Interstitial Cystitis (Painful Bladder Syndrome)
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Institial cystitis/chronic pelvic pain syndrome
August 2011
Sad for me that after living with chronic UTI's for the 46 years (since I was 6 years old), I seem to have developed institial cystitis and chronic pelvic pain syndrome. I know all the tricks for bladder infections, but this new phenomenon has me a bit floored -- this bout of pain has lasted 3 weeks and though I take care of myself and do all the things I'm supposed to, take pyridium regularly (which makes me sick) and while it usually subsides throughout the day, it returns each morning with a vengeance. Anyone have a longer-term history with this malady who has tricks that work? My quality of life has suddenly and dramatically declined. My work life is affected (I just don't feel good), and my sex life -- well, what's that?? Thanks for any wisdom you can impart. - Anony
I would highly recommend that you consult with Dr. Andrew Cook in Los Gatos. He specializes in chronic pelvic pain, interstitial cystitis and endometriosis. I am almost pain free after many years of misery. His outfit is called Vital Health Institute. Anon
I know your pain. It took me two years to convince my primary care physician that this might be an issue for me, and in the meantime, I found the best doctor ever to deal with this issue. His name is Jerome Weiss. He is in San Francisco, and is considered the pioneer in his field.
In my case, I had a stitch from a previous surgery that was protruding into a spot in my urethra and causing considerable pain and well as incontinence.
It took a few visits, but it was worth it. I am pain free. He does some unusual things, but he knows his stuff. He also has a full staff of alternative and support practitioners. I recommend him without hesitation. aluckymom
I am also a long-term sufferer ( 20 yrs) of interstitial cystitis (IC) and Chronic Pelvic Pain Syndrome (CPPS) and I understand what those daily struggles look like. Since I'm unable to take the medication I maintain a strict daily diet by eliminating all the bad'' things to eat (avoiding acidic foods, caffeine, and alcohol, etc.) Having this condition puts many restrictions on what we're able to eat and enjoy and it is a daily chore.
I also drink aloe vera juice or gel, whichever your preference (w/o citric acid, tasteless, etc) mixed with blueberry juice or tea, especially, in the evenings and several times a day. Make sure you check with your doctor, but it has been working well for me.
I truly hope you get some relief soon. Hopefully, the aloe vera juice or gel will provide you with some relief. Best, Uncomfortable bladder
Hello, sorry to hear what you are going through, and I completely relate! I was diagnosed with interstitial cystitis in february, after years of suffering in pain and multiple uti's. I relate to how challenging it can be.
First off, I recommend a really great urologist, my is dr. Jon Floyd, with golden gate urology, second, the medication elmrion has been life changing!! And I can't emphasize enough, my diet change!! If you go to the icnetwork.com, there is a great ''basic'' food list. It is a life altering wealth of knowledge!!
There are many foods that can trigger a flare, I started very strictly with ''bladder friendly'' foods, then moved into the ''try it'' zone after about 6 -8 weeks. If I feel any cramping i immediately get a 16oz steamed milk, (organic), with a little vanilla in it, it does the trick!
I can't emphasize the diet enough, it may seem overwhelming and cumbersome at first, but so worth avoiding pain and uti's!
Good luck! Jen
I'd had chronic UTIs off and on, then at age 28 was on antibiotics for almost a year with no cure. Went to an old chinese Dr. He did Acupuncture and gave me an herbal prescription I had to take to China town herbal pharmacy to get filled. A week later I was not only cured, but I never had another one. The Dr I saw is no longer around, but there may be other Chinese Drs who can help. The American ''Oriental Medicine Practitioners,'' who I've occasionally seen over the years never came close to being as good. amma
I missed the original post but I have IC. The website Interstitial Cystitis Network is super helpful. I control mine with diet, though it's very difficult, no caffeine, no alcohol, citrus, tomatoes, spicy food and small amounts of other trigger foods. It's worth it because I'm out of pain. I've tried acupuncture and supplements too. Drinking water continuously throughout the day seems to help a lot too. Good luck it is a challenge to manage this condition. fellow IC sufferer
Painful Bladder Syndrome and frequent urination
June 2009
I have recently received a diagnosis of painful bladder syndrome. Although I am not experiencing any pain, I have been having a lot of frequency of urination and burning on and off. This has started since I gave birth to my child. I did have UTI and have taken medication for this, but the frequency of urination is still there. Has anyone had any experience with this and can recommend anything that might help or good doctors to see for this? Thank you. Jane
Hi: Sounds like you have Interstitial Cystitis, or Painful Bladder Syndrome is another name for it. I developed this about 4 years ago. I had a regular old UTI, cultured positive for E. Coli. Took antibiotics and the culture came back normal, but the symptoms of frequency and pain never went away. Here I am 4 years later still dealing with it. It is crucial that you see a Urologist who specializes in female urology.
