Better Pain Scale

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.

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

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

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

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

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

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

Let me just add:

Fuck.

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

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

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

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

-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"

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

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

Fucking Hate This.

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.