Cystitis Patient Answers
My urologist told me that the internet has all the information I need to make informed decisions on any treatment – Here is a series of articles with information you may not find online, about IC:
Symptoms called IC can come from anywhere in the body.
A holistic approach to diagnosis and treatment is necessary.
James' story, in his own words, 2011:
James lives in Canada. He was diagnosed with IC/PBS, but eventually found out, from an American urologist, that his real problem was pelvic floor muscle dysfunction, PFMD. Once he knew the real cause of his pain and got the physical therapy for PFMD, he had a rapid recovery.

James says:

“If this helps someone, that will be my reward for telling my story.”

In 2008, all of a sudden I had terrible pelvic pain. I was away on a trip and also going thru a divorce. All of a sudden the pain came out of nowhere, after sexual intercourse. Maybe that was the trigger. Previously I’d had some frequency day and night. It came and went – I didn’t know why.

This was a disaster for me. I got seriously depressed. When I talked to patients I became more depressed. The problem is internal, they said – you’ll just have to live with it.

But basically the problem came from the pelvic floor. I didn’t even know what the “pelvis” is. Then all of a sudden there was this unbelievable pain.

I went to urologists. One of them did a cystoscopy and diagnosed me with IC. I wouldn’t allow the other two urologists to do more cystoscopy.

I started with Tylenol 3, then Percoset. I went back because I still had pain, and I had constipation. So the third urologist gave me a morphine patch.

I started to enquire about IC. I felt like my life was coming to an end. It was a shock to me.

I got these flares – now I see that some foods were triggers.

On the internet I found the IC Network and the IC diet, so I started the diet. That helped somewhat but still I had some discomfort.

So I started to look for a specialist. In Canada it would have taken 3 years to get an appointment with an expert in IC. I saw three urologists in Canada, and had about 20 instillations of a chemical – I don’t know which one. There was no improvement.

So I found two urologists in the United States. The first US urologist wanted $3000. just to evaluate me. That didn’t seem right. But the I liked the approach of the secretary of the second urologist – she was kind and the price was reasonable. It wasn’t the money – I would pay anything to be healthy. But the kindness felt right.

So I went with the second one. They wanted a medical history. One of the urologists in Canada told me I was wasting my time going to the US because the knowledge he had of IC was sufficient and no one could do more. He told me to take Uriset and I did this many times and it didn’t help a bit. And he gave me a prescription for Elmiron. I didn’t take it because I wanted a specialist first. I took the letter and went to the urologist in the US anyway.

In April of 2009 I saw this American urologist for the first time. He was very friendly. I was impressed with his manner and his thoroughness. He didn’t do a cystoscopy. He said he didn’t know if I had IC but he saw that I had pelvic floor dysfunction by just feeling my pelvic floor muscles – a finger in the anus, very simple, pelvic floor muscles that felt like a tight guitar string. Tight from my running exercise, most likely. He gave me an appointment for cystoscopy a month later.

With the cystoscopy he said he didn’t see food sensitivity in my bladder – he suspected I didn’t have IC. If I did it was mild. He repeated that my problem was tight pelvic floor muscles. He explained that some people have sensitivity in other parts of their body; I have it in the pelvic floor. He told me I had to do stretches, exercises, etc..- all those goodies.

Then back in Canada I told a patient support group leader about this and she told me she was having a group meeting with Carolyn Vandyken, a physical therapist.

I went to the meeting and Carolyn Vandyken said that often patients diagnosed with IC/PBS didn’t really have that problem - they had tight pelvic floor muscles. She said, “If you fix the pelvis you’ll get rid of the symptoms called “IC.”

I started the therapy. But I wasn’t dedicated and went back to my old life; I introduced more foods, careful not to be extreme because of the terrible flares food had caused in the past. The symptoms were very painful.

I also started exercise. I tried running again and noticed discomfort and frequency of urination after sex- for a few hours. Apparently running wasn’t the right exercise for my condition.

So I went to see the urologist in the US two more times. On the third visit, I was upset because the pain was coming back. He told me my pelvic floor was definitely tight and I needed to go back for therapy – stretches etc.. He gave me the book Headache In The Pelvis. I was willing to go to California. But the urologist said I could do the therapy in Canada.

I stopped running. I did the stretches, swimming and the elliptical machine. I also did hot whirlpool, without the jets. After about 2 months of this, my pelvic floor tone was back to normal and the frequency disappeared. I could sleep better. Then I introduced more foods and I felt fine!

This urologist in the US was a savior for me. He nailed the problem. He was the only one. Three urologists in Canada never mentioned pelvic floor issues. I don’t think they knew anything about it – they didn’t check me for that – it’s simple to diagnose.

The urologist in New York didn’t have that attitude – he’s a real doctor, there to help you. He is a good hearted man. He explained, and he diagnosed me correctly. He didn’t promise 100% but he said I’d get much better. He was right. His office even did follow up – they called me to see how I was doing! One time I had a problem and called and they gave me a prescription.

My best advice is to find a specialist like this urologist. I listened carefully to what the other 4 urologists said, and I had a gut feeling that they were not right. My gut feeling about the urologist who diagnosed me correctly was that he understood what the problem was.

And of course, once you have the right diagnosis, find the right pelvic floor therapist. Carolyn Vandyken and the pelvic floor therapist closer to home, who treated me, saved me from a lifetime of terrible pain.

“If this helps someone, that will be my reward for telling my story.”