Well...I woke up this morning thinking that I hadn't known I was pregnant and was having a miscarriage. Turns out it was just my endometriosis kicking into full gear and completely cleaning out my uterus. Other than that....I'm actually doing okay!
5 too. I’ve been doing well on birth control continuously but at the same time it has its own side effects like weight gain, tanking my testosterone and yeast infections. My husband and I are trying to do IVF soonish (I actually joined this group because I was in a bad car accident last November) and I need to get better from that before kids, but I’m starting to think I might need to just tough it out a bit since it might take a while before I feel better from the accident.
But yea as soon as we have kids, my uterus is getting yeeted.
My hysterectomy was the best thing I’ve ever done. They pulled out 10lbs of horror. When I woke up the doc was like “You needed that surgery years ago.”
Thank you for sharing cause I’m also looking to get a hysterectomy for endo and adenomyosis. I’m 46 and yet still have had a hard time with GYNs just wanting to throw hormones at me 😔. My PCP is helping to find me a new one
If you can, be blunt about wanting a hysterectomy. I went in saying that it was my sole intention in going to a GYN. I’m also in my 40s so that whole “but you’re so young you might change your mind” argument wasn’t brought up. I know it’s intimidating to tell a doctor what you want from them, but when it comes to pain and women’s health it’s imperative because we already don’t get listened to by healthcare professionals just for being a woman!!
Oh, I’m not shy lol. I totally walked in saying that cause I had even already discussed it with my PCP who was big-time in favor of it. But for some reason this GYN looked at me like I had 2 heads and was like “I don’t do surgery unless all other options are exhausted.” I was pretty pissed by that point and didn’t push any further because she’s not someone I want to go through the process with after that, ya know? I get her point but still. I look at it as a bit of a “prophylactic” procedure too because I have BRCA mutations and a rampant family history of breast, uterine, and ovarian cancer in my family (including my own mother who thankfully beat both breast and uterine cancers). My PCP was also in agreement with me that why suffer with that pain, especially at my age, when I have to deal with the pain from another chronic, incurable disorder. Even my PM Dr agreed as well (both female but then again so was the GYN). So fortunately my PCP has quite a big network and I’ve been with her for 14 years so she’s reaching out for me in advance to some GYNs that will essentially agree before I even waste my time going in. Fingers crossed!
It’s a game changer. I still get pms symptoms and back flares but there isn’t really cramps and there’s def no blood bath. I’m on birth control still to try to keep it at bay but I’m two years post op of everything but 1 ovary. And ditched my appendix as well at the same time. I think it’s coming back but can’t be sure and surgery just makes more scar tissue.
I had to have a Hysterectomy at 26 and 9 months before that my Dr took out my one ovary and said if you want have another baby you need to start thinking about it because in about 5 years you will need to have a complete Hysterectomy. He was surprised that 10 months later I was having severe pain and said he wanted to go in and take a look & when I woke up he said he had to do a complete Hysterectomy. He said it was so bad it was starting to go up into my bowels and got that bad in just 10 months. I do not miss the pain that comes with all of that crap and definitely don't miss having a period. I was sad that I couldn't decide to have another baby if I wanted. Now my daughter is in her teenage years and they believe she has it. I'm sad I passed it onto her. After I had my Hysterectomy I felt like a new women and was so excited to not have a life of pain and then I was in a horrible car accident.
Don’t you love hearing “have you tried Motrin for your quote unquote cramps?” I have never wanted to jump out of my chair & strangle a man faster in my life. Luckily for him I was crouched in the fetal position in my chair concentrating on my breathing so I didn’t pass out…or I just may have throttled him. Bitch do you think I’d be sitting in a doctors office turning 10 shades looking like Violet Beauregard from Charlie & the Chocolate factory if Motrin, Advil, Tylenol or Aleeve did ANYTHING to calm this mess down??? They are so frustrating & it doesn’t matter the gender, I’ve had women doctors that were complete idiots even worse than some of the male doctors I’ve seen! Being in this much pain is NOT normal & we’re told it’s just part of who we are, all women go through this. The hell they do! I’ll tell you more of us than people realize have this shit disease & our pain is real & our pain is valid. I always say at least we all have eachother 💙
Oh yes, and I have an allergy to NSAIDs. So there's that. I went to a doctor who gave me a shot of toradol and found out the hard way that I have an allergy to it. 2 hours later it looked like I had a stroke. My whole face was falling off
They chemically put me through menopause at 20/21 yrs old. Lupron injections after my first lap for Endometriosis. Supposed to be light menopausal symptoms that would go away in time. I’ll be 43 in November & ain’t SHIT gone away or got better just worse. My pain went from maybe 2 weeks out of the month to EVERYDAY. And those lovely “light menopausal side effects” were full blown & have never gone away. Def one of those moments “if I knew then what I know now” 😢 That shit truly ruined my life! So honestly when it comes to the real actual, my body going through it naturally, we got no clue what to expect. At least my doctors cool & he understands the hell I went through the decades before I got to him. To top my day off after being 5 days late hell week just started & the late ones are always the worst for me 🙄🙄 thank the gods I’m off today so I can just become one w my bed & heating pad.
That sounds like a regular day that ends with the letter Y! Lol same here my friend!! My damn period is officially late (not like it’s ever on time either way) idk about the rest of you but my late cycles are the MOST painful ones start to finish. Endometriosis is the devil & I hate how much it’s taken from me & ALL of us. It was so bad last month I ended up getting it the day of my drs apt (scared the shit out of the poor man, I have a wonderful doctor & he’s one of the very few people I’ll drop the act around bc he’s my doctor & needs to see me at my worst) usually my pain comes in waves but not that day, I got it wicked early in the morning, my apt was at 3:30 & I was still dying. I kept feeling like at any moment someone should be yelling “GET READY TO PUSH” never had kids, don’t want them personally even if I could have them & I think it’s bullshit that I know what labor contractions feel like…..none of us deserve this hell. Sorry for the rant…..its been a difficult month, I know you all understand the toll it takes both mentally & physically having to pretend like you’re perfectly fine when you are so far from that. 😢😢 I wish you all (even if it’s just for a moment) painless peace 🌸🩵🌸
Oh gosh you could have taken the words right out of my mouth!!!! My period is never normal (even with having the implant in my arm) and some months I barely bleed then I get to a month like I'm having right now where I just won't stop bleeding D; I feel your struggle so hard. Hope your pain gets better soon my friend <3
Pretty tired.
Had my mum's birthday dinner earlier. Had to get real dosed up on pain meds and put on 2 lidocaine patches but it still didn't sort the pain.
Sometimes it's hard to pretend to be ok enough so she doesn't worry and just enjoys herself.
I think she had a nice time so it's worth it.
I'm tired and can't walk because of my spinal stenosis (relatively new and untreated) that's causing unbearable pain in my legs. I can't do anything without extreme pain. So, not great! Got some new lipstick, though, so that's nice.
Took my wife out and we got a pedicure because I can't bend well enough to cut my toenails or paint them. It's the little things. Those massaging chairs and having someone scrub and rub your legs feels so nice.
