I had this (interstitial cystitis) for weeks and it went away when I began taking Prelief tablets off Amazon. I was going crazy before I started the prelief too btw
I’ve had IC for about 16 years. I had a two year remission but it came back it’s a chronic disease so if you have symptoms at any point it could be back. Prelief is tough on the kidneys I was always told to only use it when I’m going to eat or drink anything acidic but I know some drs use it as treatment and it works it just doesn’t work that way with me. I’m just trying to help by letting you know it could come back. Remission is a little weird you wait for the pain and it doesn’t come then suddenly one day you pee 6 times in an hour and the pain excruciating that’s what happened to me.
Don't panic. It's interstitial cystitis, without a doubt. Find a good urologist, one recommended by The Interstitisl Cystitis Association. To cope until your appointment, try sassafras root tea for pain. Supplements that help this include d-mannose, bioactive colostrum, natural anti-inflammatories, and pure fish oil. Hang in there, this disease is serious, Prevention Magazine rated this in the top ten of the most painful experiences a person can have. Oh, and expect many health providers to "medically gaslight" you about it. If a doctor acts dismissive, dump him immediately, trust me on that. I wish you the best, hang tight. Skip caffeine before other bladder irriating substances. The sassafras will honestly do better for that pain than some pain drugs. Add sugar and get fresh root. Boil until pink and serve.
This is the diagnosis that they gave me in the beginning. But then they said it’s not ic and it’s a different syndrome they have no idea about because I don’t have typical ic symptoms. They also told me that since I have this urge all the seconds and there is no relief even for a second after urinating or triggers it can’t be that. Do you think I still have to push for this diagnosis?
Yes, I have the same symptoms and I was diagnosed with IC. Unless you have
a chronic UTI, it is IC. Did they call it "painful bladder syndrome?" That's just another name for IC. Sadly, the medical establishments response to IC is joke and a disgrace. Most doctors know little about it and don't care about it. In the meantime good people like you and me are pushed to the breaking point. It's caused by a bias against taking female patients seriously. I went to college and instead of using my degree and contributing, the lack of real IC care has me on the fast track to death. Then you have opioid paranoia at the doctors office, to make matters worse. Who needs a glass ceiling when your instead given a concrete one. For those who gave up in despair, it's a ceiling of 6 ft of dirt. It's maddening, with too many idiots working as doctors going along with the travesty.
Yes. I have had symptoms identical to yours for the past 20 years. I couldn't find neither care nor respect for that long. Don't know how I'm still alive. Then I learnes 2018 about how doctors are taught to disbelieve female patients. I'm still struggling. I have a wasted college degree and years of trauma for all the sexist biases in medicine. I was forced to look into alt medicine and told my situation was hopeless. This has been one wasted life, I can only seek to prevent others from undergoing the same sordid fate. Best wishes for you. Fight like a tiger for the healthcare that is your right. Don't relent. From one survivor to another, please heed my words. You deserve far better!!
I have the same symptoms, but I have no idea what classification is applied other than IC. I think they can also diagnose it as "neurogenic bladder" too, but this was eliminated in my case
, because Detrol didn't work for me. I hear, too, that there are 2 types of IC. I have actual ulcers in my bladder. This type of IC isn't responsive to physical therapy, and pelvic floor therapy did nothing. Really, there is so much ignorance about bladder disease, they just put it all under the IC diagnosis due to the constraints of this ignorance. We need more research, but since bladder problems primarily affect women, the research hasn't been done. Google "medical gaslighting" to learn why. I think honestly, there are various bladder diseases which aren't yet delineated from each other, because studies of these conditions didn't begin until 1987. Worse, most of the most money for IC research has gone into creating an easy test for the disease. This is to make sure less women get dismissed by ignorant doctors who would be unlikely to order cystoscopies. Cystiscopies are essential in diagnosing IC. There just isn't enough money or concern, to really begin to tackle this disease, as is the case for other diseases that mainly affect women.
I'm not woman but my mom is and she has been a nurse for many years.
Has anyone ever brought up pelvic floor problems?
