When my vulvodynia first appeared, it felt like a tiny paper cut (at 6 o’clock facing my vagina). I became aware of it a few times during sex; the irritation was very minor, but it was there over a period of months. That irritation began to become much worse over the proceeding months.
It got to the point where the burning would become very intense during penetrative sex, and I would have active burning sensations for about 48 hours afterwards. I was to that point when I was diagnosed, though I’d made my (correct) self-diagnosis by then.
Things I tried:
-Emu oil (topical)
-Sea buckthorn oil (internal; this actually cleared the surface irritation for about two weeks, and with the burning temporarily gone, I became aware for the first time of the underlying muscular dysfunction in my pelvic floor).
-Vitamin E oil
-Neem seed oil
-Estrogen cream (not only unhelpful but, containing propylene glycol, burned on application)
-Lidocaine cream (I’m pretty sure I was at 5% but it might have been 2%)
-Probably a whole host of other various oils and such I’ve since forgotten
So by the time I tried capsaicin, I’d done all the other things I knew to do.
The first time I used capsaicin–0.025% compounded in an acid mantle base–I couldn’t believe how incredibly painful the burning was. Capcaisin is the compound that causes cayenne and other pepper to be spicy, and it’s the real deal.
I moved up to 0.05% capsaicin after a while, and to an olive oil base once the acid mantle began itself to burn. Seven years after that change, I still use 0.05% capcaisin in an olive oil base. About three years after I started the capsaicin I had adapted to it sufficiently that it’s been years since I’ve sat on an ice pack upon its application. I put it on and go about my day with that regular burning sensation in my vulvar vestibule.
So the issue with all this is that the capsaicin is a band-aid. It depletes Substance P, which is what starts the pain cascade, but it doesn’t actually fix anything but my pain perception. The tissue to which I apply it is still red and irritated; I’ve been looking at it more closely lately, and it looks almost ulcerated in a couple places. Even with the capsaicin, there is typically some discomfort by the end of sex, especially with my larger partner. That are does not like friction.
My specialist has offered up a couple alternatives to control the pain; he wonders whether the capsaicin is furthering the irritation. His theory is that my hypertonic pelvic floor is the underlying cause of all of this, and that the tightness of those muscles is strangling the blood supply; and perhaps once we can fix that part, the tissue can heal. I worry that this is too simplistic, especially given that women with vulvodynia have up to 30X the nerve endings in the affected area. How do you make the overproliferation of nerves clear up? We’ll see.
In the meantime, I’m going to try applying slippery elm and aloe to the tissue to see if I can heal those mucous membranes a little bit.
So the other options I was given: a ganglion block from a pain specialist. It’s not as bad as I’d initially assumed, but I’m going to leave nerve blocks for further down the line if other options fail. The other alternative is trigger point injections, typically done with lidocaine, with which I am considerably more comfortable. Once we get everything in my abdomen moving better through more myofascial release, the plan will be to get me shot up with lidocaine trigger point injections, then send me off to the PT who will work at crazy deep levels requiring pain management for the next couple days, but possibly allowing much deeper release than I can currently get in a session.
Meanwhile: Both partners (yes, I have two; they know all about each other and everyone is on board with this and happy) are totally willing to forego penetration if I want to come off the capsaicin for a while and see what happens with the surface vulvar tissue when I do. I am worried not only about not being able to have the sex I want, but also that I won’t tolerate some of my other treatments (dilator, Therawand, intravaginal massage) very well if the surface pain is so raw and hard to take.
Here’s hoping I can find a way to increase the tissue health without having to come off the capsaicin, and that healing the muscles will help the surface to heal like my specialist thinks it will.