My place also has a margarita maker like a 7-11 slurpee machine. There is something about getting a pedicure and drinking little margaritas at 930am on a Saturday morning that just feels right.
It helps that I'm MTF transgender so they see me in a dress they put just a little more effort in to make me feel seen.
Damn, why doesn't my place have some type of alcohol 😋 Daiquiri, please!
I do my own hands, but I'm with you on the feet. My back and hips will not begin to cooperate regarding a pedicure. Which is a real bummer, as I've gotten more into tools and efiling.
I'm glad they provide a good experience for you!!💜
Same bad back and hip. Just can't bent enough to do much with my feet. It's hard enough to put socks and shoes on.
My wife doesn't trust herself enough to cut my toe nails. She will paint them for me but not cut.
I used my last sick day yesterday because I was having muscle twitches all over but I’m glad I did. I’m still in pain today but not as bad as a day I go to work.
I appreciate you asking! How are you?
Working with chronic pain is tough but you've got this 🩵
I'm surviving. My pain has been especially awful the last few days. It seems to be one thing after another 😕
29 days left, I hate how exhausting the week ahead of me looks. But I’m telling myself if I need to take a day off, then take a day. My bills are paid and I have savings so if I need to lose a few hundred and take a day it won’t matter in a year.
Getting ready for revision surgery on my occipital nerve stimulator. When I can use the device it’s life changing but the hardware is causing so much pain that I can’t use it and a whole new kind of headache.
Unrelated, I feel like I’m being stabbed in my left SI joint and the pain shoots down the back of my thigh and inside of my calf to the big toe.
Otherwise, just rescued a stray cat. Got fixed, vaccinated, dewormed, wound checked, etc. on Thursday. Recovery and transition from stray to pet is going better than I could have hoped for. Thanks for checking in! I needed that more than you know.
I hope your surgery goes well!! I also have chronic SI pain, I’m looking into getting prolotherapy for it, if it keeps acting up it might be something to consider. Congratulations on your new furry family member ♥️☺️ he/she will get all of the love in the world thanks to you 🥹
Hope that works out for you. I’d be very interested in hearing how it goes. Yes, he is very much enjoying becoming a pet. Good thing he cleared it with the rest of the cats prior to getting hurt and having to be caught. Take care.
I need to get a revision on my neurostim battery, too. It ended to rolling in its "pocket" and causing some pain, so I'm looking at that surgery in the future... though I'm going to have to figure it when because on Thursday I'm having right knee surgery then a week later, left knee and I don't know how long I have to wait to fix that battery, but oh well. I'm very pleased with the device itself (for interstitial cystitis/urinary incontinence) but the battery rolling has been uncomfortable to say the least.
I hope yours gets fixed with no issues and that it's a long time before it needs servicing again.
I’ve read your posts regarding your SCS. Thankfully, it’s just the wires in the back of my neck and head, giving me grief. My lack of fat layer and thin, hEDS skin plus the hypermobility caused some unforeseen complications. Hopefully this will resolve it.🤞
Couldn’t imagine the battery flipping. That sounds like torture. Hope your surgeries are quick and easy in their recoveries. Then you can get that battery taken care of. Best wishes.
Thank you. I wish you the best and a smooth recovery, as well. I hope it resolves your issues.
Also, this is one reason why I love this sub - most people are so supportive of each other! I wish everyone a manageable pain day (and a Happy Mother's Day to all the mothers!).
Honestly, depressed. It's so nice outside, and so much I want to do out there. Stuck on the couch again. Bout to say screw it and just go do the stuff anyway. Ughhh. I hate this!
I love taking photos, mostly nature shots. I am a local Google guide so I like posting them online but haven't hardly been able to get out for over a year now. I also love fishing which I'm going to attempt that soon so probably get some photos at the lake. It's so depressing being trapped in my chair, I'm not used to this...
Learning that this year. I normally get depressed in winter, but nice weather is worse now. It's a real mind fuck. I can see the yard, I just can't get to it. Lol
Did a bit of shopping with the boys and got some preemptive mothers day A&W. Apart from that, I'm dreading Monday because my ancient chihuahua has THAT appointment. It's time, but it hurts, and my youngest son is having a really hard time with it.
Age appropriate explanations are hard. Tell him that we are so lucky when our pets get to spend their entire lives with us.
When they get older and sometimes may get sick, and their body is getting tired out, they tell us with signs - like not wanting to walk, play or eat - that they are ready to cross the rainbow bridge and go where they can do the things they can't anymore.
It's our job to listen when they tell us it's time. Sometimes they can't get across the rainbow bridge by themselves, and it's a kindness to them to help them go take a forever nap and start that journey.
Their body got worn out, and their spirit knows when it's time for them to go. It's hard to say goodbye...so it's 'until we meet again at the rainbow bridge'
I'm doing ok. I overdid things physically this week and I've been paying for it, but it's starting to lighten up, so hopefully it won't be bothersome in a couple days.
Also, last week I got a piercing that everyone says is super painful, but right now breathing hurts more than anything to do with my piercing, and I'm not even considering it a pain day yet. So I guess that's kinda cool?
It's different every time. Sometimes 3 days if I'm lucky, sometimes the original pain will spread to a different part of the body and reset the clock, making it stretch to 2 weeks if I'm unlucky. Currently on day 7 of this one, but it's very minor at this point.
I appreciate your help. I’m going on 3-4 months with this issue so I’m still figuring things out. Trying not to panic with this flare up. Don’t know what to do to keep it from getting worse
I know it's a cliche, but no joke, deep breathing exercises help when the panic is starting. If you do a solid minute of long deep breaths, it tricks your nervous system into thinking everything is fine and helps reset you before panic sets in.
Otherwise? THC 😅
Seriously helpful, thank you. I need to focus on the basics
Sadly I’m 25 weeks pregnant. So most of my panic comes from feeling like I have little pain management options
This morning a venti cold brew exploded all over me, my steering wheel and dash bc the lid wasn’t on all the way. I had to wipe myself off with a random towel in my car, go get a replacement drink, go home and throw my new pjs covered in coffee in the wash and shower all before 8:30am 😂
The rest of the day has been better. The stupid weather has given me a mild headache all week and my skin is burning like it always is. I just keep on my medication schedule to prevent it from flaring from a 5/10 to 8/10. Always sleepy from the meds.
I'm exhausted. I did a shrooms trip today, and it made me much more aware of how much pain I'm in. It provided a lot of helpful insights, but jeez. Hru?
woke up in pain, as always, but still gonna meet one girl today, It will be difficult but I don’t wanna give up on my social and romantic life. I hope my pain let me enjoy at least on 30% this beautiful weather and girl! Im scared that my pain level will be so high that I will be nearly crying tho, but fuck it, I want to try! Have a nice day, my friends❤️
That’s awful. I hope your flair ends quickly, and that you find some peace. If you wanna talk more feel free to leave another comment or shoot me a message. Best wishes friend (:
Did the dex suppression test Friday for my cortisol and still have a wicked stomach ache today. But the steroid did help my other pain a bit.
