The background on my Interstitial Cystitis.

Date:   12/15/2007 10:42:47 PM ( 17 y ago)

My Story

I have had Interstitial Cystitis for 18 years now. It’s hard to believe that it’s been that long, looking back the worst of it seems so far away. I didn’t consider myself a sickly child. I was very active, I was into gymnastics from a very young age. But I had ear infections from very early on, bad enough that I went through the process of getting tubes (a waste of time) and tons of antibiotics. Eventually, I had to have surgery on my right ear at age 7 to replace part of my ear drum and the three bones that do all the hearing. So, all that my inner ear is still plastic and it still works, 35 years later!

I had my first bladder infection at age 12. It was a really bad one, blood in the urine and everything. It just snuck up on me. From then on, bladder infections would be a regular problem. The Dr. at the time mentioned that I have a large bladder (true) so I actually was holding my urine too long.

I had my tonsils out at 16 because I just couldn’t shake a sore throat. It didn’t help. The sore throat has plagued me my whole life. I mention this because I feel that IC and the other things I have wrong with me are all related. At 16 I also started on something I consider one of the worst things a human being can subject themselves to: birth control. Ten years later I found myself lying on an operating table to have a fibroid tumor the size of an orange taken out of me. In my opinion, 25 year old women do not get giant fibroids without help from fake hormones.

After that surgery they left a catheter in me for 28 hours. I don’t think that was a good idea. I had pain urinating for the next few weeks and I think it helped lay the groundwork for IC too.

But throughout all this, I was very active and healthy. Unfortunately, that would change. The summer of 1992, I met this cute guy. We had this wonderful relationship, and with all new relationships came a bladder infection. I had come to expect it. But this one didn’t go away. It just got worse, and worse, and I went from Dr. to Dr. and everyone kept saying “You have no bacteria in your urine, there’s nothing wrong with you”. One of the places I went was Planned Parenthood. I thought maybe I had an STD or something. Nothing was wrong, of course, and the Nurse Practitioner said to me “We had a guy in here with your symptoms and he ended up having something called Interstitial Cystitis.” I knew at that moment that’s what I had and went searching for a Dr. who knew what the hell it was.

I was very lucky, within 6 weeks of my first symptoms, I found a Dr. who knew something about IC. He gave me a cystoscopy with dilation and started me on DMSO treatments. Once again, I was lucky because they worked for me. I was in full remission by New Years of 1993. My Dr. also knew there was a dietary component and the moment I walked into his office he handed me a piece of paper with all the foods I was to stop eating immediately. He said that several of his patients had full reversal of symptoms by just removing those foods.

Unfortunately, though I was better, the DMSO treatments forced me to become very dependent on my doctor. I was at his mercy if I was in pain, was he open, on vacation? And my symptoms would reappear every time I ate something that disagreed with me. And I’d be back getting DMSO. It was a treadmill, and it started to take a toll. My body was something that was now my enemy. And if a flare was particularly resistant, I would have a cystoscopy and distention, with laser removal of any inflammation. Over 10 years I had 7 cystoscopies.

I also became dependent on pain killers. Although I wouldn’t say I abused them, I definitely became physically addicted to them. Even if I wasn’t in pain, I’d find myself taking half a vicodin twice a day just to keep myself from going through withdrawal. Later on I forced myself to go through withdrawal and found it very similar to what a friend goes through every time he “tries” to quit smoking. It sucks but it’s bearable, three days of laying around the house and watching the Food Channel, eating everything in sight. Every time I have a major flare I have to go through this withdrawal afterwards. I have had several periods of 4-5 months at a time without pain medication, but I pretty much have to be pain free. Something about pain in the highest cluster of nerve endings in your body that makes you require pain meds.

Five years into it I started getting pain in my back and shoulders. I was also tired all the time. I had a friend with fibromyalgia and went to see her doctor. He did the usual 18 point inspection and declared that I had fibro. He put me on guaifenesin, which immediately made me sick as a dog and much worse than I was before. I never saw any relief from that stuff and today I feel I was misdiagnosed. 5 years ago I started doing yoga regularly and the pain all went away, as well as the chronic sore throat! And not even the hard core yoga, just some easy moves. Then last year after I stopped taking Elavil I found I was no longer as fatigued. I was amused to find out that I really only need 8 hours of sleep. On Elavil I was sleeping 9 or 10 hours a day and could barely get out of bed in the morning.

In the spring of 2003 I bought the book “Solving the Interstitial Cystitis Puzzle” by Amrit Willis. I also found her website and Yahoo group and joined immediately. I started following the plan I have laid out in these pages and had my last DMSO treatment in May of 2003. For the last four years I have still had flares, because of my poor eating choices, but I have been almost completely in remission. You can no longer buy Amrit's book, but I found it to be incomplete, and actually way more work than is necessary.

Because I’ve included much of what I did in my plan, I haven’t included it here. There are dozens of things I have done that worked, and dozens that did not. You get the benefit of what I’ve learned. After all I’ve been through, I feel that I should share what I’ve learned free of charge in hopes that I can save someone the pain of having to go through what I did. I would like to get my Certified Clinical Nutritionist license just so that I could do some research on what I’ve come up with and do my thesis on Nutrition and Interstitial Cystitis. I don’t think I’m much of a “therapist” but I have helped a number of people get well with my help.
 

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