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.

1 comment:

  1. I've never commented here before, but I want to let you know that your blog inspires me. I have similar issues and it's been hell trying to figure out what's going on. The first time someone mentioned pelvic physical therapy I nearly ran for the hills. The second time it was mentioned I googled it and I ran across your blog and started to feel a bit more positive. (I'm not sure what post it was). Now, I've seen 3 pelvic pts. I'm glad you can tolerate Lyrica. I can't take that or gabapentin. The first makes my heart race and my blood pressure drop. The second makes my hands go numb. Weird. I wish it'd make other areas numb, haha. I certainly hope that you're feeling better and please know that you're not alone. I've been reading for quite sometime, but never had the guts to comment. You are so brave to write this blog and put everything out there in the open. It is truly inspirational and you have motivated me to do the same. It seems that until we all start piecing this stuff together most of the medical community won't have an idea of what to do with us. Many well wishes!