My Struggle with Lichen Sclerosus

I’ve been blogging for a few weeks now, so it seems about right to tell you about my Vagina. I won’t include pictures though, we’re not that close. This is all going to get a little TMI, so if you don’t want to read about diseased genitals, please click away now…NOW!! However, if you have it, or are worried about symptoms, please read on, hopefully you’ll get something from my story.

Lichen Sclerosus is a condition that generally affects the skin around the genitals of women who have been through the menopause, however in can affect men, young women, and other areas of skin. It basically changes the texture and appearance of patches of skin, they become thick, hard and white, it can be incredibly itchy and get very sore. It’s believed to be an autoimmune disease, as a lot of people that have it, also have other autoimmune diseases. See the NHS website if you want more scientific information.

Mine isn’t that bad, I have of course consulted Doctor Google and his images, and comparatively, mine really isn’t that bad. My struggle has been with getting a diagnosis.

It all started when I was about 18. I had an itch. Being 18, and living with my dad, I did what anyone would do, scratched it to death and told no one. It lasted for a few weeks, then healed on its own, to be honest I think I just assumed it was thrush and was too embarrassed to do anything about it, I didn’t even ask anyone. After this patch had stopped itching, and the soreness I’d caused scratching had healed, it left a patch of hard white skin, about 1 cm long. I thought this was scarring, and my own fault for scratching so much.

Then throughout the years, I just thought I was quite sensitive, and got thrush a lot, outbreaks always appeared when I changed shower gels or washing powder, so I treated it for thrush, and it always went away.

Many people saw my vagina over the next 10 years, The Nurse that did my smears, the Doctor I went to when I kept getting thrush while pregnant, the midwife that delivered The Boy, the midwife that checked my stitches afterwards, the Doctor that fitted my coil…a few men, no one ever mentioned that there were more of these white patches. I guess everyone assumed I knew, but they were too far back for me to really see, and even the doctor upon hearing I had itchy bits, agreed it was thrush and treated that.

It wasn’t until I had The Girl, and I got upset, and made a fuss, that I finally got to see a gynecologist. But it still wasn’t until I got a bit angry with him, that I got some answers.

I’ve had episiotomies with both kids, which now I realise I probably needed because my skin isn’t as stretchy as it should be. After The Boy was born, within a few days’ things felt fine. The Girl was different. It seemed to be healing well straight after, then on day three we were in ASDA when I quite desperately needed a poo (as if it wasn’t TMI already), so off to the toilet I went. Where my stitches split open, and I thought I was going to bleed to death.

My midwife was coming that day anyway, so I waited and asked her to check. She said the stitches had split, but it was healing well, just a little “gape” (I hate that word with any reference to my lady parts!) but it would be fine, and to just keep an eye out for infections.

Two days later a different midwife came to check on us, I asked her to have a look, because I was in a lot of pain, and suddenly it was absolute agony to poo, which it hadn’t been before then, and my episiotomy hadn’t been very big, so I couldn’t understand why my bum hurt. Again, she said it looked fine, but sent me off to get some antibiotics just to make sure I didn’t get an infection.

Over the next month, I just put up with the pain, we tried to have sex, but it hurt far too much, and I cried on the toilet every time I went for a poo. I started to think maybe this was normal, that I’d just healed incredibly well the first time, it was meant to hurt this much, maybe my bum hurt because I’d got piles, I’d heard this happened sometimes, so I went to get a cream. Safe to say it made no difference. After about five weeks I braved having a feel. I cried my eyes out, it felt awful, this “tiny gape” they’d been talking about was enormous, I could fit my finger in it, it felt a bit like there was a big flap of skin hanging off. Hunky Husband told me it probably felt a lot worse than it was, like when there’s something wrong in your mouth, somehow your tongue magnifies it by 900%, he offered to look, but I just couldn’t face letting him. So I took a mirror into the bathroom the next morning. I sat sobbing on the bathroom floor for hours. It was disgusting, all the skin was white, there were bits of it where there shouldn’t be, holes where there shouldn’t be, I was never going to have sex again. I had been butchered.

At six weeks’ post birth, I went for my check up at the doctors. I cried at her, told her I felt mutilated, it was agony, my bum still hurt, it just wasn’t right. She told me it was normal. And gave me some more antibiotics. Hunky Husband keep telling me it must not be that bad, it must be normal or they’d say something. To just give it more time, he didn’t mind waiting, and he wouldn’t care if it did look a bit different. I just kept locking myself in the bathroom, crying and screaming about mutilation. Over the next month I got into the habit of checking it every Thursday night in the bath, it didn’t ever get any better, I cried every time. Somehow doctors telling me it was normal just made me more upset. I knew something wasn’t right, and them not agreeing just meant nothing would be done.

At 12 weeks I decided I’d given it long enough, and rang my GPs. They have this system where you have to tell the receptionist what’s wrong, then they tell the doctor, who decides how important you are and phones you back with an appointment. Now sometimes i think this system works really well. When I rang to tell them I was pregnant for example, I didn’t have to waste time with an appointment they just referred me straight to the midwife, who rang me back. On this occasion however it meant me crying at a receptionist about mutilated vaginas and how I couldn’t poo.

Later that day I went in, and for the first time had a proper examination, I screamed in pain when she touched me, and finally someone believed that this wasn’t right. She said she thought I might have an abscess, inside my vagina, which was putting pressure on the scar tissue, so it wasn’t healing, but also on my anus, she gave me a different antibiotic, and referred me to a gynecologist.

I was really worried, but immensely relieved that something was finally happening. They managed to fit me in a week later. So off I went to see the most useless consultant ever. I went home feeling worse than ever.

He didn’t speak to me at all. No history, nothing. A nurse told me to take my pants off and lie down, he walked in to the room, pushed his fingers inside me and said “does this hurt?” I tried to explain that no, the inside didn’t really hurt at all, just the outside, but he didn’t really seem to be listening, he just kept asking if it itched, and didn’t seem to believe me when I said no. Now I’m not 18 anymore, I was at the time 29, and as I say, many people have seen my bits, I’ve had 2 babies, I don’t get embarrassed about it anymore, if it itched id have had no trouble saying so.

But I was wrong. It had itched. I just didn’t realise (because he didn’t tell me) what he was asking about. I thought I was there about my episiotomy scar not healing properly, and I’d had no itching since the birth. But I had had itchy outbreaks over the last 10 years.

He prescribed me a cream to use every night for 8 weeks. Didn’t tell me what it was for, where to use it, what was wrong with me. So I googled it, and found Lichen Sclorosus. I had all the symptoms, I’d had them for years, Hunky Husband read it and said “oh yeah, you’ve definitely got that”. It wasn’t that my scar wasn’t healing, it was that I was having a LS flair up. It suddenly all made so much sense.

I went back for another follow up check 12 weeks later, he said it looked fine (I doubt he’d have that opinion if his genitals were covered in thick white patches), and I needed to keep using the cream once a week, for ever, and to go to my GP if anything changed. At which point I said “but what is it? What’s wrong with me?” he replied “Lichen Sclerosus” and I said “yes I know, I googled it”

It can be quite bad; we’re talking vagina closing up. Mine is very mild, but can still be painful when we have sex, and does look a bit funny. I suppose my moral is, if you know something isn’t right, don’t cry on the bathroom floor, make a fuss, you know your own body, and if it itches, don’t just assume that if it’s not an STI (which I was fairly confident mine wasn’t) it can only be thrush, there are other options.

I’ll go back to the recipes tomorrow!

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