Friday, October 16, 2009


The MRI came back negative for problems in my urinary tract. I have a small fibroid but I don't even have to see my gynecologist about it. So I told the nurse who called me with the results that I really think I have interstitial cystitis and I'd like to be treated for it. I also mentioned that if I can get pain meds, I'd welcome them as the pain often makes it hard to do things like go to work in the morning or focus while there.

First I tried to make an appointment with another urologist to get a second opinion on IC, but the receptionist said I had to ask my doctor to release me before I could do that. LOL. So I thought first I'd try my urologist again because it might save me an appointment or at least an examination -- and I told the nurse that I'll seek a second opinion if he's not willing to go the IC route.

There are several meds for IC, but one main treatment for IC is diet. My good diet seems to be stricter than the IC diet (PDF) -- for instance, sugar is a horrible thing for my cooch. However, I am on a horrible diet right now because it's so hard to feed myself. I've even been eating gluten, which is good to do once in a while because when you don't have an anti-gluten diagnosis like Celiac you start thinking it's all in your head. But no, my body feels like it's 90 years old again and my intestines hate me.

My psychiatrist was great. When I started going into bipolar lingo, he didn't freak out that I knew about my condition (I love that). He also already knew about vulvodynia and interstitial cystitis and posited that they're both due to an inflammatory condition medicine has yet to define. He believed me when I said gluten gives me pain and again said medicine isn't there yet. So much better than my last psychiatrist who told me my gluten pains were due to a coincidental three-week flu ;)

The psych said Neurontin isn't so great alone as a mood stabilizer but that it enhances other mood stabilizers. So he put me back on Trileptal -- yay, my favorite! seriously! -- and gave me Neurontin on the side, plus a few Ativan for the MRI.

I started the Trileptal and I'll add the Neurontin in a few days. I'm looking forward to being back on meds -- Trileptal always made me feel more lucid, and I really need that right now. The weather's cloudy and so am I.

I am out of my crazy mixed episode finally. I can't believe a brain can do that to a person! But I'm still pretty depressed, and the issue is whether I have a future with pain. It's something I never really had to face while in the pleasant state of denial or the heat of anger. But now it's hitting home that the pain could be interminable, and I don't know what to do with that.

I just don't really see how a future with pain works.

But I have to try not to think beyond the present day. When I think about how I'd like to find someone and have children, have a sex life, do things other than tend to myself, not wrestle with pain every day, I start to panic. I don't see how those things are possible. And I want to write something uplifting about focusing only on today, but I can't right now. I am too scared and there's very little to reassure me.

I have more thoughts but they'll have to come later.


  1. I went to one urologist who said I did not have IC. Don't know how he thought this as he did no testing. I left crying and with no help. I found a great urologist through a coworker and found out after a cystoscopy that I did have IC. I was put on Elmiron and changed my diet and that has helped tremendously. That was about four years ago and I just found out i have vestibulitis and pelvic floory dysfunction and have found great doctors for those as well. I will say one of the biggest flares for me is artifical sweetners. I just wanted you to know I am hoping good things for you as I know how frustrating it can be.

  2. Hi, this is [larsonna], I got an IUD about 3 months ago. The first month I had horrible digestion problems every single day. Now, it's down to occasional issues, some days it does hurt every time I eat though. It made me wonder, if by some chance, your pain could be connected to your cervix too? Sure you've already gone down that road, but, it made me think of you and hope that you could get some relief. I also hope my IUD pain is transitory and not indicative of some underlying problem..