I've always thought I had IC but I've never been able to get a diagnosis. Even urologists wouldn't diagnose me with it because I rarely have the typical urgency and frequency. But I believed I had it because food is the main variable that influences my pain. If my pain were neurological or muscular, food would not have such influence over it.
I went to a new doctor, a gynecologist, who put me on a topical steroid, an estrogen suppository, and Elmiron. The steroid, even compounded, made my skin bubble. The suppository -- she says it's impossible, but I had the most painful lead-up to my period that I've ever had. The acid burn that is usually contained to my vulva spread up my abdomen. I could hardly walk. Maybe that was coincidence, but my period is due tomorrow and my pain hasn't risen above a 5 yet in the lead-up, and it certainly hasn't spread. (5 is average.)
She's the first doctor, though, who thought I had enough of a chance of having interstitial cystitis that I might benefit from Elmiron. Why it took me nine and a half years to stumble across a doctor who would try me on an IC med, I have no idea. Telling her how much food influences my pain was all it took. Bam -- let's try Elmiron.
Today I saw a therapist who specializes in helping women with these kinds of issues. My doctor recommended I see him. I'm glad I did. I'm so angry. I feel like I had ten years cut right out of the middle of my life. I feel robbed. I feel empty. I don't even know what I need to address in therapy. My feelings are giant but vague.
One thing I learned today is that I have to come to terms with eating things that hurt me. Eating them knowing they might hurt me. Hurting myself. The Herculean charge of eating perfectly to appease my bladder, and failing at it.
I'd always fantasized about writing this post, the one where I have all the answers. I am not in the state I thought I'd be. I'm more depressed, more anxious than my baseline. My cat died at the end of March, but I think I'm depressed and anxious beyond the grief of losing her. I can't tell why. So I can't come here and celebrate. I came here to write to you who might need the answer I've found.
If my pain continues to recede, I'm going to go away for a week by myself and be alone with the knowledge that yes, the day did arrive.
I hope we see each other soon, because in a different way I'm sorting through a lot of similar feelings after having my post-partum issues explained by a pelvic floor therapist and finding out that my delivery and my whole pregnancy and post-partum issues AREN'T typical and WERE a trauma. My initial reaction (even to this pretty good news) was intense anger and grief around the time lost and every single person who said something to minimize my ongoing issues and my expressed trauma right after having my child. The first time I fixed my pelvic tilt by myself at home I wanted to rip the face off of every practitioner who DIDN'T empower me with those tools months/years ago. I realize your journey has been different, but in some ways I understand or at least empathize. You've lost a lot of time. That is a grief to be honored so that you can truly celebrate finding an answer. XO
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