For two years, since the age of 5, my daughter suffered with:
- itchy pain in her genital area
- sore & raw patches of genital skin
- blood in stools
- stomach cramps
We spent many a night trying to comfort her, whilst she cried, wriggled and asked why it won't stop. Nothing would help, painkillers doesn't stop it, eventually she'd be so exhausted she'd fall asleep. It would last for days.
I'd get calls from school to tell me there had been quite a lot of blood in the toilet & she was upset. Or that she was having bad tummy pains.
We were treated (generally over the phone) for worms, thrush, constipation, given dry skin creams and were referred to the constipation clinic.
💙 This was all misdiagnosis. 💙
One January, after a particularly bad episode, I noticed she had raised, dark, blood like blisters on her genitals. It scared the hell out of me & I made another GP appointment.
This wonderful GP took the time to look back over my daughters medical history and suggested that there's a possibility of Childhood Lichen Sclerosus. We were referred to a specialist.
My daughter was 7 when we finally got the diagnosis, this was two years ago. The specialist said that GPs may only see one or two cases in 10 years in a child and it often gets misdiagnosed. My daughter and I took the GP a present and a card to thank her for taking the time to investigate this further and finally getting where we needed to be.
The specialist said we just caught it in time before it has done too much, long term, damage.
My daughter is now 9. Unfortunately there is no cure and it's a condition which just has to be managed with steroid creams & cuddles. There's a chance it may disappear at puberty. We hope.
She gets flare ups, it's distressing, painkillers don't work, but we know that generally it will improve over a week.
💙 Be aware, look out for the signs, raise awareness 💙
I couldn’t tell you when this journey started for years I had this itch, was treated for thrush with cream and tablets that didn’t help.
Then I had my routine smear and they had to retest as there was a lot of bacteria there so they said I had bacteria vaginosis and put me on antibiotics, I thought great at least now they know what it is and they are treating it.Unfortunately not the itch went and by this stage it was doing my head in and thought I’m just going to have to live with it.
Months and years went on and this itch got worse and then a open sore developed. By this time I was back for my next routine smear the nurse looked and said we must keep an eye on that broken skin you could have eczema and gave me a mild steroid cream which didn’t help much. Another few months passed and I decided back to the doc to see about this open sore. Well the doc didn’t even look and said could be due to starting menopause and gave me HRT suppositories, had my answer yes this will be the end of it. This was coming up to Christmas 2017 and had been going on for over 5 or 6 years. I used the suppositories all through Xmas and repeated my prescription in January but it wasn’t helping it was actually getting worse. It hurt to sit it hurt when I walked and the itch was so intense it kept me awake at night. February came and one day I was sitting in work nearly crying in pain got up rang my doctor to make an appointment and told my supervisor I was going. Saw the doc that afternoon she gave me an examination and said I needed to be referred straight away for a biopsy. Three weeks later I got my appointment to see a gynaecologist he examined me and said didn’t think it was too serious but would biopsy it anyway. Got my date for April for my biopsy after my procedure my gynaecologist came to see me and said didn’t think it was anything sinister and he would see me in a few weeks. Four weeks later I was sitting in my gynecologist office to get my results he said your biopsy came back you have vulval cancer. No words just tears , said we need to bring you in to have a radial vulvectomy this was double dutch to me.
I cried all the way home in the car on my own. Got my phone call three weeks later to come in for my operation had a CT scan the day before my op on Tuesday 5th of June my 48th birthday. Had the op on Wednesday and gynaecologist said all went well they took some of my lymph nodes and he said they looked a bit nobly. Stayed a week in hospital and home to recover told me they would see me back in a month. A week later got a call could I come in to see my gynaecologist today. I knew this wasn’t going to be good news. He told me cancer had spread to my lymph nodes and I would need 25 sessions of radiation. Radiation was a nightmare first two weeks were ok but after that the burn started I could barely walk coming to the end of it. My dad brought me to all 25 session and said he could see me getting slower walking as the days went on. After it was over I had to go back daily to get the burns cleaned and dressed. Went back to work on the first of October thinking I could put it all behind me. But it’s always there in the back of your head I don’t think there is one morning I have woke up and not thought about what If it comes back.
