I decided several months ago that I have pudendal neuralgia. It was a "well, duh" moment. I'd been reading blogs about pudendal neuralgia for a while and I'd crossed tracks with it several times in my research -- but I never thought I had it because I'D SEEN TEN THOUSAND DOCTORS AND NONE OF THEM TOLD ME I HAD IT. Of course, I saw ten thousand doctors before Dr. 10,001 told me I had vulvodynia, so I don't know why I thought pudendal neuralgia should be different.
Anyway, late last winter it finally clicked in my head that this pain I have while sitting is probably related to my vulvodynia, and boy, doesn't that sound like something else I've heard of? The center of my sitting pain is actually below my tailbone, right above my hidey-hole, and it feels like someone is trying to jam a fire hydrant up there or something.
Pudendalhope.info describes the main symptom of pudendal neuralgia as
"pain in one or more of the areas innervated by the pudendal nerve or one of its branches. These areas include the rectum, anus, urethra, perineum, and genital area. In women this includes the clitoris, mons pubis, vulva, lower 1/3 of the vagina, and labia."
Uh, yeah! All of us V-girls? What I like about this description, though, is that it names the clitoris and mons pubis as part of the territory, which vulvodynia never seemed too concerned about. Indeed, the vulvodynia specialist I saw told me I might be a candidate for vestibulectomy -- as if he'd never heard me say my clitoris hurts too! Oh sure, cut out the vestibule, then I'll be fine... I'd actually say my clitoris and the inner mystery just above it are the most assailed parts of my vulva.
Some other symptoms I have that intersect with pudendal neuralgia, the ones that made me go OMG! You are so much more accurate than vulvodynia!, again from pudendalhope.info:
- Pain is not immediate but delayed and continuous and stays long after one has discontinued the activity that caused the pain (hello morning-after flares)
- Pain after orgasm
- Need to push to empty bladder
- Urethral burning with or after urination
- Feel like bladder is never empty or feel the need to urinate even when bladder is empty (note the similarity to interstitial cystitis)
- Pain after bowel movement
- Feeling of foreign body in rectum.....................................(I am so hot)
I have to admit, every time I read these symptoms I get very excited. Will I be able to be treated??#$@???!?@@?!????? My fingers fly all over the keyboard. But it's not even the treatment that revs me up -- it's the idea of having a physical explanation, a REASON for my pain. KFJEJ:OEWRUW#)(%)#()*!!!!!!!!!!!!!!!!
I'm writing this post now because I'm two weeks into sitting at a desk full time, and my butt and the chair are not getting along. At first I found exotic new ways to sit in an office chair. Then I put my feet square on the ground and leaned forward until my nose dusted the computer screen. By Wednesday of this past week, I was standing up every few minutes to relieve the pain and revisiting pudendal neuralgia online.
My vulvar pain has also changed shape with all this sitting-sitting-sitting. My clit is in a session of obnoxious pinchiness, kind of like getting a shot. My bladder has been hurting more as it fills, too, which means I've been peeing more.
I'd been lucky for fifteen months prior to starting this job -- I was working as a waitress, standing up all day long. When I came home, I'd sit or lie on something that would be nice to me. When I went to bars, to restaurants, to visit family, that fire hydrant would shove itself up into my life and I'd roll around on the chair and deal with it until the night was over. Walking around at work all day wasn't great, and occasionally I'd get bowlegged (at least mentally) because every step gave me a urethral twinge. But, as I suspected, it totally beat sitting in a chair.
For a couple years before waitressing, I was a student, so I was never stuck in any seat for very long. I had pain, but again, I wiggled around it. It was back in 2006-07, when my vulvodynia first started, that sitting in a seat was last my full-time job.
Now I'm realizing that the horrid pain I had during that time was probably compounded by all the sitting. I quit that job around the time I stopped eating gluten, so I thought gluten had been the elevating factor -- but it probably wasn't alone. In fact, the pain I'm feeling now in my clit/bladder region is a lot like it was when I was at that job. It's not as bad, but it's a similar quality. I still think gluten plays a role -- it's inflammatory and makes my life suck in general -- but now I realize it probably wasn't the only culprit.
And! My period of least pain since I got vulvodynia in 2006? When I was lying on my back last winter for 10 days with a laryngitical flucold thing! My pain almost went AWAY during that time. It was BEAUTIFUL, so beautiful that I cried and am almost crying now.
At the time, in the back of my head, I knew the reason the pain was almost gone was that I'd been lying down so much. But I didn't want to admit it. I STILL don't want to admit it. Because I don't. Fucking. Want. To. Lie. Down.
So this is all very good news, but I have no idea where to turn. I searched for "pudendal neuralgia" on Cleveland Clinic's website and the search returned NOTHING. Oh, Cleveland Clinic! You talk so big! I'm sure someone somewhere in that mini-city knows something about pudendal neuralgia...but I have had such mediocre care there (including aforementioned vulvodynia specialist) that I'm annoyed at the thought of trying again (Dr. 20,002). So I have to find a doctor, even out of state, who will help me out. At least evaluate me for pudendal neuralgia and tell me my options. Oh, I hope, tell me I HAVE pudendal neuralgia. It would seriously make me feel like I'd won the Olympics. Every event, summer and winter, all the way back through time.
I hate to sound SO OKAY with having pudendal neuralgia when it completely destroys people's lives. The thing is, I already have whatever I have. I'm already living with it; it's already destroyed (and rebuilt) my life (well, I'VE rebuilt my life). Having something specific and treatable is always preferable to ~~~~MYSTERY DISEASE~~~~ with the same symptoms. Please don't think I underestimate pudendal neuralgia's impact; I just want a way forward. I just want a freaking NAME, a reason, a diagram of my pain's mechanics, and pudendal neuralgia is my best bet yet.
P.S. OMGOMG! Today is my Vulvodynia Anniversary!!!!!!!!! 4 years!!!!! And somewhere around here is the anniversary of this blog!!!! 2 years!!!!!! HAPPY ANNIVERSARY MS. PEACH!!!!!!!!!!!!!!!