I Hate Pudendal Neuralgia (or: My Crotch Hurts)

Oxycontin Decrease

2011-07-27T15:34:00.004-05:00

At my last med appointment, I asked my NP to decrease my oxycontin back down to 10 mg 3x daily. It's too damn expensive - went way up six weeks ago for no apparent reason (it was an increase of 24%, if I remember correctly). It's not that we can't afford it. We can. It squeezes other things, but I don't think the benefit I realized was worth the cost differential. I doubt oxy would make a significant dent in the pain unless I took a high enough dose that I couldn't function. I would rather function. You know, most days.

I fucking hate the pharmaceutical companies.

Hypericum Perforatum (Common St. John's Wort)

2011-07-27T15:10:00.003-05:00

No idea if I ought to expect anything, but I am trying it. I expect the worst thing that could happen is some gastro-intestinal upset. Big deal. If I expect nothing, maybe I will be surprised?

Limit

2011-06-13T12:19:00.001-05:00

I fucking hate this disorder. It needs to stop.

About Dr. Andrew Goldstein

2011-06-13T12:14:00.002-05:00

I already posted this as a comment in response to Claudia's question about my experience with Dr. Goldstein in Washington, D.C. So if you've read that, this contains nothing new.

I really liked him. He's got about a 50% bad rap online, if one searches around, but I went anyway. I have so much pain I decided it doesn't matter if he's a complete ass, so long as he doesn't hurt me unnecessarily. Maybe he's an asshat who can help, right?

But...I liked him. A lot. He's quite direct, very bright and knowledgeable, and he doesn't screw around. He knew I wasn't coming to him for treatment - just for direction, and he didn't try to "sell" me on having him personally do any of the things he recommended. He was empathetic about the pain and my anger and despair around it without being "mushy." The man hugged me in the hallway as I was leaving. (It felt, and was, appropriate.) He spent a good deal of time with me. Hardly an ass.

Now, if one went to see him wanting only to hear what one "wants" to hear, then he'll come across as bossy/pushy/arrogant. He talks fast and doesn't talk "down" (maybe because I'm a professional and talk like I am, but maybe he talks to everyone like that, and some people experience it as arrogance or showing off?) Don't expect to be treated like a child or royalty, and you'll appreciate him for treating you like a patient with awful pain who has tried lots of things and doctors already.

I actually asked him about his reputation online, in the middle of the exam portion of my visit. Hard to believe I did that, but I was really liking him, so I asked what he thought it was about. His thoughts matched mine, though he added one thing. He said his wife (a dermatologist) once told him that if he was going to specialize in something so narrow, where there is a handful at best of treatment possibilities, he'd "damned well better be the best at it." Maybe that's arrogance, he said, but he figured if he could not be the best at this, he should do something else. I can appreciate that.

Washington DC & Dr. Goldstein

2011-05-17T11:15:00.002-05:00

I feel an obligation to readers to detail my visit with Dr. Goldstein, and I am dragging my heels because my mood has plummeted. My husband asked me why last night, and I don't have a good answer. It's counterintuitive: the meeting with Goldstein went well, and I came home with things to try, but since the trip I have been feeling distraught, exhausted, moody...slow.

More when I feel up to it.

Where's My Pain Decrease?

2011-04-19T15:52:00.004-05:00

It seems only fair that if I increase my pain meds by 50%, the pain should decrease by an equal amount. Stupid world. My cognitive clarity has decreased by about 30%. I would take that much less pain. I'm willing to negotiate!

On My Treatment at the U of MN

2011-04-19T15:36:00.003-05:00

Husband,

I saw Angie Brucker in the pain management department at the U - I didn't see someone who was trying to treat the problem (i.e., trying to resolve the underlying issue). I recommend steering clear of her. My experience with her was that she was interested in getting me off pain medication while advising me to seek more therapy (I see my analyst twice weekly) with their therapist and just accept that "sometimes people have to go to work when they're sick." After all, she goes to work when she is sick sometimes.

Bah.

