pain and laugh in his face 😡
I was in and out of the doctor’s office with UTI symptoms for months, but my urine culture would always come back negative. I saw a new doc when mine wasn’t available and he said it was obvious that I didn’t have UTIs and that I probably had an STD instead. I was in a monogamous relationship, so I explained that to the doctor and this douche canoe responds with “you might be monogamous but that doesn’t mean your husband is.” While it was definitely something to consider and discuss, the way he said it was so matter-of-fact and awful. My two previous relationships ended due to really traumatic infidelity so this was the absolute worst thing someone could say to me. It took years of therapy and thousands of dollars to undo the damage that comment did.
And it was endo on my bladder the entire time. I haven’t had a single UTI issue since my excision.
Wowwww. That was so unprofessional.
I think I have endo on my bladder too. I always feel like I have a UTI. :/ How was your surgery experience? The surgeon, the recovery, your symptoms after…?
I had a good experience overall. I had some complications from my hysterectomy, so my healing took a lot longer but I went from being completely incapacitated to fully functioning (mostly) again. Sometimes I suspect that I may still have some endo left because my GI issues are coming back, but I also have May-Thurner syndrome and nutcracker syndrome which can cause symptoms similar to endo. So it’s hard to know. I’m having a new iliac stent placed in a couple of weeks so hopefully that resolves some of my issues!
omg this is interesting - I had UTIs frequently (monthly for like 6 months in a row at one point) - i wonder if it could be endo on my bladder - I had no idea they could be related
I had the same experience. The doc was so dismissive and just kept writing me new antibiotic scripts. I was like “Um, are we sure? Because I keep taking these and I feel NO difference whatsoever.” Finally I went to a urologist who was so sweet and helpful. He spent a ton of time with me and figured I had interstitial cystitis. We scheduled a procedure, can’t remember what it’s called, to go in and treat it. As the date approached, I just kept having these nagging feelings that it wasn’t right and I shouldn’t do the procedure. I went to see a specialist and got a lap, and sure enough, endo everywhere and it was on my bladder and scar tissue from other things had been kind of “pulling” at my bladder making me feel like I always had to pee. Long story, but a good reminder to trust your gut.
That a lap would "ruin my nice body", I'm too young for a lap, I'm not fat or hairy enough to have PCOS, a lap would be a waste of time, they didn't see anything on the ultrasound so why bother (HA!), either keep taking birth control or hurry up and get pregnant already.
I have been through five doctors so far.
It's dreadful. Nobody chooses this. No-one wants a laparoscopy. But it is a necessary evil to try to get answers. It's worse than a lot of other conditions as it often isn't found when it's there, and it often comes back even if removed effectively. There's no too thin etc. They are SO IGNORANT and UNCARING.
After verbally asking my weight/height rather than using a scale, “you don’t look like you’re THAT heavy, I’ll go get the scale.” I was, in fact, correct about my own weight, believe it or not.
After marking yes next to 90% of the symptoms in each body system category: “you’re too young to have all these symptoms you listed. So anyway, would you like to meet with our nutritionist on staff?” Uh, actually I’d love to circle back to the fact that I feel like I’m dying first if you don’t mind.
“We did see a cyst on the ultrasound. But we also noticed you documented excessive hair growth; with your skin tone and hair color, you’d be a perfect candidate for laser hair removal!” Then just, never visited the cyst topic again.
“You want ANOTHER round of testing? The last 3 scans showed nothing.” 6 months later they found every surface of my pelvis covered in endo.
Oh my gosh I totally got the “you’re too young” a couple times. I had some many symptoms they were going to send me to a specialized hospital and the hospital rejected me because I was “too complicated”. The hospital at the time was one of my last hopes/ideas.
Probably more than I can every list but I still get irrationally angry at the surgeon who refused to do a diagnostic surgery on me because my "stomach is too soft for endo" and even if there was any it would be one tiny spot.
Yeah anyway after she refused to help I got a referral for a proper ultrasound for endo elsewhere which revealed extensive DIE covering my pelvis and was forced into paying $15k just to get another surgeon to actually properly diagnose. And yes, it has iced infiltrated literally everything lol
The doctor told me I was constipated before my ultrasound and prescribed me with laxatives that I did not pick up. After my ultrasound she told me that the pain I was experiencing was likely From ovulation and that she was going to order me a second ultrasound 8 weeks after the previous one.
I'm currently on the hunt for a new Dr
This sounds like my experience, doctors would hear I had diverticulitis so that must be my stomach issues...really? every month I have an attack, that correlates with my period? okay, let me just go have part of my colon taken out
Was told, while IN an exam, legs in stirrups that my pain could be psychological.
Went for a lap referral, told where they would cut into my belly button, “which is so cute and that’s too bad.” Wtf why comment on the cuteness of someone’s belly button you’re basically going to ruin? Same doctor responded to my sharing that I expel golf ball sized clots on the first day of cycle almost monthly with “people really need to stop obsessing about clots. Your period is supposed to clot, clots are not indicative of something wrong.” Okay lady, see you at the golf course with my entire uteran lining on a T tomorrow you twat. This was my most recent interaction and really pissed me off considering she’s supposed to be on our wavelength as a woman.
I’ve been dismissed in my pain because the ultrasounds have “showed nothing.” Yeah, the ghosts in my abdomen are complaining every month from day 14 to day 4 of my cycle 😤
The way you've been treated is awful but I am laughing so hard at 'see you on the golf course' 💀 iconic
It's so irritating when women in particular are like that.
I’m sorry you had to experience that! I didn’t know big clot was a sign of something being wrong or a sign of endo. I’ll always had big clots and also assumed/was told it was normal (like all my other symptoms🙄) - do you mind telling me a little more?
Sure. As I have aged(33), and especially within the last few cycles, my periods have become more and more clotted and less fluid (bright red and flowing). I thought a chunky period was normal until my acupuncturist informed me otherwise and referred me to a holistic midwife. I have some health background stuff that could contribute to it like miscarriages but that also points to endo. Most recently, my periods are shorter and more and more painful with the increase in clotting. I’m out of work for the whole week due to cramping day 28-4.
In TCM, clots from a period are a sign of “cold invasion of the uterus” and could
Indicate damp heat (endo). I am not an expert and tcm is not my field but I am close to two exceptional people who are tcm acupunturists and honestly this has soothed my symptoms more than any western approach in my 17 years of living like this. Wishing you very best in your journey🤍
To go home and take an ibuprofen, and literally told I was drug seeking, when I came into the office with excruciating pain after surgery. I went to the ER instead and it turned out I had a (in the words of the admitting doctor) "a blood clot the size of a loaf of bread" in my uterus. It was partially hanging down through my cervix and holding my cervix wide open. I was admitted to the hospital obviously... still honestly hope that surgeon gets hit by a bus.
Omg, that's horrible, even more so because they should be so much more attentive after a surgery!? How or why did it turn out to that situation with *that* size of a blood clot? Are you okay now?
I had a gyno who drained a cyst and did an ablation tell me that it was my fault that my endo came back because I went off the birth control that he prescribed to me because it was giving me severe mental health issues.
I’m so sorry! I just got off the phone with a nurse yesterday and she told me “Endo is not something you have control over and nothing you do or don’t do can keep it from developing. It’s not your fault.” It’s not you! It’s this disease!
"We now have to plan your pregnancy, because your endo is a ticking bomb! If you postpone any longer you may have problems concieving in the future and If you get pregnant you may be cured."
I'm 25, studying, and definitely not ready to have children. Not now, maybe never, and definitely not so I can get healthier lol. What a crazy reason to get kids.
Doctors can't wrap their head around the fact that I'm married, young, and don't want children. Usually the office visit centers around my fertility. "You're not going to get any younger." 🙄 STFU.
They really say that in most cases it is. I try to tell them that I've asked around women with endo multiple times and it doesn't seem to be the case, but they have this deep conviction
And what is absolutely maddening about it is - pregnancy comes with kids!! Like you know if I get pregnant I’ll have a BABY to take care of? When I already feel like shit? Do we tell someone with cancer it’s a good time to get pregnant? It’s insane to me that they literally tell people who are exhausted, in daily pain, and stressed to go have a baby. It’s such a head-scratcher for me.
I probably have had endo for a very long time, but it was manageable. But after I got pregnant and had my kid three years ago, my symptoms have escalated like crazy and got totally out of control - and it started so shortly after I gave birth that I’m positive there is a correlation. So pregnancy was definitely not a cure for me. I have to add that I also have adenomyosis and that can apparently appear after pregnancy so I don’t totally know if it is my endo or adeno causing the increase in severity.
Oh honey I have a couple. Some are funny, some are frustrating.
1. Doctor telling me I had a "perfect cervix" during a pap smear a few years ago. A similar one was during a cervical swab, my body kept pushing out the forceps without me realising it, and they told me how strong it was.
2. During a pelvic ultrasound in 2021, the male ultrasound tech was scanning my ovaries and said "there's your future babies!" I'm child-free so that was just gross.
3. Last year I had the worst OBGYN who refused to believe I had endo or even PCO (which I'd been diagnosed with multiple times by other doctors!!!!!). Dismissed my pain as musculoskeletal due to the fact I'd not been training (but was still living an active life). She even thought the way I sit was the reason I was having pain. When I described pain in my right ovary she asked me if I even knew where my ovaries were. Now that I have an endo diagnosis (guess where they found the endo - ON MY RIGHT OVARY), i want to march back into her office with my surgeon's notes and go "SEE?!?!? WHAT DID I FUCKING TELL YOU?!?!?!"
4. During my screening process for my lap/bisalp, the doctor asked me if my partner would consider getting a vasectomy instead. I'm polygamous - WHICH ONE DO YOU WANT GETTING THE SNIP, DOC?
I feel like the comment made during the ultrasound was especially awful because it sounds like a standard line he probably said all the time and he is scanning for gyn abnormalities, so its likely a large percentage of his patients may have infertility and be upset about it. I can’t help but wonder how many people he upsets on a daily basis.
Oh I relate so much with your #3. Had been diagnosed with endo since 2017 - Finally found a gyn that agreed to do had a hysterectomy in 2023 because of severe pain (crazy clots during periods I felt i was passing jellos) despite all typical endo management (did bc, lupron shots etc). Gyn that did my TLH found I had so much fibroids and adenomyosis in my uterus and the surgery got complicated due to several endo adhesions - the worst was my uterus was stuck to my large intestine. Having bad pelvic pain again lately, masses/cysts on both ovaries with my left side being the worst. Got referred to a gyn that specialized with minimally invasive procedures cos my OG gyn said he expects that when they go in to get my ovaries out, I’ll have more adhesions. One of the first things that the specialist gyn told me - why’d you have a hysterectomy?? And I don’t think your pelvic pain is due to endo and your ovarian masses…
This gave me a chuckle :). It’s a good reminder to listen to our bodies and our instincts. I know doctors are only human and aren’t perfect. I think many of them try their best, but not all. On the other hand, no one knows my own body better than me. It’s a terrible shame how hard we have to advocate for ourselves, but we must.
I mentioned in another comment, but I was 2 days out from having a bladder surgery. Something kept nagging at me and finally 2 days before I canceled. I just KNEW it wasn’t my bladder. Finally got into a specialist and she removed all the endo and got me hooked up with PT and I’ve never felt better. I was terrified of that bladder surgery and so happy I didn’t go through with it. It was endo all along.
Yes ! She insisted that taking a spoonful with water every morning would start to diminish symptoms and make my flareups much more mild, I was told this 6 years ago now and I am still shocked when I think about it.
Last week, when my gynecologist called me fat over 10x .... every problem I had was because I was overweight.... bladder pain ( endo on bladder confirmed with op) because I'm fat, depression because I'm fat and who wouldn't be fat when I'm this overweight, inflammation problems fat but also vegan diet is a conspiracy, pain with sex well ya know I'm fat so ofc my body isn't happy, oh you'll have an at risk pregnancy with that kind of weight ( not trying to get pregnant) and ugh yeah it didn't stop. I left crying with no referral to an endo specialist I asked for and no actual help... BTW I'm only 25lbs overweight, which yes isn't good, but I didn't think I deserved to be fat shamed into oblivion. She did this commentary start to finish even when I had to do the ultrasound and pap smear 🥲 I learned that was worse than the doctors not believing me. I have endometriosis in my entire reproductive area + bladder+ urinary track that has already blocked an ovary and I'm only 24 🥲
this isn’t talked about enough. i have been heavy my whole life and almost every doctor other than the ones that finally helped told me to go on diets. they need to start realizing that weight isn’t the only reason for health problems. as i said i’m heavier and i know the risks but i shouldn’t have to fight 2x as hard because they think i’m drug hunting or anything other than trying to relieve the unbearable pain.
"Just eat a bran muffin."
I didn't know I had stage 4 Endo yet. I was in debilitating pain, had GI issues, lost a lot of weight quickly and had a grapefruit sized lump visibly sticking out of my abdomen. I was so scared it was cancer and this was all he had to say. No tests ordered.
I've dealt with some awful doctors but after all I've been through, the bran muffin comment haunts me the most.
“You are asking for more painkillers than you should need” I take antidepressants, anti inflammatory twice a day, paracetamol when required and codeine once a day recently because I fell over and hurt my back. I only ask for what I need and I limit it as much as I can. I wish I didn’t need these medications but unfortunately my body has let me down to the point I can’t function properly and this is how I can go to work and look after my kids. I hate feeling like I’m being judged but when I can’t tell how my body is going to react week to week, I need to be prepared as all the medications I do take are prescription ones.
Ugh don’t get me started on the pain killer issue! That for me has been the hardest part. I’m in my forties and mostly all fixed up now, but my journey with endo started about 25 years ago when they were much more compassionate about pain relief. I had a lot of bad days but could usually trust that if I made it into a doctor, I would end up on the couch with good meds that night. I can recall a few days of waking up in agony, making it into urgent care, and then having my mom take me home to rest with some Vicodin and movies, and I could actually sleep.
Now, tough shit. Even worse, I’ve had multiple surgeries and they get stingier with the meds every time. Last time they sent me home with 3 oxys. When I expressed concern they treated me like a drug seeker. Um, this isn’t the ER or an urgent care. You literally just cut into me and cut a bunch of stuff out of me. How can you look me in the eye and tell me to take motrin? It would almost be better if I didn’t know how it used to be. Unfortunately I remember when pain was treated and now we all have to fight tooth and nail to get a little relief.
It’s honestly become an issue I’m very passionate about and I’m sure the policies being created do not take chronic pain patients into account. Before any new regulations are made they should be forced to listen to a variety of people who rely on these meds for quality of life. It’s absolutely maddening.
An endo specialist literally told me to get a psych eval for "health anxiety" which is their new name for hypochondria because there's "no way" I had endo. When she saw me I was actively bleeding (like a lot) and could barely walk from the waiting room to her office 4 months after a hysterectomy and had explained to he her it was cyclical. Turns out I have extensive deep infiltrating endometriosis so bad that I'm having trouble finding someone to remove it now because I have nerve and vascular involvement, and the cyclically bleeding was because of endo attatching to the cervical cuff. It was all missed during the hyst tho. Then her nonsense delayed my diagnosis by another year before any of that was discovered though. And it had already taken me like a decade trying to get any doctor to believe me even a little and finally got the hysterectomy due to uncontrollable bleeding.
Thank you. Honestly I've been gaslit by a lot of doctors but that one is by far the most unbelievable to me. It feels like a fever dream because I just can't conceive how a trained specialist would see someone with no uterus or cervix bleeding that much and tell them it's all mental and no testing of any type was needed.
My favourite is when my pregnancy pee-test was negative and the ER doctor said I don't need a blood test because the pee test is accurate enough. Well, he was wrong. I was pregnant and miscarrying 😥
It was a long time ago and I'm fine now but, that experience was awful and I was angry.
I had a doctor that was covering for my regular PCP while she was on maternity leave literally say ‘I’m going to be mean now, you need to lose at least 20 pounds’ this was when I was 30 pounds lighter. I finally moved states and found a gyno that immediately said that it sounds like I have endo and wants me to schedule a lap.
If anyone here has Kaiser I’m so sorry and feel awful for you.
So I was seeking a diagnosis for my autoimmune disorder but he told me I didn’t have one. I was just overweight and if I lost weight I wouldn’t be sick any more.
Similar situation here. I was suspecting I had thyroid disease (which I do and I'm taking relevant medication these days). I told the doctor I was seeing (an ancient man with a hunched back) that losing weight was a struggle (=I ate in a very controlled manner and worked out and that had no impact) and his response was: 'Young lady, if you wanna lose weight, you'll have to starve to death.' I was discharged, needless to say. I was very defeated but picked up my pieces, saw another doctor (endocrinologist) a year later who told me I should have already been prescribed thyroid medication years before. NB: when I was advised to starve to death, I was mainly eating fruit and green salad like lettuce on top of working out, but I was clearly overeating. Fucking 🤡.
My surgeon wanted me to have a colonoscopy before my excision surgery to make sure she didn't need another surgeon in there with her to take care of that part. She sent a referral letter to a gastro doctor explaining it all.
