My journey with Lichen Sclerosus started some time during my early years. My first memory would be that of a 4 yr old me in lower school screaming hysterically in a classroom due to experiencing a severe burning pain in my genital area. I was never taken to a Dr about this, I guess it was supposed at the time that I was suffering from thrush or some fungal infection. My memory of this time is very hazy due to being so young and it being 31 years ago. I remember odd memories of feeling pain or severe itching but I guess I was too young to question why.
Flash forward approximately 11 years to being a 15 year old girl with an interest in having a boyfriend like all my friends did, as we do at that age and never really having one because somewhere inside I knew something wasn't quite right.Where some of my friends were starting a journey on the sexual intercourse path, I was petrified of allowing anyone near me in that manner. I figured it was because I was scared of the unknown and it was normal to have these feelings of being nervous, after all we all get the jitters venturing into some new unknown territory. I even tried to use a tampon thinking that would show me there was nothing to be afraid of. I was wrong! The tampon got stuck where there was no lubrication and the pain was so bad I was on the verge of being physically sick. The only way to release it was to try and get it wet and pull it out as fast as I could. This plan didn't work! I was there sat on a toilet for nearly 2 hours in tears and in pain trying to get this tampon out. This fear got me through my last year in school. But it didnt end there. By the time I was 16 and starting work part time and studying my A Levels, there were times the pain was so unbearable I would have to go into a toilet cubicle to try and calm myself down and stop the tears. Going to the toilet was more unbearable and pretty much every time I would have to try and urinate whilst holding toilet tissue on my vulva. Even urinating took me at least 30 mins to complete with full on tears and sobbing. I continued to make excuses so as to avoid having a relationship or intercourse. I remember thinking 'I could be a career girl instead' or 'maybe when I'm married, I'll tell them I wont have sex until I was married, maybe that would work' knowing full well I wouldn't be able to have sex even after marriage, that marriage wasnt some miracle cure and that I wouldn't get better by vowing to spend the rest of my life with someone. So I continued to avoid relationships and just flirted with boys as it at least made me feel more 'normal' and more feminine.
This continued until I was 22 years old when I finally entered into a relationship and attempted to have sex for the first time. I can honestly say that no amount of lubrication was getting him inside me anytime soon. My vulva was burning, or at least it felt that way and thats without full penetration. We sat and talked about what was going on and I came clean. He talked me into seeing my GP about it and that was the end of that relationship.
I did as I agreed and went to see my GP. He took a look and told me to have a smear test to see if anything showed up. So a few days later I was in with the nurse when she asked a question that floored me and has haunted me ever since..."were you abused as a child? You have so much bruising and your so narrow I cant get even the smallest speculum in" If there was ever a time for the ground to swallow me and never let me see the light of day again it was that moment! I went home and sobbed my heart out when the realization kicked in that there was something medically wrong, that I would never be able to have sexual intercourse and therefore never have a child that I had dreamed about for as long as I could remember. I had never felt like more of a freak in my entire life.
I went back to my GP who referred me to Gynaecology at Northampton General Hospital.
My consultant was Mr MCcullough. As soon as he did the examination he said "I may know what it is but your very young so we will have to biopsy it", which he did. Within a few days I received the call with a definite diagnosis of Lichen Sclerosus. I was informed they didnt know what caused it, that it only affected women after menopause and that there was no cure for it. Also during that phone call I was informed that he suspects I may have pre cancer changes and that he needs me to have another biopsy to confirm if this is the case. Due to my symptoms being so severe he took me in under a General anaesthetic to have a closer look and take the biopsy and this way it wouldnt be too uncomfortable for me. Luckily the biopsy showed no pre cancer cells but those days of waiting were pure hell where I could have easily given up on life and admitted defeat. Feeling this was the only way to be free of a lifetime of pain, misery and shattered dreams. He got me back in within days for a discussion on what to do next. This was when he told me he didnt know enough about it and would find it hard to treat me. He put me on betnovate steroid cream which burned every time to the point I called Normed for advice. They informed me I may be putting too much on but they werent familiar with Lichen Sclerosus so to call my Gynaecologist for advice.
I was referred to the Hammersmith Hospital in London by Mr MCcullough where I was under the care of Mr Edmunds, Ms Queck and Mrs Rose. They agreed that I would need to be admitted for 3 days to start a Dialator treatment to help widen the opening of my vagina. At this point I was told I was the second girl in the UK to be diagnosed with Lichen Sclerosus so young. It was practically unheard of back then to have this condition pre menopause.
