I have had Interstitial Cystitis for many years now. It is true it is very difficult to diagnose. I would guess it was close to 10 years before I was diagnosed and I suffered terribly during that time. I was treated for urinary tract infections over and over which I think I never had at all. I had terrible pain that went down my right leg to the knee and I had frequency and urgency needing to go to the bathroom very often. Riding in a car with all of the bouncing around was excruciating making it way, way worse and even set it off if it had not been bad at the time. This began to restrict my life and made me want to stay at home rather than have to look for the bathroom every time I went in a store. I finally found a urologist who thought maybe I had IC. He did a cystoscopy and was able to diagnose this. He put me on Elmiron which changed my life and I have been on it for almost 20 years now. I still have IC but it is now manageable. If you can find a urogynecologist not too far from where you live, these are the doctors who specialize in IC. My uro has tried me on about everything remotely related to IC but most of them have side effects. I am finally now just on the Elmiron plus Pyridium when I have a flare. The Elmiron does have some manageable side effects such as high liver enzymes and hair loss. My gastroenterologist monitors the liver enzymes plus the colitis which I also have. It seems that multiple pelvic disorders often go together and I also had endometriosis which was contained by a hysterectomy. I have found that diet helps the most for the IC and colitis so I don't have any trouble sticking to it. I have a tendency to yeast overgrowth so the diet also helps to contain that. My diet restricts acidic and spicy foods, gluten, dairy, sugar, yeast, coffee, tea, chocolate, colas, some fruits (except for blueberries and fuji apples,) and artificial sweeteners. I also wear white cotton underwear, skirts and pants. Internal pelvic floor therapy released those tight muscles both vaginal and rectal and provided many other useful tips to control IC such as diet, etc. I am a member of the National IC Association and their forum Inspire also includes helpful tips and encouragement. Good luck. Hope you can get on top of this soon.

I just started physically therapy today and received some exercises, I can tell I have did something different today my pain level is high tonight. I have the diet plan as well I will miss some of the items I can't have but the constant discomfort and pain is very difficult to deal with. I have not started any medication yet but I'm looking forward to getting the help I need. I will be asking my urologist about medication. I have read Valium helps when flares happen have you tried low does of this medication?

Yes, I have tried the Valium suppositories but did not see they helped at all. I am not going to take any medication that does not really help. I did try Amitriptyline and it gave me severe heart palpitations. I wish I could take it because it did more for my depression than anything I have taken before. Don't worry. What happened to me is very rare and most people say it really helps them. I have also tried Hydroxyzine which is an antihistamine which did not help my IC. However, I do have chronic sinusitis so I do need an antihistamine. Detrol and Vesicare are two medicines that ease urgency and frequency. I have tried both and they do help but I don't like the way they make me feel. To explain, they make me feel like I have to go but can't go. A new drug, Naltrexone, that is used to suppress cravings in alcoholics, has had some success for IC. It did not help me. Another new drug, Myrbetriq, is for urgency, frequency and leakage and my uro really likes this one but it gave me a really bad headache. Really the only drug that helps my IC is Elmiron which I have taken for almost 20 years. Most people with IC do not take it because it costs $700 a month. Thankfully my insurance does cover it but, it does have some side effects. These are high liver enzymes, hair loss and months to take affect. The strange thing is that the hair loss occurs in just one 2 inch streak across the top of my head and down the back. I will just have to live with it because I can't live without the Elmiron The fact it takes many months to see any results of Elmiron discourages some people. I am a stubborn woman and when I am in pain I will go to any length to get relief. I took Elmiron 3 times a day for 9 months before I saw any effect. As you can see there are many medications that can help and new ones are coming out regularly. I am sure your doctor will know what is best for you. Take heart and stay strong.

I have had IC for 10 years & follow a restricted diet for IC, tried Elmiron but the side effects were awful. I can mange my symptoms but presently have been having chronic yeast infections and UTI's. I think my autoimmune system is terribly compromised due to antibiotic treatment etc. Looking for physician or autoimmune specialist in my area of Santa Monica CA. So discouraged at this point.

I have chronic bladder/prostate pain. I’m told IC is a diagnosis but urologist don’t know what causes it and how to successfully treat it. Just really gave it a name!

Please guide me to folks with bladder urge incontinence. I have to urinate once per hour. No
Pain or infection.

Have you heard of any treatments that work for chronic painful bladder syndrome?