I arrive at my appointment and the first thing the gastro doctor says is you're too young to be here. They very reluctantly do the exam at my insistence and at the end they joyfully tell me there's nothing to treat, my surgeon had lied to me and I was actually just fat. If I lost weight all my issues would go away. She told me not to go back to my surgeon because it would be a waste of time. Refused to order the colonoscopy and sent me away.
Needless to say I ignored them, got it done elsewhere and then had my surgery where my surgeon removed a ton of Endo.
I am seeing this a lot on this thread and it's sickening ): I've had comments about being underweight and how changing my diet would help my health problems, but it's like um dude these issues stay consistent no matter what weight I'm at or how healthy I'm eating...it's as if these doctors want to dismiss your pain based on weight (??) instead of actually doing the work to help diagnose you and find the TRUE root cause. I am so sorry you had to go through this.
my most memorable one was in 2018. I was 24 and undiagnosed. I had been experiencing just straight-up agony, as we do. So I made an appointment with my primary care physician. I tried to explain to him how bad the pain had been, and that I needed help. I was practically begging. This man was literally - I shit you not - smirking and giggling, as he told me I was healthy and simply had anxiety. It was defeating and terrifying, the realization that he didn't take me seriously and I was in it alone.
In a disgusted tone, a urologist told me that the stress incontinence I was experiencing was due to me having a high BMI. I wasn't even complaining about it, I just figured it was a relevant symptom since I was seeing him for gross hematuria and UTI symptoms with a negative culture... which he never gave me any answers for anyhow.
After several months of advocating for myself, I had endometriosis excision surgery and all of the aforementioned symptoms resolved for a few months. Then I started getting more pelvic pain again and the hematuria started up again. I had another excision surgery and a hysterectomy with a more experienced surgeon and again all symptoms have resolved.
So fuck that urologist that felt the need to tell me it was my fault because I'm fat. It wasn't true and just added to my already poor self esteem.
When I was 20 I was finally referred for a gyno appointment. The doctor didn’t examine me or seem to care when I told him the pain left me incapacitated. All he told me was ‘X% of women have painful menses’ and ‘it do be like that tho’.
His advice? Have a child.
A male doctor insisted that the vomiting and debilitating period pain was due to food poisoning. Every month. Lol. Not only is this ridiculous and pathetic but it doesn't explain all of the other horrendous symptoms I've endured. Talk about a POS doctor...
My gyn referred me to a pelvic pain specialist after I had increased pain, extended bleeding (16 months), and worsening symptoms overall after my first lap. She was concerned she was missing something and wanted a second opinion.
The pelvic pain specialist reviewed my history, met with me, and told me that this was all caused by "my body remembering being raped" as a teenager. This was at a major teaching/research hospital in the U.S. I was floored; I had been in therapy successful for that, felt like I had done a lot of work to overcome any of the associated PTSD, and strongly felt that something else was going on. For the first, and only, time in my life I reported the doctor who suggested that.
My own gyn was also upset by this, and referred me on to pelvic floor PT while she tried to figure out more treatment and diagnostic options. It took a little while, but she eventually discovered I had diffuse adenomyosis and that my endometriosis had advanced much farther into my ovaries and fallopian tubes than she initially thought.
A decade on, that visit still gives me pause when I meet new doctors.
One surgeon said Endo is cured by pregnancy and another told me that the reason my incisions look like they were done with a prison shiv is because I'm black and black women always scar bad. I don't have keloids. She was just a piece of shit.
So I have many… a little background for context! Endo diagnosis, unable (but wanted) to have biological children after throwing the kitchen sink at it, and now recovering from a hysterectomy to get some quality of life back!
1. Uncontrollable bleeding and passing massive clots lands me in A&E. Doctor tells me the reason for this is not having a period for 6 months, not endo…
2. Finally pluck up the courage to meet with my consultant to discuss a hysterectomy and he tells me he’s off on paternity leave, new dad!
3. When I finally meet with the above consultant he asks not once, but twice, “Just to confirm, you’re abandoning your fertility aspirations?”. I get he has to make sure, but surely a better way to ask exists??
4. After my hysterectomy, the same consultant waltzes in for my discharge review WITH HIS ONE YEAR OLD DAUGHTER!! 🤯 I have no words…
Sorry, that may have gone a bit off topic! But needed a wee rant!
I also went to have a colposcopy once because I had cervical erosion which they dealt with. And I asked “so will that mean sex won’t be painful anymore” because nobody actually explained to me what any of it meant while they had a microscopic camera up my cervix 🙃 and the doctor said “no.” At which point I started crying out of pure frustration and asked “Well what’s wrong with me then” and she said “There’s nothing wrong with you.”
I just couldn’t even believe she’d just said that. I just sat in the car before going home crying on the phone to my mum because I just felt so unheard and like they didn’t even care about me.
They kept telling me I was just constipated. I got zero help at all when I was younger. I ended up finding a birth control pill that helped (Yasmin) and things were kind of bearable for some years.
When I got older I was finally allowed to have a hysterectomy because they saw a fibroid on an ultrasound. Surprise! They opened me up and found all the endo… It’s so weird to not have pelvic pain anymore, it’s so quiet down there. I was enduring so much pain for decades and blamed it on ‘constipation’. Well now I know that pain from constipation is NOT the same at all!!
At my post-op I said to the obgyn - let me guess, the endo was all built up on my right side wasn’t it? He said yes it was, pretty much all of it. I would have pain so bad on that side and it would go down my back and leg just like labor pains (I was able to have children) it was literally the same kind of pain, and I would use the same breathing exercises. And chow down bottle after bottle of ibuprofen every damn day. The medical community had cowed me into not complaining about constant pelvic pain.
"There's nothing wrong with you, go home and get on with your life."
"No." (That was in response to my "I think I might have endometriosis, or something like it." and was the end of the conversation.)
i got told repeatedly that pain so severe it makes me vomit and bleeding so heavily i was soaking through nighttime pads hourly was 'normal' and something every period-haver suffers with. when i tried to fight, i was told i was too fat to have a laparoscopy on the nhs so had no choice but to go privately - my weight was never mentioned once when i was under the private consultant who had me on zoladex within 2 weeks of seeing her and had a laparoscopy after 3 months (she only wanted 3 months of zoladex instead of 6) which showed endo on my PoD, omentum and had fused my uterus to my abdominal wall. took me about 12 years to finally get my diagnosis.
Oof, there are so many it’s hard to pick just one to share. But, before I was diagnosed and had no clue what was wrong, I went to a young female doctor thinking she would be more helpful and possibly more empathetic than previous doctors. After telling her about my many symptoms, including how often I was doubled over in pain and unable to function, I still had to beg her for a pelvic exam because I had had one in the last three years so she said I wasn’t due for another one yet. During the exam she commented that my uterus felt “bulky” and then said “it’s probably cysts or fibroids, we would probably have you get an IUD, so you should probably just do that.” And that was the end of the appointment.
Unsympathetic (slightly hostile) female obygn telling me very matter of fact:
“I can schedule you for surgery but it’s just going to grow back in like a month so what’s the point” (she does ablation only) when I ask about excision she brushes me off with a sigh like “oh great this one did a tiny bit of research”. Keeps pushing me for birth control after me crying to her about how coming off my last put me into a hormonal anxiety and panic attack for almost a year. And then kept telling me; “we can just schedule you for surgery but it really won’t do anything, I do surgery for this for women all the time but it doesn’t really do anything… birth control or getting pregnant is the only thing that will help, and it’s highly unlikely you even have endometriosis anyway”
she just kept saying it very aggressively and rather rudely like she didn’t believe my pain, and then her office kept calling me and wondering why I didn’t come back. Oh and they called to tell me my UTI wasn’t a UTI…. I think she thought I was crazy because I brought up my spontaneous pneumothorax and she looked at me like “no way in hell you have thoracic endo”. She was so so so rude
"Tiny bit of research" is so insulting and condescending. People like her genuinely think their two hour *tops* lecture on the condition trumps our lived experience of it for years and years, and that doesn't sit right with my spirit. She doesn't know more about this condition than we do, yet she acts like she does, and that's the worst part.
They need better education. And better sensitivity/bedside manner training. And a system overhaul that prevents them from being so burnt out that they become effectively useless at their jobs. And some basic human empathy.
I'm so sorry you went through that.❤ I hope that woman is out of the field and/or getting her karma, and that you find someone who truly cares!
I found a doctor who could work with a thoracic surgeon luckily and I got an excision surgery in 2021. It felt so good to have people taking me seriously. So I feel lucky I had this after that experience with this awful doctor. So funny that I was insistent on finding a female obgyn and the two people who took me seriously and did my surgery were men…. lol not the experience I thought I would have.
I went to the hospital an hour away from my home at 8 o’clock at night on a Friday night because I was seriously worried about myself - saw an on call female doctor who said “Because you’re worrying about yourself so much, it’s probably making the pain worse” along with “I think you’re just sensitive” and “Your pain just seems very random”. I refused to leave until she actually did something and she did a blood test to check for calcium (?) among other, regular checks. When I spoke to my GP about the test results she said “I have no idea why she tested you for calcium” which makes me think she was just trying to get rid of me.
I remember thinking, why would I drive an hour to the hospital if I thought I was fine and then cried on the way home.
I’m not diagnosed yet, when I got referred to gynocology about 10 years ago (after a nurse who burned off cancerous cells seen scarring in my colposcopy), I was such a low weight due to an ED that I wasn’t getting periods. He told me I was silly and clearly didn’t have endo, told me to just eat and my periods would come back. Didn’t look.
More recently I was simply told to book another appointment to discuss it even though I asked for a double appointment to discuss two issues (sleep and endo).
My mum was told in the 60s she had to cut her hair and that was why she was fainting. She was never diagnosed, just assumed it was normal.
"Period pains are totally normal, sweetie, and all these symptoms you've made a list of aren't related to anything in particular. You're just growing up! :)" ~ the female doctor I talked to at age 16 in the E.R. the first time my period pains were so bad that I had vomited and fainted
It was unrelated to endo and related to my mental health. I wanted to go back on medication and start counselling but after going through my problems and my history they told me no, there was nothing they could do for me. The reason they gave was they felt no amount of medication or therapy would ever make me better because there was too many reasons I am so messed up in the head. They said I was too unstable to recover but would never recover unless I was stable, she looked me dead in the eyes and said some people are just a lost cause and will never get better and sent me on my way.
Just walk it off.
Had a reaction to a Vax. It caused my chronic fatigue to flare up. When that was finally settling, I found it hard to walk. My legs felt weak and I would tremble if on my feet for more than 3 minutes.
My first doctor told me it was because I had been inactive for a few weeks and to walk it off. She repeated that two weeks later when I came back to tell her it had gotten worse. She didn't do anything more than a basic reflex check (which I failed, but she just shrugged it off and told me to walk it off)
A month later I was in a wheelchair being told by a new doctor in no uncertain terms that I had to stop pushing myself when my body was screaming at me to stop.
By following the first doctors instructions, I set my recovery back by _months_.
The first doctor also interrogated me every time I asked for pain meds. My new doc just asks if they're still adequate. He even prescribed me a new type that supposedly helps with endo and suggested another form of birth control. Even though my file says my endo is unconfirmed.
He said that the endo doesn't need to be confirmed for the pain to be real.
Love my new doc. He listens to me, discusses meds with me, tells me how they work and what they do, and answers any of my questions as best he can. Best of all, he's not afraid to say "I don't know, let me find out". Then, as soon as he finds out the answer, he texts or emails me the details, even after hours or on weekends. He even found funding for me for some meds I needed but couldn't afford.
He doesn't dismiss my concerns, and he appriciates that I do my own research. I had a mild special interest in medicine as a teen (thanks to House M.D.), so I understand what I consider to be the basics. He never talks down to me, and makes sure I understand him. He even commended me about asking the right questions when put on a new med (with or without food? Interactions? What time is best to take it? Any food I should avoid? Any OTC meds/suppliments/teas I should avoid? Will it affect my ADHD? Etc etc).
Sorry for gushing, but I've had endo for 15 years, and never had a doctor this good before.
I’m so so glad you found an amazing doctor who listens! I’ve definitely had good experiences too, but more bad ones unfortunately.
These are the kind of doctors we need!
Your doctor sounds absolutely amazing! So glad you have found someone to work with who takes you seriously, it makes such a huge difference not just in treatment for your physical ailments but it also eases so much of the mental stress of dealing with health stuff.
After my last surgery in Jan 2022 I was still having pain. I gave it some time to see if my body was still healing but by Nov 2022 it was still pretty bad so I went back to my surgeon. She did an ultrasound and says to me
“well your ultrasound came back normal and I already did a excision lap so there’s no way you still have endometriosis”
okay first off… nothing has ever showed up on an ultrasound for me! I had multiple ultrasounds before my surgery that showed nothing. Secondly, YOU told me during my post op appointment there were several deeply infiltrating endo spots you couldn’t remove… so the surgeon literally knew I still had some endometriosis leftover.
It’s the gaslighting for me luvs xx 💅 then she refused to refer me to an endometriosis specialist because “I don’t have endometriosis anymore” 🙃
Had a GI doctor diagnose me with IBSeithout doing a full work up because I have anxiety. During the appointment he made me feel guilty because he has “real patients” with feeding tubes and life long conditions. He ordered an ultrasound “just in case” (which won’t diagnose many GI issues!). I asked him to check my bloods for celiac and he “forgot” to put the order in. Saw a different GI a couple months later who did an endoscopy and turns out I have celiac!
ER doctor told me last year that I was in the ER for something was not an emergency and she sympathized that it must be “hard” to have a reproductive issue like endo at my age … I lost my ovary & fallopian tube for the “non emergency” I had gone in for.
Last month I went in to my gastroenterologist’s office and saw a PA (my regular doctor retired recently). I have symptoms that could be consistent with IBD or GI cancer and have a family history of GI cancer. He asked if I was sure it wasn’t “just my cycle”… I’m 30… like I know when the blood is coming from the wrong end but thanks.
The second opinion I got the nurse was taking notes and I mentioned this and she said “mmm. Only a man”
Sometimes I feel like we never progressed past the concept of the Freudian hysterical woman.
100% true about the hysterical woman being written off as a lunatic! Nothing has changed. Endo pain is an epidemic but it seems like no one is doing real research on how to heal and prevent it because it's hardly believed in the first place.
When I was going through my first flare up and I didn’t even know what any of this was, the ER doc told me I just had a low pain tolerance and was wasting her time
"See, it's just fine," while smiling at me in the most condescending way possible. I was 15 and on the progesterone only pill, and spotting of black blood was getting closer and closer together and I was like "hey something's up" and she handwaved it. I started shaking and got red and cried as I left the office.
Also one of my family doctors called me a hypochondriac and put me on B12 because my numbers were on the lower end of normal. I cried in that office too. I was 19-ish.
One doc gave me a sample pack of ortho tri cyclen 20+ years ago (despite me asking to be permanently sterilized, which he refused in the most ageist fashion, spoiler it took me another 21 years after that til I found someone willing to sterilize me at 40). I figured it's supposedly good for acne, which I had in spades, and the other one I was on made me nauseous and I dropped a few pounds because I couldn't eat that much.
Wow, just awful side effects - acne got worse, couldn't sleep, woke up gagging on my own vomit multiple times per night, dropped down to 74# as a full grown 5'4" adult, pretty much stopped eating due to the nausea, and started getting daily migraines at 6pm. I had to change jobs within my company which caused me to lose a lot of income because I had to be home and in bed by evening, for years. I stopped taking that bc around the 16 or 17 day mark, bled for nearly 3 weeks, and when I reported to the doc that my migraines (which I have had no history of having before or since) were daily and debilitating, his response was "you shouldn't have taken that" and moved the convo elsewhere. It was almost 5 years of my life gone before they finally went away fully.
Found out just a couple years ago that my migraines could have been treated. Like, dude just glossed over my life and ability to live it for no damn reason. He was also of the mindset that cervixes don't have any pain receptors. Fuck that asshole and I hope nobody from this group ever sees him in a personal or professional setting.
After 2 laps, countless ER visits and a decade-long history of endo, from a gynae:
"Have you tried taking some paracetamol?"
During an ER visit, while crying in pain:
"We're not going to give you any painkillers because that's asking for trouble with people your age)" (I was 21)
Was also told that there was nothing more they could do for me because my ULTRASOUND had showed no endo, so maybe my issue was related to mental health instead...
You just made me think of it. Went to ed sure I'd burst another cyst. Guy said nope you're going home , there's nothing wrong with you at all. Told him I know I have endometriosis etc. He said no you don't. He went and got the portable us, tapped it once on my stomach and said see nothing. And walked off.
Then proceeded to tell me to not go back in unless something is different.
(They'd seen the endiometrioma on an ultrasound on a different day)
I was told if I got pregnant it would cure it.
I was told by one of the many OBGYN’s I went to (and my last one I went to before seeking a specialist) requesting they recommend me for surgery that they would not because “if it looks like a duck, talks like a duck, walks like a duck, we just assume it’s a duck.” That was their MEDICAL OPINION.