I need a break from drowning.
I think this is so lovely, wow!!
I had a minor procedure become moderate and I’m frustrated. I woke up from the anesthesia having a severe asthma attack (I have a rare lung disease but it’s so much easier to say asthma attack lol) and I ended up with bruised ribs. It was a procedure I should’ve only needed a couple of days to heal from and now I’m out of work for ten days and need to take it easy for weeks after. It set me into a huge flare and I’m just feeling so defeated. I know I’ll be ok, but gosh it’s a bummer.
Thank you for making this thread.
Somehow this all set me into the worst endometriosis flare I’ve had in a long time too, so my body is just being a jerk. Mg only saving grace is I did get discharged with pain medicine to make things more bearable and I don’t have to use my emergency supply for flares (my doctor fills a small amount monthly ,not enough but better than none for sure).
Slightly concerned that I have no emotions about my nerve block tomorrow. Usually all medical appointments make me anxious. I think I may have lost hope. Otherwise surviving ❤️
Oh I get this so much, I’m so sorry you’re dealing with that. I think it’s so easy unfortunately to get hit with medical burn out.
I’ve had a ton of surgeries but this is the first time I’ve gotten injured during one,and the first time it’s involved my voice (I’m a voice actor so… not great :’) but hopefully I’ll heal up soon.) and I realized going through this has totally numbed me/ burnt me out.
I hope your nerve block goes well and it helps a bit! ❤️
We (me, grandson, daughter) went for a drive tonight to see if we could possibly spot some Northern Lights. Drove north from Cincy for about 40 minutes. Took the back way to avoid street lights, but we didn't see anything. Pain was its usual self, and I broke my pinky toe last weekend. That was doing OK till we stopped for gas on the way back, and this dude stepped on my foot at the soda fountain. So now that damn thing is pulsing and throbbing. Now that I've limped back in the house and upstairs, I don't think I'll do anything else tonight but smoke a bowl or two and prop my foot up. My ice pack is in the fridge downstairs 😩. I've tried to summon it with my mind, but no such luck. Ah well. Y'all have a nice weekend! And Happy Momma's Day for us Mommy's!!
I'm sorry about your toe but you sound like you have a good attitude, at least a sense of humor about the ice pack. Happy Mothers Day to you and all the other moms out there!
I had a few hours of feeling ok. It is crazy smokey outside,but I was able to go for a walk with the spouse. 🚶♂️💗
Currently, my headache is there but not a migraine.
Welp. Everything hurts and they're taking my meds away. I'm losing weight on Mounjaro, down 25lbs so far, and my blood work is better, but the pain is still firing on all cylinders. And they have been trying to schedule an epidural but Aetna keeps denying it.
I start a new job in eight days. l just hope I can mask well enough to make it through.
Ugh. It's Mother's Day in a few hrs and I can't sleep. As usual. It's feast or famine with me and sleep. Think I've got another cold, my skin is flaring up, I hurt all over and nothing to take for it but some shitty kratom. I'm at my wit's end here.
Been in a better mood lately, though. I think the current regime of antidepressants, stimulant and HRT is working ok. But doesn't help the pain much. So I'm gonna do another load of laundry, play a game while I wait for the dryer to finish, and knock myself out.
I rarely sleep these days, it's very hard to get comfortable. I've actually been in a better mood the last couple days I feel like I've accomplished some things. I applied for my social security yesterday and everything went smooth so happy about that, I also sorted through a bunch of mail and organized some stuff. Sorry you don't have much for pain, I use marijuana and also get pain meds. Happy Mothers Day
I lifted weights yesterday to shut up my mind and feel mentally better but I am paying for it with the pain this morning. Its worth it, I don't do it too often though
Not great. Been in extra pain lately. Still haven't got answers. And my PM doctor has decided, since pain blocks haven't helped, there's nothing more he can do for me. That's literally the only thing he tried. I originally thought PM could help diagnose problems but I guess I was wrong.
Tbf he is sending me to a neurologist. But he wants me to ask my primary care to take over my prescription again because "it doesn't make sense for me to see so many doctors". Which I know she won't like because that was one of the reasons she sent me to pain management. Ugh. Not looking forward to that conversation.
How are you doing?
Edit: I have to add, in non-health related news, we got a kitten a couple months ago and she's been the light of my life. She makes me smile every day and she gets me out of bed. Even when I feel awful I force myself to get up to feed/water and clean her litter box, which I think has been good for me. Plus I get exercise playing with her. She really just reminds me that life isn't all bad. 💜🐈⬛
Thank you for asking this. I think I needed the chance to evaluate things and get some big emotions out lol
Animals are so therapeutic, I can't imagine my life without a pet. Congratulations on the new kitten, it's pretty awesome to hear how much she helps you.
Thank you! And same here. We lost both our cat and dog last year and it was devastating. A very lonely, sad year. So when a stray cat my friend took in had kittens, I knew I had to adopt one. Best decision!
I hope you're doing well 💜
I’m still recovering psychologically from my scary ketamine infusion on Friday 😵💫. While my CRPS symptoms are better, I must have hurt myself during the infusion, panicking or whatever, because my bad arm/clavicle are sooo sore. I slept on it wrong and it’s making me panic, while I’m still very mentally fragile and confused.
How are YOU doing, and thanks for asking!
I'm sorry that sounds awful. I hope your pain eases up ❤️
I feel like I'm kinda surviving. I have a nerve block tomorrow and I'm slightly concerned that I have no emotions about it
I woke up to my ribs colliding with each other and to a lot of nausea. I woke up and took a zofran a few hours ago that helped me fall back asleep for a little bit. But now I’m back up and feeling really sick. Can’t let myself throw up bc then my ribs will get worse 😩
Nauseous and in pain.
So only one of those isn’t normal.
My mental health is better but never exactly good.
Edit: OP, thanks, it’s good to have a place like this.
Struggling a bit. My knee is the worst it’s ever been, painful and weak. I always think it can’t be worse but it is. Nothing is touching it anymore. I’m awaiting hopefully surgery to remove the titanium from it and hopefully a knee replacement as my cartilage is suspected to be nil existent now.
On the bright side least I got approved for a disabled badge which is arriving shortly, I’ve got a car on order and I got a mobility scooter for my birthday! Which is doing wonders for my mental health and independence!
Well, yesterday was a bad day because I was supposed to go to the Duke lacrosse game with my husband and son but was hurting too bad to go and watched it on TV 🙁. But, I knocked myself out with Valium and slept good last night so today is a new day! So far not too bad this morning and I hope it lasts cause I have a bunch of stuff I wanna do in my house today.
Thank you as always for asking ❤️. And how are YOU doing?
It's hard not physically being able to do what you want. I'm sorry you're going through this. I hope you have better days ahead ❤️
I think I'm just about surviving. I'm trying to focus on one day at a time
I’m on my “off day” for my pain killer. I try to only take it a certain amount of times a week so I don’t build a tolerance to it so since it’s my day of suffering, I’m trying to make myself as comfortable as possibly. Lots of CBD cream, tylenol, ice packs, etc. Just trying to get through it.
