Acupuncture Gets an F Minus Minus

It's possible! I have a friend who managed that at a very exclusive college, in the 80's. Ouch.

I went to see a doc at the American Academy of Acupuncture and Oriental Medicine. (Naming the place but not the doc. Is that safe? If anyone's in MN and wants to know whom to avoid, I'll back-channel the name.) This experience is worth detailing because of the sheer level of suckitude.

I walked into the building expecting something at least mildly impressive. After all, this is the Institute - where they teach - and they claim to be the "best" Chinese acupuncture in the state. Maybe they are, I don't know. The building is a three-story affair with no signs up anywhere to tell you where to go. I went the most promising-looking direction and found a large empty room. I went up the stairs (second most promising) and found more large empty rooms. Wait, that's not entirely true.: one of them had a chair in it. I went back to the main floor and went the way I'd not gone the first time: B-I-N-G-O. There was square of folding chairs set up loosely around a table bearing some magazines, and a desk in front of drawers of herbs. A man in his thirties (maybe an old-looking twenty-something who thinks he has an "old soul") with hair balding/thinning into a tonsure effect but with extra length in the back allowing it to be harassed into a greasy ponytail (held with hemp string - duh) was irritating the woman behind the desk by trying to get her to make his professor's schedule fit his extraordinarily bizarre one. What, was he into several hot games of D&D* at once, and couldn't possibly miss the next installment, lest his +7 battle axe be stolen by marauding anti-paladins^? This went on for eight minutes. I know this because I got there seven minutes before my appointment time, and he hassled the beleaguered desk person until at least a minute after my time. By the time I chose to interrupt his nonsense, there were four more people standing in line behind me, and I considered it a gift to the receptionist. I filled out the "Do you suffer from any of the following?" paperwork while the woman I suspected was my doc stood kind of behind me but didn't introduce herself. When I handed the papers to the receptionist, the doc followed me to the desk, and the receptionist said "She's your 1:00." I introduced myself properly, so I wouldn't remain "She," and the doc ushered me into an office with two women sitting in it. It took me a moment, but it came to me as I sat down, and I asked them if they were students. They nodded. I turned to the doc and said that I hadn't been told there would be students in attendance. She said nothing - just looked at me. Okay, different culture; but this place has been operating in Minnesota for over a decade (perhaps two?) - and not everyone there is Chinese born - they have to know that people here expect to be asked if students may be present. At least told they would be, when calling for an initial appointment. Nothing, not even "Oh, I'm sorry, didn't anyone tell you/I should have asked." She looked at my paperwork (which said why I was there at the beginning of the first page) and asked "So, why are you here?" Here's the rest of the conversation:

Me: I'm here for help with vulvodynia.
Doc: What's that?
Me: [shocked] What do you mean, what's that? Dr. X specifically recommended you, saying you've treated this with some success.
Doc: Oh, yes. It's...?
Me: Chronic vulvar pain.
Doc: Yes.
Me: Do you know what it is?
Doc: Yes, vulvar pain.
Me: Okay. Have you treated it?
Doc: [something nonspecific enough I can't recall it.]
Me: I have been in constant pain for over a year now. Do you know what to do with this?
Doc: You have [incomprehensible] deficiency, too much heat cause pain. How are your periods?
Me: Normal, on birth control. I'm perimenopausal, as I wrote on the sheet there, and I have a lot of hot flashes and night sweats. [I was having a hot flash at that moment.] I'm sorry, I have a what deficiency?
Doc and students: [giggle - actual giggling] a Yin deficiency. See, yin and yang-
Me: [not being so polite now]: Oh, I didn't understand that you said "yin." I know a bit about yin and yang.
Doc: Yin deficiency mean too much heat. How are your bowel movements?
Me: Fine, with magnesium. The narcotic pain killers cause me problems, but magnesium fixes it.
Doc: Too much heat cause pain and hot flashes. [stands up, ushers me toward door]