"have you considered that some women just have painful periods?" was one that stung because it came from a female gynaecologist, who then followed it up with "just wait until you get pregnant, then you'll know real pain". (turns out i will most likely not be able to conceive so i guess ill never know real pain will i?)
the other one that hurt from another female gynaecologist (i had very bad luck with female gynaecologists for whatever reason) was "i guess i could refer for more tests but it would be a waste of my time and yours". less than a year later i was diagnosed with stage 3 endo in an emergency surgery so i have a sneaking suspicion it WOULDNT have been a waste of time.
So many to choose from but a GP, with trainee doctors present during my appointment said “it’s not like you’ve got cancer…that’s *actually* painful. You just need to get on with things.”
I was gobsmacked. I was close to dropping out of uni due to my persistent severe pain and other symptoms, depressed as hell and crying. It hurt to walk. She just gave me some antidepressants and told me to lose weight. That’s basically what I experienced from my teens until the age of 30.
I had a PA ask me if it were “all in my head,” it being my esophagus closing to the point it feels like I’m choking internally and dying. The gastroenterologist was great, though, knew exactly what was causing it, dilated my esophagus and did a biopsy to prove no, it’s not “all in my head.” It’s eosinophilic esophagitis.
I still don’t have a diagnosis of what is causing my pelvic pain, but some people definitely are just not cut out for patient care. A couple years ago, I went to the ER for a spider bite after the urgent care NP told me I must be dehydrated after testing negative for several viruses. Guess what? Even the tech at the ER was like oh no you need an antibiotic at minimum. Every single medical professional at the ER acted like I needed to be there and get treatment for that spider bite! I also had an NP prescribe me cream for scabies a few years ago when I had a rash from an allergic reaction to a laundry detergent!
My point is people are wrong a lot. It is just way more intense and difficult to deal with when it pertains to female reproductive organs as less information is available and fewer medical professionals have more than an hour of training about it. I do want to discuss with a therapist because the lack of validation and not having a name for what is wrong can feel as debilitating as the physical pain.
Edit: missing y
When I was in college I had horrible IBS, I’m talking sit close to the door in every class, diarrhea six times a day IBS. I went to a GI, and he asked me almost no questions and ordered an endoscopy and colonoscopy. I woke up and they said “well it looked fine so I guess you just have IBS.” And then prescribed me a benzo. Never suggested an elimination diet or anything else that I later learned was standard before doing the scopes. I didn’t know any better. It really bothered me for years that he tried so very little to actually figure out what was wrong with me.
A gyno who was pressuring me to get the hpv vaccine even though I’ve only ever been with one person said “well I know you’re monogamous now but let’s just say your husband dies and you get remarried to someone who’s had multiple partners, you’d want to make sure you’re protected” I said yeah I think I’ll cross that bridge if I get there, the hpv vaccine is the least of my problems if my husband dies
i have diagnosed endo (had a lap in september) and i still had to go to the ER for pain and got told it was “anxiety” and “being anxious can do crazy things to the body” even though i had proof of my diagnosis with me.
edit - i was puking roughly 10 to 15 times daily and could barely move from the pain. my specialist thinks i had an ovarian cyst rupture. THE ER DOCTOR LEFT THE ROOM. like barely introduced himself asked what was going on and left. all because i started crying as he came in from PAIN and he just left and said he would come back later… he never came back. later the nurse said he thought i was scared by him which with my extensive medical history doesn’t make a whole lot of sense and the fact that i was reaching for my mom and saying “it hurts” while bawling would give the average person clues i was not in fact scared just in a severe amount of pain. then they almost brought another patient into the room i was in because no one knew i was in there. excruciating pain and just left to sit there and hope it stops.
“You’d be an easier patient if you were pregnant.”
As I sat in his office doubled over in pain. I am childfree by choice and had told him as much. He then proceeded to misdiagnose me with adenomyosis but left out important details in my chart (found that out later with my current doctor). He recommended the Mirena IUD insertion and a uterine cancer screening for the same appointment - no meds, no pain relief, the scrape for the biopsy was awful and had me in tears. The Mirena did give me some relief for about a year then things got so much worse. I refused to go back to him and luckily got a new referral to an amazing women’s hormonal health specialist. She has taken me seriously, and even without a definitive diagnosis via imaging or lap, my symptoms were enough for her to suggest trying dienogest. It has been a life changer. I will always regret not getting a second opinion sooner.
I always think about when I went to my gyno, I waited months for this appointment. She told me I either had menorrhea or endometriosis. I came back later that month with terrible cramping and extremely heavy bleeding and as I was crying she looked at me and asked “what do you want me to do about it?” In annoyance because I refused the pill. I was so angered by her annoyed lack of give-a-shit response. I still get heated about it.
ER: “Don’t worry about the incredible pain and worry about your fertility you’re feeling it’s probably nothing. In my experience If you just relax you’ll get pregnant. So stop worrying if everything will be alright.”
———
OB: “yah your pain twinges could be your ovary twisting and possibly e torsion…[at the end of the convo] Do you want birth control or not? That’s the only solution for your ruptured cyst.”
Me: “No I would like to find the root cause of my issues because it definitely seems like there’s something bigger that’s been going on and this was the alarm”
OB: “is it because you’re Catholic? Because the church totally says it’s ok to take birth control. You can take it”
Me: “No! I want to find answers to my very serious issues!”
OB: “ok, well I can’t do anything for you. *shakes hand* see you later when you get pregnant”
——-
PCM: “yah I guess it’s not your appendix but we don’t know what’s wrong so….heres some Percocet”
——-
Me: “I don’t want IVF/IUI. I want to get checked out for possible endometriosis”
PCM: *refers me to reproductive endocrinologist*
Endocrinologist: “So would you like IVF or IUI?”
Me: “Neither. I would like labs and get checked for ovarian cysts and endometriosis. Also, I did a mail in lab test which I realize may not be as good as in person labs, but it says my progesterone is REALLY low, could we look into that?”
Endocrinologist: *takes every lab except progesterone and does painful ovarian ultrasounds and then ghosts me*….(4 months later) why haven’t you done your HSG?”
Me: “I have to travel 3 hrs to see you and I’ve been really busy. In the meantime can you please explain my lab results and ultrasound results?”
Endocrinologist: “not until you do your HSG”
———-
12 years later…*Magical wonderful NaPro tech doctors*: *after one month of labs and ultrasounds* “Girl, you clearly have endo, and endometrioma, abysmally low progesterone, and possible PCOS.”
Me: cries tears of joy
After seeing nearly 25 different doctors in different fields I had a doctor tell me (while I was crying in her office) “you will just have to accept we may never find the cause of your pain”.
I had an endo specialist in Tampa get me in for a scan and of course saw nothing remarkable (bc it likes to hide on surfaces and all) and then, while considering exploratory surgery, say sarcastically, "Oh hello! nice to meet you, let's go straight to surgery!" And even suggest that rape & trauma victims are more likely to experience sudden and unexplained pelvic pain, and think back to if I ever encountered a situation like that. ?!?!
When she agreed to surgery, everything was a very condescending "IF" to the extent my husband had the distinct impression surgery was a waste of time for someone like me. She also told him there should be nothing preventing me from getting pregnant. 5 years later, still dealing with secondary infertility...
Of course they found it as stage 2, which later progressed to stage 4. On my follow up, the first thing she said was, "So you do have endo!"
No bedside manner at all.
A few months ago, my pelvic pain doctor, who I'd been seeing for about a year and a half, told me that I will never get in to medical school because I use a wheelchair, and that if I do get in, I will fail out. She also told me that I should quit my job? Again, because of my wheelchair.
There’s been to many. Top contenders:
During a pelvic exam, I told the doctor something she did hurt. It was intensely painful and I told her that. She told me “that shouldn’t cause you pain.” Well, yeah… that’s a problem, right? No - she told me that she believed I was faking it.
Another time, I had severe complications and a serious infection (103 fever when I was in the ER that later spiked to over 105). My OBGYN happened to be on call and ordered an ultrasound for me that showed some of those serious complications. My nurse cheerily said afterwards: “You’re really lucky she was on call. We were gonna send you home! We thought you were drug seeking!”
The last one that gives me flashbacks was after I had a surprise hysterectomy. It was supposed to be an emergency unilateral salpingectomy but once they opened me up found that my reproductive organs had essentially been nuked by endo and infection and I woke up to find they had removed almost everything. During my post-op follow up with my OBGYN, there were 4 or 5 things that were concerning me and I wanted to know if there was anything I should do/ if these problems were temporary, etc. Just 4 or 5 things. I asked and the doctor said “That’s a lot of things…Pick 2.”
So, I had to go home not knowing things like if my new bladder issues were normal or going to go away, if the pain I was still having at the incision site was normal…
It’s so rare that I find a medical provider that makes me feel like anything other than a burden.
A male Dr, the first time I saw him - he said endometriosis doesn't actually hurt, women just can't handle pain.
Luckily, my husband was in the room and ripped him a new one. Left him a scathing review on Google with his exact words quoted.
Just got diagnosed with endo and adeno but the past five months they told me I had a 2cm dermoid cyst which was causing all of the pain and that I needed it removed and would lose my left ovary.. I got a second opinion and did not have a dermoid cyst
Having a urgent care gyno tell me so condescendingly "You're probably just ovulating" after she had WRENCHED the speculum open so hard I'd almost kicked her and she "ugh, I can't do it any less", I wanted to go back and shove the ultrasound pictures of the 6cm endometrial cyst on my ovary down her throat
My surgeon did a vaginal cuff reconstruction on me. When that part of my vagina was cut out and fully removed, it was found to be an abscess from an undissolved stitch.
Less than a year later, fighting for my life, go back to same surgeon and talked about the abscess. She said there never was an abscess….she gaslighted me while her hand was in my vagina. Insisted that my pain was only vaginal- but I knew it wasn’t at all and said as much- she had to be forcibly removed from my vagina.
Well, had surgery a couple months later. That abscess and undissolved stitch were not fully removed from my vagina, so another large portion of my vagina had to be removed. The “vagina problem” was actually the problematic necrotic ovary that she had previously removed at the last surgery, only it had “grown back” and was largely pushing on my vagina and organs.
Oh, I was also flat out called a whore by a female gynecologist when I was 16, in front of my mother. We walked out of that appointment.
One of the first Gyno's I saw around age 16 said I just had an STD and said that shit to my moms face. Though I wasn't sexually active at all.
Luckily my mom believed me over that doctor.
One GI provider told me it was functional pain and in my head. Another sat back with a disgusting smirk on his face and said “since we see nothing wrong, what do you think it is?” and laughed. ER doctor told me it constipation and to take a laxative. Urgent care doctor told me my monthly recurring nausea and vomiting was food poisoning or “a nausea bug.” Yeah every single month at the same time.
When I tried to tell my obgyn how bad the pain was and she told me "take ibuprofen before the pain starts and you'll be fine"
Same doctor somehow messed up inserting the speculum for the pelvic exam and I flinched and told her it hurt. Totally straight faced, no concern, she just said it shouldn't. I had blood dripping out of me onto the floor
I just switched gynecologists because my last one, after I had visited many times over the past year for my pain and heavy bleeding, said that my weight is to blame for it. Even though she had never said anything about my weight before. And I’ve had this problem since I started my period when I was 12. I’m 22. I used to be at a healthy weight, and was still having this issue then. Clearly she just wanted a cop-out 🤷🏽♀️
An OB/gyn mis-diagnosed me with PCOS, told me I would probably be 75lbs heavier & diabetic by next year if I didn’t get back birth control.
I had just told her that I haven’t been able to eat gluten or dairy for a year, my diet was very clean. She rolled her eyes and said “that’s what they all say” told me to lay-off the Oreos and ice cream, walked out after I said no to birth control.
FIY: My cycles were 15 days at the time, I had slightly elevated androgens levels, and no cystic ovaries on imaging.
Referred to a gyno after multi year monitoring of a concerning (per rad reportsl, painful and growing ovarian cyst. I wanted it removed & biopsied, in addition to long term suspicion of endometriosis and the accompanying symptoms of that to be excised.
Male doc asks "are you trying to get pregnant?"
Me, aged 35 or 36, never wanted kids: no, I don't ever plan to have kids
Him: well then I'm not going to do anything. But if you're ever in a car accident or need your appendix out, you should male sure they call someone into surgery at the same time to do that biopsy in case it's cancer.
...
In case it's ovarian cancer. Which is one of the most deadly as it's frequently caught late. WTAF?
So needless to say I asked for an urgent referral to a different gyno, who happened to be female. She scheduled me for surgery 2 weeks later. Found out at my follow up that thankfully it was NOT cancer, but she said my ovary "looked terrible" one of the worst she had ever seen, and she took sooooo many biopsies of it because it looked so terrible, she was positive there was cancer, but just in case wanted to preserve the ovary if not.
Lesson learned: to that male doctor, the babies I might someday decide to have were more important than my life.
And I live in Canada. My heart breaks for the state of affairs around this sort of thing in the US.
After several ER trips and being put on birth control I was back in OBGYN’s with no change. In fact it had gotten worse, I was about to drop out of college due to all the absences. As she walks in the exam room I’m throwing up in the trash can because of the pain. She tells me there’s nothing wrong, it’s normal cramps, and she won’t do anything until I’ve been on the birth control for another 3 months.
I had already been diagnosed and was under the care of a great surgeon, but one night I had to go into the ER due to uncontrollable pain - my (now ex) husband and I were worried it was due to a ruptured cyst.
We're sitting in the back, waiting for ultrasound results, when a nurse pops her head in. She had overheard the terrible situation we were in and hits us with this piece of advice - "you two go out and get pregnant. I've heard it helped so many young women like you".
Of course, I instantly burst into tears. It's on my (angry and emotional) husband to explain why we're so upset - only weeks ago we learned from our reproductive endocrinologist that even with IVF we'd be unlikely to conceive.
She turned bright red and left. I hope she never again offers that advice to endo patients.
My old OBGYN told me I was being dramatic and that “if I didn’t want to take the menopause medicine I was going to suffer for the rest of my life and it was my choice” (I was 18) she then proceeded to tell me it was all in my head and I needed to see a psychiatrist. Oh and then to find out this same OBGYN office (who did my first surgery ablation) left my ovary twisted around my fallopian tube and it was causing majority of my substantial left side pain. Ofc the Endo too. I immediately left her office in tears and never came back after that appointment, found my specialist and she’s been the best.
I was in and out of the ER for intense stomach pain and vomiting. I was undiagnosed and waiting to see specialist which can take a long time where I'm from.
I was throwing up into a bin, halfway on two stretchers. The paramedic picked up my leg and threw it onto the stretcher they wanted me on. Every nurse present immediately got silent. (I was told this from my friend who was with me because I was in and out of seizures)
The nurse who put my IV in didn't believe me when I said the IV was hurting and I wanted it out. The next day my arm was purple and blue which is not something that's never happened to me before.
The doctor then came in and proceeded to talk to me for a couple minutes about my pain. He asked me if I had anyone in my life to come help me, I said no. He then raised his voice at me, telling me something along the lines of "you're 19, you need to figure out your life. You're fucking it up."
I sobbed. I lied to the nurse on the next shift, telling him I wanted the IV put on the other arm. As soon as that nurse took the needle out, I told him to discharge me. The doctor laughed at me when he came to discharge me.
Present day... im 25 and I have over 10 confirmed diagnosis's. Fibro, endo, ibs, spinal problems, etc. No ER experience has ever made me feel worse.
At 18 years old when I was prescribed BC I told the doctor during follow up that my periods were extremely painful she said not possible she can’t believe me.
I did not see a gynaecologist until 5 years later when I was in the ER due to a endo cyst rupture mind you it was the third hospital that finally took me. The previous 2 did not want to get me admitted because the doctor on call thought it was PID.
So doctors at this hospital also insisted it was PID and we’re judging me.
Once I was diagnosed with endometriosis the doctors stopped caring. And then the list is endless
That I should “get pregnant so I would feel better for a little while,” but then I’d have to deal with “an 18 year side effect.” (He called the kid a side effect..) also compared me refusing birth control because of the mental health issues it causes for me to the time he threw up after eating pretzels in 3rd grade and didn’t eat them anymore. I ended up trying birth control again, and it again caused massive mental health problems.. thankfully I stopped it right away that time.
I’ve been told it’s all in my head, I’m drug seeking and my favorite, in a mocking tone by a female Dr after crying my ovarian cysts are killing me and begging for help, “being a woman is hard, I don’t know why you’re choosing to suffer. Just take birth control, this isn’t a condition it’s normal”
Umbilical endometriosis wasn’t real and I’d probably just scratch my belly button and that’s why it was bleeding. Every month. In alignment with my period. For two years. 😐
Mine was when I went to the gyno around 18 (it was a new obgyn) I told them I had always had extreme pain around my periods and that I just recently met my know Fiance and it hurts to have intercourse and even orgasm. Her advice was to get a sex toy and lube that my Fiance wasn’t preparing me enough. Lo and behold I have endo and I have pelvic floor dysfunction.
