 I was diagnosed a couple of years ago, albeit I allegedly had it for years before but was treated for bad thrush etc. I was prescribed Canesten cream, which I used virtually all the time.
I am nearly 70 now and have not had sex with my husband for many years. I used to joke with my friends that if I didn’t have to wee, it would close up. Anyway, one day whilst wiping myself I couldn’t feel anything, it felt “closed”. I lay on the bed and felt the “closure “ I tried to pull it apart but the pain was indescribable and blood everywhere. I managed to get an appointment with a locum who immediately diagnosed me with LS. Because of the length of time without diagnosis, she fast tracked me to oncology gynecologist. He was certain there was no cancer and requested my GP to refer me to Ls specialist. Trying to see a consultant was a nightmare and i was pushed from pillar to post. I eventually paid privately to be seen by the consult indicated by the gynacologist. She runs a joint Dermatology/Gynecology clinic weekly at my local hospital but “The Board” refused me access due to funding. After a year of fighting I was eventually referred through the Gynecology department. Unfortunately the specialist surgeon left in September and i have to wait until January to see another doctor. I don’t think she is an LS specialist, if not I shall just have to pay privately again. Being a pensioner, this goes against the grain. Through the joint clinic, i was prescribed high doses of amitriptyline and then prednisolone. Unfortunately I couldn’t tolerate these high doses so came off amitriptyline and weaned myself down to 5mg of prednisolone. I was also prescribed Nerisone ointment to use daily. Unfortunately the manufacturers are unable to meet demand. I have just enough left to see me through to my January appointment! None of the GPs in my surgery had heard of LS and none of the nurses were aware of it either. None of my friends had heard of it either. What a sorry state of affairs.
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 At around 13 years of age I started bleeding from my back passage. Not a lot, just a sting and then blood on the toilet paper, but I knew this wasn’t normal and I was old enough to know that it could be something serious like cancer. I hid it for a while, as you do when you’re young and scared, but eventually told someone and a few months later I ended up at my local doctor’s surgery. They examined me, and told my mum there seemed to be nothing really wrong, and I should simply increase the fibre in my diet and the bleeding - and itching - was put down to haemorrhoids.
If that doctor had known more, my Lichen Sclerosis might have been diagnosed then. But they didn’t, and nor did I. The thing is, when you itch a lot of the time, and it starts about the time that your body is changing in all sorts of other ways, you just assume that’s a normal feature of puberty, right? If it got really bad, I assumed it was thrush and treated it accordingly. The flare up would ease and I’d go back to long-term low-level itching. I didn’t talk about, so the fact that no-one else talked about it seemed perfectly normal. And so it went, for about 15 years, until one day I woke up and down below was smelly, itchy and sore and something was quite clearly Not Right. I took myself off to the emergency sexual health clinic, and waited with many others, who were worried about pregnancies, STIs and who knows what else. I was eventually seen by a wonderful man whose name I have since forgotten, which is something I regret very much. He told me there were three different problems going on at once: bacterial vaginosis, thrush and something called Lichen Sclerosis. He explained that it was rare (something I’ve come to doubt), may eventually lead to cancer (that childhood fear again) but easily treatable. He furnished me with a suite of medicines to treat all three conditions and in doing so, changed my life. In the following weeks, the steroid cream he gave me began to work, and for the first time since I was a child I realised that people didn’t just itch all the time. It was a revelation. I returned to that doctor for a routine follow up and he told me more about LS. He also explained that the area around my labia, including my clitoris, had fused in various places. I wasn’t a terrible case, but the untreated years had taken their toll. He told me at that appointment that he had been offered a new job in London, and I never saw him again. In the intervening years (I am now 40) I learned that I couldn’t do without the steroid ointment. No matter how rigidly I followed the recommended regimen, anything more than a week off the steroid - even after intensive treatment for months - was enough for the itch to return. I learned that some emollient creams and other meds have ingredients that cause a flare-up for me, even though they suit other LS sufferers just fine. I learned that many health professionals don’t recognise LS, and that people who have been treating ‘chronic thrush’ for years probably don’t have thrush and maybe never have. I discovered that my best friend developed the disease after giving birth, and that it is likely much more common that the literature suggests; it’s just not so common for people to be diagnosed. If I’d spoken about my issues more openly, perhaps she’d have been diagnosed sooner. At the moment, I have my specialists’ blessing to continue to treat my LS as I see fit - I am now the expert on my own condition, which feels fair after living with it for longer than most professionals have been qualified. It remains under control as long as I treat it regularly with steroid ointment, moisturise properly and don’t allow fragranced products to come in contact with my nether regions. I’ve started using a menstrual cup, which has definitely helped - the silicone is skin-friendly, and the manipulation it requires to insert and remove means I’ve both stretched out some of the fused areas and felt more confident that I will stretch without tearing now. I contracted genital herpes via my husband’s cold sore (yay!) and learned that we LS sufferers are more prone to it than most. This time last year I finally did get that cancer diagnosis I feared as a child, but it was cervical cancer, and not related to my LS. It was caught during a routine smear test and I never knew I had it - it was excised in the biopsy to find out what the abnormal cells were, and I treasure the letter telling me there is no residual sign of the cancer. I spent so long dreading my smears, especially because the fusing left me with tightness and a fear of tearing, but I’m glad I kept up with the appointments. The future seems bright to me. I am told that the concern about the steroid ointment thinning our skin is based more on statistical possibility rather being a definite outcome. It may happen, but the warning on the label is there to protect the manufacturers rather than as a ‘this will definitely happen’ prediction. I am well-looked after by my healthcare providers, have stopped the fusing, and begun to reverse its effects by stretching my skin, and stay diligent about fragranced products. I remain very grateful to that unknown doctor who diagnosed me 12 years ago. |
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August 2023
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