Since nothing is fixing the problem and narcotics are only barely managing to...um, manage the pain, I went to the Mayo Clinic in Rochester, MN last week. Saw Dr. Douglas Creedon, who runs studies on vulvodynia. He must know something, right?
Quick doctor review. Creedon was wonderful. Personable, knowledgeable, sharp, sense of humor, gentle, empathetic. So, score! I was worried; being a doctor at The Mayo could, I would think, make one develop an inflated sense of self-importance. In other words, he coulda been a dick. Instead, he was lovely.
Exam was excruciating. He said I have "true vulvodynia," which I already knew, but confirmation is good,right? He said I also have vaginismus. I asked if that could be secondary to the vvd - my body freaking out b/c of the other pain - and he said it could, or could have occurred simultaneously, or could have existed before. At any rate, he said best idea is to work on the vvd first, then perhaps returning to PT is indicated.
Options: (1) try a tricyclic topical and see if it has an effect over time; (2) pudendal nerve block. He called that something else, but that's what it was. I was pretty shaken then, and the thought of choosing a "this might work some time in the future" option was less attractive than option (2). He said he could do the injections or I could go elsewhere and do them later (why would I do that, when I was there, and I had someone with me to drive, and this guy was great?). I asked for 2 mg Ativan...took the pill, and when I was a bit loopy, he did the procedure. Wow...Big. Damn. Needles. Small gauge, but the visual was pretty unnerving. Intravaginal pudendal nerve block: don't recommend it. It was actually not as horrific as I expected it to be...but it was pretty bleedin' bad. The injection sites still hurt a good deal, five days later. Creedon said the long-lasting lidocaine, if it helps, will take effect between hours later and a few days. Hard to tell right away, because the exam was so painful, and getting everything out of the way to find the nerve and inject it caused more pain. So far, no good. If I have no relief by Tuesday, I return to Mayo on Friday to repeat the injections and see if a second blast does something. Yipes.
If it helps significantly, it will last 3-4 weeks, and then we repeat the injections. MAPS could probably do it, but I'll go back to Creedon. We would likely repeat 3-5 times, and then it should be done. Might also try steroid, same method. If it doesn't help or doesn't help significantly, I become a surgery candidate: stripping or destruction of the nerves. Um. Yeah. Talk about that if I need to. It bodes ill for sexual functioning. Yay, me.
He also said to add 600 of ibuprofen 4x/day. So now in a 24-hour period, I take:
12 ibuprofen
10-12 Percocet (I've graduated to that)
6 Neurotin (increasing to 12 - that makes 3600 mg, twice the therapeutic dose for seizure disorder)
I bought a pill organizer a couple of weeks ago the day I returned from an errand and couldn't recall if I'd taken my first Neurotin for the day. Now all the pills I take don't fit in the bloody thing and I'm going to have to get another. What am I, 80?
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4 comments:
thank you K, for this blog. I am seeing my doctor tomorrow, and I'm convinced that in addition to every other damn ailment (including fms) I have I also may have vvd. fun. what a long, strange, arduous process this all is. For years I haven't been able to sleep, I have been mortified that I have a strange std, I have been hiding this for what seems like forever.
You're quite welcome. I've been meaning to post about the next tx I had at Mayo (more needles, no more effect), but haven't gotten around to it.
I hope you have a competent doc. Did you get a list of VVD-aware docs from the NVA?
In addition to my 80 other blogs, I started one on this too. www.mychassis.blogspot.com
I didn't get a list of docs from the NVA, but I did get a couple names from my GYN, so I figure I'll go from there. Fun stuff, this.
K,I realize this is a post from over two years ago, but part of it just made me laugh. I have TWO pill organizers...one for at home that has AM/PM slots, and one for my "lunch" pills. Apparently I'm also 80.
I'm in the process of scrolling through your old posts. I too, was diagnosed with vulvar pain for almost two years before pudendal neuralgia. In my case, it was vulvar vestibulitis. I'm interested in your journey to the PN dx.
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