On the first day I was introduced to the dialators and well they are basically 8 bits of hard plastic supposedly replicating a penis starting from a size so small it was the size of a little finger gradually going up to the size of a general penis. The idea was to start with the small size and work my way through until I reached size 8 at which point I would be able to have a (quote) 'healthy sex life'. So this being said I was laid back on a hospital bed watching Mrs Rose apply some KY Jelly lubricant to the smallest dialator to then have to endure her inserting the dialator into me...Well I nearly took out the roof because the pain was so bad and once she finally brought it back out I couldnt help but notice there was blood on it where it had literaly ripped my vagina opening..well open. She then applied some betnovate to the area and came back an hour later with the second size, marginally bigger than the first and once again inserted it, she then proceeded to tell me off for clenching my pelvic floor muscles as this is' what was making it sore'. Once again there was blood on the dialator and by this point I was in the toilet gagging trying not to be physically sick from the pain. An hour later she returned with the 3rd size ready to do it all again. I cried! before she even got the lubricant on it I was in tears begging her not to use that size. She didnt listen! At this point she decided that was enough for that day. I could barely walk, Urinating was hell on earth and even just putting cotton knickers on was excrutiating.
On the second day she returned with the size 3 dialator just for starters and by lunchtime she was rearing to go with a size 5!!! A size 5?? the first size was excrutiating enough and had me bleeding and here she was with a size 5. So it was at this point I called my consultant back in Northampton and explained through floods of tears what she was doing. To say he was horrified was an understatement and within an hour I was being discharged with an apology (I also found out years later from my closest friend that they used my story from Hammersmith Hospital to warn all ladies to never let anyone insert the dialators but themselves, a hard lesson learnt for all involved).
This is when he referred me to Ms Chew in Endoscopy clinic at Northampton General Hospital. She was an Oncologist with little knowledge of Lichen Sclerosus and she took the approach to try everything, so I became her Guinea pig for the next few years to try to find something that would help long term. She instantly changed the Betnovate steroid cream for Dermovate which was so much better and talked me through reducing the frequency from twice daily to once a month over the course of the next few months. I continued with the dialators at my own pace. During the 6 or so years I was under her consultancy we tried a proceedure to release my clitoral hood from being buried by skin 3 times, The results lasted less than a year. I also had 2 operations with her and a cosmetic sergeon to take skin graphs and attach the new skin to the areas affected by the Lichen Sclerosus. The first was from my groin which became severely infected and the second from my lower abdomen which was ok. The results lasted a lot longer and to this day I havant had to have another proceedure to unbury my clitoris, thats not to say that it was a success, far from it in fact but at least I wasnt having to be operated on every 6 months to a year. Also during my time with her I had 2 further biopsies for pre cancer cells and was also diagnosed with CIN3 cells on my cervix aswell as VIN3 cells on my Vagina wall. I was finally, after approximately 3 years able to have sexual intercourse. Was it enjoyable? NO, was it a healthy sex life as promised? NO. It was agonising with the pain lasting for several months. This takes a massive strain on any new relationship when you can have sex once then have to wait 3 months before you can have sex one more time before another 3 month wait. Did it really take 3 months to heal from one inercourse session? YES. I ripped, tore, bled and burned for those months following. You see the thing they dont tell you about Lichen Sclerosus is that the skin becomes so thin that it does tear easily, I mean to the point that wiping yourself with tissue after going for a wee tears you open again once healing starts so you have to wait again for that tear to start healing whilst being so over cautious not to re tear it and thus having to wait even longer. Now comes the best part, at no point was there ever an orgasm! I thought it was due to the pain during intercourse until I dared to get a mirror and take a look. Thats when I realized I had no labia minora and barely any clitoris left. I was bruised, red and wrinkly. I even endure countless painful intercourse sessions just to get pregnant before I gave up completely, I was desperate. I did fall pregnant and had a beautiful healthy baby girl 5 years ago. I didnt have a choice regarding her birth. I was booked in for a C section as they didnt know what damage would be done by me having a vaginal birth. It would literally be a massacre to myself to even try. You think to yourself, well maybe they could build me a new vulva with a working clitoris thats not so tight and fragile that it tears easily, I mean they can make a male female and build them a vagina, why not me? the answer, so I'm told is because the new skin will also become home to Lichen Sclerosus and therefore I would be no better off.
