Suggested IC diagnosis

**thetasigma** · 10-30-2010, 06:43 PM

A little background on me: I’m 23 years old and I just graduated from college. Looking forward to going to graduate school soon.

My abdominal issues started about two and a half months ago. Before that, I had been relatively fine. I had harsh periods, but everything else was normal. I started having pain when I would urinate. It was never the ‘burn when you pee’ sort of pain that everyone immediately thinks of when you tell them urination pain; it was in my lower abdomen. It was just this feeling of immense pressure that would turn into pain at the end, sometimes excruciating. I figured I had a UTI and made my first appointment with a general practitioner in the area.

As you can guess, no UTI. Perfectly sterile urine. So what was it?
The next month was test after test. CT scans and ultrasounds and blood tests and so, so many urine tests. All of the doctors kept insisting I was pregnant, no matter what the tests said. It turned out that I had a large ovarian cyst. So that was it! It was just a cyst and they could remove it and I’d be fine.

I had laparoscopy done to remove the cyst a month ago and they also found endometriosis and went ahead and burned it off as well. I was told that I should be feeling better in just two weeks. It didn’t quite work out that way.
The pain is still here. Every time I have to go to the bathroom, I’m so scared of it. It doesn’t hurt every single time, but when it does it can be teeth-grittingly bad. I also get these stabbing pains in my abdomen, especially when I sit up for too long. This is especially frustrating, since I have a desk job where pretty much all I do is sit up all day. I’ve been having to get up during the night to go to the bathroom as well and the pain guarantees that I’ll spend the rest of the night awake.

It’s been a full month since my surgery and today I saw my doctor for probably the 8th time in the past 2 months. Another urine test, another sterile sample. That’s when he started to tell me about IC. I had never even heard of it before today but since I’ve been looking into it…it might be right. He said I might have had it all my life, but the catheter during surgery could have really aggravated it. Or it could be scar tissue from surgery that did it. Or it could have been absolutely nothing. It’s so nebulous and confusing.
I don’t know anyone with this condition and it’s so vague in explanation. The more I read about it, the more hopeless all of it seems.

I’m just a little scared about all of this right now and I’d appreciate any advice!

***ICNDonna*** · 10-31-2010, 02:33 AM

to the IC Network.

First of all, even if you do have interstitial cystitis, it is absolutely NOT hopeless. Most people with IC do need to avoid some foods and drinks, but most of us do well most of the time.

I think it would be a good idea for you to put yourself on an IC diet while you're doing the testing (you'll find the link to the food list in my signature at the end of this post). Some ICers find that single step helps more than any other.

For me, the time before diagnosis was the worst. Once I knew what I will be dealing with and started treatment, I began to improve.

Warm hugs,
Donna

**thetasigma** · 10-31-2010, 03:33 AM

Thanks for the advice! I've been looking into some of the diets but I love how detailed this one is. And you're right, just being in that state of not really knowing if this is the right diagnosis or not is the worst. My doctor did go ahead and put me on Elmiron, but I'm still at that point where I'm not 100% sure so it's all still a little scary.

***Sarojini*** · 10-31-2010, 04:50 AM

I agree with Donna - the time before I had a definite diagnosis was the absolute worst. When I finally got scheduled for a cystoscopy/hydrodistention to see if I had IC, I was actually EXCITED because I knew I'd finally know for sure!!

Definitely give the diet a try, especially since Elmiron can often take 3-6 months to become fully effective. Eliminating certain bladder irritants during that time can go a long way to making your life easier. Also, definitely check out the "Exploring Treatments" section at http://www.ic-network.com/treatments/ - I imagine you've probably looked at it already, but don't be afraid to print it and take it with you to your doctor's office you you can discuss options with him/her. Don't be afraid to let your doctor know if you think you may need a little more help controlling your symptoms while you're waiting to see if the Elmiron works for you!!