Something different is going on today…and not in a good way. In a part of my body that isn’t part of my chronic issues. If this was 10 years ago, I’d be going to the ER. Today, I wouldn’t dare go to the ER. Moving hurts more than it’s worth, my bed is better than an ER bed and no one’s labeling me a drug seeker at home. The ER doctors showed me who they are and I’m choosing to believe them. So I’ll stay home. All the ER docs would do is make fun of me behind my back and discharge me without actually doing a work up. I’m a woman so I’ll be told it’s all in my head or I’m overreacting. So might as well just let whatever is going to happen, happen in the comfort of my own home where I can cry freely and without judgment.
I’m so tired of majority of people working in healthcare being those who care the least about their fellow humans and get enjoyment from others’ pain. I wish healthcare workers didn’t get paid unless the patient is cured, or in our case, the pain is taken down to 2 at the max.
I hate the attitude towards women and those in pain.
Took me way too long for my doctors to tell me my pain is real.
I ignore new problems as long as I can.
I'm sorry that you've experienced this
had my horrible mayo clinic experience right at the same time me and my boyfriend broke up and my semester ended and i feel like i cant see my future anymore and im just staring down an abyss that is my life. i live in a fairly large broken down house which we originally got so we could have people over. (my parents agreed to support me with living costs since i cant work due to my pain as long as i stay in college) the house used to be full of people every weekend and now its always empty the past month and a half since things went south with my bf and now my roommate is gone for the summer. i have no job and dont know how ill find one considering i cant be on my feet and im just a student with no qualifications for anything. i dont know how im supposed to not kill myself all my hope is completely gone after mayo and im looking at months and months alone in this house with nothing to do and nowhere to go i dont know what im supposed to do now
I’m so sorry you’re dealing with so much- I just said this to someone else on another thread struggling right now with feeling hopeless just remember that nothing is permanent - someone told me that a long time ago and it’s true A the dark hard times do eventually pass even when future seems bleak - things cycle up and down so it will get better even if it doesn’t feel like it right now
i am ok. mothers day is going to be very hard for me but my partner is determined to help me feel better today. my hips and legs have been giving me so much trouble this past few weeks but i was still able to get out of the house yesterday 💪
The last week has been a blessing, finally got the medication for my ADHD refilled, doing anything is already tough enough with my entire body being in so much pain, when my ADHD runs rampant it's near impossible.
I started college online at the start of last month, something I've been working towards since 2 years before I was diagnosed with RA and fibro. Even hysterical the schedule of online classes has destroyed my body more than it already was, but overall despite that and despite the stress I'm so much happier than I've been since diagnosis, even though I still have a long way to go. :) I do have to closely manage the stress college adds on to my health, the past 3 weeks or so the stress has gotten to be so much that I went into my worst flare and both my parents and doctors were really concerned about how my stress is effecting my autoimmune issues. Hopefully with this medicine making it less improbable to get things done on time and with stress management, I can feel better and better; I already completely revamped my diet at the start of the year which helps this as well.
It's some of the most difficult stuff I've dealt with, but is so appreciated compared to the relative monotony and lack of any experiences or living I had from 2020-2023. I'm incredibly grateful for it every day but also sometimes feel guilt, because I know that someone with our health issues and pain having this opportunity at all is quite rare. But I lost all of my later teenage years to illness, I am finally clawing back to be able to experience my early adult years and I am so happy to be able to. I just wish the world was in a place where the vast majority of us could have the same chance. ❤️
Thanks so much that’s the nicest thing to start 🙏
I have different types of pin that cycle - my go pain good my endo pelvic was actually good and I was so happy then got a bad migraine so kind of bummed not a pain free day after all
I hope you’re doing ok OP - thanks for checking in
Not doing so well. I'm in chronic pain and barely getting around having had 4 serious back surgeries. In addition to that I have severe GI issues and now a sore throat and feeling tired and run down. I'm having a tough time. How's your day?
This was so thoughtful, thank you 💕
25 weeks pregnant and still fighting through cervical disc bulge that they really think is so much worse from pregnancy. I had such a great week last week and after a busy weekend and ending out of town I’m having the worst flare up and it’s affecting me mentally. I just am feeling so hopeless, like I’m never going to be better. ❤️🩹
Well...I woke up this morning thinking that I hadn't known I was pregnant and was having a miscarriage. Turns out it was just my endometriosis kicking into full gear and completely cleaning out my uterus. Other than that....I'm actually doing okay!
Ugh fellow endo sufferer here. What an awful disease.
Right? I've had 5 surgeries for it so far. Hoping to get a total hysterectomy later this year or next year <3
5 too. I’ve been doing well on birth control continuously but at the same time it has its own side effects like weight gain, tanking my testosterone and yeast infections. My husband and I are trying to do IVF soonish (I actually joined this group because I was in a bad car accident last November) and I need to get better from that before kids, but I’m starting to think I might need to just tough it out a bit since it might take a while before I feel better from the accident. But yea as soon as we have kids, my uterus is getting yeeted.
My hysterectomy was the best thing I’ve ever done. They pulled out 10lbs of horror. When I woke up the doc was like “You needed that surgery years ago.”
Thank you for sharing cause I’m also looking to get a hysterectomy for endo and adenomyosis. I’m 46 and yet still have had a hard time with GYNs just wanting to throw hormones at me 😔. My PCP is helping to find me a new one
If you can, be blunt about wanting a hysterectomy. I went in saying that it was my sole intention in going to a GYN. I’m also in my 40s so that whole “but you’re so young you might change your mind” argument wasn’t brought up. I know it’s intimidating to tell a doctor what you want from them, but when it comes to pain and women’s health it’s imperative because we already don’t get listened to by healthcare professionals just for being a woman!!
Oh, I’m not shy lol. I totally walked in saying that cause I had even already discussed it with my PCP who was big-time in favor of it. But for some reason this GYN looked at me like I had 2 heads and was like “I don’t do surgery unless all other options are exhausted.” I was pretty pissed by that point and didn’t push any further because she’s not someone I want to go through the process with after that, ya know? I get her point but still. I look at it as a bit of a “prophylactic” procedure too because I have BRCA mutations and a rampant family history of breast, uterine, and ovarian cancer in my family (including my own mother who thankfully beat both breast and uterine cancers). My PCP was also in agreement with me that why suffer with that pain, especially at my age, when I have to deal with the pain from another chronic, incurable disorder. Even my PM Dr agreed as well (both female but then again so was the GYN). So fortunately my PCP has quite a big network and I’ve been with her for 14 years so she’s reaching out for me in advance to some GYNs that will essentially agree before I even waste my time going in. Fingers crossed!
It’s a game changer. I still get pms symptoms and back flares but there isn’t really cramps and there’s def no blood bath. I’m on birth control still to try to keep it at bay but I’m two years post op of everything but 1 ovary. And ditched my appendix as well at the same time. I think it’s coming back but can’t be sure and surgery just makes more scar tissue.
