Posts tagged ‘vulvodynia’

Capsaicin and tissue health

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.


Four week update

Written about a month ago

I’m four sessions into PT. Within a session or two, I started really locating the source of my issues; I think I had been noticing less specifically where the pain was occurring and having some referred pain. I feel like I have a much better sense of what the muscular problems are and where.

I am responding well to PT. The muscles are definitely relaxing more. I use dilators and a Therawand at home, have thigh stretches, do some light myofascial work on my stomach, and am supposed to squat several times a day to help relax my pelvic floor (I typically forget this but finally set phone reminders for myself four times a day, which should help significantly). My muscles are definitely less reactive, I’ve found better ways to adjust when I need to, and everything hurts less when it does get tight.

The session I had yesterday, she worked on some of the areas with surface issues (vs the muscular problems). Apparently the tissue underneath those super sensitive raw areas is really thick. She held several spots, which was uncomfortable, but then they released. It’s the first time I think I’ve really felt like this might actually resolve the entire issue in the long run, including all the surface irritation. I’m pretty amazed; I didn’t know that could happen.

I’ve also discovered Katy Bowman, thanks to a friend. She’s a biomechanist who talks a lot about the pelvic floor, among other things (apparently 80% of women have pelvic floor issues at some point during their lives. 80%). I’m working on changing my shoes and my overall movement patterns to support health in my pelvic floor and my whole body. Its also given me an avenue to see how this might have developed, without any underlying emotional trauma, and to help support my continued healing.

All of this is pricey, and my insurance doesn’t cover it. But I feel like this is a good use of some of the savings I have. I’m happy about my progress, and pretty excited about maybe finally getting my nether regions to a truly healthy state.

My chronic vulvar pain

First written about two months ago.

It’s been about ten years since I first developed my chronic vulvar pain condition.

I didn’t know what was happening at first. By the time I figured it out and got my self-diagnosis confirmed at Planned Parenthood, I knew vulvar vestibulitis meant a condition that virtually no one knew how to treat, let alone cure.

I felt broken, defective, and ashamed to my core. I would be insanely jealous of random women I saw on the street, because they probably didn’t have the intense burning during sex and for 48 hours afterwards. I had sex anyway and just dealt with the pain as long as I could. I couldn’t handle being vocal about it with the sexual partner I had at the time, and he didn’t care enough to check in.

It was a couple years later that I found the treatment I’ve been using since. Topical capsaicin burns quite unpleasantly when I use it, but it is pretty effective at depleting the chemicals that cause the pain cascade during intercourse, and it leaves me sexually functional.

Eight years later, a few months ago, I decided to see what else I could do.

Tomorrow, I start PT; specifically, pelvic floor rehabilitation. I will be going to a clinic with two PTs who do only pelvic floor rehabilitation, and we will work primarily on getting one specific muscle to relax, along with whatever else is connected to it. My new specialist, one of the best doctors I’ve seen in my life, thinks that this should solve the majority of my issue, addressing it at the cause.

Sometimes I think it would be easier if there were trauma I could associate with it. Sometimes I feel like there has to have been something, that I’m missing something, bypassing some memory, or maybe it was small and cumulative. I haven’t been able to find anything, and I don’t know whether I’m missing it or not.

I’ve been ashamed of this condition since I developed it. Sometimes I’m ashamed that I have to make adjustments during sex to keep my pelvic floor muscles reasonably happy. Sometimes I still feel a little defective.

But I’ve batted around the idea for years now of being more open about it, because that’s what kills the shame, and because I know that some women who read this are experiencing, or have experienced, the same thing, and because there is power in not being alone with it.

And because I want them all to know that there are people like my partner who, both times I have ever apologized to him for needing to make an adjustment during sex because of my muscles, said, “You don’t EVER apologize to me for your muscles.” People like my ex of years ago, who, plenty flawed on his own in so many ways, never once complained when we stopped having intercourse before I found capsaicin, and just had a lot of oral sex with me instead.

For all the several uncaring partners I’ve had, I’ve had several who’ve made it clear that I was always what was important, not that slightly deeper thrust. That I was never defective to them.

It’s amazing to think that, after ten years, I might be able to correct the underlying problem.

Wish me luck.