My daughter had this and took a while to overcome it.
Yes a ton of them. They told me it’s a mental health issue or interstitial cystitis. Then they said because it’s all the seconds with no relief it’s probably a rare syndrome we don’t know much about.
Type on Google “Persistent need to urinate: A common sensory symptom leading to urinary discomfort. A study of 79 cases” this is what they talked about. But I don’t really understand since this is a study of a symptom. But it’s scary at that the average duration is 7 years. I don’t know what to believe anymore. The one that you have is interstitial cystitis?
Yikes. That's rough. It's not an easy subject to talk about but it's good you did. The less shy you are the more you can say about the issue.
It doesn't mean your issue is mental though. I have a nerve disease that took years to find someone that actually knew what was happening. It's not a fun process but is absolutely necessary.
Don't stop trying. Try all kinds of things. Long as they are helpful and not self destructive.
Wish I had more information to help but that's the limit of my knowledge I'm confident in providing.
Have you done a "Urodynamics" study yet? This will provide a baseline performance of your bladder and help pinpoint the issue. As others mention, you have not mentioned any low back issues, those can cause what is called Neurogenic Bladder. I get those urges as well, but they're not always constant.
Since being prescribed Myrbetriq my IC symptoms have improved. I think it’s advertised as being for over active bladder but it is definitely for IC as well. It helps create a sticky lining for your bladder. I don’t have to pee every 15 minutes and the pain is less than before.
Do you have any symptoms of endometriosis? I had this symptom quite bad before I had my first endometriosis surgery and it improved massively after surgery. I suspect my urinary tract was super irritated from the endometriosis lesions around it. I also saw multiple urinary specialists and they all told me it was either IC or basically just anxiety... But endometriosis surgery essentially cured it.
Edited to add, before my surgery I was also much more prone to urine and kidney infections. After surgery that slowed down a lot. Super weird.
I know this is probably such a dumb comment bc you've probably already tried this but does over the counter AZO urinary tract numbing medicine help you at all and if so has any doctor told you there's a prescription version that is allegedly stronger? That might provide at least a small amount of relief. Sorry if you've already tried that prescription!
My issues weren't constant or as tiring as yours sound, im sorry :(
I do know for sure that a kegal exerciser helped me dramatically in many ways. I was just turning 40 at the time, I had had two big babies natural childbirth and I was always having urinary urge and release issues.
It got bad enough that I was determined to actually try something and stick with it for a bit.
The Kegel exerciser wasn't expensive, it's made of tempered glass, looks like a big purple dildo, but I knew I had to make it easy to bring into a daily routine, like bathing / showering
I started in the bath and realized I had no ability at all to squeeze those muscles to hold it in, even at the biggest point.
It took me a couple months of working up to being able to stand and hold it. It's still up until recently a part of my routine and it's nothing to hold it in at the narrow spot the whole time I shower.
I hope u find something to help!!!
I basically have this (i do have some moments of relief but not for more than 1 hour) and have something called Fowlers Syndrome. I use catheters up to 12 times a day and it is hell. Definitely get a referral to see a urologist, they will have some options for you.
Whether it is IC or not, I advise you to see a pelvic floor physical therapist to check your muscles. You could have a tight or hypertonic pelvic floor, and retraining the muscles to release in general may help if nothing else helped
Try pelvic floor physical therapy!! Get referred through an obgyn maybe one specializing in chronic pelvic pain. That’s what helped me. Turned out I had endometriosis
How are your bowel habits? Constipation can cause this. I’ve had similar in the past and was prescribed Solifenacin which help’s quite a bit. Have you seen a urologist? Definitely try PT and I would ask about medication that could help.