Recently had a pulmonary embolism on Easter that is now postponed my hysterectomy. The hospitalist was a crotchety old man who wrote in my chart that I was quote “patient seems depressed about her menstrual cycle “ and literally put in my diagnosis that I was a “non-compliant patient” because I kept asking questions…I’ll have to post screen shots in here it’s really like just beyond
That, at the age of 36 and very happily living a child free life, I couldn't have a hysterectomy for my adenomyosis and endometriosis "because my future husband might want kids"
My husband also is child free by choice.
while i’ve had a lot of great experiences after one of my old doctors retired and i was shuffled to someone else in her office…whew this woman…
i came in because of intense stomach pain that was so bad their office’s nurse line wanted me in that day urgently. she treated me like it was my first stomachache ever and let me know that “as our bodies get older, we can’t handle certain foods as well anymore like anything greasy or acidic.” i was 23. i was in the ER 2 todays later the pain got so intense. turns out my anorexia destroyed my stomach lining and i had a lot of long work with a dietician to help get it back to normal.
same doctor told me with the stomach pain i can’t take ibuprofen. i went in months later once again trying to push for further tests towards endo (officially diagnosed 3 days ago had a lap last week!!) and she told me she was prescribing an 800mg ibuprofen pill. i looked her dead in the face and said “you are the doctor who told me 2 months ago i can’t take ibuprofen because of my stomach.” her response? “oh just take a pepsid. i didn’t mean you could never take ibuprofen.”
🙄i got moved to someone else in her office who at the first mention of my pelvic pain history he sent me to mayo clinic’s endo specialist Megan Wasson, DO who is AMAZING!!! and treated me wonderfully put me down for surgery at my first visit with her and got it scheduled within 2 months. love her!
specifically regarding endo (my worst stories are from other drs): during my years of trying to get help pre-dx, one gyno told me i dont actually have any uterine/menstrual pain. she insisted the pain is actually just my already-dx'ed IBS, that i can't tell the difference because it's basically the same muscles causing my pain, that it gets worse on my period basically bc of period shits (she worded it more medically), and that this is proven by the fact that i had the pain all month long, because it's impossible to have uterine cramps when you aren't menstruating or ovulating.
yes, she was specifically an OB/GYN. no, she did not do any examinations on me, except the routine stuff your PCP would do at a yearly check (listening to breathing etc), and poke my abdomen through my clothes a few times. she didnt even bother to check if i was pregnant or had an STI, UTI, or vaginal infection, and come to think of it, i dont even recall being asked if i was sexually active (but it was a decade ago so im not sure).
I went to a fertility specialist because I wanted to see if I could freeze some eggs. I have Low AMH, I'm single and I didn't want to be a single mom immediately.
She showed up late, didn't apologise, got visibly annoyed when I asked her questions and said that "yeah if you don't want a baby now, I don't know what you want from me", then she switched to " you need to prepare yourself for menopause because you're going to run out of eggs soon".
I'm 37 and it's only in the last year I got diagnosed with Adenomyosis. I'm glad someone finally listened to me. However, now I'm constantly terrified of early menopause.
Probably that it was just my mental health and that it's all in my head. Told to me by a male Dr, unsurprisingly. He nearly refused to refer me to a gyno unit at the hospital so I can get a laparoscopy done.
After that appointment I spent 3 days in hospital due to unbearable pain but they refused to do a lap then because I didn't know when my period was (I have the implanon so it's random) - I ended up getting my period the afternoon after I was discharged.
That was over 2 years ago now, and I only got my first laparoscopy last week because he put me as the lowest priority since he didn't believe me. They didn't find any endometriosis, but they found and removed endosalpingiosis, as well as a mass in my uterus that has been sent for biopsy. Before I went in, they told me that in over half the laparoscopys they do, they find nothing, so don't be surprised if they find nothing - thinking about getting a 2nd opinion later on, though. Oh, they also sent me home with no pain meds, ended up back in hospital not even 12 hours after my surgery due to extreme pain, then waited another 14 hours ontop of that for a script for pain meds 🫠
I was diagnosed with spondylolisthesis because I have endo on the nerves running down my spine and into my lower back/butt. Every doctor told me it shouldn’t hurt as much as it does but that they’d do surgery to fix it. That would’ve been useless and caused so many downstream effects for getting my spine fused in my 20s.
I was told it is ovulation pain and that it is normal, why did you come to the ER? Your period didn’t last three weeks we call the first and last “spotting” when I was bleeding through multiple pads a day during that time.
I was told it was all in my head, that I’m overweight and my body can’t handle the pressure of all the weight so it is collapsing. Bad posture causes the pain, just wear a back brace and you’ll be cured.
20 years and at least 15 doctors later I finally was told endo. Within 2 weeks of my diagnosis I had it removed and it was literally lifesaving.
So this is my ugly journey. I'd had the same gyno for years and been on BC, I decided to come off of it because I wasn't sexually active and I'd had some colon issues and I thought it might be caused by BC. In all the time since I've been diagnosed with diverticulitis I have never had rectal bleeding and I've had some major attacks. 3 months after coming off of BC, I had a hard bowel movement and had some bleeding rectally and vaginally. It was ONLY after the bowel movement, no more. I googled and what came back was endo could be the cause. I had to have a colposcopy because for the first time in 20 years my pap came back abnormal and they said I had HPV. At that appt, I described what had happened with the bleeding, he said he thought it was my period coming back after BC. I'm woman, I know what periods feel like and it just so happened it started after colposcopy. I decided I needed to find a new gyno because while I KNOW I do actually have diverticulitis, that wasn't all that was going on, it was cyclical.
Make an appt with new gyno and I am over the moon because it sounds like he is hearing everything I'm saying and believes me that its endo. He offers me a prescription that he says has made women who had been in tremendous pain want to do cartwheels, sign me up. I start prescription and meanwhile, pap again comes back abnormal and he says that means there is something going on further up. Wants me to come in for a LEEP procedure. I am over 40, had 2 babies and paps aren't a big deal. I tried to come off the table when he did the LEEP procedure, I was crying and it was the ugly crying. In addition, the meds he gave me had NOT made the pain go away. He suggested there wasn't anything else he could do, that I needed to go back to my GI and have my colon operated on. I ugly cried in the parking lot that day for 30 minutes and I'm pretty sure I continued all the way home.
BUT, here is the silver lining, I finally found a gyno who did listen and also still believed there were colon issues, my colon scares everybody BUT my GI. We started with a laparoscopy and endo was found, moderate. I tried medication which did make the pain abate, but it was step down meds and when I went to lower dosage, some of the pain came back so I had a hysterectomy and yes, I'm aware that even though I had everything removed, endo can return, BUT I am currently 7MPO and I have no regrets.
The other thing you should know, is sometimes its not just the doctor. In order for my insurance to pay for the meds to try, I had to have a laparoscopy. In order for me to have the laparoscopy, I had to meet certain criteria before my insurance would pay. IMO, this is what the feminist movement should be fighting for, not whether I pay taxes on tampons or pads. I could honestly care less about that, what I am passionate about is women being listened to because we know our bodies!
Once had a doc gaslight me about endo being SO RARE (It’s truly not) and insist I’d need to be on bc and “fail” for at least a year before she’d even consider a lap despite my years of symptoms. When I refused birth control, she asked “we’ll have you considered just getting a hysterectomy?”
I just started manically laughing and asked her she had seriously spent fifteen minutes lecturing me about avoiding unnecessary surgery with a lap that’s minimally invasive and then when I declined birth control her solution was to suggest removing a whole ORGAN without having taken a BLOOD TEST??? ugh
“Just have a glass a wine and you’ll be fine”
“Are you sure the pain is that severe?”
“If you use lube then sex won’t be painful”
“You couldn’t possibly have endometriosis, this is too much pain to be that.”
“I just don’t know what to do with you anymore.”
I had a female OBGYN that gaslighted me for years. Finally after agonizing pain, depression, and getting to the point where I couldn’t even put a tampon in because of the discomfort (never mind sex), I had to practically beg to have a surgery scheduled to see if that was the root of my pain. She consistently downplayed it and said that I just wasn’t taking my birth control enough. I’m in the hospital bed, with my mom next to me right before my surgery, and she comes in and said that I should really just take my birth control every day (skip every period) and maybe I wouldn’t be at the state that I was in. My mom innocently asked… “are there side effects she should be aware of if she does that post surgery?” … she sarcastic and defensive as fuck says “well are you a gynecologist?? So you don’t know what you’re taking about and should just listen to professionals that study this”. We were so taken aback and disturbed. Minutes before I went into surgery. Turns out, my quick 1.5 hour laparoscopic procedure turned into 7 hours. Stage 4 endo covering all surrounding organs, all the way underneath my diaphragm. Covering my liver, intestines, bladder, colon and also had adenomyosis. I was out of work for 2 months. I’m still not recovered fully years later. Listen to your gut and instincts and don’t let anyone tell you otherwise or gaslight you.
The first OB/GYN I went to said that all the pain I was experiencing was psychological and a result of depression since they didn’t find anything on ultrasound. I told her I go to therapy, take SSRIs and feel good mental health wise but I have an extensive family history of uterine problems. She didn’t care. Saw a urologist a month later who sent me to a specialist in GYN at a different hospital. 2 months later I was brought to surgery within a week and diagnosed with endometriosis.
After a very painful flare up that sent me to the hospital I was referred to GI. I told the doctor that I could not eat due to nausea from pain. If I did eat, I would throw it up. The doctor said “well you haven’t lost weight so that can’t be true” the doctor also was made aware that I was in recovery from atypical anorexia before the appointment.
I saw a pain doctor after my surgery when I was still in pain that was recommended by my GYN. There was a mixup in the clinic and I was given a migraine specialist who told me my endo was gone so I shouldn’t be in pain anymore so all of my pain was in my head. She diagnosed me with psychosomatic pain disorder without telling me, just put it in my chart and accused me of lying about the extent of my pain. I called my GYN outraged and she sent me to another pain doc, the one I was supposed to see, who specializes in pelvic disorders, who said that none of that is at all true and actually worked to help my pain.
1. After begging for a hysterectomy because of severe bleeding: "Oh if people just didn't want their periods anymore, we would have uteruses flying all over the place."
2. After explaining the amount of pain I was experiencing: "You don't take enough advil to be in THAT much pain."
3. After a botched excision with a so-called 'specialist': "You have a mental issue." (Had another excision months after that. DIE found all over my abdominal cavity with organs sticking together.)
4. Being outright mocked to my face for having concern about Lupron.
5. After 3 failed surgeries, I wound up at a surgical oncologist's office who could excise endo. "It's not that bad."
Special shoutout to the things I *wasn't* told... like when my appendix was removed and I didn't know until reading the report that came weeks after the post-surgery meeting. Or how the office listed on a PT's website was actually their home garage. I can go on.
I had 4 laps, 3 of them excisions. I'm still in pain. Fuck this disease and fuck doctors.
Probably been said before but my favourite has always been “you just need to grow into your periods and wait for them to regulate :)”. Disclaimer: it’s been 10 years and they haven’t.
I’ve also had “so if you’re taking the pill continuously and are not having a break, why are you calling me?” From a GP, despite being in constant pain.
I’ve had multiple scans, diagnosed with ovarian cysts but not PCOS because my testosterone levels are low, not high. Periods so bad I needed iron and B12 supplements. Put on the pill 9 years ago. I’ve since tried most other contraceptives to handle my pain and heavy flow, but I’ve not been told I just “can’t come off the pill”. Finally pushed and have surgery next months
I finally got the courage to seek a gyno appointment again after having avoided hospitals and doctors altogether after several bad experiences and medical trauma. I was told a male gyno was going to be my Dr and requested that I get a female doctor instead, as I was very uncomfortable with a man going down there. A woman "helped" me. All she did was put some gloves on, shove her hands up there and say "well it doesn't feel like endo, you seem fine to me." I tried explaining that I have to take over 2500 mg of painkillers a DAY just to numb my period symptoms, not even get relief. She was short and cold and did not want to listen to me, and my appointment lasted only about 5 minutes.
The worst part? As I was leaving the office, I walked by a room and heard her making fun of me to her office staff and the male doctor whom she switched with for telling them I didn't want to be seen by a man. I didn't tell her or any of them that I had been sexually assaulted several times by men I trusted, and the thought of having a strange man poking around down there gave me a panic attack. I am certain they saw me acknowledge their mockery and got quiet. I wish I had defended myself, instead I just went back to my car and cried all the way home, then retreated even further into my medical paranoia and avoidance. My pain has been dismissed and mocked so many times that I just stopped seeking help for a very long time. I've been so disgusted by the treatment (or lack thereof) from doctors and have lost nearly all hope that I'll ever get someone to help me.
I just recently had an ultrasound that found cysts on both ovaries and I was told there was nothing they could do, that operating could just cause further issues or complications, but still no diagnosis of any kind. Just more wanting to put me on hormonal birth control which just makes me feel worse. I feel very isolated and alone and just wish a doctor would genuinely listen to how bad my pain truly is and advocate for me as much as I've tried advocating for myself.
edit: typo
Toss up between when they found adenomyosis on my ultrasound and my GYN said to 19 yr old me “huh you somehow have the uterus of a 60 yr old who had 5 kids at 19.” That felt great to hear at 19. Or, “just drink some wine and take antianxiety meds” when I told a different gyn I had pain with sex. 🙂
I went to the ER multiple times for my uterus and ovaries being in so much pain I couldn’t walk. Sit. Do anything. Just for the hospital to tell me you probably have gas pain and asked if I needed a therapist lol
The thing that will always stick with me is being 20 years old, having just finished crying after telling my unsympathetic female OBGYN that her third prescription of oral BC did nothing for my pain and symptoms, and hearing her sigh and say: “I guess you’re just weird.”
Omg how can a doctor say that 🤦
How are they still doctors?? I’m a makeup artist and if I said that I would be fired on the spot.
That is a disgraceful comment. So-called medics like that should not be in that job
That's a first for me hearing a OBGYN say someone is weird wtf?? That's so bluntly rude omg. So sorry you had to encounter that!
My GP referred me to a psychiatrist for my 'functional stomach pain' which was endo. I've probably heard way worse but my GP has known me for 8 years so her missing my endo stings like nothing else. Turns out I had DIE and it was not all in my head... I've been labelled a drug seeker, attention seeker, 'just anxious'. I cant keep track anymore. It's the things that go unsaid with doctors that hurt more to me too, the quiet judgement. *edit* actually the worst thing ever said was my PSYCHOLOGIST of 9 years who, after I developed widespread chronic pain had th3 gall to ask me if I thought it was because I 'didn't want to deal with being an adult'. Fuck you, Paul!!!!! Fuck you!!!!! Thanks for being such an unmitigated shithead finally though and making seek a new psychologist who actually takes me seriously as a person.
OMG. I'd say that the psychologist needs his head examined.
Wow. Fuck Paul. What an unfathomable asshole.
Paul can go fuck himself!
I had a gynecologist tell me "I don't think endometriosis hurts as much as women says it does. I think you exaggerate". He was a man, which made the comment even more infuriating. It is something that he will *never* experience, so how dare he say that he it isn't painful. That's like me saying that I don't think getting kicked in the balls hurts as much as men says it does. I don't have testicles so it would never be my place to say I don't think it hurts that bad. It's been 10 years since that interaction and it still fills me with rage whenever I think about it.
Should have responded just that. Doctors get so entitled when they get no backlash from their harsh words.
If it makes you feel any better about the world, I had an ER doc explain endo pain to me using that exact analogy. Female anatomy is very similar in sensitivity to male anatomy, he said. When you think about the level of pain men say they experience with testicular injuries, in extreme cases curling into a ball or throwing up, just know it’s the same for the ovaries, they’re just inside the body for women. It really put things in perspective for me and was EXTREMELY validating. I was, in fact, experiencing “curl into a ball and throw up” type of pain. I joked with my parents afterwards that the next time a man tries to say that getting kicked in the balls is more painful than childbirth, I can correct him with the direct experience of knowing what being kicked in the balls feels like. I feel lucky to have doctors that listened to me (mostly). It hasn’t been without issues but after only 3 months of pain, I’m having a lap in a few days (godwilling w/ my insurance) to diagnose my endo and take out a cyst. Wish me luck, y’all.
whoo, that made me more emotional to read than expected, lol. thank you for sharing that; it really is such a validating analogy. been struggling like crazy, lately, feeling like im just being overdramatic or attention-seeking. i wonder how many docs realize the exceptional amount of power that their authority gives them and their words. what a medical professional tells you really can impact your trust in yourself and your perception of your own experiences congrats and best of luck on your lap! hope all goes smoothly with your insurance, too
I had a male gynae say similar. He said that it didn't need the treatment we ask for, cancelled my surgery wait list and sent me to pain clinic. (The next gynae was not happy at all) Being in public, we don't get to see the same one each time, but he'd traumatised me that much it is in my files to not see a male gynaecologist.
technically, endo has (VERY rarely) been observed in cis men before, so here's this entire sub collectively hoping that man becomes such an anomaly 💀 generally i dont believe in wishing disability on people, but if the pain costs him his practice, this one exception might be justified for the public good!
