“Have you tried just relaxing?”
I stare, dumbfounded, at the middle aged man sitting opposite me. He’s a Sex Therapist, and it’s taken me six months to get this appointment.
“I – I don’t think that’s the issue-” I stammer, but he interrupts me with a clammy hand on my knee.
“You’re young, you’re healthy, there’s no reason you should be having any trouble. Maybe you could try relaxing and just let your boyfriend get on with it?”
Unfortunately I’m only 18 during this encounter, and I haven’t learned to stand my ground against medical professionals.
The Boyfriend isn’t here, he couldn’t make it for this appointment. It’s one of the downsides of the long-distance relationship thing; I’m having to go to most of my appointments on my own. If he were here I’m sure he’d have something to say to this smiling man with the clammy hands squeezing my knee.
But he’s not. I’m alone, I’m anxious and I’m horribly uncomfortable. I’m the youngest patient here by a long shot: all the other women in the waiting room were either mothers or post-menopause. Repeatedly being told brightly “You’re very young to have these problems!” is not at all as reassuring as some professionals seem to think it is.
“Don’t worry, it will probably go away on its own.” His smile indicates that he thinks this comment is comforting, rather than patronising, dismissive or belittling.
This is the first specialist my GP has sent me to – it’s taken 10 months and I’ve had to register with a new GP to get this far. My first GP, back home in the countryside, dismissed my vaginal discomfort as thrush and wrote me 4 prescriptions for different varieties of Canesten, despite 4 negative tests for thrust. I don’t bother to fill the scripts after the first one and eventually register with a new GP in the town where I’m going to university.
“It’s good that you have a supportive partner.” Clammy Hands continues, “It must be really difficult for him since you haven’t been together long.” About 8 months, I think to myself. He’s a real hero for not shagging someone else already. I couldn’t know at the time, but this is a sentiment I’m going to hear a lot over the next 9 years.
After an uncomfortable 20 minutes, Clammy Hands sends me home with instructions to masturbate. He talked about technique at length and smiled the whole time. I’m grateful to leave and don’t go back.
I wish I could say that this is the only time during my journey that a medical professional focused on my ability to have sex rather than my ability to enjoy it.
At one point, after all of the medications but before the CBT therapy, I was sent to a physical therapist. I had already received my lichen planus diagnosis by that point, but the steriod cream they had given me wasn’t having much effect. Initially I’d been told not to use it for more than two weeks as it could cause my skin to get thinner, among other side effects. I ended up using it daily for 18 months, as I had a particularly aggressive strain of lichen planus that resisted treatment.
So, with pills and creams proving ineffective, it was suggested that I try physical therapy. The simplest explanation, according to the gynacologist and dermatologist that I spoke to, was that I had two sources of pain:
1) the autoimmune condition was causing my white blood cells to attack my mucous membranes, which caused pain. 2) my illness had gone untreated for so long that I had developed a neuropathic issue – either my nerves were receiving ‘touch’ signals as pain signals, or my brain was misinterpreting ‘touch’ signals as pain signals.
Either way, any contact at all hurt.
This explained why regular pain killers didn’t stop my pain; they work on a different part of the brain. What I had, whatever it was, was going on in the space between synapses, either in my nerves or in my brain.
This was a problem. The treatment for neuropathic pain is physical therapy – literally retraining your nerves / brain on how to interpret touch signals. But with my lichen planus still raging out of control, this approach was doomed to failure. I still had an active illness causing real pain to the tissue, so there was no way to ‘train’ it back to a normal, healthy state.
The therapist tried digital manipulation at first, which had limited success externally but failed the minute we tried to do any internal work. There were insertable devices for the pelvic floor which has been successfully used with women who had pelvic pain after childbirth, but these things didn’t work for me. I couldn’t insert anything. I hadn’t even been able to insert tampons for years. The vestibulodynia made it too painful, and the vaginismus made is impossible anyway. At the first motion to insert anything, my muscles clamped down so hard that it became impossible. The one time we did manage to insert something it bloody well got stuck and it took me ten full minutes to relax enough to get it out.
In retrospect it’s funny, but at the time it was seriously traumatic.
Eventually, I was given a set of dilators in five different sizes, from finger-width to slightly-larger-than-your-average-penis, and told to start small and work up.
As long as I eventually got to the point where my partner could put his dick in me, that was all that mattered, right?