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.
1 Comment
Jackie
8/9/2020 01:55:15
When I was 21, I was attending college in lower Manhattan 3 blocks from the World Trade Center. After the 9/11 attacks we were told it was safe to return to school in 2 weeks. The smell in the air was very bad and the air quality was obviously very bad. A few months later I started to get painful, thin lacy white sores on my tongue and red itchy bumps on my wrists. I also got a large purple colored patch that was severely itchy on my lower leg. Two different doctors that I saw admitted that they did not know what it was that I had and referred me to a dermatologist. He gave me a steroid ointment but never gave me a diagnosis. One day I couldn't take the itching and went to the emergency room where I was told that I had lichen planus. I went home with an ointment and that was it. A friend of mine who was very knowledgeable in health and health food advised me to eat better, he said what I had was an autoimmune disease. I thought that I was eating pretty good but my diet consisted mostly of tuna fish, oysters, and shark. It sounds weird but I love fish and I lived close to City Island which is known for its seafood markets. I researched eating better and decided to become vegan. I stopped eating fish and any type of meat. Without even noticing, the sores on my tongue, wrists, and legs went away. I remained vegan for 10 years. In those ten years, I had no rashes or tongue sores.Then one day I decided to start eating fish again. I started eating tuna regularly along with sardines, salmon and all different kinds of fish. In the same year, I started getting anal fissures which I thought was due to me not exercising enough or being dehydrated. Then I started to get different kinds of symptoms like urinary tract infection symptoms, burning, a little itching on and off for a few years now. I tried different yeast infection medicines that seemed to work. One day I looked at my vagina and it was white and my clitoris was very small. I googled my symptoms and found lichen sclerosus. Immediately I remembered my lichen planus diagnosis years ago. I went to a doctor and she gave me a steroid and I am waiting to see a gynecologist. I've been researching these diseases and read that mercury exposure could lead to lichen planus. I do have metal fillings in my mouth and also was exposed to high levels of mercury after the 9/11 attacks which is when my lichen planus symptoms started. Now. I have lichen sclerosus. I'm wondering if Mercury in fish that I've been eating has brought on this disease. I'm 41 years old and still menstruating. My symptoms started at 36 exactly when i started eating fish again after so many years. For now, I've stopped eating any fish. Sorry for the long post, I just wanted to share this in case there is anything linking Mercury exposure to this disease.
Reply
Leave a Reply. |
AuthorWrite something about yourself. No need to be fancy, just an overview. Archives
August 2023
Categories |