Monday, January 20, 2014

Another appointment in Rochester

Just finished my appointment with Dr. Amy Benjamin at U of Rochester, in Rochester, NY, where it is has snowed more than the "less than one inch" the weather forecast predicted. I'm going to leave mid-afternoon and see if I can make it past Buffalo, then Erie, then on to Cleveland.

I didn't have to get in the stirrups today! Dr. Benjamin and I just talked about things. I'm going to go back on the vaginal Valium, increase the Lyrica, do physical therapy, and get a genitofemoral block.

Physical therapy: I've been remiss in not pursuing it now that I have insurance again. I'm sure my pain has a muscle component as I've been clenching my pelvic floor for a million years trying to keep the pain in check. I think most of the pain in my vestibule is muscular.

Genitofemoral block: this is something Dr. Howard recommended when I first saw him. When he dragged the wooden end of a Q-tip over my lower abdomen, I felt pain down below in the area where the pain started (a nebulous area under my bladder). I asked Dr. Benjamin about it today and we agreed that it's something to rule out. I don't actually think it will help, but I don't like having it hang out there.

Speaking of the bladder... the doc said we can try Elmiron, which is used for interstitial cystitis, if I don't see a benefit from the current med setup. She emphasized that the meds for IC and vulvodynia and pudendal neuralgia often cross over.

I'm on 75mg Lyrica twice a day now, and I'll titrate up as high as I can go up to 150mg twice a day. The doc thinks it's a good choice for me as high doses of Neurontin help, and Lyrica has lower side effects.

Okay, c'est tout. Time to face the snow.

Friday, January 10, 2014


When I don't post on my blog for a while, people sometimes ask me if I've gotten better. Believe me, if my pain ever gets better, my blog will be my first stop.

I have an appointment in a little over a week at Rochester with my new doctor, Dr. Amy Benjamin-Pratt. Dr. Howard retired last fall, but I think it'll be good to see someone new. I'm currently on Lyrica, 75mg twice a day, and haven't seen any improvement. Dr. Howard didn't suggest physical therapy, but I think it would probably help, so I'm going to see what the new doc thinks. Everything seems the same...

I came across a discussion on Facebook about how a couple women had cryoablation done at University Hospitals here in Cleveland and both saw significant improvement from it. Basically the guy freezes the nerve through the vaginal wall. So I'll ask the new doc about that one too.

I'm feeling a little shitty about having medical problems whose validity people doubt because the problems are invisible. I know I've covered this one plenty plenty plenty on this blog. I don't have anything new to say about it. I'm just tired of feeling like a faker. Am I? Sometimes I start to think I am.

I've actually been feeling really good otherwise. I'm on a great med combo for my (fake?) mental issues. I feel more stable than I have since I was 14. It's awesome. The most striking thing is that I can see now that the thoughts I have when I'm not feeling well aren't real. The fears, the ideas, the self-perception. And actually, I understand now why people doubt the validity of mental illness. When you feel good, it's hard to conceptualize those bad thoughts -- even for me, someone who has had a lifetime of them.

I rode in an elevator! Two elevators! Multiple times!

But the best thing about this new stability is that now I'm thinking, "Okay, I'm here. What should I do with my life?" I've tried lots of stuff over the years, but everything I tried -- jobs, school, volunteering, avocations -- was layered over with the battle for my mental health. Now there's no battle. I have normal ups and downs -- and I remind myself frequently that they are normal; I've gotten used to attributing mood swings to mental issues -- and I have some anxiety, which might actually be my baseline. Those are so small by comparison. It's like the landscape is clear of the struggle, open for adventure in any direction.

My friend asked me what I'm going to do now.

Me: Right now I'm just thankful.
Him: That's a good place to start.

I'll come back here to post after my appointment. I'm not expecting any revelations... I guess I'm feeling resigned to this pain right now. But at least I'm in a better mental space to deal with it.