In the treatment room, the doc asked me to remove my shoes and socks, roll my slacks up to my knees, and lie down on the table. A few minutes later she and the students returned and began the acupuncture. The doc explained that the two in my forehead were for hot flashes. The rest were in my lower abdomen, hands, head, legs and feet. A couple of the placements hurt, but she adjusted them and they were fine. She and the students checked on me at the ten minute mark, and after twenty minutes, removed the needles, stopped what bleeding there was, apologized for bruising my hand (if it works, who cares about a little bruise?!) The doc said "You come back Thursday." I said I couldn't, but could on Saturday.

I made the appt, wondering why I was doing it. I didn't like the whole thing with the students, I didn't believe the doc knew what vulvodynia is, and I didn't appreciate being giggled at for not knowing what yin was (even if I hadn't known, is giggling really appropriate?) After describing this experience to my analyst and my husband and hearing what it sounded like out loud, I canceled the next appointment. I'll try the other doc at another location this group has (no students, I think) - another who supposedly has experience treating VVD. We'll see.

This was especially sucky because my doc has referred me to pain management, which I hear as "we can't fix this, so let's just try to manage the pain." I had put a lot of hope into acupuncture - more than I had realized - so it was incredibly disappointing when it was a total flop. For two days I had no hot flashes, but there was no effect on the vulvar pain. I know, I was supposed to go back. The doc said nothing about how often I would have to come, or how long it might take, overall. Know why? Because she didn't know what she was talking about when it came to VVD.





* I can make this joke since I played for several years in my early twenties.
^ See?

Acupuncture

On Tuesday, I see a doc who claims to have had "good results" treating vulvodynia with acupuncture. If she has to stick the needles into my eyes, that's fine with me. I've already had needles in more tender spots.

Break Rant

I need one from this. In 2002, I had dual infections: diverticulitis and a kidney infection, and my doc admitted me to the hospital. I spent five days in the hospital - four of them on IV morphine with oral percocet every four hours. There was more than pain, of course, and they had misdiagnosed me at first (the first 2.5 days, they were convinced I had a kidney stone, and that prolonged my stay): such an infection can become life-threatening. But I was thinking about this today and realized I've gotten to a point where a five-day hospital stay with IV drugs and someone taking care of me so I have no responsibilities other than resting sounds lovely. I want to be taken care of! I want a break from the damn pain! It's been a year - everything hurts, all the time. Every bowel movement (screw TMI - this is a blog about vulvodynia and the suckiness it embodies...there is no room for the squeamish here!) for an entire year has been excruciating, because of the pressure on the vaginal wall - and then my general pain level is higher than normal for about an hour after. The pain spikes are horrid. What if they become the base level of pain? I couldn't function at all - I can't imagine that. I can't have sex. I can't do anything sexual without pain, even if neither of us touches me, because even arousal hurts. My husband is sad. I am sad. My four-year-old daughter knows what vulvodynia is, and that it means Mommy can't go on the bike rides she and Daddy go on, or go swimming (swim suit causes LOTS of pain), or do all sorts of other things she'd like to do. I can't go for more than a .5 mile walk. I can't ride a bike. I can't sit through an entire session with a client without wincing at least twice. I'm most [cough] comfortable with an ice pack on my crotch. I'm fucking tired. (Have I mentioned that?)

Current meds:
Lyrica (new)
amitriptylin (prepared as a 2% topical compound, because I don't tolerate oral tricyclics well)
Fentanyl patch, 25 mcg/hr - I'm physically dependent to the opiate now - yippee
Oxycodone (2 at bedtime, and seldom any during the day b/c I get just so bloody sleepy)
Prozac (upped to 40 mg/day - if you cry in your doc's office and ask her for a scrip to have a bus drive over you, she increases your antidepressant dose. Besides, chronic pain depletes serotonin.)

I think I will find an acupuncturist.

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.

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?

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.

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.