So June this year a year after my surgery I felt a small sore. It’s starting all over again went to check up and needed a biopsy went back for results and they told me there are precancerous cells . This is called VIN Vulva intraepithelial neoplasia. Also told me I hadLichen sclerosus which could of been the start of it all but was never diagnosed.
So as I stand I’m waiting for my next operation and hoping and praying 🙏
I will be 60 years old next January . I was diagnosed with vulval cancer in May 2017 . I struggled to get diagnosed like so many others with this type of cancer . I underwent 9 months of brutal treatment as the cancer had spread to my lymph nodes in both groins. If I had been diagnosed earlier this probably would not have happened . I had chemotherapy , surgery to remove the tumour followed by plastic surgery and radiotherapy.
> Chemotherapy … Now that was tough at the time and I had lots of side effects . The main long term effect for me is what they call Chemo Brain . It’s like an intermittent fog which makes you feel muddled at times .I also feel that my sense of balance was affected . I know I’m getting on in life and sometimes I put it down to an age thing but to be honest I was nowhere near as bad before the chemo . My skin has suffered since chemo also . I got white blotches around my eyes which never went away . My skin is a lot drier too. The veins in my arm that they used are lumpy and useless now and I have a large lump on the inside of my elbow which had to be investigated last year . They did an ultrasound and said it was nothing to worry about just a side effect of chemo .
> Surgery …My tumour was removed from around my clitoris . The plastic surgeon made a flap to close the wound . I am disfigured ,but to be honest I don’t think it looks too bad now . I lost my entire clitoris and surrounding area. The whole area has remained numb since the surgery . Obviously I have no sexual pleasure whatsoever now . No orgasms for me . I have been married for 36 years and and my husband and I always enjoyed love making . Now we have had to adjust to a new situation of no sex at all . What would be the point ? I feel really sorry for my husband . We have had to find new ways for physical pleasure . Never was I given counselling or was sex talked about with the medical profession . I was issued with hideous hard plastic vaginal dilators and that was it . I did try them and then bought rubber ones that were better but I hated them and it was sore, so I gave up . I was only using them in case I needed examined vaginally in the future .
> Also when I pee now about 4 jets of urine squirts out all over the place and the whole area gets soaked . No matter how much I wipe myself after peeing when I walk away from the toilet a trickle of urine runs down my leg…….lovely NOT .
> One of my groin scars from the lymph node removal (about 5 inches long) healed quite tightly and constantly pulls . It causes a pouch of lymphoedema to swell up over it like a lump . I gently massage it after washing but nothing really helps .
> I don’t have pain from my surgery site as it is all numb . When I check things with a mirror I can’t find my urethra due to scarring and that worries me sometimes in case I need catheterised .
> Radiotherapy … Well this is the treatment that really threw me . I wasn’t informed of all the side effects from this ! I suffered severe burns on pubic area , vulva and inner thighs . I was in hospital on bed rest for 2 weeks . I didn’t know that you keep cooking after the radiotherapy stops . Like taking food out of a microwave !! Slowly the skin healed but has left unsightly red blotches and dark patches . It is also paper thin and prone to breaking down . It is very hard to ever wear underwear as everything I’ve tried can cause the skin to break down . I have spent a fortune on trying different pants and a huge amount of time scrolling the internet for suitable ones to no avail .
> I had pretty bad bowel issues for the year following radiotherapy which I believe is common with pelvic radiotherapy . The worst time was the morning when I had urgency and sometimes didn’t make it to the toilet in time ….YUCK ! Mostly diarrhoea . Fortunately as time went on things have settled down . I take probiotics .