The only one I saw and did like a lot was Christopher Payne at Stanford Urology. I know it is a bit of a trek. I believe there is also at least one urologist at UCSF who specializes in female urology. Look on their website to find out if there is. I don't think you will have any luck finding one in the East Bay. Most urologists are trained and specialize in working with male urology issues (like prostate.) Good luck, I know how painful this condition is. May I also highly recommend this website. Interstitial Cystitis Network. Join their support forum. It is excellent. I have met the woman who started it and still runs it and she is fantastic! It is a great, great resource. Dietary changes can make a huge difference, you will find all that information and LOTS more on this website. Painful Bladder Syndrome Friend.
oh boy you have my sympathies. painful bladder syndrom is also known as interstitial cystitis (ic). for those who don't know, imagine the worst bladder infection you ever had and now imagine that there's no cure, is often difficult to manage, no clear cause and it never goes away. my first advice to the poster is to get a clear diagnosis. this requires a complete work-up including looking for obscure stds, kidney and bladder studies. endometriosis can also cause these symptoms. this can be done by some gyns but is usually done by urologists. kaiser oakland and walnut creek have some people that specializes in this. there are some treatments that might alleviate ic but you need to be sure that this is what you have. ic sucks
Cranberry juice, uva ursi, lots of water, and probiotics.
i just wanted to respond to the earlier post recommending chris payne at stanford for interstitial cystitis. i saw him as well and cannot recommend him. he is very well known as an i.c. specialist. i saw him, got the diagnosis, and was on my way to getting irrigated w/ dmso (sounds wonderful doesn't it). fortunately i am married to a very astute internist who thought my symptoms didn't quite match up w/ i.c. long story short i went to a gyn and found out i had endometriosis. chris works through residents, so maybe he never heard all the info. either way it's a huge error. anyway, that was a while ago and i'm still mad about it. the moral of this story is don't get snookered by a reputation, either of the doctor or the instution. there are equally good (and nicer) doctors in our neighborhood, even if they don't come w/ the buzz. ic sucks
I experienced painful bladder symptoms for four years and couldn't figure out what was causing it. My doctor eventually settled on a diagnosis of IC, so I removed bladder irritating foods and beverages from my diet. I took herbs and probiotics, and drank lots of water and cranberry juice. I also went to an acupuncturist for a few months. Although all of these things provided some relief, it was very inconsistent and some days the pain would be so severe regardless of what I was doing.
Then I went Mexico for a vacation and relaxed on the beach for a week (I hadn't had a real vacation in five years). My symptoms disappeared after the first day of the trip. I ate and drank anything and everything and felt no pain. When I went back to work the following week, the bladder pain returned. A few months later I quit my job (which was stressful and not a good fit) and within a few weeks the bladder pain disappeared. It's been nine years and I'm virtually pain free. I will occasionally experience a flare up during times of major stress, but now when it happens I know it means I've taken on too much and need to slow down, and then the pain goes away.
I'm in no way discouraging you from seeking additional medical advice, but I wanted to share my story because I lived with these symptoms for years and in the end found out that my body was sending me a message. I hope this helps. Anon
I didn't see your original post, but I had interstitial cystitis for years. It took a long time to diagnose. I was diagnosed in DC after a bladder hydrodistention and biopsy (not fun, but not the end of the world). I was put on Elmiron 3 times a day, and while it takes months to fully work, if it works for you it is a lifesaver. I took it for two years and stopped when I started trying to get pregnant almost 3 years ago. I have been symptom free since. I saw Payne at Stanford when I arrived in CA and he said that if Elmiron works for you most of the time you can go off it after a while with no return of symptoms. I do agree that he was very clinical with little bedside manner. Sara