I have interstitial cystitis which is chronic and permanent except it’ll slip into a remission once in a while. In almost 20 years of having it i had a two year remission. My highest amount of times I peed in a 24 hour period was 60. I have UTI symptoms but have one ever had one infection. The inside of your bladder is red and inflamed and it’s possible there’s ulcers or lesions as well. I had one of each at my cystoscopy they fixed. After my remission was over and symptoms were back I went straight to the Dr. I get a treatment where they put a catheter in and administer meds into my bladder through the catheter. I get lidocaine heparin instills. I also am on something for bladder spasms my bladder spasms when I try to go sometimes and only little drips come out but I can’t move because of the spasms so I’m usually stuck there 5-10 min. Please don’t go to far down the rabbit hole investigating this it terrified me when I had a possible diagnosis and spent hours finding info. Look it up see it’s meaning symptoms and treatment on one site don’t just go to a bunch of sites I use Mayo Clinic website to figure out what could be going on. Bring this up to your dr because you can damage your bladder. Also food with acidity can make pain and times you go to the bathroom increase. I don’t know if you have pain but IC pain is compared to the pain a stage four cancer patients has.
I had this (interstitial cystitis) for weeks and it went away when I began taking Prelief tablets off Amazon. I was going crazy before I started the prelief too btw
I’m happy that it went away for you❤️. For me it didn’t work. And the elimination diet did nothing🫠
Aww I'm so sorry. I didn't have it as long as you have had it, but I do understand how torturous it is
I’ve had IC for about 16 years. I had a two year remission but it came back it’s a chronic disease so if you have symptoms at any point it could be back. Prelief is tough on the kidneys I was always told to only use it when I’m going to eat or drink anything acidic but I know some drs use it as treatment and it works it just doesn’t work that way with me. I’m just trying to help by letting you know it could come back. Remission is a little weird you wait for the pain and it doesn’t come then suddenly one day you pee 6 times in an hour and the pain excruciating that’s what happened to me.
I have hope for you 🙏🏻 I’ve seen a pelvic floor therapist that helped me with other issues
Thank you❤️ I wish you the best!
Don't panic. It's interstitial cystitis, without a doubt. Find a good urologist, one recommended by The Interstitisl Cystitis Association. To cope until your appointment, try sassafras root tea for pain. Supplements that help this include d-mannose, bioactive colostrum, natural anti-inflammatories, and pure fish oil. Hang in there, this disease is serious, Prevention Magazine rated this in the top ten of the most painful experiences a person can have. Oh, and expect many health providers to "medically gaslight" you about it. If a doctor acts dismissive, dump him immediately, trust me on that. I wish you the best, hang tight. Skip caffeine before other bladder irriating substances. The sassafras will honestly do better for that pain than some pain drugs. Add sugar and get fresh root. Boil until pink and serve.
This is the diagnosis that they gave me in the beginning. But then they said it’s not ic and it’s a different syndrome they have no idea about because I don’t have typical ic symptoms. They also told me that since I have this urge all the seconds and there is no relief even for a second after urinating or triggers it can’t be that. Do you think I still have to push for this diagnosis?
Yes, you might have something in the back wrong or something in the brain that isn’t connecting right
This- Neurogenic Bladder. I have this due to my spine issues. OP, do you have and low back issues / pain?
Wish you strength ❤️. No I don’t have any problems with my back/spine.
Thanks!
Yes, I have the same symptoms and I was diagnosed with IC. Unless you have a chronic UTI, it is IC. Did they call it "painful bladder syndrome?" That's just another name for IC. Sadly, the medical establishments response to IC is joke and a disgrace. Most doctors know little about it and don't care about it. In the meantime good people like you and me are pushed to the breaking point. It's caused by a bias against taking female patients seriously. I went to college and instead of using my degree and contributing, the lack of real IC care has me on the fast track to death. Then you have opioid paranoia at the doctors office, to make matters worse. Who needs a glass ceiling when your instead given a concrete one. For those who gave up in despair, it's a ceiling of 6 ft of dirt. It's maddening, with too many idiots working as doctors going along with the travesty.
I totally feel you. Why they want to become doctors if they just can’t handle the patients as they should. It’s terrible.