> I have had 2 episodes of cellulitis following my treatment . The last one was scary and serious and I actually thought I may die( and so did my husband ) I was in hospital for 10 days in an isolation room as they found Strep B in my blood . All the intravenous antibiotics weren’t working but finally they hit on the right one ….phew ! I am now on life long Penicillin V which I take daily . Long term antibiotics can damage organs so I have to have 6 monthly blood checks ( not from my chemo arm ! )
> Mental Effect …. All of the above is physical effects of my cancer treatment but by far the most challenging for me is the mental trauma that cancer diagnosis and treatment throws at you . Firstly you stagger out of the consulting room after initial diagnosis in a total daze . Totally unaware of what lies ahead of you . All through the treatment you are focused …. checking appointment dates and times , taking medication on time , reading up on stuff and working out what to ask at your next appointment .
> When treatment finishes all that is gone and you have to adjust to the NEW YOU . Your family and friends say you look good and congratulate you on getting through cancer but really little do they know how much you have changed . I feel like a totally different person now and keep it all to myself as I don’t want to upset my family . I already feel so guilty for bringing this dark cloud to everyone . I wonder when it may return and when I will die . I went for counselling at the Maggie Centre as I was anxious and depressed suffering awful morbid thoughts . I am now more accepting of what’s gone on and try to stay positive . My therapy is enjoying nature , my dog walks and my beautiful grandchildren . This cancer journey has certainly been a mad rollercoaster that’s for sure .
Sitting there on the hard plastic chair, my hands clasped tightly in my lap, I asked the consultant to repeat herself.
‘The doctor you saw on your last visit was correct. You have Lichen Sclerosus.’
Nodding, I listened as she outlined the disease. Of course, after my last visit here to the GUM Clinic when the doctor had hinted that the discolouration ‘down there’ may be Lichen Sclerosus, I had googled it. Everyone does, don’t they?
Now, sat in the small, stark room I tried to focus on what she was saying. Her words muddled with the research I had gleaned on the internet. I needed to listen, I needed to get the real facts. After all, everyone knows that Google churns out the worst case scenario. Everyone knows that you can Google a papercut only to be told you have a fifty percent chance of your arm needing to be amputated. It’s a well-known fact that that’s how the websites get their hits, by sensationalising the normal. This Lichen Sclerosus thing can’t be as bad as all that. Some of the things I’d been reading… Shaking my head, I tried to shut the thoughts away.
‘If you look here.’
Leaning forward, my left foot tapping on the floor, I peered at the photograph on the camera. Not in a million years did I ever think I’d be asked to gaze at a photo of my own vulva.
‘We’ll keep this photo as a base and then when you come back we’ll have something to compare any changes to. Of course, you can ask your family doctor to refer you to the hospital, if you’d rather?’
Shaking my head, I swallowed the bile stinging the back of my throat. How could I go to my family doctor and show her this?
Nodding, the consultant shifted in her seat and picked up a pen, using it to point to the various parts of my photographed vulva. ‘Here, you can see the tell-tale grey-white patches on your skin. You can also see here, and here, that your labia minora has fused with your labia majora.’
Biting the torn cuticle of my thumb, I blinked. ‘You mean I’ve lost my inner lips? They’ve just gone?’
‘I’m afraid so. Your Lichen Sclerosus has resulted in them fusing.’
My Lichen Sclerosus? Mine? I don’t want it. I don’t want the stupid Lichen thing. And how could my inner lips have disappeared? How could I not have noticed? I mean, I’d noticed something was up, something had changed, but not in a million years did I think this had happened. Or that it was even possible to literally lose part of your body. I’d thought I was going mad or something, I’d thought I’d remembered it wrong. Why hadn’t I taken more notice of my own body? Why hadn’t I come to the clinic when the nurse had first said something looked different?
