Lichen sclerosus~ my story

Sitting there on the hard plastic chair, my hands clasped tightly in my lap, I asked the consultant to repeat herself.
‘The doctor you saw on your last visit was correct. You have Lichen Sclerosus.’
Nodding, I listened as she outlined the disease. Of course, after my last visit here to the GUM Clinic when the doctor had hinted that the discolouration ‘down there’ may be Lichen Sclerosus, I had googled it. Everyone does, don’t they?
Now, sat in the small, stark room I tried to focus on what she was saying. Her words muddled with the research I had gleaned on the internet. I needed to listen, I needed to get the real facts. After all, everyone knows that Google churns out the worst case scenario. Everyone knows that you can Google a papercut only to be told you have a fifty percent chance of your arm needing to be amputated. It’s a well-known fact that that’s how the websites get their hits, by sensationalising the normal. This Lichen Sclerosus thing can’t be as bad as all that. Some of the things I’d been reading… Shaking my head, I tried to shut the thoughts away.
‘If you look here.’
Leaning forward, my left foot tapping on the floor, I peered at the photograph on the camera. Not in a million years did I ever think I’d be asked to gaze at a photo of my own vulva.
‘We’ll keep this photo as a base and then when you come back we’ll have something to compare any changes to. Of course, you can ask your family doctor to refer you to the hospital, if you’d rather?’
Shaking my head, I swallowed the bile stinging the back of my throat. How could I go to my family doctor and show her this?
Nodding, the consultant shifted in her seat and picked up a pen, using it to point to the various parts of my photographed vulva. ‘Here, you can see the tell-tale grey-white patches on your skin. You can also see here, and here, that your labia minora has fused with your labia majora.’
Biting the torn cuticle of my thumb, I blinked. ‘You mean I’ve lost my inner lips? They’ve just gone?’
‘I’m afraid so. Your Lichen Sclerosus has resulted in them fusing.’
My Lichen Sclerosus? Mine? I don’t want it. I don’t want the stupid Lichen thing. And how could my inner lips have disappeared? How could I not have noticed? I mean, I’d noticed something was up, something had changed, but not in a million years did I think this had happened. Or that it was even possible to literally lose part of your body. I’d thought I was going mad or something, I’d thought I’d remembered it wrong. Why hadn’t I taken more notice of my own body? Why hadn’t I come to the clinic when the nurse had first said something looked different?
I wrapped a strand of loose hair around my finger. I’d had my smear, what, four months ago? It had been then that the nurse had said there were a couple of patches of grey down there. She’d told me to go and see my doctor. But, of course, me being me, and getting embarrassed by stuff like that, I’d gone to see a different doctor, one I wouldn’t have to see again and again for various other things. But this other doctor had said it was probably fine, she’d said it was probably just me, not anything to worry about. She’d advised me to go and get it checked by the nurse who specialised in family planning at the surgery. And I had. And she’d said the same, that it was probably just me, that the skin had probably just changed colour slightly, more than likely due to my age.
I should have come straight to the GUM clinic. I shouldn’t have left it so long. Why had I? I shook my head, I’d had three people tell me it was probably nothing. That’s why I hadn’t. I’d trusted them. I’d taken their word as truth.
Taking a deep breath in, I bit my bottom lip. It wasn’t their faults, it was mine. It was only me who hadn’t taken my health seriously enough to get another opinion. Plus, the symptoms wouldn’t have been as severe back then. That was probably why they hadn’t been able to diagnose it. Still, though, if it had been diagnosed back then, I might not have lost half my vulva. ‘Will it come back? Will it unfuse?’
Leaning forward, the consultant kindly patted my hand. ‘No, I’m afraid the changes are irreversible, but what you do now may prevent any further changes.’
Further changes? What else could happen? ‘But I’m only 39, isn’t it something that’s supposed to affect postmenopausal women?’
‘Not always, no.’
‘I haven’t had any symptoms, though. I haven’t had any itching or any pain, only a bruised feeling when I spend a long time on my feet.’ Can it really be a silent disease? Can it really change the structure of my bits without any warning signs?
‘You’re right, its more common to have itching, soreness and even pain with Lichen Sclerosus, but it’s not unheard of not to.’
Leaning back in my chair, I closed my eyes. Why me? Why did I have this? It didn’t make any sense. None of it did.
*****


Fast forward six weeks and I’m sat holding my mobile to my ear.
‘I’m sorry, no one is available to take your call. Please try again later.’
Folding the hospital referral letter, I slip it into the back pocket of my jeans.
It’s fine. I’ll try again later. And again. And again, until I get to speak to a human and make an appointment.
You see, I’m ready to take control. I’ve done the crying, the grieving of taking a ‘normal’ vulva for granted. I’m ready to block out the feelings of despair and sorrow that keep trying to rear their ugly heads.
It’s not easy. Some days all I want to do is crumble, hide away from the frightening realities of this disease and pretend it’s not happening. And some days I do. But not every day. I’m not going to let this thing, and the fear it brings, control me or my life anymore.
And I’ve already begun, I’ve begun taking control. I plucked up the courage and went to see my regular doctor. I asked for a referral. I’ll get the help and advice I need, as soon as I can make an appointment anyway. Until then, I’ll continue to follow the advice I’ve gleaned from other sufferers. I’ve upped the frequency I use my steroid cream and I now know to apply my moisturising cream religiously, not just when I remember or when it’s convenient.
Yes, I’m not the same as I used to be down there and I never will be. Heck, it’ll probably change again, and again, and again. But am I going to let this disease and the damage it’s doing define me? Hell no. There’s more to me than that. I’m still who I was before this nightmare began. I’m still me and nothing can take that away.
Thanks to the Lichen Sclerosus UK Support Group for Women on Facebook, I now know the recommended protocol is to use the steroid cream twice a day to begin with, not the once a week I was originally told. Now, I have hope. I have a way to try to regain control of my body and thanks to the group, I have the support I need whilst I do so.