Dr. Frank Tu

2011-04-19T15:23:00.003-05:00

The doc in the Chicago area to whom I referred in my last post is Dr. Frank Tu.

I am not certain this is his most recent contact information, as I have not yet looked into seeing him. He's not terribly far from me (at least I would not have to fly), so he's next on my list, after Goldstein. Based on internet discussion of Goldstein, I may wish I had gone in reverse order, but I figure I'll end up with both of them some time or another, so perhaps order isn't terribly important.

We increased my pain meds by 50% yesterday (from 10 mg oxycontin X 3/day to 15 mg x 3/day), so I may be less coherent than I think I am. I am sleepy and sad and I want to go home.

State of Things/Anyone Know the Gynecologist in Chicago Area?

2011-01-24T13:00:00.003-06:00

Higher pain level lately. Hard to tolerate psychologically. It's tough not to hide in my bed with an ice pack and retreat.

I have made an appointment to see Dr. Andrew Goldstein in Washington, DC in late April. When I told the NP who manages my pain meds that this morning, he was encouraging and said there is another man who is known in the (small) circle of people who treat pelvic pain competently - one in the Chicago area (might decrease travel cost, as I could drive there instead of flying). He's tracking down the name for me, but doesn't have it yet. He thought it was "Fong" or something like that. Anyone happen to know?

Frozen

2011-01-17T16:03:00.001-06:00

I am tired of cramming ice packs into my crotch.

Anniversary

2011-01-12T12:10:00.002-06:00

I didn't realize it yesterday, but noticed this morning that 1/11/11 is the fourth anniversary of the sudden onset of constant, intense pain.

Better Pain Scale

2010-12-30T13:21:00.004-06:00

Those useless pain scales at your doctor's office? Picture- or number-based, and not the least bit capable of making the level of pain you're in clear to your provider, right? Allie Brosh at Hyperbole and a Half has created a better pain scale.

If that made you laugh (in addition to its feeling eerily appropriate for those of us with chronic pain), you may also enjoy everything else she has posted on her blog. If you are religious and never enjoy irreligious treatment of religious stories, avoid "The Year Kenny Loggins Ruined Christmas," but if you consider yourself religious or spiritual and can have a sense of humor about things that Pat Robertson would call blasphemous or heretical, you'll likely enjoy that post, too.

P.S.

2010-12-30T12:54:00.001-06:00

Welcome, Hope! Sorry you're here for most of the reasons you're here. But, I'm glad you're here for the trying-not-to-get-lost-in-the-pain-and-withdraw-completely-from-other-people reason. Whatever it takes.

Message for Hope's Sake

2010-12-30T12:16:00.010-06:00

If she's reading, that is.

You know, Hope, my husband (henceforth called "Husband," because I'm lazy and that's easier, though this way I have to hit the "shift" key) urges me to post here more often. I think he hopes or expects that writing will help me freak out less often. (A side effect of that would be less bitchy behavior, including assuming he is being a jerk when he is not, thereby hurting his feelings.) But he also seems to understand better that anyone who write about this from a personal perspective has the potential to offer a new idea to another person afflicted with this crap - or a new doctor - or even just someone to read/talk with who gets it. I often intend to write here more often for all those reasons, but it's damn hard to sit down and write when even the sitting is painful, and focusing on the experience in order to write about it makes me more aware of the pain. It makes me sad to write about it, it makes me angry to write about it - both of those things, I think, because it draws my focused attention to it in a way I try not to allow at other times. Therapy sessions (my own, not the ones where I am the therapist) are some of the most physically painful times for me for that reason - I shut up and focus inward, and the pain comes roaring out at me with all its teeth and multifaceted characteristics. Here's SHARP, and STABBING, and ACHING, and SHOOTING, and CONSTANT, (I can't forget OH FUCK LIGHTNING KEEPS STRIKING MY CLITORIS!) in all their vibrant, flashing colors!

Yay, awareness!