So to conclude this journey. I am now 35 years old, a single mum with no interest in having a relationship at all due to still tearing and bleeding during intercourse, thankful for having my daughter but secretly gutted that I cant give her the brother or sister she wants and that once upon a time I wanted, Once upon a time way back before i Knew Lichen sclerosus even existed or that I wasnt 'Normal'. I've had counselling, but she had never heard of it and I had to inform her of what it was and the effects both physically and mentally. I seem more interested in finding a better treatment or even a cure than the majority of the medical profession. But then why would they want to? they don't live day after day with the unbearable pain and unbearable itching (mostly at the same time which is worse). These medical professionals can go home to their husband/wife/partner and enjoy that healthy sex life i've been told exists, the one I will never experience. And the sad truth is, they dont even know if its hereditary!! My life now revolves around containing a 'flare up' as best I can with a cream steroid, checking for changes that could be cancer or pre cancer cells and being obsessed with making sure my 5 year old daughter isnt showing early signs of this horrific, life changing condition. Also add to that running a UK based support group on facebook to help other ladies in the darkest early stages of being diagnosed and trying to get more women to check themselves for signs of Lichen Sclerosus.
I wouldnt wish Lichen Sclerosus on my worst enemy.
Will they find a cure? Not the way things are going. The only people who care are those of us who suffer and know first hand how bad this condition truly is! I was involved in a research project, but it fell through due to lack of funding. This is the other problem we face every day. No research means no hope of ever getting better treatment or a cure! A sad but true fact about Lichen Sclerosus. At best we can hope for a flare up free life, but that will never happen. To know that children as young as 2 years old are diagnosed is heartbreaking. Maybe it will go during puberty, maybe it wont. Mine didn't. Should we really take the chance?
Thank you for taking the time to read my story. I hope at best it will inspire someone to try and make a change if not for the adults but for the children who are on a road to the life I and many other women and men have lived growing up with Lichen Sclerosus.
I came out of the doctors room in shock! I could have Vulva cancer!
I walked out the surgery to my husband who was waiting in the car with my son, I was trying really hard not to cry. I needed to get home.
I remember feeling sick and holding back the tears so my son didn’t ask what was wrong, he is only 11 and has autism so wouldn’t understand, hell I didn’t understand! I had never heard of vulval cancer , I didn’t even know the outside area was called your Vulva.
I got home and then told my husband what the doctor said, he looked shocked.
I had to wait for a call for an appointment to see a gynaecologist and have a biopsy. I was told it should be within 2 weeks.
That night I went to bed but couldn’t sleep. I started to cry So I went downstairs so no one could hear me especially as my son and daughter didn’t know. I wanted to wait until I knew everything before I told family. I cried so hard I collapsed to the floor in my kitchen and stayed there for a while. I just wanted my mum, but she wasn’t here.
I was sure it was cancer and as I had the symptoms and ulcer nearly a year so thought that it must of spread! I told myself I had weeks maybe months to live.
I came to terms with death quite easy, until I thought about my family, I wouldn’t see my son and daughter grow up, get married or have kids. Help them in life. I then thought back to how I felt when I found out my mum had cancer and what it was like when she died. I realised how scared she must of been and how I felt when I was told.
I didn’t want my kids to go through that.
The next few weeks were a blur! I decided to sort all my stuff out so my daughter and husband didn’t have to.
I packed up most of my stuff in my bedroom and sorted through all my clothes. My poor husband made about 4 trips to the tip.
I took my daughter shopping and brought her lots of things, I nearly brought a couple things for myself then thought what’s the point I won’t be here to use them.
I had my biopsy which was a day before my birthday. Only my husband knew, which was hard to act normal around others. I thought that would be my last birthday.
I arranged my funeral in my head, found flowers and a coffin I liked and saved them on my phone.
I would go for a bath most nights and just sit and cry as that was the place I didn’t hold it all in.
I got my biopsy results of Lichen Sclerosus (again I had never heard that condition before either) and squamous cell carcinoma (Vulva cancer)
I then had to have PET scans and MRI and wait for the results to see if it had spread. I had convinced myself it had and was having symptoms of bladder and bowel cancer.
The next couple weeks seemed to go so slow but finally got the results that it hadn’t spread and surgery was in 2 weeks time to remove the tumour and sentinel nodes biopsy to test if it had gone to my lymph nodes as scans were unclear in seeing cancer in nodes.
What a relief! It hadn’t spread and was stage 1b. Then the symptoms I was having all went! Surprising what you can imagine and tricks your body.