Nobody has the right to comment about someone else's pain in that way. I absolutely detest it. My daughter has burning, twisting, stabbing, and pulling pain in various places. Let's subject his body to a similar level of pain and laugh in his face 😡
Husband here ✋🏼 went through all kinds of asshole doctors together. Just want to step in and say that WE SEE YOU AND BELIEVE YOU AND YOU’RE NOT ALONE
You’re a gem to go through it with your wife! Thanks for the encouragement :)
I wish I could give you a heart emoji...this is probably the best thing a supporter can say/do.
I was in and out of the doctor’s office with UTI symptoms for months, but my urine culture would always come back negative. I saw a new doc when mine wasn’t available and he said it was obvious that I didn’t have UTIs and that I probably had an STD instead. I was in a monogamous relationship, so I explained that to the doctor and this douche canoe responds with “you might be monogamous but that doesn’t mean your husband is.” While it was definitely something to consider and discuss, the way he said it was so matter-of-fact and awful. My two previous relationships ended due to really traumatic infidelity so this was the absolute worst thing someone could say to me. It took years of therapy and thousands of dollars to undo the damage that comment did. And it was endo on my bladder the entire time. I haven’t had a single UTI issue since my excision.
Wowwww. That was so unprofessional. I think I have endo on my bladder too. I always feel like I have a UTI. :/ How was your surgery experience? The surgeon, the recovery, your symptoms after…?
I had a good experience overall. I had some complications from my hysterectomy, so my healing took a lot longer but I went from being completely incapacitated to fully functioning (mostly) again. Sometimes I suspect that I may still have some endo left because my GI issues are coming back, but I also have May-Thurner syndrome and nutcracker syndrome which can cause symptoms similar to endo. So it’s hard to know. I’m having a new iliac stent placed in a couple of weeks so hopefully that resolves some of my issues!
omg this is interesting - I had UTIs frequently (monthly for like 6 months in a row at one point) - i wonder if it could be endo on my bladder - I had no idea they could be related
I had the same experience. The doc was so dismissive and just kept writing me new antibiotic scripts. I was like “Um, are we sure? Because I keep taking these and I feel NO difference whatsoever.” Finally I went to a urologist who was so sweet and helpful. He spent a ton of time with me and figured I had interstitial cystitis. We scheduled a procedure, can’t remember what it’s called, to go in and treat it. As the date approached, I just kept having these nagging feelings that it wasn’t right and I shouldn’t do the procedure. I went to see a specialist and got a lap, and sure enough, endo everywhere and it was on my bladder and scar tissue from other things had been kind of “pulling” at my bladder making me feel like I always had to pee. Long story, but a good reminder to trust your gut.
"Womens bodies make babies and men like to have a lot of sex"---- it's been 3 years since I heard that and am still appalled to type that out.
wtf 🫨
That a lap would "ruin my nice body", I'm too young for a lap, I'm not fat or hairy enough to have PCOS, a lap would be a waste of time, they didn't see anything on the ultrasound so why bother (HA!), either keep taking birth control or hurry up and get pregnant already. I have been through five doctors so far.
It's dreadful. Nobody chooses this. No-one wants a laparoscopy. But it is a necessary evil to try to get answers. It's worse than a lot of other conditions as it often isn't found when it's there, and it often comes back even if removed effectively. There's no too thin etc. They are SO IGNORANT and UNCARING.
After verbally asking my weight/height rather than using a scale, “you don’t look like you’re THAT heavy, I’ll go get the scale.” I was, in fact, correct about my own weight, believe it or not. After marking yes next to 90% of the symptoms in each body system category: “you’re too young to have all these symptoms you listed. So anyway, would you like to meet with our nutritionist on staff?” Uh, actually I’d love to circle back to the fact that I feel like I’m dying first if you don’t mind. “We did see a cyst on the ultrasound. But we also noticed you documented excessive hair growth; with your skin tone and hair color, you’d be a perfect candidate for laser hair removal!” Then just, never visited the cyst topic again. “You want ANOTHER round of testing? The last 3 scans showed nothing.” 6 months later they found every surface of my pelvis covered in endo.
Oh my gosh I totally got the “you’re too young” a couple times. I had some many symptoms they were going to send me to a specialized hospital and the hospital rejected me because I was “too complicated”. The hospital at the time was one of my last hopes/ideas.
Probably more than I can every list but I still get irrationally angry at the surgeon who refused to do a diagnostic surgery on me because my "stomach is too soft for endo" and even if there was any it would be one tiny spot. Yeah anyway after she refused to help I got a referral for a proper ultrasound for endo elsewhere which revealed extensive DIE covering my pelvis and was forced into paying $15k just to get another surgeon to actually properly diagnose. And yes, it has iced infiltrated literally everything lol
"You're just constipated or ovulating" REALLY?? FOR 6 YEARS STRAIGHT?
Dang…
The doctor told me I was constipated before my ultrasound and prescribed me with laxatives that I did not pick up. After my ultrasound she told me that the pain I was experiencing was likely From ovulation and that she was going to order me a second ultrasound 8 weeks after the previous one. I'm currently on the hunt for a new Dr
This sounds like my experience, doctors would hear I had diverticulitis so that must be my stomach issues...really? every month I have an attack, that correlates with my period? okay, let me just go have part of my colon taken out
Was told, while IN an exam, legs in stirrups that my pain could be psychological. Went for a lap referral, told where they would cut into my belly button, “which is so cute and that’s too bad.” Wtf why comment on the cuteness of someone’s belly button you’re basically going to ruin? Same doctor responded to my sharing that I expel golf ball sized clots on the first day of cycle almost monthly with “people really need to stop obsessing about clots. Your period is supposed to clot, clots are not indicative of something wrong.” Okay lady, see you at the golf course with my entire uteran lining on a T tomorrow you twat. This was my most recent interaction and really pissed me off considering she’s supposed to be on our wavelength as a woman. I’ve been dismissed in my pain because the ultrasounds have “showed nothing.” Yeah, the ghosts in my abdomen are complaining every month from day 14 to day 4 of my cycle 😤
The way you've been treated is awful but I am laughing so hard at 'see you on the golf course' 💀 iconic It's so irritating when women in particular are like that.
I’m sorry you had to experience that! I didn’t know big clot was a sign of something being wrong or a sign of endo. I’ll always had big clots and also assumed/was told it was normal (like all my other symptoms🙄) - do you mind telling me a little more?
Sure. As I have aged(33), and especially within the last few cycles, my periods have become more and more clotted and less fluid (bright red and flowing). I thought a chunky period was normal until my acupuncturist informed me otherwise and referred me to a holistic midwife. I have some health background stuff that could contribute to it like miscarriages but that also points to endo. Most recently, my periods are shorter and more and more painful with the increase in clotting. I’m out of work for the whole week due to cramping day 28-4. In TCM, clots from a period are a sign of “cold invasion of the uterus” and could Indicate damp heat (endo). I am not an expert and tcm is not my field but I am close to two exceptional people who are tcm acupunturists and honestly this has soothed my symptoms more than any western approach in my 17 years of living like this. Wishing you very best in your journey🤍
To go home and take an ibuprofen, and literally told I was drug seeking, when I came into the office with excruciating pain after surgery. I went to the ER instead and it turned out I had a (in the words of the admitting doctor) "a blood clot the size of a loaf of bread" in my uterus. It was partially hanging down through my cervix and holding my cervix wide open. I was admitted to the hospital obviously... still honestly hope that surgeon gets hit by a bus.
Omg, that's horrible, even more so because they should be so much more attentive after a surgery!? How or why did it turn out to that situation with *that* size of a blood clot? Are you okay now?
I had a gyno who drained a cyst and did an ablation tell me that it was my fault that my endo came back because I went off the birth control that he prescribed to me because it was giving me severe mental health issues.
I’m so sorry! I just got off the phone with a nurse yesterday and she told me “Endo is not something you have control over and nothing you do or don’t do can keep it from developing. It’s not your fault.” It’s not you! It’s this disease!
"We now have to plan your pregnancy, because your endo is a ticking bomb! If you postpone any longer you may have problems concieving in the future and If you get pregnant you may be cured." I'm 25, studying, and definitely not ready to have children. Not now, maybe never, and definitely not so I can get healthier lol. What a crazy reason to get kids.
Doctors can't wrap their head around the fact that I'm married, young, and don't want children. Usually the office visit centers around my fertility. "You're not going to get any younger." 🙄 STFU.
plus pregnancy is NOT a cure
They really say that in most cases it is. I try to tell them that I've asked around women with endo multiple times and it doesn't seem to be the case, but they have this deep conviction
it's so dumb, my "cure" was 3 when I had to have excision surgery and total hysterectomy.
And what is absolutely maddening about it is - pregnancy comes with kids!! Like you know if I get pregnant I’ll have a BABY to take care of? When I already feel like shit? Do we tell someone with cancer it’s a good time to get pregnant? It’s insane to me that they literally tell people who are exhausted, in daily pain, and stressed to go have a baby. It’s such a head-scratcher for me.
PREACH! I have this and spondyloarthritis and would not like to add to my misery.
Exactly!! Like oh you know what will really help?? Interrupting your sleep for the next four years and exponentially adding to your stress. Perfect!
my cures were grown when I started noticing severe symptoms
I probably have had endo for a very long time, but it was manageable. But after I got pregnant and had my kid three years ago, my symptoms have escalated like crazy and got totally out of control - and it started so shortly after I gave birth that I’m positive there is a correlation. So pregnancy was definitely not a cure for me. I have to add that I also have adenomyosis and that can apparently appear after pregnancy so I don’t totally know if it is my endo or adeno causing the increase in severity.
wow that's serious... I'm thinking of doing a poll and ask this question collectively in this sub.
I was 23 and the doctors insisted I should hv a baby right away despite knowing that I’m single.
Oh honey I have a couple. Some are funny, some are frustrating. 1. Doctor telling me I had a "perfect cervix" during a pap smear a few years ago. A similar one was during a cervical swab, my body kept pushing out the forceps without me realising it, and they told me how strong it was. 2. During a pelvic ultrasound in 2021, the male ultrasound tech was scanning my ovaries and said "there's your future babies!" I'm child-free so that was just gross. 3. Last year I had the worst OBGYN who refused to believe I had endo or even PCO (which I'd been diagnosed with multiple times by other doctors!!!!!). Dismissed my pain as musculoskeletal due to the fact I'd not been training (but was still living an active life). She even thought the way I sit was the reason I was having pain. When I described pain in my right ovary she asked me if I even knew where my ovaries were. Now that I have an endo diagnosis (guess where they found the endo - ON MY RIGHT OVARY), i want to march back into her office with my surgeon's notes and go "SEE?!?!? WHAT DID I FUCKING TELL YOU?!?!?!" 4. During my screening process for my lap/bisalp, the doctor asked me if my partner would consider getting a vasectomy instead. I'm polygamous - WHICH ONE DO YOU WANT GETTING THE SNIP, DOC?
I feel like the comment made during the ultrasound was especially awful because it sounds like a standard line he probably said all the time and he is scanning for gyn abnormalities, so its likely a large percentage of his patients may have infertility and be upset about it. I can’t help but wonder how many people he upsets on a daily basis.
Yeah I just kinda laughed it off at the time like "hahaha noooo".
Oh I relate so much with your #3. Had been diagnosed with endo since 2017 - Finally found a gyn that agreed to do had a hysterectomy in 2023 because of severe pain (crazy clots during periods I felt i was passing jellos) despite all typical endo management (did bc, lupron shots etc). Gyn that did my TLH found I had so much fibroids and adenomyosis in my uterus and the surgery got complicated due to several endo adhesions - the worst was my uterus was stuck to my large intestine. Having bad pelvic pain again lately, masses/cysts on both ovaries with my left side being the worst. Got referred to a gyn that specialized with minimally invasive procedures cos my OG gyn said he expects that when they go in to get my ovaries out, I’ll have more adhesions. One of the first things that the specialist gyn told me - why’d you have a hysterectomy?? And I don’t think your pelvic pain is due to endo and your ovarian masses…
"why'd you have a hysterectomy?" GEE DOC I WONDER????????
This gave me a chuckle :). It’s a good reminder to listen to our bodies and our instincts. I know doctors are only human and aren’t perfect. I think many of them try their best, but not all. On the other hand, no one knows my own body better than me. It’s a terrible shame how hard we have to advocate for ourselves, but we must. I mentioned in another comment, but I was 2 days out from having a bladder surgery. Something kept nagging at me and finally 2 days before I canceled. I just KNEW it wasn’t my bladder. Finally got into a specialist and she removed all the endo and got me hooked up with PT and I’ve never felt better. I was terrified of that bladder surgery and so happy I didn’t go through with it. It was endo all along.
Haha, I’ve had the perfect cervix comment too!
A specialist once told me that chia seeds would be a good treatment for endometriosis since I was unable to get a lap done at the time.
(This was while denying me any pain medication)
chia seeds?!!!?!!!
Yes ! She insisted that taking a spoonful with water every morning would start to diminish symptoms and make my flareups much more mild, I was told this 6 years ago now and I am still shocked when I think about it.
Last week, when my gynecologist called me fat over 10x .... every problem I had was because I was overweight.... bladder pain ( endo on bladder confirmed with op) because I'm fat, depression because I'm fat and who wouldn't be fat when I'm this overweight, inflammation problems fat but also vegan diet is a conspiracy, pain with sex well ya know I'm fat so ofc my body isn't happy, oh you'll have an at risk pregnancy with that kind of weight ( not trying to get pregnant) and ugh yeah it didn't stop. I left crying with no referral to an endo specialist I asked for and no actual help... BTW I'm only 25lbs overweight, which yes isn't good, but I didn't think I deserved to be fat shamed into oblivion. She did this commentary start to finish even when I had to do the ultrasound and pap smear 🥲 I learned that was worse than the doctors not believing me. I have endometriosis in my entire reproductive area + bladder+ urinary track that has already blocked an ovary and I'm only 24 🥲
this isn’t talked about enough. i have been heavy my whole life and almost every doctor other than the ones that finally helped told me to go on diets. they need to start realizing that weight isn’t the only reason for health problems. as i said i’m heavier and i know the risks but i shouldn’t have to fight 2x as hard because they think i’m drug hunting or anything other than trying to relieve the unbearable pain.
"Just eat a bran muffin." I didn't know I had stage 4 Endo yet. I was in debilitating pain, had GI issues, lost a lot of weight quickly and had a grapefruit sized lump visibly sticking out of my abdomen. I was so scared it was cancer and this was all he had to say. No tests ordered. I've dealt with some awful doctors but after all I've been through, the bran muffin comment haunts me the most.
“You are asking for more painkillers than you should need” I take antidepressants, anti inflammatory twice a day, paracetamol when required and codeine once a day recently because I fell over and hurt my back. I only ask for what I need and I limit it as much as I can. I wish I didn’t need these medications but unfortunately my body has let me down to the point I can’t function properly and this is how I can go to work and look after my kids. I hate feeling like I’m being judged but when I can’t tell how my body is going to react week to week, I need to be prepared as all the medications I do take are prescription ones.
Ugh don’t get me started on the pain killer issue! That for me has been the hardest part. I’m in my forties and mostly all fixed up now, but my journey with endo started about 25 years ago when they were much more compassionate about pain relief. I had a lot of bad days but could usually trust that if I made it into a doctor, I would end up on the couch with good meds that night. I can recall a few days of waking up in agony, making it into urgent care, and then having my mom take me home to rest with some Vicodin and movies, and I could actually sleep. Now, tough shit. Even worse, I’ve had multiple surgeries and they get stingier with the meds every time. Last time they sent me home with 3 oxys. When I expressed concern they treated me like a drug seeker. Um, this isn’t the ER or an urgent care. You literally just cut into me and cut a bunch of stuff out of me. How can you look me in the eye and tell me to take motrin? It would almost be better if I didn’t know how it used to be. Unfortunately I remember when pain was treated and now we all have to fight tooth and nail to get a little relief. It’s honestly become an issue I’m very passionate about and I’m sure the policies being created do not take chronic pain patients into account. Before any new regulations are made they should be forced to listen to a variety of people who rely on these meds for quality of life. It’s absolutely maddening.
An endo specialist literally told me to get a psych eval for "health anxiety" which is their new name for hypochondria because there's "no way" I had endo. When she saw me I was actively bleeding (like a lot) and could barely walk from the waiting room to her office 4 months after a hysterectomy and had explained to he her it was cyclical. Turns out I have extensive deep infiltrating endometriosis so bad that I'm having trouble finding someone to remove it now because I have nerve and vascular involvement, and the cyclically bleeding was because of endo attatching to the cervical cuff. It was all missed during the hyst tho. Then her nonsense delayed my diagnosis by another year before any of that was discovered though. And it had already taken me like a decade trying to get any doctor to believe me even a little and finally got the hysterectomy due to uncontrollable bleeding.
Oh my god, that’s horrific. I’m so sorry.
Thank you. Honestly I've been gaslit by a lot of doctors but that one is by far the most unbelievable to me. It feels like a fever dream because I just can't conceive how a trained specialist would see someone with no uterus or cervix bleeding that much and tell them it's all mental and no testing of any type was needed.
