Friday, October 9, 2009

Sisyphus and Her Ball of Theories

I don't have syphilis! At my dermatologist follow-up, they checked for syphilis since my biopsy result (plasma cell vulvitis) sometimes comes along with syphilis and that test was missing from the initial round that got me the vulvodynia diagnosis. But I don't have it! And even more wonderfully, I don't have to tell everyone I know that I have syphilis!!!

They didn't check for Sisyphus, but I think that's because it's self-evident.

The appointment went okay. My dad went with me to be the heavy, and he wore a suit specifically because people react differently to suits. I thought it was very James Bond of him.

We talked for a long time with the resident, painting the picture of how the pain has devoured my life and there are no answers anywhere. And even though it didn't result in anything at all, it was really good to have an extended discussion about it with a more-or-less doctor. She pointed out that if my pain were due to an infection, it would probably have been killed off by immune system by now, or, if my immune system is compromised, it would've become systemic. It would have changed; if it stuck around, there would be additional symptoms, a fever, anything. I've thought about that before, and she's right -- or, probability is in her favor. That they still tested me for syphilis, that other doctors have treated me for infections -- an infection isn't impossible, but it shouldn't be the main theory.

The real doctor got the story from the resident and came in repeating "We have very few options." She gave me a sample of Vusion, a topical ointment of zinc oxide plus an antifungal. I tried Desitin (similar) when this thing started and it just made the area more irritated, so I haven't tried the Vusion yet. She also said that Protopic (tacrolimus cream) might help, but I explained that I really don't want to try another immunosuppressant without pain meds, and she wasn't about to prescribe those.

I kind of understand why she wouldn't give me pain meds when I remove the urgency of my situation and step into her cold, cold heart. She said I should go to pain management for that kind of treatment, and that's fine. She's scared of making an addict of me.

What I don't get is do these people really think I (anyone) won't go find some kind of pain relief by myself? The thing is, I WON'T. I'm a huge dork in that respect. But lots of people will, and I'd think it'd be better to get addicted legally, if nothing else.

About limited options, she's right to an extent. Plasma cell vulvitis is a rare diagnosis, and steroids are the first and most hopeful treatment for it. However, I've read about people getting surgery to cut out the painful skin, just like with vulvar vestibulitis, and I figure there are probably other things dermatology can do for me if I really think this is a dermatological problem. So the doc was being a little abrupt, but whatever. Used to it.

But she did mention something I've wondered about -- that the biopsy result could've been totally unrelated to my pain, or that normal skin could biopsy like mine did, with an abundance of plasma cells. And frankly, I don't think this is a dermatological problem. It hurts when I cough or laugh, it hurts to walk, my bladder can't get very full before I run squealing to the toilet, etc., etc. If there is a skin component, it's a lesser player than whatever is happening inside.

Then I realized that I could probably sue the urologist for continuing the cystoscopy after he saw I was in so much pain, and it dawned on me that maybe he isn't the best doctor to be treating me.

So I'm going to get a second opinion on interstitial cystitis. Even if I don't perfectly fit the description, those meds, unlike pain meds, are not addictive, and there's no reason I shouldn't get to try them. And then I can go back on a tender-to-my-pelvis diet and work on repairing my tubes and niches.

I'm reconvinced that I do have a problem definable as interstitial cystitis, and for some reason, that gives me hope. It reminds me of the gains I made with my diet changes last winter -- it reminds me of how the vulvar pain receded on that diet and how my bladder pain improved as well. It's a hard diet to keep, and it requires hope above everything else. Veggies, rice, meat. But I know if I can do it I'll feel better.

In the meantime, I am eating like the SADdest American possible in preparation for my MRI. I figure, if it's anything seeable, I might as well make the bulb glow :)

1 comment:

  1. Hey did you see this? Journal Article about Plasma Cell Vulvitis - (Has dermatological condition pictures on the first page; those pictures are about something else though) Is this the thing you already read? I see what you mean about it mentioning surgery as an option, but, it sounds like there's other things too.

    It's a pretty short article though, not sure how helpful it is. Esp if you've already seen it.