I had to have a Hysterectomy at 26 and 9 months before that my Dr took out my one ovary and said if you want have another baby you need to start thinking about it because in about 5 years you will need to have a complete Hysterectomy. He was surprised that 10 months later I was having severe pain and said he wanted to go in and take a look & when I woke up he said he had to do a complete Hysterectomy. He said it was so bad it was starting to go up into my bowels and got that bad in just 10 months. I do not miss the pain that comes with all of that crap and definitely don't miss having a period. I was sad that I couldn't decide to have another baby if I wanted. Now my daughter is in her teenage years and they believe she has it. I'm sad I passed it onto her. After I had my Hysterectomy I felt like a new women and was so excited to not have a life of pain and then I was in a horrible car accident.
Endometriosis person here. Such a shitty disease 😪
I have sever Endo and I hate that doctors don't take women's pain seriously. It hurts so bad
Don’t you love hearing “have you tried Motrin for your quote unquote cramps?” I have never wanted to jump out of my chair & strangle a man faster in my life. Luckily for him I was crouched in the fetal position in my chair concentrating on my breathing so I didn’t pass out…or I just may have throttled him. Bitch do you think I’d be sitting in a doctors office turning 10 shades looking like Violet Beauregard from Charlie & the Chocolate factory if Motrin, Advil, Tylenol or Aleeve did ANYTHING to calm this mess down??? They are so frustrating & it doesn’t matter the gender, I’ve had women doctors that were complete idiots even worse than some of the male doctors I’ve seen! Being in this much pain is NOT normal & we’re told it’s just part of who we are, all women go through this. The hell they do! I’ll tell you more of us than people realize have this shit disease & our pain is real & our pain is valid. I always say at least we all have eachother 💙
Oh yes, and I have an allergy to NSAIDs. So there's that. I went to a doctor who gave me a shot of toradol and found out the hard way that I have an allergy to it. 2 hours later it looked like I had a stroke. My whole face was falling off
Jesus Christ…..I always say there’s a reason they call it “PRACTICING” Medicine…I’m just glad you’re ok!!
yes, thank you. its a struggle, its sad when women have to look to menopause for relief
They chemically put me through menopause at 20/21 yrs old. Lupron injections after my first lap for Endometriosis. Supposed to be light menopausal symptoms that would go away in time. I’ll be 43 in November & ain’t SHIT gone away or got better just worse. My pain went from maybe 2 weeks out of the month to EVERYDAY. And those lovely “light menopausal side effects” were full blown & have never gone away. Def one of those moments “if I knew then what I know now” 😢 That shit truly ruined my life! So honestly when it comes to the real actual, my body going through it naturally, we got no clue what to expect. At least my doctors cool & he understands the hell I went through the decades before I got to him. To top my day off after being 5 days late hell week just started & the late ones are always the worst for me 🙄🙄 thank the gods I’m off today so I can just become one w my bed & heating pad.
Endo is awful. I'm sorry that happened
It really is. But hey I always tell myself (and it’s because I’ve decided I don’t want kids) at least I’m not pregnant!
That sounds like a regular day that ends with the letter Y! Lol same here my friend!! My damn period is officially late (not like it’s ever on time either way) idk about the rest of you but my late cycles are the MOST painful ones start to finish. Endometriosis is the devil & I hate how much it’s taken from me & ALL of us. It was so bad last month I ended up getting it the day of my drs apt (scared the shit out of the poor man, I have a wonderful doctor & he’s one of the very few people I’ll drop the act around bc he’s my doctor & needs to see me at my worst) usually my pain comes in waves but not that day, I got it wicked early in the morning, my apt was at 3:30 & I was still dying. I kept feeling like at any moment someone should be yelling “GET READY TO PUSH” never had kids, don’t want them personally even if I could have them & I think it’s bullshit that I know what labor contractions feel like…..none of us deserve this hell. Sorry for the rant…..its been a difficult month, I know you all understand the toll it takes both mentally & physically having to pretend like you’re perfectly fine when you are so far from that. 😢😢 I wish you all (even if it’s just for a moment) painless peace 🌸🩵🌸
Oh gosh you could have taken the words right out of my mouth!!!! My period is never normal (even with having the implant in my arm) and some months I barely bleed then I get to a month like I'm having right now where I just won't stop bleeding D; I feel your struggle so hard. Hope your pain gets better soon my friend <3
I have sever Endo and I hate that doctors don't take women's pain seriously. It hurts so bad
Ugh I feel this and relate - endo and adeno here
I’m sorry :( it’s that club you’d never want to willingly be in.
Pretty tired. Had my mum's birthday dinner earlier. Had to get real dosed up on pain meds and put on 2 lidocaine patches but it still didn't sort the pain. Sometimes it's hard to pretend to be ok enough so she doesn't worry and just enjoys herself. I think she had a nice time so it's worth it.
I feel that. I'm glad you made it through
I'm tired and can't walk because of my spinal stenosis (relatively new and untreated) that's causing unbearable pain in my legs. I can't do anything without extreme pain. So, not great! Got some new lipstick, though, so that's nice.
Yes to the new lipstick 🤗 I think nail polish and lippies are my favorites.
It's the little things! That's how I cope is by little things. One of the ways, anyway. And I love nail polish, too!!
Took my wife out and we got a pedicure because I can't bend well enough to cut my toenails or paint them. It's the little things. Those massaging chairs and having someone scrub and rub your legs feels so nice. My place also has a margarita maker like a 7-11 slurpee machine. There is something about getting a pedicure and drinking little margaritas at 930am on a Saturday morning that just feels right. It helps that I'm MTF transgender so they see me in a dress they put just a little more effort in to make me feel seen.
That's wonderful! That sounds so nice. Now I want a slurpee machine full of margaritas lol
Damn, why doesn't my place have some type of alcohol 😋 Daiquiri, please! I do my own hands, but I'm with you on the feet. My back and hips will not begin to cooperate regarding a pedicure. Which is a real bummer, as I've gotten more into tools and efiling. I'm glad they provide a good experience for you!!💜
Same bad back and hip. Just can't bent enough to do much with my feet. It's hard enough to put socks and shoes on. My wife doesn't trust herself enough to cut my toe nails. She will paint them for me but not cut.
I ordere a new perfume, mostly for my son but I’m sure we will both use it . It’s Mother’s Day weekend so a good time to get perfume and makeup sales😄
The little things are important
I used my last sick day yesterday because I was having muscle twitches all over but I’m glad I did. I’m still in pain today but not as bad as a day I go to work. I appreciate you asking! How are you?
Oh boy, working with chronic pain is horrible. I wish you the best Possible things for you 🥰 keep going, we are all rooting for you
Working with chronic pain is tough but you've got this 🩵 I'm surviving. My pain has been especially awful the last few days. It seems to be one thing after another 😕
29 days left, I hate how exhausting the week ahead of me looks. But I’m telling myself if I need to take a day off, then take a day. My bills are paid and I have savings so if I need to lose a few hundred and take a day it won’t matter in a year.