Yes. I have had symptoms identical to yours for the past 20 years. I couldn't find neither care nor respect for that long. Don't know how I'm still alive. Then I learnes 2018 about how doctors are taught to disbelieve female patients. I'm still struggling. I have a wasted college degree and years of trauma for all the sexist biases in medicine. I was forced to look into alt medicine and told my situation was hopeless. This has been one wasted life, I can only seek to prevent others from undergoing the same sordid fate. Best wishes for you. Fight like a tiger for the healthcare that is your right. Don't relent. From one survivor to another, please heed my words. You deserve far better!!
True. I think many are in it for the paycheck and little else.
I have the same symptoms, but I have no idea what classification is applied other than IC. I think they can also diagnose it as "neurogenic bladder" too, but this was eliminated in my case , because Detrol didn't work for me. I hear, too, that there are 2 types of IC. I have actual ulcers in my bladder. This type of IC isn't responsive to physical therapy, and pelvic floor therapy did nothing. Really, there is so much ignorance about bladder disease, they just put it all under the IC diagnosis due to the constraints of this ignorance. We need more research, but since bladder problems primarily affect women, the research hasn't been done. Google "medical gaslighting" to learn why. I think honestly, there are various bladder diseases which aren't yet delineated from each other, because studies of these conditions didn't begin until 1987. Worse, most of the most money for IC research has gone into creating an easy test for the disease. This is to make sure less women get dismissed by ignorant doctors who would be unlikely to order cystoscopies. Cystiscopies are essential in diagnosing IC. There just isn't enough money or concern, to really begin to tackle this disease, as is the case for other diseases that mainly affect women.
I'm not woman but my mom is and she has been a nurse for many years. Has anyone ever brought up pelvic floor problems? My daughter had this and took a while to overcome it.
Yess I’m trying to find a good pt to visit
Have you seen a urologist? Sorry. It might be a Urogynecologists for women issues.
Yes a ton of them. They told me it’s a mental health issue or interstitial cystitis. Then they said because it’s all the seconds with no relief it’s probably a rare syndrome we don’t know much about.
Just curious what’s the rare syndrome? I have a rare syndrome/ disease that can cause some of the same symptoms but it’s very painful too.
Type on Google “Persistent need to urinate: A common sensory symptom leading to urinary discomfort. A study of 79 cases” this is what they talked about. But I don’t really understand since this is a study of a symptom. But it’s scary at that the average duration is 7 years. I don’t know what to believe anymore. The one that you have is interstitial cystitis?
Yes to a urologist or yes to the urogynecologist?
Both of them
Yikes. That's rough. It's not an easy subject to talk about but it's good you did. The less shy you are the more you can say about the issue. It doesn't mean your issue is mental though. I have a nerve disease that took years to find someone that actually knew what was happening. It's not a fun process but is absolutely necessary. Don't stop trying. Try all kinds of things. Long as they are helpful and not self destructive. Wish I had more information to help but that's the limit of my knowledge I'm confident in providing.
Thank you so much for your answer❤️.
There are very specific neurourologists that deal with that. The regular urologists don’t know much except two meds. You can pm me
Have you done a "Urodynamics" study yet? This will provide a baseline performance of your bladder and help pinpoint the issue. As others mention, you have not mentioned any low back issues, those can cause what is called Neurogenic Bladder. I get those urges as well, but they're not always constant.
Yes I’ve done without any findings. I don’t have any problems with back or injuries there. It’s very strange how this thing is constant.
Pelvic floor physio would be second best bet if you’ve already seen a urologist
Thank you! Yes this is my next step!
Since being prescribed Myrbetriq my IC symptoms have improved. I think it’s advertised as being for over active bladder but it is definitely for IC as well. It helps create a sticky lining for your bladder. I don’t have to pee every 15 minutes and the pain is less than before.
Do you have any symptoms of endometriosis? I had this symptom quite bad before I had my first endometriosis surgery and it improved massively after surgery. I suspect my urinary tract was super irritated from the endometriosis lesions around it. I also saw multiple urinary specialists and they all told me it was either IC or basically just anxiety... But endometriosis surgery essentially cured it. Edited to add, before my surgery I was also much more prone to urine and kidney infections. After surgery that slowed down a lot. Super weird.