I had a plan of treatment and was feeling positive and so much better. I now told my 16 year old daughter which was the hardest thing I’ve had to do! She had already lost her nan to cancer.
I decided not to tell my son as he wouldn’t understand and as having autism has no empathy.
I then started to tell the rest of my family and friends.
I wasn’t scared or worried about the Operation just wanted it over.
Surgery went ok but from my scan to operation the tumour grew aggressively so was too close to my bum to get clear margins so had to have radiotherapy to make sure. The lymph node biopsy came back clear.
I stayed in hospital for 5 days and once home I had to lay in bed mostly for 4 weeks as sitting was to painful especially as all my stitches came out so took longer to heal but it was ok.
Once I had healed enough I started 5 weeks of radiotherapy (August 2016) which wasn’t easy. I was tired all the time and had bowel problems and my skin on the inside of my groins started to go red and hot then the skin started to come off and weep. I found walking painful and the journey up to London on the train during the hot weather extremely hard. But I did it!
After a few weeks I went back to work and tried to get back to normal but my scan showed a node was still swollen from a previous scan so they decided in December 2016 to remove more nodes to check. They removed 6 lymph nodes from my left groin and 3 came back cancerous. I was devastated again! It had already been 9 months and I was going to have to have more radiation on both left and right nodes plus my abdomen to make sure.
I spent New Year’s Eve weekend in hospital because I got cellulitis while on holiday and had 2 more Operations on my groin so spent most of January 2017 in hospital because I had many problems getting the infection under control and had to have the groin drain put back in. I then started my second lot of radiotherapy in March 2017.
33 sessions over 8 weeks. I knew what to expect this time and as it was higher up walking this time was much easier. Still having bowel problems and so tired all the time. By the time I had my next scan it had been 16 months of scans and treatment and finally in July 2017 I was given the all clear! In remission, cancer free.
It had spread to my lymph nodes so I beat stage 3 vulval cancer! Yes I was happy and relieved but I had been on autopilot the last 16 months so now it was over? I can get back to normal? No, now I have to deal with the side affects of the surgery’s and the radiation. It put me straight into the menopause, I then had lymphedema confirmed in my legs, pelvis and abdomen. I have nerve damage and pain in my left groin , still have bowel problems and is tired all the time But yes I beat cancer! For now!
I still have Lichen Sclerosus which is the skin condition that caused my cancer and was left untreated for many years as seems I’ve had since a child but numerous times was missed and misdiagnosed as cystitis and thrush multiple times over the years.
I had swobs and blood tests but Lichen Sclerosus was never mentioned.
If a doctor or nurse had recognised the symptoms I would have been diagnosed much earlier and been using the steroid, so I might not have got cancer as there is only a 5% chance of Lichen Sclerosus turning to cancer if the skin is left to thicken, and the cancer would not of had time to spread to stage 3 Cancer. I would not have had to have radiation which caused all my life changing side affects. If I had known about LS and Vulval cancer I would have gone back to the doctors and not given up going.
If I hadn’t seen all the adverts for thrush and vagisil for vaginal itching and thinking this must be normal.
If the nurses that did my smear tests had been trained in LS and vulval cancer.
If midwives had also been trained in LS and Vulval cancer then it would have been diagnosed on one of the multiple times I’ve seen a nurse or midwife.
It’s now been 1 year since I was given the all clear but life hasn’t gone back to normal it never will. I have to find my new normal and accept every new sore or red area or pain that it Could be back! I worry that other symptoms are a different cancer.
Worry every scan they find something. Feels like a ticking time bomb. Worry that my family will get cancer too. The depression and bad days.
I still go for a bath and have a good cry.
The guilt you have for surviving and others don’t.
The anger of so little awareness of both conditions.
Why the medical profession don’t know or misdiagnose.
Just because it is commonly in the older women they dismiss it if you're younger.
So now I’m trying to raise awareness as much as I can especially as Vulval cancer doesn’t have any charity’s of there own or a Awareness day/week of its own or official ribbon or any celebrities to help or have tea party’s.
More awareness and research is needed in LS, VIN ,Vulval and Vaginal cancer.
I don’t want anyone to go through what I have and am still going through.
Nurses and GP’s need training in All these conditions especially those that do smear tests.
Vulva cancer needs it’s own awareness week to make any impact.
More Research is needed
I like to help who ever I can, whether is tips, support or just someone to talk to who is going through the same as you.
We need to use the word Vulva more!
Write something about yourself. No need to be fancy, just an overview.