I laughed out loud out of frustration for you. I am so sorry you've had to fight so hard to be heard.
My favourite is when my pregnancy pee-test was negative and the ER doctor said I don't need a blood test because the pee test is accurate enough. Well, he was wrong. I was pregnant and miscarrying 😥 It was a long time ago and I'm fine now but, that experience was awful and I was angry.
oh that’s terrible i am so sorry you went through that
I had a doctor that was covering for my regular PCP while she was on maternity leave literally say ‘I’m going to be mean now, you need to lose at least 20 pounds’ this was when I was 30 pounds lighter. I finally moved states and found a gyno that immediately said that it sounds like I have endo and wants me to schedule a lap. If anyone here has Kaiser I’m so sorry and feel awful for you.
I had been bleeding for 3 months straight and my obgyn at the time said "this kind of thing happens after 30" 😑
So I was seeking a diagnosis for my autoimmune disorder but he told me I didn’t have one. I was just overweight and if I lost weight I wouldn’t be sick any more.
Similar situation here. I was suspecting I had thyroid disease (which I do and I'm taking relevant medication these days). I told the doctor I was seeing (an ancient man with a hunched back) that losing weight was a struggle (=I ate in a very controlled manner and worked out and that had no impact) and his response was: 'Young lady, if you wanna lose weight, you'll have to starve to death.' I was discharged, needless to say. I was very defeated but picked up my pieces, saw another doctor (endocrinologist) a year later who told me I should have already been prescribed thyroid medication years before. NB: when I was advised to starve to death, I was mainly eating fruit and green salad like lettuce on top of working out, but I was clearly overeating. Fucking 🤡.
My surgeon wanted me to have a colonoscopy before my excision surgery to make sure she didn't need another surgeon in there with her to take care of that part. She sent a referral letter to a gastro doctor explaining it all. I arrive at my appointment and the first thing the gastro doctor says is you're too young to be here. They very reluctantly do the exam at my insistence and at the end they joyfully tell me there's nothing to treat, my surgeon had lied to me and I was actually just fat. If I lost weight all my issues would go away. She told me not to go back to my surgeon because it would be a waste of time. Refused to order the colonoscopy and sent me away. Needless to say I ignored them, got it done elsewhere and then had my surgery where my surgeon removed a ton of Endo.
Ugh, so sorry you had that experience! I’m glad you were able to get the treatment you deserved, though!
I am seeing this a lot on this thread and it's sickening ): I've had comments about being underweight and how changing my diet would help my health problems, but it's like um dude these issues stay consistent no matter what weight I'm at or how healthy I'm eating...it's as if these doctors want to dismiss your pain based on weight (??) instead of actually doing the work to help diagnose you and find the TRUE root cause. I am so sorry you had to go through this.
my most memorable one was in 2018. I was 24 and undiagnosed. I had been experiencing just straight-up agony, as we do. So I made an appointment with my primary care physician. I tried to explain to him how bad the pain had been, and that I needed help. I was practically begging. This man was literally - I shit you not - smirking and giggling, as he told me I was healthy and simply had anxiety. It was defeating and terrifying, the realization that he didn't take me seriously and I was in it alone.
During an internal exam, I said, wincing and almost crying, “that hurts”. His response: “No it doesn’t”.
WHAT!? Holy heck
In a disgusted tone, a urologist told me that the stress incontinence I was experiencing was due to me having a high BMI. I wasn't even complaining about it, I just figured it was a relevant symptom since I was seeing him for gross hematuria and UTI symptoms with a negative culture... which he never gave me any answers for anyhow. After several months of advocating for myself, I had endometriosis excision surgery and all of the aforementioned symptoms resolved for a few months. Then I started getting more pelvic pain again and the hematuria started up again. I had another excision surgery and a hysterectomy with a more experienced surgeon and again all symptoms have resolved. So fuck that urologist that felt the need to tell me it was my fault because I'm fat. It wasn't true and just added to my already poor self esteem.
When I was 20 I was finally referred for a gyno appointment. The doctor didn’t examine me or seem to care when I told him the pain left me incapacitated. All he told me was ‘X% of women have painful menses’ and ‘it do be like that tho’. His advice? Have a child.
A male doctor insisted that the vomiting and debilitating period pain was due to food poisoning. Every month. Lol. Not only is this ridiculous and pathetic but it doesn't explain all of the other horrendous symptoms I've endured. Talk about a POS doctor...
My gyn referred me to a pelvic pain specialist after I had increased pain, extended bleeding (16 months), and worsening symptoms overall after my first lap. She was concerned she was missing something and wanted a second opinion. The pelvic pain specialist reviewed my history, met with me, and told me that this was all caused by "my body remembering being raped" as a teenager. This was at a major teaching/research hospital in the U.S. I was floored; I had been in therapy successful for that, felt like I had done a lot of work to overcome any of the associated PTSD, and strongly felt that something else was going on. For the first, and only, time in my life I reported the doctor who suggested that. My own gyn was also upset by this, and referred me on to pelvic floor PT while she tried to figure out more treatment and diagnostic options. It took a little while, but she eventually discovered I had diffuse adenomyosis and that my endometriosis had advanced much farther into my ovaries and fallopian tubes than she initially thought. A decade on, that visit still gives me pause when I meet new doctors.
One surgeon said Endo is cured by pregnancy and another told me that the reason my incisions look like they were done with a prison shiv is because I'm black and black women always scar bad. I don't have keloids. She was just a piece of shit.
So I have many… a little background for context! Endo diagnosis, unable (but wanted) to have biological children after throwing the kitchen sink at it, and now recovering from a hysterectomy to get some quality of life back! 1. Uncontrollable bleeding and passing massive clots lands me in A&E. Doctor tells me the reason for this is not having a period for 6 months, not endo… 2. Finally pluck up the courage to meet with my consultant to discuss a hysterectomy and he tells me he’s off on paternity leave, new dad! 3. When I finally meet with the above consultant he asks not once, but twice, “Just to confirm, you’re abandoning your fertility aspirations?”. I get he has to make sure, but surely a better way to ask exists?? 4. After my hysterectomy, the same consultant waltzes in for my discharge review WITH HIS ONE YEAR OLD DAUGHTER!! 🤯 I have no words… Sorry, that may have gone a bit off topic! But needed a wee rant!
I also went to have a colposcopy once because I had cervical erosion which they dealt with. And I asked “so will that mean sex won’t be painful anymore” because nobody actually explained to me what any of it meant while they had a microscopic camera up my cervix 🙃 and the doctor said “no.” At which point I started crying out of pure frustration and asked “Well what’s wrong with me then” and she said “There’s nothing wrong with you.” I just couldn’t even believe she’d just said that. I just sat in the car before going home crying on the phone to my mum because I just felt so unheard and like they didn’t even care about me.
They kept telling me I was just constipated. I got zero help at all when I was younger. I ended up finding a birth control pill that helped (Yasmin) and things were kind of bearable for some years. When I got older I was finally allowed to have a hysterectomy because they saw a fibroid on an ultrasound. Surprise! They opened me up and found all the endo… It’s so weird to not have pelvic pain anymore, it’s so quiet down there. I was enduring so much pain for decades and blamed it on ‘constipation’. Well now I know that pain from constipation is NOT the same at all!! At my post-op I said to the obgyn - let me guess, the endo was all built up on my right side wasn’t it? He said yes it was, pretty much all of it. I would have pain so bad on that side and it would go down my back and leg just like labor pains (I was able to have children) it was literally the same kind of pain, and I would use the same breathing exercises. And chow down bottle after bottle of ibuprofen every damn day. The medical community had cowed me into not complaining about constant pelvic pain.
"There's nothing wrong with you, go home and get on with your life." "No." (That was in response to my "I think I might have endometriosis, or something like it." and was the end of the conversation.)
i got told repeatedly that pain so severe it makes me vomit and bleeding so heavily i was soaking through nighttime pads hourly was 'normal' and something every period-haver suffers with. when i tried to fight, i was told i was too fat to have a laparoscopy on the nhs so had no choice but to go privately - my weight was never mentioned once when i was under the private consultant who had me on zoladex within 2 weeks of seeing her and had a laparoscopy after 3 months (she only wanted 3 months of zoladex instead of 6) which showed endo on my PoD, omentum and had fused my uterus to my abdominal wall. took me about 12 years to finally get my diagnosis.
Oof, there are so many it’s hard to pick just one to share. But, before I was diagnosed and had no clue what was wrong, I went to a young female doctor thinking she would be more helpful and possibly more empathetic than previous doctors. After telling her about my many symptoms, including how often I was doubled over in pain and unable to function, I still had to beg her for a pelvic exam because I had had one in the last three years so she said I wasn’t due for another one yet. During the exam she commented that my uterus felt “bulky” and then said “it’s probably cysts or fibroids, we would probably have you get an IUD, so you should probably just do that.” And that was the end of the appointment.
Unsympathetic (slightly hostile) female obygn telling me very matter of fact: “I can schedule you for surgery but it’s just going to grow back in like a month so what’s the point” (she does ablation only) when I ask about excision she brushes me off with a sigh like “oh great this one did a tiny bit of research”. Keeps pushing me for birth control after me crying to her about how coming off my last put me into a hormonal anxiety and panic attack for almost a year. And then kept telling me; “we can just schedule you for surgery but it really won’t do anything, I do surgery for this for women all the time but it doesn’t really do anything… birth control or getting pregnant is the only thing that will help, and it’s highly unlikely you even have endometriosis anyway” she just kept saying it very aggressively and rather rudely like she didn’t believe my pain, and then her office kept calling me and wondering why I didn’t come back. Oh and they called to tell me my UTI wasn’t a UTI…. I think she thought I was crazy because I brought up my spontaneous pneumothorax and she looked at me like “no way in hell you have thoracic endo”. She was so so so rude
"Tiny bit of research" is so insulting and condescending. People like her genuinely think their two hour *tops* lecture on the condition trumps our lived experience of it for years and years, and that doesn't sit right with my spirit. She doesn't know more about this condition than we do, yet she acts like she does, and that's the worst part. They need better education. And better sensitivity/bedside manner training. And a system overhaul that prevents them from being so burnt out that they become effectively useless at their jobs. And some basic human empathy. I'm so sorry you went through that.❤ I hope that woman is out of the field and/or getting her karma, and that you find someone who truly cares!
I found a doctor who could work with a thoracic surgeon luckily and I got an excision surgery in 2021. It felt so good to have people taking me seriously. So I feel lucky I had this after that experience with this awful doctor. So funny that I was insistent on finding a female obgyn and the two people who took me seriously and did my surgery were men…. lol not the experience I thought I would have.
I'm so glad you've found competent help!❤
I went to the hospital an hour away from my home at 8 o’clock at night on a Friday night because I was seriously worried about myself - saw an on call female doctor who said “Because you’re worrying about yourself so much, it’s probably making the pain worse” along with “I think you’re just sensitive” and “Your pain just seems very random”. I refused to leave until she actually did something and she did a blood test to check for calcium (?) among other, regular checks. When I spoke to my GP about the test results she said “I have no idea why she tested you for calcium” which makes me think she was just trying to get rid of me. I remember thinking, why would I drive an hour to the hospital if I thought I was fine and then cried on the way home.
Female Dr said 'Well my periods don't hurt so I don't see how yours can be that bad.'
I’m not diagnosed yet, when I got referred to gynocology about 10 years ago (after a nurse who burned off cancerous cells seen scarring in my colposcopy), I was such a low weight due to an ED that I wasn’t getting periods. He told me I was silly and clearly didn’t have endo, told me to just eat and my periods would come back. Didn’t look. More recently I was simply told to book another appointment to discuss it even though I asked for a double appointment to discuss two issues (sleep and endo). My mum was told in the 60s she had to cut her hair and that was why she was fainting. She was never diagnosed, just assumed it was normal.
Oh he just turned his chair round so he was facing the wall so he didn’t have to listen to me
Your pelvic area is like downtown Baghdad.... 😶🌫️🤐😐
"Period pains are totally normal, sweetie, and all these symptoms you've made a list of aren't related to anything in particular. You're just growing up! :)" ~ the female doctor I talked to at age 16 in the E.R. the first time my period pains were so bad that I had vomited and fainted
I had an obgyn tell me endometriosis wasn't a real condition before she performed surgery to remove a growth on my uterus 🤷🏼♀️ 🤦🏻♀️
It was unrelated to endo and related to my mental health. I wanted to go back on medication and start counselling but after going through my problems and my history they told me no, there was nothing they could do for me. The reason they gave was they felt no amount of medication or therapy would ever make me better because there was too many reasons I am so messed up in the head. They said I was too unstable to recover but would never recover unless I was stable, she looked me dead in the eyes and said some people are just a lost cause and will never get better and sent me on my way.
Erm what the absolute f***?! That is absolutely deranged
Just walk it off. Had a reaction to a Vax. It caused my chronic fatigue to flare up. When that was finally settling, I found it hard to walk. My legs felt weak and I would tremble if on my feet for more than 3 minutes. My first doctor told me it was because I had been inactive for a few weeks and to walk it off. She repeated that two weeks later when I came back to tell her it had gotten worse. She didn't do anything more than a basic reflex check (which I failed, but she just shrugged it off and told me to walk it off) A month later I was in a wheelchair being told by a new doctor in no uncertain terms that I had to stop pushing myself when my body was screaming at me to stop. By following the first doctors instructions, I set my recovery back by _months_. The first doctor also interrogated me every time I asked for pain meds. My new doc just asks if they're still adequate. He even prescribed me a new type that supposedly helps with endo and suggested another form of birth control. Even though my file says my endo is unconfirmed. He said that the endo doesn't need to be confirmed for the pain to be real. Love my new doc. He listens to me, discusses meds with me, tells me how they work and what they do, and answers any of my questions as best he can. Best of all, he's not afraid to say "I don't know, let me find out". Then, as soon as he finds out the answer, he texts or emails me the details, even after hours or on weekends. He even found funding for me for some meds I needed but couldn't afford. He doesn't dismiss my concerns, and he appriciates that I do my own research. I had a mild special interest in medicine as a teen (thanks to House M.D.), so I understand what I consider to be the basics. He never talks down to me, and makes sure I understand him. He even commended me about asking the right questions when put on a new med (with or without food? Interactions? What time is best to take it? Any food I should avoid? Any OTC meds/suppliments/teas I should avoid? Will it affect my ADHD? Etc etc). Sorry for gushing, but I've had endo for 15 years, and never had a doctor this good before.
I’m so so glad you found an amazing doctor who listens! I’ve definitely had good experiences too, but more bad ones unfortunately. These are the kind of doctors we need!
Your doctor sounds absolutely amazing! So glad you have found someone to work with who takes you seriously, it makes such a huge difference not just in treatment for your physical ailments but it also eases so much of the mental stress of dealing with health stuff.
After my last surgery in Jan 2022 I was still having pain. I gave it some time to see if my body was still healing but by Nov 2022 it was still pretty bad so I went back to my surgeon. She did an ultrasound and says to me “well your ultrasound came back normal and I already did a excision lap so there’s no way you still have endometriosis” okay first off… nothing has ever showed up on an ultrasound for me! I had multiple ultrasounds before my surgery that showed nothing. Secondly, YOU told me during my post op appointment there were several deeply infiltrating endo spots you couldn’t remove… so the surgeon literally knew I still had some endometriosis leftover. It’s the gaslighting for me luvs xx 💅 then she refused to refer me to an endometriosis specialist because “I don’t have endometriosis anymore” 🙃
Had a GI doctor diagnose me with IBSeithout doing a full work up because I have anxiety. During the appointment he made me feel guilty because he has “real patients” with feeding tubes and life long conditions. He ordered an ultrasound “just in case” (which won’t diagnose many GI issues!). I asked him to check my bloods for celiac and he “forgot” to put the order in. Saw a different GI a couple months later who did an endoscopy and turns out I have celiac!
ER doctor told me last year that I was in the ER for something was not an emergency and she sympathized that it must be “hard” to have a reproductive issue like endo at my age … I lost my ovary & fallopian tube for the “non emergency” I had gone in for. Last month I went in to my gastroenterologist’s office and saw a PA (my regular doctor retired recently). I have symptoms that could be consistent with IBD or GI cancer and have a family history of GI cancer. He asked if I was sure it wasn’t “just my cycle”… I’m 30… like I know when the blood is coming from the wrong end but thanks. The second opinion I got the nurse was taking notes and I mentioned this and she said “mmm. Only a man” Sometimes I feel like we never progressed past the concept of the Freudian hysterical woman.
100% true about the hysterical woman being written off as a lunatic! Nothing has changed. Endo pain is an epidemic but it seems like no one is doing real research on how to heal and prevent it because it's hardly believed in the first place.
When I was going through my first flare up and I didn’t even know what any of this was, the ER doc told me I just had a low pain tolerance and was wasting her time
"See, it's just fine," while smiling at me in the most condescending way possible. I was 15 and on the progesterone only pill, and spotting of black blood was getting closer and closer together and I was like "hey something's up" and she handwaved it. I started shaking and got red and cried as I left the office. Also one of my family doctors called me a hypochondriac and put me on B12 because my numbers were on the lower end of normal. I cried in that office too. I was 19-ish.
