How long can you live with interstitial cystitis and Hunner's ulcers? Can it be deadly if properly treated?

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This is a difficult disease to diagnose and to treat effectively. It is not deadly.

The first link is a support group and the second detailed information on the disease.  (+ info)

Do you have experience with interstitial cystitis?

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I was recently diagnosed with IC, although I've had problems all my life. I had been told by countless doctors that there was nothing wrong with me. About 5 years ago, I started having muscular/joint symptoms and have symptoms of lupus, fybromalgia, and ankalotis spondylitis, but not enough to be diagnosed with anything, which of course results in more doctors telling me it's in my head. I just read a study that shows an unknown corrolation between IC and these other problems. I feel so despondant knowing that I have spent so many years in pain with doctors telling me there's nothing wrong. Has anyone else with IC experienced anything like these symptoms or this kind of attitude with doctors?
OH yeah! I don't have IC, but I have a condition called Pelvic Congestion Syndrome that has some symptoms that mimic IC symptoms (irritable bladder, abdominal/back pain, frequent urination). Pelvic Congestion Syndrome is extremely common but you have to go looking to find it (as in it can only be diagnosed with surgery or embolization), and no one would. I was told for 5 years it was all in my head and I was just a hysterical woman; the docs even told my husband I was just drug and attention seeking-- he tried to put me into rehab because he didn't know what to believe! Turns out, the PCS can be extremely painful, it explained EVERY symptom I've EVER had, and it can't be cured so all I can do is control the pain. My primary doc that I had to switch to when my insurance changed refuses to write me referrals because she is "not comfortable" with putting patients into pain management, even though I've been going for a YEAR! My pain doctor, however, is a FABULOUS doctor and is extremely compassionate. If you're having pain, you should get your records and get a pain management specialist. Their only goal is to deal with your pain and make you as comfortable as possible. There are a LOT of rules, but if you really have pain they're easy to follow and are totally worth it. This website is a good read for issues about pain and pain management, and also has a search function to locate pain docs and pain prgrams in your area: www.aapainmanage.org  (+ info)

Anyone here pregnant with interstitial Cystitis or bladder pain?

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If you have IC, is it an infection? and what can be done about it?

Do you have chronic bladder pain and urine comes back clear of UTI's?

Im almost 19 weeks pregnant, and all clear of UTI's but the pain in my bladder is killing me. I need answers. Please anyone.
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Any advice for an interstitial cystitis i.e painful bladder syndrome sufferer?

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i have that bladder disease and i have tried and tried to go by that certain diet they give you, but i still have pain even switching.

Any advice from other sufferers that may help?
I had a procedure where they filled up my bladder with water and medicine. It helped for a while, but the pain has been getting worse.
Other things that can help IC include:

acupuncture
electrical nerve stimulation (also called TENS)
medications like elmiron and/or low doses of elavil
gentle exercise like tai chi or pilates (when you're not having symptoms)
Try searching for a pelvic pain specialist in your area and see if she may have some suggestions your urologist does not.

More suggestions in the source links  (+ info)

what helps with symptoms of Interstitial Cystitis?

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I've delt with this all my life, and I was wondering if there is anyway to help control it or whatever, without taking like imiprine, or an antidepressant med. as those make me, feel doped up too much. What are some other ways to help with this condition?
I also have IC , see your Dr and ask to be put on Elmiron. It works great , I take 1 capsule 3 times a day and rarely ever have a problem. Antidepressants won't take away the pain or allow your bladder to work properly. Elmiron has only been available in the USA for the past few years, it's been available in Canada for many years. You will be happy you gave it a try.  (+ info)

Is there a diagnostic test for interstitial cystitis?

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Have had burning with urination for over 10 years now on and off. Went for all kinds of oscopy tests and everything was ok. Burning however persists, really painful before period. Help!!!
It can be difficult to diagnose interstitial cystitis. It sounds like you have had a cystoscopy already, and that is good because it probably ruled out some other things, but just because it was normal does not mean that you don't have IC. Presumably the doctors have tested you for infections as well. Other tests for IC include: response to intravesical anesthetic (puttting lidocaine and sodium bicarbonate into the bladder) and levels of antiproliferative factor (APF) and glycoprotein-51 (GP-51) in the urine. There are also other tests under investigation. See the first source for more information.

Have you tried treating it as if it were interstitial cystitis? The first source lists some interesting new treatments, although it does leave out some others (such as diet -- very important -- and antispasmodics, analgesics, and Tums). The second source has a lot of good information about diet. The third source is a good resource overall.

I know what you are going through -- I had IC for 1.5 years -- and I hope you are able to get some relief. Good luck!  (+ info)

Have you heard of interstitial cystitis?

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Have you heard of interstitial cystitis?
What are the symptoms? Have you dealt with it? Is there a cure? it's so painful, if this is what I have.
Weiskraut- I'm going to check my pottasium level. Thanks.
It is a painful condition involving the Kidneys and the Bladder the actual causes are complicated and exactly what it feels like varies from patient to patient. More women than men have it.

There are some treatments but they are limited in scope and do not fix the problem very well

Look it up here for a good explanation

http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/  (+ info)

Has anyone had success with ELMIRON the medication for INTERSTITIAL CYSTITIS?

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I have also heard that a low dose of of antideppressants can aleviate the pain??
I am currently taking Elmiron and have had some success. It seems to keep my IC somewhat under control most of the time but I still have times when the symptoms are more severe. When this happens I usually get catheter treatments and this helps. Mostly I try and control it with the Elmiron, diet, and I try and keep my stress level low (sometimes that's easier said than done).  (+ info)

Can Doctors tell you that you have interstitial cystitis when you are pregnant?

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Well, tests have to be done. But not unless you tell them your symptoms..I would say automatically they wouldn't know. So no.

How is IC / PBS diagnosed?

Because symptoms are similar to those of other disorders of the urinary bladder and because there is no definitive test to identify IC / PBS, doctors must rule out other treatable conditions before considering a diagnosis of IC / PBS. The most common of these diseases in both genders are urinary tract infections and bladder cancer. IC / PBS is not associated with any increased risk in developing cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome.

The diagnosis of IC / PBS in the general population is based on

presence of pain related to the bladder, usually accompanied by frequency and urgency


absence of other diseases that could cause the symptoms
Diagnostic tests that help in ruling out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and laboratory examination of prostate secretions.  (+ info)

Interstitial Cystitis and Irritable Bowel Syndrome?

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I have been diagnosed with interstitial cystitis and suspect it is accompanied by irritable bowel syndrome. I have tried laxatives and enema for the IBS, but afterwards I still feel constipated, although I do evacuate...The IC and IBS often coincide and are worst during ovulation in my monthly cycle, so I think my main culprit is hormonal fluctuations...Does anybody have suggestions on this one?
You have to really watch your diet and try not to get really stressed.  (+ info)

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