A few days ago, I felt a bit horny and wanted to capitalize on it, because Horny doesn't show up very often anymore (something else that makes me angry and sad, and feel deeply bad for Husband). So I thought about it purposely in the early evening, conspired to convince Husband that it would be a good idea to try intercourse (I specify because I think the word "sex" has all sorts of possible meanings), and had a glass of wine. I don't drink alcohol very often - never was a big drinker, as even before the constant flow of narcotic pain meds through my system, alcohol in any amount made me sleepy. Now, with the medications, there's no point in trying to remain conscious after a few sips of wine or whatever.

That reminds me. I haven't taken the damn noon oxy. Sigh.

Back to the I Want To Have Sex With Husband plan. (He reads my blog, so now he'll know what I was up to.) The last time we attempted was three or four months after my surgery. Pay attention now: surgery was April of 2009. We haven't attempted since then because even helping him feel good, with no touching of my formerly fun bits at all, increases my pain significantly, usually for at least two days. Those parts of me are fucking ruined for me AND for him. (For now. I have to keep reminding myself that it may not be permanent. Shit.)

The problem, and the reason Husband never found out about this plan, is that by the time I had been thinking about this for a few hours, I was in significantly more pain just from the anticipation. I wasn't super wound up - just mentally keyed up a bit, and that was enough. I thought I could change my expectation and offer to help him feel good, but by then I was approaching my 8.5 on the pain scale and had taken another break-through pain pill, and concluded I had to give up on my plan. I don't know that Husband would have gone for it, anyway, but after failing even to approach him because there was too much pain, it hardly matters. What would feel better from his perspective? Trying to have sex and having to stop because it hurt his wife too much (and then knowing it hurt more than average for some time after the attempt)? Succeeding and then watching me be in lots more than my average pain for who knows how long? Being asked, and feeling like he had to turn me down in order to avoid either of those things? That one's really enjoyable for both of us.

Damn it, now I am really angry. Someone needs to find a sure-fire fix for this. And no, colostomy bags and adult diapers are not an acceptable "side effect" of a permanent fix. Think of something else, docs.

Okay. This post was for Hope, wasn't it? Not an uplifting one; I'm sorry. But it's a post, and often, that's what matters. I am sorry you have been suffering this bullshit for so long. I can't remember anymore if it is my fourth or fifth anniversary of the sudden onset of severe pain that is coming up in two weeks, but I know either is plenty more than long enough. I love Husband, and I miss being sexy with him. Lots.

Welcome; or, Sorry You're Here. Also, Things Suck

2010-11-09T10:58:00.004-06:00

I am trying to get a post out today about what's happening in my treatment and in my head. At the moment, I have just a few minutes before I need to leave my office, between patients, and go see my own analyst. She might get an earful today, or I might just cry. Not that I get to decide...damned unconscious seems to have a mind of its own - no pun/stupid psychotherapy joke intended. This morning I was sitting in my car listening to a report and commentary on Matt Lauer's interview with W. about the latter's book, and the commentators said something that struck me as so funny (12-yr-old girl at a slumber party at 2:30 in the morning funny) that I laughed out loud, at length, and then found myself sobbing for a couple of minutes. I don't know exactly why.

I was bitchy grumpy yesterday, and one day last weekend, and I think it's an undetermined "FUCK, this sucks" thing going on. I went shopping for clothing appropriate for a funeral yesterday because an old boyfriend has died, and THAT sucked. The death and the shopping. The fact that what I bought is the nicest thing I've bought to wear in a long time sucked (my doing, but it sucked anyway). My lower back hurts a lot and my PT think it's because of a muscle that also screws with my pelvic floor, and THAT sucks. I am angry and THAT sucks.

This actually says quite a bit about what's happening, doesn't it. If you're here for the first time because you're searching desperately for information and community on or around pelvic pain, welcome. Sorry you're here. It sucks.

For Anonymous & Wife

2010-10-20T21:08:00.006-05:00

Anonymous,

I am sorry to hear you and your wife have been struggling with this for a decade. I'm happy to answer questions about the surgery. Dr. A did mine the way he did because he thinks that entry point (through the buttocks) provides the most unobstructed view of the nerves in question.