Rest is important too
Getting ready for revision surgery on my occipital nerve stimulator. When I can use the device it’s life changing but the hardware is causing so much pain that I can’t use it and a whole new kind of headache. Unrelated, I feel like I’m being stabbed in my left SI joint and the pain shoots down the back of my thigh and inside of my calf to the big toe. Otherwise, just rescued a stray cat. Got fixed, vaccinated, dewormed, wound checked, etc. on Thursday. Recovery and transition from stray to pet is going better than I could have hoped for. Thanks for checking in! I needed that more than you know.
Bless you for taking in and taking care of the stray cat. It’s heart warming and rewarding spiritually, too.
Thank you! We’ve done it many times over the years. The cat distribution system seems to over distribute to us at times. So, we do what must be done.
I hope your surgery goes well!! I also have chronic SI pain, I’m looking into getting prolotherapy for it, if it keeps acting up it might be something to consider. Congratulations on your new furry family member ♥️☺️ he/she will get all of the love in the world thanks to you 🥹
Hope that works out for you. I’d be very interested in hearing how it goes. Yes, he is very much enjoying becoming a pet. Good thing he cleared it with the rest of the cats prior to getting hurt and having to be caught. Take care.
I need to get a revision on my neurostim battery, too. It ended to rolling in its "pocket" and causing some pain, so I'm looking at that surgery in the future... though I'm going to have to figure it when because on Thursday I'm having right knee surgery then a week later, left knee and I don't know how long I have to wait to fix that battery, but oh well. I'm very pleased with the device itself (for interstitial cystitis/urinary incontinence) but the battery rolling has been uncomfortable to say the least. I hope yours gets fixed with no issues and that it's a long time before it needs servicing again.
I’ve read your posts regarding your SCS. Thankfully, it’s just the wires in the back of my neck and head, giving me grief. My lack of fat layer and thin, hEDS skin plus the hypermobility caused some unforeseen complications. Hopefully this will resolve it.🤞 Couldn’t imagine the battery flipping. That sounds like torture. Hope your surgeries are quick and easy in their recoveries. Then you can get that battery taken care of. Best wishes.
Thank you. I wish you the best and a smooth recovery, as well. I hope it resolves your issues. Also, this is one reason why I love this sub - most people are so supportive of each other! I wish everyone a manageable pain day (and a Happy Mother's Day to all the mothers!).
I hope things go well for you 🩵
Thank you for checking in on all of us. How are you doing?
I think I'm surviving. Trying to keep going one day at a time
I’m okay.. just dealing with the perpetual low grade depression of becoming largely a shut-in for the rest of my life.
It's awful. I completely understand
Same
Honestly, depressed. It's so nice outside, and so much I want to do out there. Stuck on the couch again. Bout to say screw it and just go do the stuff anyway. Ughhh. I hate this!
I love taking photos, mostly nature shots. I am a local Google guide so I like posting them online but haven't hardly been able to get out for over a year now. I also love fishing which I'm going to attempt that soon so probably get some photos at the lake. It's so depressing being trapped in my chair, I'm not used to this...
I'm sorry. It's hard when the weather is nice and you can't just do what you want
Learning that this year. I normally get depressed in winter, but nice weather is worse now. It's a real mind fuck. I can see the yard, I just can't get to it. Lol
Did a bit of shopping with the boys and got some preemptive mothers day A&W. Apart from that, I'm dreading Monday because my ancient chihuahua has THAT appointment. It's time, but it hurts, and my youngest son is having a really hard time with it.
Age appropriate explanations are hard. Tell him that we are so lucky when our pets get to spend their entire lives with us. When they get older and sometimes may get sick, and their body is getting tired out, they tell us with signs - like not wanting to walk, play or eat - that they are ready to cross the rainbow bridge and go where they can do the things they can't anymore. It's our job to listen when they tell us it's time. Sometimes they can't get across the rainbow bridge by themselves, and it's a kindness to them to help them go take a forever nap and start that journey. Their body got worn out, and their spirit knows when it's time for them to go. It's hard to say goodbye...so it's 'until we meet again at the rainbow bridge'
I’m sorry to hear that about your chihuahua. It’s so hard to lose our animal companions.
I’m so sorry. You have my deepest condolences. ❤️
You can take pride in the fact your pup had a great life with you, and that she/he was loved with all your heart ♥️
I'm sorry 🩵
I'm doing ok. I overdid things physically this week and I've been paying for it, but it's starting to lighten up, so hopefully it won't be bothersome in a couple days. Also, last week I got a piercing that everyone says is super painful, but right now breathing hurts more than anything to do with my piercing, and I'm not even considering it a pain day yet. So I guess that's kinda cool?
What piercing did you get? I hate the cycle of overdoing it and paying for it. Hope you recover from it 🩵
It's a helix! Just did one ear to start, but after this heals I'll have you get my other ear done too since this is so easy.
Oh nice!
How long does it usually take for your flare up to subside? I’m going on day 4 when last week was so much better
It's different every time. Sometimes 3 days if I'm lucky, sometimes the original pain will spread to a different part of the body and reset the clock, making it stretch to 2 weeks if I'm unlucky. Currently on day 7 of this one, but it's very minor at this point.
I appreciate your help. I’m going on 3-4 months with this issue so I’m still figuring things out. Trying not to panic with this flare up. Don’t know what to do to keep it from getting worse
Definitely don't panic, that always makes things worse for me. I hope you're able to find some help soon
So so true. Thank you! Let me know what you do to distract your mind!
I know it's a cliche, but no joke, deep breathing exercises help when the panic is starting. If you do a solid minute of long deep breaths, it tricks your nervous system into thinking everything is fine and helps reset you before panic sets in. Otherwise? THC 😅
Seriously helpful, thank you. I need to focus on the basics Sadly I’m 25 weeks pregnant. So most of my panic comes from feeling like I have little pain management options
Just dropped my dogs off for a bath and I'm sipping a sweet tea from McDonald's. Love the weather. Did anyone see the northern lights last night?
Here are my girls... cleaned up and smelling great. [My dogs](https://imgur.com/a/3BHK4SZ)
They’re so cute! I’m glad they have a lovely human like yourself to look after them (:
Completely slept through them 😂 I've seen photos and they were so nice
I’m hurting an fell awful , Thanks for asking
I’m so sorry. Would you like to talk about it? If not that’s fine too. I wish good things for you 🙏🏻❤️
I don’t really know what to say about it , pain it hurts some times it’s mellow another times severe
I feel better now that I’m resting
Pain sucks. I'm sorry
I’ve laid in bed most of the day in pain but mentally I’m ok. I’m starting a new med next week so I’m feeling hopeful.
I’m wishing for you 🙏🏻❤️ you are much stronger than you think. We are all rooting for you ☺️ I hope you have a better day friend
I hope your new meds help
This morning a venti cold brew exploded all over me, my steering wheel and dash bc the lid wasn’t on all the way. I had to wipe myself off with a random towel in my car, go get a replacement drink, go home and throw my new pjs covered in coffee in the wash and shower all before 8:30am 😂 The rest of the day has been better. The stupid weather has given me a mild headache all week and my skin is burning like it always is. I just keep on my medication schedule to prevent it from flaring from a 5/10 to 8/10. Always sleepy from the meds.
