12.31.2007
Middle of the night angst
I am in so much fucking pain. It's less than two weeks shy of a year, and it hurts. It hurts a lot. The drugs aren't enough. We're going to have to up the fentanyl. My doc is looking into which tricyclic to have compounded as a topical, and I may start Lyrica. Right now, 3:00 in the damn morning, I am in so much pain I can't sleep. Damn it, damn it, damn it.
7.01.2007
Nerves & Needles & Lidocaine, Oh My!
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?
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?
6.20.2007
Crossdressing, Anyone?
About six weeks ago, I bought men's underwear, for myself. It was a different experience from buying underwear for my husband. (I'm at Target more often. Who needs expensive underwear, anyway?) I bought boxer briefs thinking they would not push on anything. It was better than women's underwear, but felt weird because they moved around so much. The improvement wasn't enough to make up for all the squirming, so I quit wearing them. I was also too self-conscious to wear them under anything but a roomy dress, so they weren't worth it. Today, after I'd run out of vicodin for the second time in 12 days (back to that in another post), I was at Target picking up said narcotic and went for full-on boxers. I went up one size and bought traditional boxers...though with a button fly. It matters. I can still wear them under only a mu mu, but it does make a significant difference. No pressure on the bits that hurt. They do move around a lot. I was wondering how men who wear boxers put up with that until I realized they're not wearing dresses (the ones who are probably don't wear boxers), and I imagine pants hold them in place better.
5.04.2007
Whinging (for good reason, damn it)
It hurts, it hurts, it hurts, it hurts. It HURTS. All the time. Labia, clitoris, vestibule, perineum, inner thighs. Hurts, hurts, hurts.
4.18.2007
4.16.2007
Things I've Learned Since Developing Vulvodynia
I want to write something in depth about why I'm blogging about this, what I hope to achieve in doing so, and to chronicle my {cough} journey through dealing with this condition, but right now I'm in pain, and I'm pissed off, and I want to vent.
So...here's an angry list. I'll write something useful another time.
(1) It's one thing to blog about vulvodynia, and another thing entirely to do so on the blog your extended family and spouse's coworkers read. Hence, a separate blog.
(2) Significant and constant pain in the genitals induces anger. The random "spikes" of extra pain might induce madness. The jury is still out on that one.
(3) People in the grocery store who park their carts sideways across an aisle and then wander around looking for marshmallows or Cream of Wheat or whatever are in serious danger of bodily injury. Okay, that annoyed me before vulvodynia, but not to the point where I fantasized about ramming their carts with my own.
(4) Vicodin is sometimes not enough.
(5) Things are not going well when you start crying on a public toilet, just because the stall door is closed and no one can see you.
(6) Health care professionals all (so far) seem to agree that there is no way a similar condition for men would have "unknown causes."
So...here's an angry list. I'll write something useful another time.
(1) It's one thing to blog about vulvodynia, and another thing entirely to do so on the blog your extended family and spouse's coworkers read. Hence, a separate blog.
(2) Significant and constant pain in the genitals induces anger. The random "spikes" of extra pain might induce madness. The jury is still out on that one.
(3) People in the grocery store who park their carts sideways across an aisle and then wander around looking for marshmallows or Cream of Wheat or whatever are in serious danger of bodily injury. Okay, that annoyed me before vulvodynia, but not to the point where I fantasized about ramming their carts with my own.
(4) Vicodin is sometimes not enough.
(5) Things are not going well when you start crying on a public toilet, just because the stall door is closed and no one can see you.
(6) Health care professionals all (so far) seem to agree that there is no way a similar condition for men would have "unknown causes."
Subscribe to:
Posts (Atom)
Posts
