One of the most frustrating things about having IC is the fact that many doctors still don't know that it exists. When I first began showing signs of IC I was still in college, but I was only experiencing pelvic pain at that point. It took a year for the college doctors to tell me I had vestibulis, a form of vulvodynia, another messed up medical issue that has been associated with IC. In the meantime they told me I must have Herpes or another STD, even though none of the tests showed anything (and I'd never had unprotected sex!). When they decided on vestibulitis they gave me a steroid creme, which didn't do anything except burn like hell. I was put on antibiotics and it actually went away for three months. Then it came back - I went back on the antibiotics, it went away for 2 weeks, came back and hasn't left since.

So I pretty much just lived with it. I did some research on the web, discovered that others had it, but that there really wasn't much that could be done. In actuality I felt somewhat grateful that although it was painful and annoying, it wasn't as bad as several of the cases I read about (i.e. women who couldn't walk, etc). Flash forward about 3 years. I was looking to find ways to get rid of this painful disease, but my GYN really wasn't much help. She knew about as much about it as I did, to the point that when I came in to see her, she was actually asking me if I had read anything on the internet and would I like to try it? Ok...if your doctor does this, you need to leave him or her. This is part of the ignorance I mentioned before. Well, eventually I just stopped going to her and tried to find someone new. In between all of this, I started getting migraines, and then...one day I thought I got a UTI. I went to my regular doctor, she did a urine culture (in which I later found no bacteria showed up) gave me some antibiotics and I figured everything would be fine. Five days later my symptoms had gotten worse, so I went back to the doctor, she did a urine culture and nothing showed up. She then recommened that I see a urologist and gave me a couple of names. I called them and discovered that I wouldn't be able to be seen for almost 2 months!

Frustrated and pissed off (literally), I ended up going to the emergency room the next day. At this point I was so uncomfortable that I was getting up to use the bathroom 3 or 4 times a night, as well as going many times during the day, often with just a small dribble as a result. I was very uncomfortable over all.

At the ER they used a cathater to get a urine sample. It was the most excruciating thing I have ever felt. Cathaters aren't supposed to be comfortable, but this was a burning fiery pain and the nurse doing it looked pretty alarmed at my response. Of course there was nothing in the sample, a doctor prescripted UraSed, which was supposed to help with my "inflamed urethra". It didn't do anything except turn my piss green.

Desparate to find a urologist I got in to see an internist who could get me an emergency referral to see one. The internist didn't examine me at all, just asked me some questions (like, had I been abused or raped), and even though I told him no, he pretty much told me that all of this was mental. I was very angry at this, but said nothing as I was not planning on going back to him anyway.

At the urologist the next day, I talked to the doctor and told him I had found a site about IC on the web and that it sounded like that might be what I had. He pretty much blew me off, and said I must have kidney stones. Again, no exam, just a urine culture which showed nothing, except the tiniest bit of blood. I told him that I didn't think it could be kidney stones as I wasn't feeling any pain when I urinated. This didn't seem to phase him and he set me up for a test to xray my bladder/kidneys. This meant I had to drink an entire bottle of magnesium citrate, which tasted like cherry-flavored salt water. For those of you who don't know, it "empties" you of everything in you intestines so they can get a clear shot of your urological system.

What a surprise...nothing showed up. At this point he started prescribing a number of drugs, including antibiotics, none of which worked. While I was doing research online, I came across an IC website. I decided that my problems matched many of the symptoms prevelent with IC. When I mentioned this to my doctor he didn't even want to discuss it as a possibility.

Eventually, he decided that a cystoscopy was needed. I asked him if I could go under general anethesia, but he said it wasn't needed since it was only a 10 minute procedure - he would just go ahead and use some numbing jelly. When I protested and reminded him how painful the catherization was previously, he then amended and said he would try it his way first and if it really was that painful then he would do it again and put me under.

Uh huh...Riiighhhht....

I walked out and never went back. When a doctor doesn't listen to me after I repeatedly tell him that certain things are painful...that doctor obviously doesn't respect me, and I refuse to pay money to experience pain that could be avoided.

At this point I was pretty frustrated - my wedding was coming up in a month or so and nothing was getting any better. I decided to go off all the medication (Ditropan, etc) I had been prescribed. I took baths, prayed, stopped drinking everything but water. The week before my wedding the symptoms went away...(woo hoo!) and stayed away for a few months.

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