 April 2016 seems like just yesterday when my mum came into my room to tell me the news that every person dreads. My mum has Vulva Cancer. I couldn’t even get any words out before i bursted out crying, i didn’t even know what Vulva Cancer was!
The next 16 months consisted of 58 sessions of radiotherapy, 4 surgeries and countless overnight stays at hospital including being alone in hospital on new years night. I knew she was hiding her true pain from us so we didn’t worry about her, i just wished i could swap places with her so she didn’t have to go through her worst nightmare. Despite thankfully being cancer free since July 2017, everyday is still a struggle with the after affects of the cancer, radiotherapy and the surgeries...she is in pain every single day yet she blows my mind with her strength to go to work and continue life as normal, but this is her new normal now. My mum would never be in this position in the first place if the doctors didn’t keep misdiagnosing her Lichen Sclerosus for decades from when she was a teenager because no one is educated enough on such a dangerous disease! I am beyond proud of her as after all she has been through, she still goes out of her way to help others in a similar position to herself by running a facebook and twitter page to raiseawareness with over 1,000 followers (many of which message her privately for help from all over the world), having countless articles and blogs on websites and local magazines to help raise as much awareness as she can of this life changing disease, also working with the Eve Appeal and Macmillan. One of her awareness videos has over 40K views and lots more up to 20K! I know she has already changed and helped save so many women’s lives and also made many friends for life on this journey! She really is making a differencein this world. Her strength and bravery of fighting this battle is incredible and I am truly lost for words of how proud i am of her, she is my role model and she deserves the world and more!
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 Around April this year (2019) I began to experience itchiness around my vulva and as the month progressed I started to Google what might be wrong with me and by the end of May, it was affecting me too much to ignore, the itching wasn't getting better and I kept getting cuts too. I suspected that I had LS and went to the GP who had a look and said that she had seen a lot of cases of LS and this definitely wasn't it. She said that at my age, women can often get dry down there and that the white patches I could see were sweat glands. She said that I should avoid using any soaps, wear cotton underwear and prescribed me a moisturiser to use to wash with and as a moisturiser. I went away feeling quite relieved and over the next few days I persevered with the moisturiser. I was still itching really badly by now so I went back. She reassured me that it was definitely just really dry skin similar to eczema and to continue to use the moisturiser. She did a blood test too to see if I was still ovulating to rule out anything menopause related (having had a hysterectomy I didn't know for sure although I still get ovulation pain), I am!
Off I went and spent the first half of June really persevering with using the moisturiser but by the 3rd week I was in agony and when I looked down there things were not right at all everywhere was white, swollen and weepy. I went back to the GP and she said I had thrush (it is very common to be misdiagnosed with thrush when you have LS). So off I went, reassured that I had thrush and a weeks treatment would see me feeling a lot better. At that time I self diagnosed myself with piles too as I had also got very itchy in that area too. I recognised the symptoms or so I thought having had them through my pregnancies. That week I was treating the thrush at the front and the piles at the back. Little did I know that they were both part of the same disease. By the end of that week I was a complete mess, emotionally and physically! I wasn't being the wife and mum I wanted to be and was struggling to focus on much else. I went back and saw a different GP in the practice and she took a look and told me I had LS. The very condition I was adamantly told a few weeks early that I definitely didn't have..... Dealing with this has been a massive massive struggle and as I get used to a new routine of having to use steroid twice a day and constantly moisturise, I have struggled to come to terms with the impact this is having on me and my family. Also in play is the fact that as an autistic woman, changes to my routine and sensory overload have been massive to deal with too. There is still a long way to go to get my LS into remission but things are slowly improving. So, about LS! What is Lichen Sclerosus? Lichen sclerosus (LS) is a not very well recognised chronic inflammatory skin disorder, which mainly affects the genitals, especially the vulval and peri-anal areas. Although it is considered a condition that mainly affects mature women, there are women of all ages with LS. Men can have the disorder and this affects the penis and sometimes the anal area. Children can also suffer from LS and it can sometimes affect other areas of the body. The symptoms include: Chronic itching and soreness of the vulval area with pain. Splitting of the vulval skin, causing stinging and pain. Inflammation and sometimes swelling. Splitting and bleeding of the skin around the anal opening when passing bowel motions, causing pain and discomfort. Increased susceptibility to infection and thrush. “Shrinking” (atrophy) of the vulva area, change in shape and size of the area; this may cause urination difficulties and sexual problems. Changes in the appearance of affected skin. Pain and difficulties with sexual intercourse caused by narrowing of the vaginal opening, fusion of the labia, clitoral hood and urethra. Blisters and ulceration (considered to be uncommon). LS does not extend into the vagina. There is a small risk, estimated at between 3 to 5 percent of cancer of the vulva in mature women. Bruising can occur in the skin. It is important to say that not everyone will experience all of the above symptoms;" What Is the treatment? Lichen sclerosus remains a mystery condition for which there is no cure. However, symptoms may be alleviated by use of steroid creams. A very successful treatment regime regularly used in the UK, is a three-month course of topical steroid used twice daily. After this initial course of treatment, a specialist may suggest using your prescription twice a week as a long term treatment. In some cases, soreness can still persist with no apparent remedy. Although symptoms may improve or disappear, the condition often returns." The most frightening thing of all is that 1 in 20 people will go on to develop Vulva cancer if the LS is left untreated! As you can imagine, this is a huge diagnosis to get ones head round and now, 4 weeks into the agressive treatment plan, I am still very new to it all. You might be wondering, if you have read this far, why on earth I am sharing this and in so much detail. Well the answer is simple. Firstly, although I feel embarrassed, and yes, humiliation at the fact I have this disease I know I shouldn't and women should know about this. Secondly, during all this happening, I have realised something. Women are well aware now, that they should get regular smears and they should check their breasts but the subject of vulva health still is shrouded in whispers. It shouldn't be. I realised that I had no idea what my normal was down there. I didn't know what my own genitals looked like. I think all girls and women should be getting a good look once or twice a month and really getting to know what's what. I am no expert, but I should have been an expert in my own body. All of us should be experts in our own bodies so please, if you have read this far and you are a female. Start today, get a hand mirror, throw a towel down on the bed and have a good check, get to know all the folds, creases, colours, textures and hopefully you won't wait longer than you need to when you notice problems before the symptoms get bad. Thirdly, this disease is really uncommon and many women are getting diagnosed with thrush sometimes several times before LS is finally picked up. So, if you frequently get thrush and never seem to clear up between treatment, question if it could be lichen sclerosus. ...and finally, if you have got this far, thank you! I really mean that! Thank you for reading about my experience. Please don't think I have shared this for sympathy or for any self serving reasons because if I was truly being self serving I wouldn't want anyone to know about this. I am sharing to get the message out there for all women and girls!!!" |
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