Unreal

This is a wildly unreasonable amount of pain. I would go to the hospital if I had any reason to expect to be taken seriously, but the one time - the one time in seven years of constant pain - that I went to the ER because of increased pain that I could not tolerate, the first thing the ER doctor said to me was "We can't give you anything intravenously." Being a chronic pain patient in the ER for pain is not a positive experience.

I don't actually know what it feels like to be simultaneously impaled rectally and vaginally, but that's the best description I can give. It woke me last night, and the pain was so intense I thought I would vomit. In the morning, it had calmed some but was still far above my average of 7 on all of our favorite pain scale. Since 9:00 this morning, it has fluctuated between that and "someone is shoving the spike farther up my rectum." It is truly not okay.

Why is it that I do not have something to take that simply knocks me out on the infrequent occasions this happens?

My state needs to allow medical marijuana. Or medical cartoon anvils to the head.

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

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

I am tired of cramming ice packs into my crotch.

Anniversary

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.

For Anonymous & Wife

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

Blatant Call to Know I am Not Alone

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?

Update to "Right Direction"

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.

PT

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.

"Distraction" Technique

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

It hurts too damn much to do anything.


Now I shall finish getting ready for work.

Less Hysterical

Had massage; hysteria tamped down. Head still hurts.

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.

(8)

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

(7)

Sometimes Percocet isn't enough, either.

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."