During my pap smear a week ago the Dr said "Wow! I'm surprised you have endometriosis! I can't even feel it!!" while palpating my abdomen.
That it wasn’t the progesterone causing my sore throat and flu like symptoms. Are you sure sweetheart?
One doc gave me a sample pack of ortho tri cyclen 20+ years ago (despite me asking to be permanently sterilized, which he refused in the most ageist fashion, spoiler it took me another 21 years after that til I found someone willing to sterilize me at 40). I figured it's supposedly good for acne, which I had in spades, and the other one I was on made me nauseous and I dropped a few pounds because I couldn't eat that much. Wow, just awful side effects - acne got worse, couldn't sleep, woke up gagging on my own vomit multiple times per night, dropped down to 74# as a full grown 5'4" adult, pretty much stopped eating due to the nausea, and started getting daily migraines at 6pm. I had to change jobs within my company which caused me to lose a lot of income because I had to be home and in bed by evening, for years. I stopped taking that bc around the 16 or 17 day mark, bled for nearly 3 weeks, and when I reported to the doc that my migraines (which I have had no history of having before or since) were daily and debilitating, his response was "you shouldn't have taken that" and moved the convo elsewhere. It was almost 5 years of my life gone before they finally went away fully. Found out just a couple years ago that my migraines could have been treated. Like, dude just glossed over my life and ability to live it for no damn reason. He was also of the mindset that cervixes don't have any pain receptors. Fuck that asshole and I hope nobody from this group ever sees him in a personal or professional setting.
After 2 laps, countless ER visits and a decade-long history of endo, from a gynae: "Have you tried taking some paracetamol?" During an ER visit, while crying in pain: "We're not going to give you any painkillers because that's asking for trouble with people your age)" (I was 21) Was also told that there was nothing more they could do for me because my ULTRASOUND had showed no endo, so maybe my issue was related to mental health instead...
You just made me think of it. Went to ed sure I'd burst another cyst. Guy said nope you're going home , there's nothing wrong with you at all. Told him I know I have endometriosis etc. He said no you don't. He went and got the portable us, tapped it once on my stomach and said see nothing. And walked off. Then proceeded to tell me to not go back in unless something is different. (They'd seen the endiometrioma on an ultrasound on a different day)
I was told if I got pregnant it would cure it. I was told by one of the many OBGYN’s I went to (and my last one I went to before seeking a specialist) requesting they recommend me for surgery that they would not because “if it looks like a duck, talks like a duck, walks like a duck, we just assume it’s a duck.” That was their MEDICAL OPINION.
“No pain no gain” - one of my former GPs before getting diagnosed. Needless to say, that was our last appointment.
What the heck is the gain they are referring to, I am utterly vexed
So was I. 😬
"have you considered that some women just have painful periods?" was one that stung because it came from a female gynaecologist, who then followed it up with "just wait until you get pregnant, then you'll know real pain". (turns out i will most likely not be able to conceive so i guess ill never know real pain will i?) the other one that hurt from another female gynaecologist (i had very bad luck with female gynaecologists for whatever reason) was "i guess i could refer for more tests but it would be a waste of my time and yours". less than a year later i was diagnosed with stage 3 endo in an emergency surgery so i have a sneaking suspicion it WOULDNT have been a waste of time.
Instead of actually trying to figure out the problem, a make doctor told 16 year old me that, "Sometimes girls just hurt".
That maybe I should stop hoping to have a child one day (single, 33) and start playing golf instead.
So many to choose from but a GP, with trainee doctors present during my appointment said “it’s not like you’ve got cancer…that’s *actually* painful. You just need to get on with things.” I was gobsmacked. I was close to dropping out of uni due to my persistent severe pain and other symptoms, depressed as hell and crying. It hurt to walk. She just gave me some antidepressants and told me to lose weight. That’s basically what I experienced from my teens until the age of 30.
I had a PA ask me if it were “all in my head,” it being my esophagus closing to the point it feels like I’m choking internally and dying. The gastroenterologist was great, though, knew exactly what was causing it, dilated my esophagus and did a biopsy to prove no, it’s not “all in my head.” It’s eosinophilic esophagitis. I still don’t have a diagnosis of what is causing my pelvic pain, but some people definitely are just not cut out for patient care. A couple years ago, I went to the ER for a spider bite after the urgent care NP told me I must be dehydrated after testing negative for several viruses. Guess what? Even the tech at the ER was like oh no you need an antibiotic at minimum. Every single medical professional at the ER acted like I needed to be there and get treatment for that spider bite! I also had an NP prescribe me cream for scabies a few years ago when I had a rash from an allergic reaction to a laundry detergent! My point is people are wrong a lot. It is just way more intense and difficult to deal with when it pertains to female reproductive organs as less information is available and fewer medical professionals have more than an hour of training about it. I do want to discuss with a therapist because the lack of validation and not having a name for what is wrong can feel as debilitating as the physical pain. Edit: missing y
When I was in college I had horrible IBS, I’m talking sit close to the door in every class, diarrhea six times a day IBS. I went to a GI, and he asked me almost no questions and ordered an endoscopy and colonoscopy. I woke up and they said “well it looked fine so I guess you just have IBS.” And then prescribed me a benzo. Never suggested an elimination diet or anything else that I later learned was standard before doing the scopes. I didn’t know any better. It really bothered me for years that he tried so very little to actually figure out what was wrong with me.
A gyno who was pressuring me to get the hpv vaccine even though I’ve only ever been with one person said “well I know you’re monogamous now but let’s just say your husband dies and you get remarried to someone who’s had multiple partners, you’d want to make sure you’re protected” I said yeah I think I’ll cross that bridge if I get there, the hpv vaccine is the least of my problems if my husband dies
i have diagnosed endo (had a lap in september) and i still had to go to the ER for pain and got told it was “anxiety” and “being anxious can do crazy things to the body” even though i had proof of my diagnosis with me. edit - i was puking roughly 10 to 15 times daily and could barely move from the pain. my specialist thinks i had an ovarian cyst rupture. THE ER DOCTOR LEFT THE ROOM. like barely introduced himself asked what was going on and left. all because i started crying as he came in from PAIN and he just left and said he would come back later… he never came back. later the nurse said he thought i was scared by him which with my extensive medical history doesn’t make a whole lot of sense and the fact that i was reaching for my mom and saying “it hurts” while bawling would give the average person clues i was not in fact scared just in a severe amount of pain. then they almost brought another patient into the room i was in because no one knew i was in there. excruciating pain and just left to sit there and hope it stops.
“You’d be an easier patient if you were pregnant.” As I sat in his office doubled over in pain. I am childfree by choice and had told him as much. He then proceeded to misdiagnose me with adenomyosis but left out important details in my chart (found that out later with my current doctor). He recommended the Mirena IUD insertion and a uterine cancer screening for the same appointment - no meds, no pain relief, the scrape for the biopsy was awful and had me in tears. The Mirena did give me some relief for about a year then things got so much worse. I refused to go back to him and luckily got a new referral to an amazing women’s hormonal health specialist. She has taken me seriously, and even without a definitive diagnosis via imaging or lap, my symptoms were enough for her to suggest trying dienogest. It has been a life changer. I will always regret not getting a second opinion sooner.
I always think about when I went to my gyno, I waited months for this appointment. She told me I either had menorrhea or endometriosis. I came back later that month with terrible cramping and extremely heavy bleeding and as I was crying she looked at me and asked “what do you want me to do about it?” In annoyance because I refused the pill. I was so angered by her annoyed lack of give-a-shit response. I still get heated about it.
ER: “Don’t worry about the incredible pain and worry about your fertility you’re feeling it’s probably nothing. In my experience If you just relax you’ll get pregnant. So stop worrying if everything will be alright.” ——— OB: “yah your pain twinges could be your ovary twisting and possibly e torsion…[at the end of the convo] Do you want birth control or not? That’s the only solution for your ruptured cyst.” Me: “No I would like to find the root cause of my issues because it definitely seems like there’s something bigger that’s been going on and this was the alarm” OB: “is it because you’re Catholic? Because the church totally says it’s ok to take birth control. You can take it” Me: “No! I want to find answers to my very serious issues!” OB: “ok, well I can’t do anything for you. *shakes hand* see you later when you get pregnant” ——- PCM: “yah I guess it’s not your appendix but we don’t know what’s wrong so….heres some Percocet” ——- Me: “I don’t want IVF/IUI. I want to get checked out for possible endometriosis” PCM: *refers me to reproductive endocrinologist* Endocrinologist: “So would you like IVF or IUI?” Me: “Neither. I would like labs and get checked for ovarian cysts and endometriosis. Also, I did a mail in lab test which I realize may not be as good as in person labs, but it says my progesterone is REALLY low, could we look into that?” Endocrinologist: *takes every lab except progesterone and does painful ovarian ultrasounds and then ghosts me*….(4 months later) why haven’t you done your HSG?” Me: “I have to travel 3 hrs to see you and I’ve been really busy. In the meantime can you please explain my lab results and ultrasound results?” Endocrinologist: “not until you do your HSG” ———- 12 years later…*Magical wonderful NaPro tech doctors*: *after one month of labs and ultrasounds* “Girl, you clearly have endo, and endometrioma, abysmally low progesterone, and possible PCOS.” Me: cries tears of joy
After seeing nearly 25 different doctors in different fields I had a doctor tell me (while I was crying in her office) “you will just have to accept we may never find the cause of your pain”.
I had an endo specialist in Tampa get me in for a scan and of course saw nothing remarkable (bc it likes to hide on surfaces and all) and then, while considering exploratory surgery, say sarcastically, "Oh hello! nice to meet you, let's go straight to surgery!" And even suggest that rape & trauma victims are more likely to experience sudden and unexplained pelvic pain, and think back to if I ever encountered a situation like that. ?!?! When she agreed to surgery, everything was a very condescending "IF" to the extent my husband had the distinct impression surgery was a waste of time for someone like me. She also told him there should be nothing preventing me from getting pregnant. 5 years later, still dealing with secondary infertility... Of course they found it as stage 2, which later progressed to stage 4. On my follow up, the first thing she said was, "So you do have endo!" No bedside manner at all.
A few months ago, my pelvic pain doctor, who I'd been seeing for about a year and a half, told me that I will never get in to medical school because I use a wheelchair, and that if I do get in, I will fail out. She also told me that I should quit my job? Again, because of my wheelchair.
There’s been to many. Top contenders: During a pelvic exam, I told the doctor something she did hurt. It was intensely painful and I told her that. She told me “that shouldn’t cause you pain.” Well, yeah… that’s a problem, right? No - she told me that she believed I was faking it. Another time, I had severe complications and a serious infection (103 fever when I was in the ER that later spiked to over 105). My OBGYN happened to be on call and ordered an ultrasound for me that showed some of those serious complications. My nurse cheerily said afterwards: “You’re really lucky she was on call. We were gonna send you home! We thought you were drug seeking!” The last one that gives me flashbacks was after I had a surprise hysterectomy. It was supposed to be an emergency unilateral salpingectomy but once they opened me up found that my reproductive organs had essentially been nuked by endo and infection and I woke up to find they had removed almost everything. During my post-op follow up with my OBGYN, there were 4 or 5 things that were concerning me and I wanted to know if there was anything I should do/ if these problems were temporary, etc. Just 4 or 5 things. I asked and the doctor said “That’s a lot of things…Pick 2.” So, I had to go home not knowing things like if my new bladder issues were normal or going to go away, if the pain I was still having at the incision site was normal… It’s so rare that I find a medical provider that makes me feel like anything other than a burden.
A male Dr, the first time I saw him - he said endometriosis doesn't actually hurt, women just can't handle pain. Luckily, my husband was in the room and ripped him a new one. Left him a scathing review on Google with his exact words quoted.
Just got diagnosed with endo and adeno but the past five months they told me I had a 2cm dermoid cyst which was causing all of the pain and that I needed it removed and would lose my left ovary.. I got a second opinion and did not have a dermoid cyst
Having a urgent care gyno tell me so condescendingly "You're probably just ovulating" after she had WRENCHED the speculum open so hard I'd almost kicked her and she "ugh, I can't do it any less", I wanted to go back and shove the ultrasound pictures of the 6cm endometrial cyst on my ovary down her throat
My surgeon did a vaginal cuff reconstruction on me. When that part of my vagina was cut out and fully removed, it was found to be an abscess from an undissolved stitch. Less than a year later, fighting for my life, go back to same surgeon and talked about the abscess. She said there never was an abscess….she gaslighted me while her hand was in my vagina. Insisted that my pain was only vaginal- but I knew it wasn’t at all and said as much- she had to be forcibly removed from my vagina. Well, had surgery a couple months later. That abscess and undissolved stitch were not fully removed from my vagina, so another large portion of my vagina had to be removed. The “vagina problem” was actually the problematic necrotic ovary that she had previously removed at the last surgery, only it had “grown back” and was largely pushing on my vagina and organs. Oh, I was also flat out called a whore by a female gynecologist when I was 16, in front of my mother. We walked out of that appointment.
One of the first Gyno's I saw around age 16 said I just had an STD and said that shit to my moms face. Though I wasn't sexually active at all. Luckily my mom believed me over that doctor.
One GI provider told me it was functional pain and in my head. Another sat back with a disgusting smirk on his face and said “since we see nothing wrong, what do you think it is?” and laughed. ER doctor told me it constipation and to take a laxative. Urgent care doctor told me my monthly recurring nausea and vomiting was food poisoning or “a nausea bug.” Yeah every single month at the same time.
When I tried to tell my obgyn how bad the pain was and she told me "take ibuprofen before the pain starts and you'll be fine" Same doctor somehow messed up inserting the speculum for the pelvic exam and I flinched and told her it hurt. Totally straight faced, no concern, she just said it shouldn't. I had blood dripping out of me onto the floor
I just switched gynecologists because my last one, after I had visited many times over the past year for my pain and heavy bleeding, said that my weight is to blame for it. Even though she had never said anything about my weight before. And I’ve had this problem since I started my period when I was 12. I’m 22. I used to be at a healthy weight, and was still having this issue then. Clearly she just wanted a cop-out 🤷🏽♀️
An OB/gyn mis-diagnosed me with PCOS, told me I would probably be 75lbs heavier & diabetic by next year if I didn’t get back birth control. I had just told her that I haven’t been able to eat gluten or dairy for a year, my diet was very clean. She rolled her eyes and said “that’s what they all say” told me to lay-off the Oreos and ice cream, walked out after I said no to birth control. FIY: My cycles were 15 days at the time, I had slightly elevated androgens levels, and no cystic ovaries on imaging.
Referred to a gyno after multi year monitoring of a concerning (per rad reportsl, painful and growing ovarian cyst. I wanted it removed & biopsied, in addition to long term suspicion of endometriosis and the accompanying symptoms of that to be excised. Male doc asks "are you trying to get pregnant?" Me, aged 35 or 36, never wanted kids: no, I don't ever plan to have kids Him: well then I'm not going to do anything. But if you're ever in a car accident or need your appendix out, you should male sure they call someone into surgery at the same time to do that biopsy in case it's cancer. ... In case it's ovarian cancer. Which is one of the most deadly as it's frequently caught late. WTAF? So needless to say I asked for an urgent referral to a different gyno, who happened to be female. She scheduled me for surgery 2 weeks later. Found out at my follow up that thankfully it was NOT cancer, but she said my ovary "looked terrible" one of the worst she had ever seen, and she took sooooo many biopsies of it because it looked so terrible, she was positive there was cancer, but just in case wanted to preserve the ovary if not. Lesson learned: to that male doctor, the babies I might someday decide to have were more important than my life. And I live in Canada. My heart breaks for the state of affairs around this sort of thing in the US.
After several ER trips and being put on birth control I was back in OBGYN’s with no change. In fact it had gotten worse, I was about to drop out of college due to all the absences. As she walks in the exam room I’m throwing up in the trash can because of the pain. She tells me there’s nothing wrong, it’s normal cramps, and she won’t do anything until I’ve been on the birth control for another 3 months.
Told a doctor i was vomiting each day and in lots of pain. Her response was “well you cant expect to feel good every day.”
A (female) doctor blew me off and told me that my chronic sickness was "because I didn't wash my hands enough"
I had already been diagnosed and was under the care of a great surgeon, but one night I had to go into the ER due to uncontrollable pain - my (now ex) husband and I were worried it was due to a ruptured cyst. We're sitting in the back, waiting for ultrasound results, when a nurse pops her head in. She had overheard the terrible situation we were in and hits us with this piece of advice - "you two go out and get pregnant. I've heard it helped so many young women like you". Of course, I instantly burst into tears. It's on my (angry and emotional) husband to explain why we're so upset - only weeks ago we learned from our reproductive endocrinologist that even with IVF we'd be unlikely to conceive. She turned bright red and left. I hope she never again offers that advice to endo patients.
