Tuesday, January 21, 2014

Vulvodynia, what is that *exactly*?

Here's a couple of humorous write-ups that accurately describe the agony and frustration of vulval pain. Warning: swearing, lots of it!
"I’m ready to take my vagina out of early retirement. I don’t know if I’ll find an effective treatment, but I’ve come to realize I deserve the effort of looking for one."
My thoughts exactly! Meghan Rowland, 'Unlocking the Venus Fly Trap: the horror and humor of coping with vulvodynia'. 

"I had an epiphany. 'F*** that', I thought. 'If nobody else is talking about Vulvodynia I will. It's a medical condition that has absolutely nothing to do with my sexual preferences. Why am I so embarrassed to talk about my vagina?' So I am telling you, the internet, about my broken vagina."
"Considering how common vulvodynia is, it’s shocking how few people know about it. I’ve come to realise that when it comes to women’s health problems, we can’t wait for doctors to figure out what’s wrong and how to help; we have to educate ourselves and our doctors, leading the way in our own healthcare."
 One day I'll 'come out'. In the meantime, I'm telling all my friends individually (if I think they can cope with the TMI-factor)!  The Vagenda, 'TMI Special: Vulvodynia'.

New diagnosis

Well, hello! I've been a little, erm, absent from this blog for a while. Mostly because my symptoms where, for a large part, under control and barely troubling me. Until a fortnight ago when I had a massive flare-up. I have been in constant pain since.

I went to see my GP. I haven't been to the practice before with this particular issue. But they've been very kind to me and provided excellent care for my other chronic health issues (OCD/anxiety and asthma). I explained the whole sorry saga to her - how I have been variously dismissed and treated like a neurotic by various doctors and specialists over the years. And guess what? She came up with a brand new diagnosis. Something with which I am familiar, but which was very difficult to find any information about a decade ago and which, when I suggested it to my then GP, was completely pooh-poohed.

I have a 'neuropathic pain disorder' - vulvodynia by another name. Basically, vulval and vestibule soreness, burning, aching pains, with no obvious cause. It is, apparently, little known, little understood and estimates reckon, massively under/mis-diagnosed.

I could've cheered/hugged her when she calmly stated that she's seen several cases like this before AND that there are effective treatments available.

I cannot convey how delighted I am to have a diagnosis at long last, but equally angry and appalled at the lack of care I've received in the past.

So, I've been doing some research. There is loads of information now available. Even the NHS has an informative web-page on vulvodynia. The Vulval Pain Society has loads of resources about different medications, advice and support.

I have discovered that the repeated treatment with topical anti-fungals may have worsened the condition and that the reason why the anti-candida diet helped me is that it overlaps in some quite fundamental ways with the low-oxalate diet, often recommended for women with painful vulvas.

I have some treatment options. The GP suggested that I go on amitriptyline - not because I'm depressed, but because it interrupts nerve signals. But that would also require me to come off citalopram - which I take to help control anxiety and OCD. And it's very effective. I'm reluctant to go down that route, therefore. Another option is gapabentin - an anti-convulsive, but effective at reducing nerve-related pain. There are also topical anaesthetics -should I ever find myself in a relationship again (unlikely, frankly!) - physiotherapy exercises and, as a last resort, surgery.

But to begin with, I might see about this low-oxalate diet and try the things that seemed to help before: yoga and acupuncture. And, no more 'orrible plastic sanitary towels (I think they may have triggered the current flare-up). It's reusables all the way from now on.

So, I'll be shifting the focus of this blog slightly, accordingly. I want to keep a record of what works, and perhaps reach out to other sufferers of this rotten condition. Because I know you're out there somewhere...