The surgery was 18 months ago, and while what I call my "background pain" (the constant pain that is livable, I guess, with pain meds) remains mostly unchanged, the horrible, make-me-holler-and-lose-my-balance, sharp electrical-type pains have reduced from multiple times a day to once or twice a week. That's a big deal, but not nearly enough. I am still at a 6 or 7 on a pain scale where 10 is "kill me now" on the oxycontin and oxycodone and a 9 without it. Unacceptable.

At my med appointment today, my NP asked me to think about the Medtronic implantable neurostimilator. He said what we're doing now isn't good enough, and that it's making him tired to watch me. (I like him, he's funny.) I'll try to write more about this soon...have videos from the clinic to watch about it.

I'm sorry I didn't respond earlier. I have ambivalent feelings about blogging (see my comment to Pearl on the last post). My husband said to me tonight that I should read my blog - people are talking to me. Hi, People. I am glad to find you here. Or, rather, I wish none of you knew to look for blogs about this, but given that you do, I am glad you are here.

Kate

Research

2010-04-14T13:23:00.004-05:00

A colleague at work who forgets that I have pudendal neuralgia, not vulvodynia (still, at least she knows and cares, right) sent me a link to this article. Thought I'd share it in case some of you haven't seen it.

Guidelines for Management of Vulvodynia Issued

"Clinical care should follow the principles of general chronic pain management," the review authors write. "Treatment should be holistic and focus not only on the primary site of pain but on its subsequent impact on the patients' lifestyle and sexual functioning. The evaluation of different treatments is very difficult because published research on vulvodynia has many limitations with poor patient selection, limited follow-up data and a paucity of randomized clinical trials."
"These guidelines act as a starting point to aid doctors and other healthcare professionals in the diagnosis and management of vulvodynia, and to increase awareness and education on the condition," the review authors conclude. "The clinician should play a role in the assessment and diagnosis of vulvodynia and liaise with colleagues in difficult cases. Team work should be nurtured and developed."

Some Dramatic Title

2010-04-06T14:49:00.003-05:00

I really just want to go to bed. I want warmth, comfort, dark, and quiet.

Let me just add:

Fuck.

Fuck!

FUCK!

(insert tantrum about it being "unfair," how lonely and sad and hopeless I feel, and how much I don't want to do anything for anyone right now)

Lonely

2010-04-06T11:05:00.002-05:00

My husband and I are lonely together in the same house. We have been in this mess for so long. It's not just sex that's missing anymore, but that is at the root of it.

And Now For Something Completely Different

2010-02-10T13:31:00.002-06:00

Some people cannot allow themselves to be helped even though they are begging to be helped, and I have to understand and remember that.

Blatant Call to Know I am Not Alone

2010-02-02T15:27:00.001-06:00

Anyone out there reading this also have pain (not discomfort, though that sucks **** too), but outright pain all the time? Just ALL THE FUCKING TIME? No matter what?

Things I Want to Post About But Am Not Ready to Write About Yet

2010-02-02T15:24:00.005-06:00

-PT

-My emotional state

-How this particular pain affects my work with my patients

I thought there was more. Huh. Maybe it'll come back to me later. Maybe Phineas & Ferb can build an Improve-Your-Memory-Even-On-Narcotics Machine. Ya think, Lora?

Update to "Right Direction"

2010-02-02T15:09:00.003-06:00

The ligament distraction worked in that it decreased pain a bit for 1-2 days each of the about six times we did it. My doc has me in PT now, where we did pelvic floor massage. Not MUCH, mind you, and the pain has been significantly worse since then - nine days ago. Jesus Christ. PT said if this is too much, we'll go back to ligament distraction. I really just want to scream.

Yesterday, the NP I saw at the pain clinic (my daughter says I need an "anti-pain clinic") increased the oxycontin. Very despairing.

Transplant

2010-01-12T16:39:00.003-06:00

Entire pudendal transplant, please? I want a physiological do-over. Perhaps a "Way Back" machine and the combination shrink-ray and submarine from Phineas and Ferb, so I can go into my own developing body in utero and make sure the pudendal nerve grows over the spino-sacral ligament instead of through it.