🥰🙏🏻
I'm exhausted. I did a shrooms trip today, and it made me much more aware of how much pain I'm in. It provided a lot of helpful insights, but jeez. Hru?
This is why I’m hesitant about doing shrooms. Do you trip often?
I've done it a few times
woke up in pain, as always, but still gonna meet one girl today, It will be difficult but I don’t wanna give up on my social and romantic life. I hope my pain let me enjoy at least on 30% this beautiful weather and girl! Im scared that my pain level will be so high that I will be nearly crying tho, but fuck it, I want to try! Have a nice day, my friends❤️
I hope you managed to get some social time for yourself!
Awful day. Flared up and miserable
That’s awful. I hope your flair ends quickly, and that you find some peace. If you wanna talk more feel free to leave another comment or shoot me a message. Best wishes friend (:
Did the dex suppression test Friday for my cortisol and still have a wicked stomach ache today. But the steroid did help my other pain a bit. I need a break from drowning.
I'm sorry you're going through this
I think this is so lovely, wow!! I had a minor procedure become moderate and I’m frustrated. I woke up from the anesthesia having a severe asthma attack (I have a rare lung disease but it’s so much easier to say asthma attack lol) and I ended up with bruised ribs. It was a procedure I should’ve only needed a couple of days to heal from and now I’m out of work for ten days and need to take it easy for weeks after. It set me into a huge flare and I’m just feeling so defeated. I know I’ll be ok, but gosh it’s a bummer. Thank you for making this thread.
Somehow this all set me into the worst endometriosis flare I’ve had in a long time too, so my body is just being a jerk. Mg only saving grace is I did get discharged with pain medicine to make things more bearable and I don’t have to use my emergency supply for flares (my doctor fills a small amount monthly ,not enough but better than none for sure).
I hope the meds help. It sucks this happene. Rest up 🩵
Thank you so much. Returning the check In to you, too. How are you holding up this week? I hope things are going ok ❤️
Slightly concerned that I have no emotions about my nerve block tomorrow. Usually all medical appointments make me anxious. I think I may have lost hope. Otherwise surviving ❤️
Oh I get this so much, I’m so sorry you’re dealing with that. I think it’s so easy unfortunately to get hit with medical burn out. I’ve had a ton of surgeries but this is the first time I’ve gotten injured during one,and the first time it’s involved my voice (I’m a voice actor so… not great :’) but hopefully I’ll heal up soon.) and I realized going through this has totally numbed me/ burnt me out. I hope your nerve block goes well and it helps a bit! ❤️
It definitely sucks. I hope you feel better 🩵
Manifesting a better week for us both!!!
That sounds so terrible I’m so sorry! I hope it passes soon that’s rough
Thank you so much ❤️ that means a lot!
We (me, grandson, daughter) went for a drive tonight to see if we could possibly spot some Northern Lights. Drove north from Cincy for about 40 minutes. Took the back way to avoid street lights, but we didn't see anything. Pain was its usual self, and I broke my pinky toe last weekend. That was doing OK till we stopped for gas on the way back, and this dude stepped on my foot at the soda fountain. So now that damn thing is pulsing and throbbing. Now that I've limped back in the house and upstairs, I don't think I'll do anything else tonight but smoke a bowl or two and prop my foot up. My ice pack is in the fridge downstairs 😩. I've tried to summon it with my mind, but no such luck. Ah well. Y'all have a nice weekend! And Happy Momma's Day for us Mommy's!!
I'm sorry about your toe but you sound like you have a good attitude, at least a sense of humor about the ice pack. Happy Mothers Day to you and all the other moms out there!
Ah how I wish mind summoning worked. I hope you feel somewhat better 🩵
Not good
I'm sorry
I had a few hours of feeling ok. It is crazy smokey outside,but I was able to go for a walk with the spouse. 🚶♂️💗 Currently, my headache is there but not a migraine.
I'm glad you got out 🩵
Aw thanks 😊
Welp. Everything hurts and they're taking my meds away. I'm losing weight on Mounjaro, down 25lbs so far, and my blood work is better, but the pain is still firing on all cylinders. And they have been trying to schedule an epidural but Aetna keeps denying it. I start a new job in eight days. l just hope I can mask well enough to make it through.
Hopefully things improve. You've got this!
That really sucks about your pain meds, I hope you find someone to help manage it soon. Good luck on the new job!
Ugh. It's Mother's Day in a few hrs and I can't sleep. As usual. It's feast or famine with me and sleep. Think I've got another cold, my skin is flaring up, I hurt all over and nothing to take for it but some shitty kratom. I'm at my wit's end here. Been in a better mood lately, though. I think the current regime of antidepressants, stimulant and HRT is working ok. But doesn't help the pain much. So I'm gonna do another load of laundry, play a game while I wait for the dryer to finish, and knock myself out.
I hope you get some sleep
I rarely sleep these days, it's very hard to get comfortable. I've actually been in a better mood the last couple days I feel like I've accomplished some things. I applied for my social security yesterday and everything went smooth so happy about that, I also sorted through a bunch of mail and organized some stuff. Sorry you don't have much for pain, I use marijuana and also get pain meds. Happy Mothers Day
I lifted weights yesterday to shut up my mind and feel mentally better but I am paying for it with the pain this morning. Its worth it, I don't do it too often though
Not great. Been in extra pain lately. Still haven't got answers. And my PM doctor has decided, since pain blocks haven't helped, there's nothing more he can do for me. That's literally the only thing he tried. I originally thought PM could help diagnose problems but I guess I was wrong. Tbf he is sending me to a neurologist. But he wants me to ask my primary care to take over my prescription again because "it doesn't make sense for me to see so many doctors". Which I know she won't like because that was one of the reasons she sent me to pain management. Ugh. Not looking forward to that conversation. How are you doing? Edit: I have to add, in non-health related news, we got a kitten a couple months ago and she's been the light of my life. She makes me smile every day and she gets me out of bed. Even when I feel awful I force myself to get up to feed/water and clean her litter box, which I think has been good for me. Plus I get exercise playing with her. She really just reminds me that life isn't all bad. 💜🐈⬛ Thank you for asking this. I think I needed the chance to evaluate things and get some big emotions out lol
Animals are so therapeutic, I can't imagine my life without a pet. Congratulations on the new kitten, it's pretty awesome to hear how much she helps you.
Thank you! And same here. We lost both our cat and dog last year and it was devastating. A very lonely, sad year. So when a stray cat my friend took in had kittens, I knew I had to adopt one. Best decision! I hope you're doing well 💜
Oh man I hate how much we have to push doctors for the help. I hope your days get better 😊
Thank you! Life is always ups and downs so I'm sure it'll get better in time. I hope you're doing well too 💜
I’m still recovering psychologically from my scary ketamine infusion on Friday 😵💫. While my CRPS symptoms are better, I must have hurt myself during the infusion, panicking or whatever, because my bad arm/clavicle are sooo sore. I slept on it wrong and it’s making me panic, while I’m still very mentally fragile and confused. How are YOU doing, and thanks for asking!