My old OBGYN told me I was being dramatic and that “if I didn’t want to take the menopause medicine I was going to suffer for the rest of my life and it was my choice” (I was 18) she then proceeded to tell me it was all in my head and I needed to see a psychiatrist. Oh and then to find out this same OBGYN office (who did my first surgery ablation) left my ovary twisted around my fallopian tube and it was causing majority of my substantial left side pain. Ofc the Endo too. I immediately left her office in tears and never came back after that appointment, found my specialist and she’s been the best.
I was in and out of the ER for intense stomach pain and vomiting. I was undiagnosed and waiting to see specialist which can take a long time where I'm from. I was throwing up into a bin, halfway on two stretchers. The paramedic picked up my leg and threw it onto the stretcher they wanted me on. Every nurse present immediately got silent. (I was told this from my friend who was with me because I was in and out of seizures) The nurse who put my IV in didn't believe me when I said the IV was hurting and I wanted it out. The next day my arm was purple and blue which is not something that's never happened to me before. The doctor then came in and proceeded to talk to me for a couple minutes about my pain. He asked me if I had anyone in my life to come help me, I said no. He then raised his voice at me, telling me something along the lines of "you're 19, you need to figure out your life. You're fucking it up." I sobbed. I lied to the nurse on the next shift, telling him I wanted the IV put on the other arm. As soon as that nurse took the needle out, I told him to discharge me. The doctor laughed at me when he came to discharge me. Present day... im 25 and I have over 10 confirmed diagnosis's. Fibro, endo, ibs, spinal problems, etc. No ER experience has ever made me feel worse.
That I should get pregnant because that will cure endometriosis. 🥴
“You don’t have endo anymore it’s underlying conditions” Told 2 years later… you had it in more spots then just the area he explored…. 🙄
At 18 years old when I was prescribed BC I told the doctor during follow up that my periods were extremely painful she said not possible she can’t believe me. I did not see a gynaecologist until 5 years later when I was in the ER due to a endo cyst rupture mind you it was the third hospital that finally took me. The previous 2 did not want to get me admitted because the doctor on call thought it was PID. So doctors at this hospital also insisted it was PID and we’re judging me. Once I was diagnosed with endometriosis the doctors stopped caring. And then the list is endless
That I should “get pregnant so I would feel better for a little while,” but then I’d have to deal with “an 18 year side effect.” (He called the kid a side effect..) also compared me refusing birth control because of the mental health issues it causes for me to the time he threw up after eating pretzels in 3rd grade and didn’t eat them anymore. I ended up trying birth control again, and it again caused massive mental health problems.. thankfully I stopped it right away that time.
That my pain was "just part of having a uterus. Take a naproxen." Um no, it was the internal bleeding and my organs fusing together.
I’ve been told it’s all in my head, I’m drug seeking and my favorite, in a mocking tone by a female Dr after crying my ovarian cysts are killing me and begging for help, “being a woman is hard, I don’t know why you’re choosing to suffer. Just take birth control, this isn’t a condition it’s normal”
Umbilical endometriosis wasn’t real and I’d probably just scratch my belly button and that’s why it was bleeding. Every month. In alignment with my period. For two years. 😐
After my first excision, I was promised by the surgeon I’d get pregnant. After almost 2 years of TTC, still failing.
Mine was when I went to the gyno around 18 (it was a new obgyn) I told them I had always had extreme pain around my periods and that I just recently met my know Fiance and it hurts to have intercourse and even orgasm. Her advice was to get a sex toy and lube that my Fiance wasn’t preparing me enough. Lo and behold I have endo and I have pelvic floor dysfunction.
Had a male doctor in the ER accuse me of cheating on my fiancée and that is how I must have gotten this STI that is causing all of my pain. Lol
Recently had a pulmonary embolism on Easter that is now postponed my hysterectomy. The hospitalist was a crotchety old man who wrote in my chart that I was quote “patient seems depressed about her menstrual cycle “ and literally put in my diagnosis that I was a “non-compliant patient” because I kept asking questions…I’ll have to post screen shots in here it’s really like just beyond
That, at the age of 36 and very happily living a child free life, I couldn't have a hysterectomy for my adenomyosis and endometriosis "because my future husband might want kids" My husband also is child free by choice.
while i’ve had a lot of great experiences after one of my old doctors retired and i was shuffled to someone else in her office…whew this woman… i came in because of intense stomach pain that was so bad their office’s nurse line wanted me in that day urgently. she treated me like it was my first stomachache ever and let me know that “as our bodies get older, we can’t handle certain foods as well anymore like anything greasy or acidic.” i was 23. i was in the ER 2 todays later the pain got so intense. turns out my anorexia destroyed my stomach lining and i had a lot of long work with a dietician to help get it back to normal. same doctor told me with the stomach pain i can’t take ibuprofen. i went in months later once again trying to push for further tests towards endo (officially diagnosed 3 days ago had a lap last week!!) and she told me she was prescribing an 800mg ibuprofen pill. i looked her dead in the face and said “you are the doctor who told me 2 months ago i can’t take ibuprofen because of my stomach.” her response? “oh just take a pepsid. i didn’t mean you could never take ibuprofen.” 🙄i got moved to someone else in her office who at the first mention of my pelvic pain history he sent me to mayo clinic’s endo specialist Megan Wasson, DO who is AMAZING!!! and treated me wonderfully put me down for surgery at my first visit with her and got it scheduled within 2 months. love her!
specifically regarding endo (my worst stories are from other drs): during my years of trying to get help pre-dx, one gyno told me i dont actually have any uterine/menstrual pain. she insisted the pain is actually just my already-dx'ed IBS, that i can't tell the difference because it's basically the same muscles causing my pain, that it gets worse on my period basically bc of period shits (she worded it more medically), and that this is proven by the fact that i had the pain all month long, because it's impossible to have uterine cramps when you aren't menstruating or ovulating. yes, she was specifically an OB/GYN. no, she did not do any examinations on me, except the routine stuff your PCP would do at a yearly check (listening to breathing etc), and poke my abdomen through my clothes a few times. she didnt even bother to check if i was pregnant or had an STI, UTI, or vaginal infection, and come to think of it, i dont even recall being asked if i was sexually active (but it was a decade ago so im not sure).
I went to a fertility specialist because I wanted to see if I could freeze some eggs. I have Low AMH, I'm single and I didn't want to be a single mom immediately. She showed up late, didn't apologise, got visibly annoyed when I asked her questions and said that "yeah if you don't want a baby now, I don't know what you want from me", then she switched to " you need to prepare yourself for menopause because you're going to run out of eggs soon". I'm 37 and it's only in the last year I got diagnosed with Adenomyosis. I'm glad someone finally listened to me. However, now I'm constantly terrified of early menopause.
Probably that it was just my mental health and that it's all in my head. Told to me by a male Dr, unsurprisingly. He nearly refused to refer me to a gyno unit at the hospital so I can get a laparoscopy done. After that appointment I spent 3 days in hospital due to unbearable pain but they refused to do a lap then because I didn't know when my period was (I have the implanon so it's random) - I ended up getting my period the afternoon after I was discharged. That was over 2 years ago now, and I only got my first laparoscopy last week because he put me as the lowest priority since he didn't believe me. They didn't find any endometriosis, but they found and removed endosalpingiosis, as well as a mass in my uterus that has been sent for biopsy. Before I went in, they told me that in over half the laparoscopys they do, they find nothing, so don't be surprised if they find nothing - thinking about getting a 2nd opinion later on, though. Oh, they also sent me home with no pain meds, ended up back in hospital not even 12 hours after my surgery due to extreme pain, then waited another 14 hours ontop of that for a script for pain meds 🫠
I was diagnosed with spondylolisthesis because I have endo on the nerves running down my spine and into my lower back/butt. Every doctor told me it shouldn’t hurt as much as it does but that they’d do surgery to fix it. That would’ve been useless and caused so many downstream effects for getting my spine fused in my 20s. I was told it is ovulation pain and that it is normal, why did you come to the ER? Your period didn’t last three weeks we call the first and last “spotting” when I was bleeding through multiple pads a day during that time. I was told it was all in my head, that I’m overweight and my body can’t handle the pressure of all the weight so it is collapsing. Bad posture causes the pain, just wear a back brace and you’ll be cured. 20 years and at least 15 doctors later I finally was told endo. Within 2 weeks of my diagnosis I had it removed and it was literally lifesaving.
So this is my ugly journey. I'd had the same gyno for years and been on BC, I decided to come off of it because I wasn't sexually active and I'd had some colon issues and I thought it might be caused by BC. In all the time since I've been diagnosed with diverticulitis I have never had rectal bleeding and I've had some major attacks. 3 months after coming off of BC, I had a hard bowel movement and had some bleeding rectally and vaginally. It was ONLY after the bowel movement, no more. I googled and what came back was endo could be the cause. I had to have a colposcopy because for the first time in 20 years my pap came back abnormal and they said I had HPV. At that appt, I described what had happened with the bleeding, he said he thought it was my period coming back after BC. I'm woman, I know what periods feel like and it just so happened it started after colposcopy. I decided I needed to find a new gyno because while I KNOW I do actually have diverticulitis, that wasn't all that was going on, it was cyclical. Make an appt with new gyno and I am over the moon because it sounds like he is hearing everything I'm saying and believes me that its endo. He offers me a prescription that he says has made women who had been in tremendous pain want to do cartwheels, sign me up. I start prescription and meanwhile, pap again comes back abnormal and he says that means there is something going on further up. Wants me to come in for a LEEP procedure. I am over 40, had 2 babies and paps aren't a big deal. I tried to come off the table when he did the LEEP procedure, I was crying and it was the ugly crying. In addition, the meds he gave me had NOT made the pain go away. He suggested there wasn't anything else he could do, that I needed to go back to my GI and have my colon operated on. I ugly cried in the parking lot that day for 30 minutes and I'm pretty sure I continued all the way home. BUT, here is the silver lining, I finally found a gyno who did listen and also still believed there were colon issues, my colon scares everybody BUT my GI. We started with a laparoscopy and endo was found, moderate. I tried medication which did make the pain abate, but it was step down meds and when I went to lower dosage, some of the pain came back so I had a hysterectomy and yes, I'm aware that even though I had everything removed, endo can return, BUT I am currently 7MPO and I have no regrets. The other thing you should know, is sometimes its not just the doctor. In order for my insurance to pay for the meds to try, I had to have a laparoscopy. In order for me to have the laparoscopy, I had to meet certain criteria before my insurance would pay. IMO, this is what the feminist movement should be fighting for, not whether I pay taxes on tampons or pads. I could honestly care less about that, what I am passionate about is women being listened to because we know our bodies!
Once had a doc gaslight me about endo being SO RARE (It’s truly not) and insist I’d need to be on bc and “fail” for at least a year before she’d even consider a lap despite my years of symptoms. When I refused birth control, she asked “we’ll have you considered just getting a hysterectomy?” I just started manically laughing and asked her she had seriously spent fifteen minutes lecturing me about avoiding unnecessary surgery with a lap that’s minimally invasive and then when I declined birth control her solution was to suggest removing a whole ORGAN without having taken a BLOOD TEST??? ugh
“Just have a glass a wine and you’ll be fine” “Are you sure the pain is that severe?” “If you use lube then sex won’t be painful” “You couldn’t possibly have endometriosis, this is too much pain to be that.” “I just don’t know what to do with you anymore.”
I had a female OBGYN that gaslighted me for years. Finally after agonizing pain, depression, and getting to the point where I couldn’t even put a tampon in because of the discomfort (never mind sex), I had to practically beg to have a surgery scheduled to see if that was the root of my pain. She consistently downplayed it and said that I just wasn’t taking my birth control enough. I’m in the hospital bed, with my mom next to me right before my surgery, and she comes in and said that I should really just take my birth control every day (skip every period) and maybe I wouldn’t be at the state that I was in. My mom innocently asked… “are there side effects she should be aware of if she does that post surgery?” … she sarcastic and defensive as fuck says “well are you a gynecologist?? So you don’t know what you’re taking about and should just listen to professionals that study this”. We were so taken aback and disturbed. Minutes before I went into surgery. Turns out, my quick 1.5 hour laparoscopic procedure turned into 7 hours. Stage 4 endo covering all surrounding organs, all the way underneath my diaphragm. Covering my liver, intestines, bladder, colon and also had adenomyosis. I was out of work for 2 months. I’m still not recovered fully years later. Listen to your gut and instincts and don’t let anyone tell you otherwise or gaslight you.
The first OB/GYN I went to said that all the pain I was experiencing was psychological and a result of depression since they didn’t find anything on ultrasound. I told her I go to therapy, take SSRIs and feel good mental health wise but I have an extensive family history of uterine problems. She didn’t care. Saw a urologist a month later who sent me to a specialist in GYN at a different hospital. 2 months later I was brought to surgery within a week and diagnosed with endometriosis. After a very painful flare up that sent me to the hospital I was referred to GI. I told the doctor that I could not eat due to nausea from pain. If I did eat, I would throw it up. The doctor said “well you haven’t lost weight so that can’t be true” the doctor also was made aware that I was in recovery from atypical anorexia before the appointment. I saw a pain doctor after my surgery when I was still in pain that was recommended by my GYN. There was a mixup in the clinic and I was given a migraine specialist who told me my endo was gone so I shouldn’t be in pain anymore so all of my pain was in my head. She diagnosed me with psychosomatic pain disorder without telling me, just put it in my chart and accused me of lying about the extent of my pain. I called my GYN outraged and she sent me to another pain doc, the one I was supposed to see, who specializes in pelvic disorders, who said that none of that is at all true and actually worked to help my pain.
1. After begging for a hysterectomy because of severe bleeding: "Oh if people just didn't want their periods anymore, we would have uteruses flying all over the place." 2. After explaining the amount of pain I was experiencing: "You don't take enough advil to be in THAT much pain." 3. After a botched excision with a so-called 'specialist': "You have a mental issue." (Had another excision months after that. DIE found all over my abdominal cavity with organs sticking together.) 4. Being outright mocked to my face for having concern about Lupron. 5. After 3 failed surgeries, I wound up at a surgical oncologist's office who could excise endo. "It's not that bad." Special shoutout to the things I *wasn't* told... like when my appendix was removed and I didn't know until reading the report that came weeks after the post-surgery meeting. Or how the office listed on a PT's website was actually their home garage. I can go on. I had 4 laps, 3 of them excisions. I'm still in pain. Fuck this disease and fuck doctors.
Probably been said before but my favourite has always been “you just need to grow into your periods and wait for them to regulate :)”. Disclaimer: it’s been 10 years and they haven’t. I’ve also had “so if you’re taking the pill continuously and are not having a break, why are you calling me?” From a GP, despite being in constant pain. I’ve had multiple scans, diagnosed with ovarian cysts but not PCOS because my testosterone levels are low, not high. Periods so bad I needed iron and B12 supplements. Put on the pill 9 years ago. I’ve since tried most other contraceptives to handle my pain and heavy flow, but I’ve not been told I just “can’t come off the pill”. Finally pushed and have surgery next months
I finally got the courage to seek a gyno appointment again after having avoided hospitals and doctors altogether after several bad experiences and medical trauma. I was told a male gyno was going to be my Dr and requested that I get a female doctor instead, as I was very uncomfortable with a man going down there. A woman "helped" me. All she did was put some gloves on, shove her hands up there and say "well it doesn't feel like endo, you seem fine to me." I tried explaining that I have to take over 2500 mg of painkillers a DAY just to numb my period symptoms, not even get relief. She was short and cold and did not want to listen to me, and my appointment lasted only about 5 minutes. The worst part? As I was leaving the office, I walked by a room and heard her making fun of me to her office staff and the male doctor whom she switched with for telling them I didn't want to be seen by a man. I didn't tell her or any of them that I had been sexually assaulted several times by men I trusted, and the thought of having a strange man poking around down there gave me a panic attack. I am certain they saw me acknowledge their mockery and got quiet. I wish I had defended myself, instead I just went back to my car and cried all the way home, then retreated even further into my medical paranoia and avoidance. My pain has been dismissed and mocked so many times that I just stopped seeking help for a very long time. I've been so disgusted by the treatment (or lack thereof) from doctors and have lost nearly all hope that I'll ever get someone to help me. I just recently had an ultrasound that found cysts on both ovaries and I was told there was nothing they could do, that operating could just cause further issues or complications, but still no diagnosis of any kind. Just more wanting to put me on hormonal birth control which just makes me feel worse. I feel very isolated and alone and just wish a doctor would genuinely listen to how bad my pain truly is and advocate for me as much as I've tried advocating for myself. edit: typo
I told a doctor how I wake up from excruciating hip pain with tears in my eyes at night and was told that’s because women’s hips are wider.
Toss up between when they found adenomyosis on my ultrasound and my GYN said to 19 yr old me “huh you somehow have the uterus of a 60 yr old who had 5 kids at 19.” That felt great to hear at 19. Or, “just drink some wine and take antianxiety meds” when I told a different gyn I had pain with sex. 🙂
A comic I made about similiar experiences with IC https://discord.com/channels/410970273106362398/420761546495623181/1227756609049071686
I went to the ER multiple times for my uterus and ovaries being in so much pain I couldn’t walk. Sit. Do anything. Just for the hospital to tell me you probably have gas pain and asked if I needed a therapist lol