I

2010-01-12T11:15:00.001-06:00

Fucking Hate This.

PT

2010-01-10T23:37:00.005-06:00

Began physical therapy at Dr. Antolak's request. Two therapists at MAPS. Will involve more ligament distraction, pelvic floor massage, strain-counterstrain, and a couple of other things I can't recall right now.

Pain is awful. Stress related to it is sometimes worse. Sometimes I manage the pain well...other times it (and its relentless persistence - wait, is that redundant?) makes me so angry I am just a bitch. I have a therapist - I am a therapist - and I just can't make this be different. I often can do better than I am right now, but sometimes I just can't hold it together. I wish it didn't hurt my family. I wish I didn't hurt my family with it. I feel like shit.

Right Direction

2009-10-22T22:43:00.002-05:00

The ligament (think I had it wrong as "tendon" before) distraction might be helping! It's hard to tell, because 9 days ago I got the flu and pneumonia, so I don't move a lot and that could be why the pain is down. BUT, I'm taking 2 oxycontin a day and 0 oxycodone, compared to 3 and 2, so I am counting that as progress. I am, I am, I am!

Grrr 2

2009-10-13T20:46:00.002-05:00

Just...fuck. Ow, and fuck.

I don't feel like I have anything to give anyone. I will anyway, and this will pass, but right now: FUCK. FUCK FUCK FUCK FUCK FUCKITY FUCK FUCK.

Grrr

2009-10-13T15:14:00.005-05:00

Had Distraction Technique for fourth time yesterday. Husband was with and was lovely. It helps a great deal to have him touching my face or holding my hand through this godawful procedure. Didn't cry third time, did yesterday. Might have been more painful, or might have been that I took 3 ativan instead of 4 yesterday. Good news is that there have been no pain spikes since yesterday, and there weren't any for three days after Time #3. Bad news is baseline pain is very high today. Plus I've caught some virus. I notice I do not do well with "other" pain or discomfort - increasingly so as the pudendal pain lingers into its third year. I feel like whining and bitching. I want to go home, snuggle up under a fuzzy warm blanket and whimper/cry until I fall asleep. And no dreams about dying cats or secret grandfather's rooms or any spooky bullshit like that, either!

Angry, much?

"Distraction" Technique

2009-09-28T22:11:00.004-05:00

Had rectal massage of tendons that Dr. A calls a "distraction technique" (nice euphemism) again this morning, through another 4 mg of ativan. A week from Wednesday, I will try it will 3 mg. Cried again. Hurts horribly. But a tech who is always lovely to me when I have injections was curious about the procedure, and I said she could come see how it goes if she wanted, which she did, and she paid attention to what he was doing but also held my hand and stroked my hair while I cried and (cried out.) [Thank you, L.] No sharp pains since this morning, whereas last night one hit me that was so bad I was lying on the couch with an ice pack clutched to my genitals and had tears running down my face. I HATE it when that happens when my kid is around. She was upstairs, but say the aftermath of the tears. Damn it. That one lasted 10 minutes.

I hope I am without the awful pain spikes for two or more days this time. Funny, what one begins to look forward to.

This Morning

2009-09-24T07:41:00.002-05:00

It hurts too damn much to do anything.

Now I shall finish getting ready for work.

New Procedure

2009-09-16T16:56:00.002-05:00

Tomorrow, my pain doc is doing something he called "rectal massage of tendons." I plan to be so far into Ativan Land I can't even identify a car, let alone drive one. My husband is taking me there. Visions of my goddamned grandfather dance in my head - as if the medical procedure alone were not enough, my unconscious has to start screaming "FOUL!" It's frustrating...some things I had satisfactorily dealt with in order to discover enjoyable sexual activity take on new dimensions in the face of some of the things I've needed to do to try to solve this medical issue.

Fuck.