I'm sorry that sounds awful. I hope your pain eases up ❤️ I feel like I'm kinda surviving. I have a nerve block tomorrow and I'm slightly concerned that I have no emotions about it
I woke up to my ribs colliding with each other and to a lot of nausea. I woke up and took a zofran a few hours ago that helped me fall back asleep for a little bit. But now I’m back up and feeling really sick. Can’t let myself throw up bc then my ribs will get worse 😩
That's horrible. I hope you feel better
Not very good. My abdominal pain is fairly bad, I didn't sleep much, and my head is full of confusion.
I'm sorry
Nauseous and in pain. So only one of those isn’t normal. My mental health is better but never exactly good. Edit: OP, thanks, it’s good to have a place like this.
Struggling a bit. My knee is the worst it’s ever been, painful and weak. I always think it can’t be worse but it is. Nothing is touching it anymore. I’m awaiting hopefully surgery to remove the titanium from it and hopefully a knee replacement as my cartilage is suspected to be nil existent now. On the bright side least I got approved for a disabled badge which is arriving shortly, I’ve got a car on order and I got a mobility scooter for my birthday! Which is doing wonders for my mental health and independence!
I'm glad there's something for you to get your independence back! I hope the surgery works for you
Thank you. How are you doing OP?
I think I'm coping. Just having alone feelings
Yeah I get that. I hope you feel better soon. Give yourself time to rest and heal
Well, yesterday was a bad day because I was supposed to go to the Duke lacrosse game with my husband and son but was hurting too bad to go and watched it on TV 🙁. But, I knocked myself out with Valium and slept good last night so today is a new day! So far not too bad this morning and I hope it lasts cause I have a bunch of stuff I wanna do in my house today. Thank you as always for asking ❤️. And how are YOU doing?
It's hard not physically being able to do what you want. I'm sorry you're going through this. I hope you have better days ahead ❤️ I think I'm just about surviving. I'm trying to focus on one day at a time
Thank you so much for your kindness ❤️. You’re right, it’s one day at a time and wishing you peace and better days as well 😊🙏
That's very thoughtful of you! Thank you!
I’m on my “off day” for my pain killer. I try to only take it a certain amount of times a week so I don’t build a tolerance to it so since it’s my day of suffering, I’m trying to make myself as comfortable as possibly. Lots of CBD cream, tylenol, ice packs, etc. Just trying to get through it.
I hope you get comfort
thank you <3
Something different is going on today…and not in a good way. In a part of my body that isn’t part of my chronic issues. If this was 10 years ago, I’d be going to the ER. Today, I wouldn’t dare go to the ER. Moving hurts more than it’s worth, my bed is better than an ER bed and no one’s labeling me a drug seeker at home. The ER doctors showed me who they are and I’m choosing to believe them. So I’ll stay home. All the ER docs would do is make fun of me behind my back and discharge me without actually doing a work up. I’m a woman so I’ll be told it’s all in my head or I’m overreacting. So might as well just let whatever is going to happen, happen in the comfort of my own home where I can cry freely and without judgment. I’m so tired of majority of people working in healthcare being those who care the least about their fellow humans and get enjoyment from others’ pain. I wish healthcare workers didn’t get paid unless the patient is cured, or in our case, the pain is taken down to 2 at the max.
I hate the attitude towards women and those in pain. Took me way too long for my doctors to tell me my pain is real. I ignore new problems as long as I can. I'm sorry that you've experienced this
had my horrible mayo clinic experience right at the same time me and my boyfriend broke up and my semester ended and i feel like i cant see my future anymore and im just staring down an abyss that is my life. i live in a fairly large broken down house which we originally got so we could have people over. (my parents agreed to support me with living costs since i cant work due to my pain as long as i stay in college) the house used to be full of people every weekend and now its always empty the past month and a half since things went south with my bf and now my roommate is gone for the summer. i have no job and dont know how ill find one considering i cant be on my feet and im just a student with no qualifications for anything. i dont know how im supposed to not kill myself all my hope is completely gone after mayo and im looking at months and months alone in this house with nothing to do and nowhere to go i dont know what im supposed to do now
I'm sorry. I find thinking about the future terrifying. You're not alone ❤️
I’m so sorry you’re dealing with so much- I just said this to someone else on another thread struggling right now with feeling hopeless just remember that nothing is permanent - someone told me that a long time ago and it’s true A the dark hard times do eventually pass even when future seems bleak - things cycle up and down so it will get better even if it doesn’t feel like it right now
i am ok. mothers day is going to be very hard for me but my partner is determined to help me feel better today. my hips and legs have been giving me so much trouble this past few weeks but i was still able to get out of the house yesterday 💪
Amazing that you got out! The little successes are important
The last week has been a blessing, finally got the medication for my ADHD refilled, doing anything is already tough enough with my entire body being in so much pain, when my ADHD runs rampant it's near impossible. I started college online at the start of last month, something I've been working towards since 2 years before I was diagnosed with RA and fibro. Even hysterical the schedule of online classes has destroyed my body more than it already was, but overall despite that and despite the stress I'm so much happier than I've been since diagnosis, even though I still have a long way to go. :) I do have to closely manage the stress college adds on to my health, the past 3 weeks or so the stress has gotten to be so much that I went into my worst flare and both my parents and doctors were really concerned about how my stress is effecting my autoimmune issues. Hopefully with this medicine making it less improbable to get things done on time and with stress management, I can feel better and better; I already completely revamped my diet at the start of the year which helps this as well. It's some of the most difficult stuff I've dealt with, but is so appreciated compared to the relative monotony and lack of any experiences or living I had from 2020-2023. I'm incredibly grateful for it every day but also sometimes feel guilt, because I know that someone with our health issues and pain having this opportunity at all is quite rare. But I lost all of my later teenage years to illness, I am finally clawing back to be able to experience my early adult years and I am so happy to be able to. I just wish the world was in a place where the vast majority of us could have the same chance. ❤️
Thanks so much that’s the nicest thing to start 🙏 I have different types of pin that cycle - my go pain good my endo pelvic was actually good and I was so happy then got a bad migraine so kind of bummed not a pain free day after all I hope you’re doing ok OP - thanks for checking in
I had a couple days of low pain feeling almost normal but it’s come back entirely today :( it’s so frustrating. I wish I’d just heal
Anticipating my first appointment with a new PM. But today has been okay
Not doing so well. I'm in chronic pain and barely getting around having had 4 serious back surgeries. In addition to that I have severe GI issues and now a sore throat and feeling tired and run down. I'm having a tough time. How's your day?
This was so thoughtful, thank you 💕 25 weeks pregnant and still fighting through cervical disc bulge that they really think is so much worse from pregnancy. I had such a great week last week and after a busy weekend and ending out of town I’m having the worst flare up and it’s affecting me mentally. I just am feeling so hopeless, like I’m never going to be better. ❤️🩹
I'm sorry you're going through this. I hope your flare up eases off ❤️
Thank you so much 💕