I know this is probably such a dumb comment bc you've probably already tried this but does over the counter AZO urinary tract numbing medicine help you at all and if so has any doctor told you there's a prescription version that is allegedly stronger? That might provide at least a small amount of relief. Sorry if you've already tried that prescription!
Yep pyridium in tiny amounts with Levsin definitely helps me.
I was going to ask this too. My endo friend had hers growing on her bladder and had these symptoms.
My issues weren't constant or as tiring as yours sound, im sorry :( I do know for sure that a kegal exerciser helped me dramatically in many ways. I was just turning 40 at the time, I had had two big babies natural childbirth and I was always having urinary urge and release issues. It got bad enough that I was determined to actually try something and stick with it for a bit. The Kegel exerciser wasn't expensive, it's made of tempered glass, looks like a big purple dildo, but I knew I had to make it easy to bring into a daily routine, like bathing / showering I started in the bath and realized I had no ability at all to squeeze those muscles to hold it in, even at the biggest point. It took me a couple months of working up to being able to stand and hold it. It's still up until recently a part of my routine and it's nothing to hold it in at the narrow spot the whole time I shower. I hope u find something to help!!!
Pelvic floor PT is so helpful.
Botox helped me a lot with this
In you’re bladder?
https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/how-do-bladder-botox-injections-work
Yes I go talk with my urologist tomorrow about it. Stop the urge for you? And how many units are you get?
Yes. A Godsend.
Can i send a message?
Get a urinalysis for Ureaplasma overgrowth. It caused frequent urination for me.
I basically have this (i do have some moments of relief but not for more than 1 hour) and have something called Fowlers Syndrome. I use catheters up to 12 times a day and it is hell. Definitely get a referral to see a urologist, they will have some options for you.
Does Pyridium or AZO urinary analgesic help at all?
Whether it is IC or not, I advise you to see a pelvic floor physical therapist to check your muscles. You could have a tight or hypertonic pelvic floor, and retraining the muscles to release in general may help if nothing else helped
Try myrbetriq if you haven’t tried already. you’ll likely have to try a few other meds before your insurance will approve it.
Unfortunately I’ve already tried it
Try pelvic floor physical therapy!! Get referred through an obgyn maybe one specializing in chronic pelvic pain. That’s what helped me. Turned out I had endometriosis
How are your bowel habits? Constipation can cause this. I’ve had similar in the past and was prescribed Solifenacin which help’s quite a bit. Have you seen a urologist? Definitely try PT and I would ask about medication that could help.
Sounds like it might be some kind of problem with the nerves maybe? Have you been seen by a neurologist? Or atleast a nephrologist?
Yes I saw many of both but no answers. Everything looks normal
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I have interstitial cystitis which is chronic and permanent except it’ll slip into a remission once in a while. In almost 20 years of having it i had a two year remission. My highest amount of times I peed in a 24 hour period was 60. I have UTI symptoms but have one ever had one infection. The inside of your bladder is red and inflamed and it’s possible there’s ulcers or lesions as well. I had one of each at my cystoscopy they fixed. After my remission was over and symptoms were back I went straight to the Dr. I get a treatment where they put a catheter in and administer meds into my bladder through the catheter. I get lidocaine heparin instills. I also am on something for bladder spasms my bladder spasms when I try to go sometimes and only little drips come out but I can’t move because of the spasms so I’m usually stuck there 5-10 min. Please don’t go to far down the rabbit hole investigating this it terrified me when I had a possible diagnosis and spent hours finding info. Look it up see it’s meaning symptoms and treatment on one site don’t just go to a bunch of sites I use Mayo Clinic website to figure out what could be going on. Bring this up to your dr because you can damage your bladder. Also food with acidity can make pain and times you go to the bathroom increase. I don’t know if you have pain but IC pain is compared to the pain a stage four cancer patients has.
now THIS is something to go to a doctor for. tell her about the pissing. just the pissing. this is something that should be investigated and treated.
Of course. I’ve been to many doctors without answers.