Decompression Surgery

2009-09-15T11:01:00.003-05:00

In April, I had pudendal nerve decompression surgery via the transgluteal approach. This link states that the incisions are 2-3 cm; mine are nearly 5 inches long, with one-inch incisions above those, where the drains were for the first day post-op. Dr. Stanley Antolak performed the surgery. He says it went well. I remember his disembodied face floating over me as I came out of anesthesia after three hours under, telling me that I had "really needed this surgery" and that it had gone very well. By this, he meant the procedure had gone well; we don't know yet what the ultimate results will be.

More when I can. I keep trying to write about the surgery and recovery...this is as much as I can do right now. It's also time to leave my office and go see my analyst.

Less Hysterical

2009-09-14T16:51:00.001-05:00

Had massage; hysteria tamped down. Head still hurts.

Make it

2009-09-14T14:23:00.001-05:00

STOP, make it stop, make it stop.

4+ Months Post-Surgery

2009-09-08T15:25:00.003-05:00

And I am in deep grief - for what my husband and daughter have lost, for what I have lost over the last 2.5 years; for what I am so scared, right now, that I may never regain. I feel tapped, like I have nothing to give right now. Maybe tomorrow will feel different, but I can't see it from this afternoon. I also had four steroid injections - extraordinarily painful affair - less than a week ago, and they're making me feel sick (and perhaps emotionally off-balance), so we'll see.

I am removing the post in which I use my real name because I have clients who sometimes seek connection with me outside of session by finding evidence of me on the web. Better to remove it and stick with "K" rather than start a whole new blog.

Pudendal Neuralgia & the MAPS Pain Clinic

2009-02-16T22:06:00.005-06:00

It's not vulvodynia. This is interesting, because what is often Dx'ed as VVD isn't - it's this pudendal neuralgia mess. At least, according to my new doc - he says what I have "encompasses VVD" but goes beyond it. Sometimes (though not often), thank god for Old White Guy doctors. Dr. Stanley Antolak, in Edina, MN, came out of retirement to treat pudendal pain. He did a series of horrific tests on me to determine exactly where the nerve damage is (and it is nerve damage), then began a series of steroidal injections (blocks), which helped a bit...for a while. If I have sex, it's totally blown. Looks like I'm headed for surgery, I think, but not the kind where the pudendal nerve is destroyed - Antolak will go in and literally yank it over to a new place, on the theory that it's entrapped somewhere, rather than just inflamed.

At some point, I'll try to blog the experience at the U of MN pain clinic...probably after I report the treating practitioner to her board.

In the meantime, Prozac wore off (well, it has been seven years) and in the search for a new solution, plus lots of pain meds (I've been off 'em all for months now...but yay! the pain is still horrid!) and directly injecting things into my nervous system, I've been pushed into Serotonin Syndrome...let me tell you, that's a fuckin' day at the Fair.

How is everyone else doing? Thanks for checking in, Lora. Haven't wanted to write. It's been a really difficult two years.

Maybe, Maybe Not

2008-07-30T11:22:00.002-05:00

Might not be true vulvodynia. Might be MS that attacked those nerves first.

I am exhausted. And lots of other things.

Acupuncture Gets an F Minus Minus

2008-03-14T13:34:00.016-05:00

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

2008-02-29T22:05:00.002-06:00

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

2008-01-16T18:42:00.001-06:00

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

2007-12-31T02:57:00.001-06:00

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!

2007-07-01T17:18:00.001-05:00

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?

2007-06-20T21:43:00.001-05:00

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)

2007-05-04T12:33:00.000-05:00

It hurts, it hurts, it hurts, it hurts. It HURTS. All the time. Labia, clitoris, vestibule, perineum, inner thighs. Hurts, hurts, hurts.

(8)

2007-04-18T14:49:00.000-05:00

A car accident - at least, the jarring motion inherent in a crash - increases the pain.

(7)

2007-04-18T01:08:00.000-05:00

Sometimes Percocet isn't enough, either.

Things I've Learned Since Developing Vulvodynia

2007-04-16T21:33:00.000-05:00

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."