I wrapped a strand of loose hair around my finger. I’d had my smear, what, four months ago? It had been then that the nurse had said there were a couple of patches of grey down there. She’d told me to go and see my doctor. But, of course, me being me, and getting embarrassed by stuff like that, I’d gone to see a different doctor, one I wouldn’t have to see again and again for various other things. But this other doctor had said it was probably fine, she’d said it was probably just me, not anything to worry about. She’d advised me to go and get it checked by the nurse who specialised in family planning at the surgery. And I had. And she’d said the same, that it was probably just me, that the skin had probably just changed colour slightly, more than likely due to my age.
I should have come straight to the GUM clinic. I shouldn’t have left it so long. Why had I? I shook my head, I’d had three people tell me it was probably nothing. That’s why I hadn’t. I’d trusted them. I’d taken their word as truth.
Taking a deep breath in, I bit my bottom lip. It wasn’t their faults, it was mine. It was only me who hadn’t taken my health seriously enough to get another opinion. Plus, the symptoms wouldn’t have been as severe back then. That was probably why they hadn’t been able to diagnose it. Still, though, if it had been diagnosed back then, I might not have lost half my vulva. ‘Will it come back? Will it unfuse?’
Leaning forward, the consultant kindly patted my hand. ‘No, I’m afraid the changes are irreversible, but what you do now may prevent any further changes.’
Further changes? What else could happen? ‘But I’m only 39, isn’t it something that’s supposed to affect postmenopausal women?’
‘Not always, no.’
‘I haven’t had any symptoms, though. I haven’t had any itching or any pain, only a bruised feeling when I spend a long time on my feet.’ Can it really be a silent disease? Can it really change the structure of my bits without any warning signs?
‘You’re right, its more common to have itching, soreness and even pain with Lichen Sclerosus, but it’s not unheard of not to.’
Leaning back in my chair, I closed my eyes. Why me? Why did I have this? It didn’t make any sense. None of it did.
Fast forward six weeks and I’m sat holding my mobile to my ear.
‘I’m sorry, no one is available to take your call. Please try again later.’
Folding the hospital referral letter, I slip it into the back pocket of my jeans.
It’s fine. I’ll try again later. And again. And again, until I get to speak to a human and make an appointment.
You see, I’m ready to take control. I’ve done the crying, the grieving of taking a ‘normal’ vulva for granted. I’m ready to block out the feelings of despair and sorrow that keep trying to rear their ugly heads.
It’s not easy. Some days all I want to do is crumble, hide away from the frightening realities of this disease and pretend it’s not happening. And some days I do. But not every day. I’m not going to let this thing, and the fear it brings, control me or my life anymore.
And I’ve already begun, I’ve begun taking control. I plucked up the courage and went to see my regular doctor. I asked for a referral. I’ll get the help and advice I need, as soon as I can make an appointment anyway. Until then, I’ll continue to follow the advice I’ve gleaned from other sufferers. I’ve upped the frequency I use my steroid cream and I now know to apply my moisturising cream religiously, not just when I remember or when it’s convenient.
Yes, I’m not the same as I used to be down there and I never will be. Heck, it’ll probably change again, and again, and again. But am I going to let this disease and the damage it’s doing define me? Hell no. There’s more to me than that. I’m still who I was before this nightmare began. I’m still me and nothing can take that away.
Thanks to the Lichen Sclerosus UK Support Group for Women on Facebook, I now know the recommended protocol is to use the steroid cream twice a day to begin with, not the once a week I was originally told. Now, I have hope. I have a way to try to regain control of my body and thanks to the group, I have the support I need whilst I do so.
Living in Taiwan
1978 Reynaud’s syndrome
1992 Hashimoto’s thyroidism
and Coeliac disease
2014 Bilateral mastectomy (Invasive Lobular and Invasive Ductal carcinomas)
Mid February, 2019
I felt a soreness and itch around my clitoris and labia. A discomfort that, after a couple of nights, became a burn in the whole vulval area, making sleep elusive.
After a week I suspected that a recent change in washing powder was the issue and switched to hypoallergenic, fragrance-free products.
The burn, itch and pain was becoming worse. In fact, I was feeling the symptoms all the time.
To make matters worse, every time I had a bowel movement, the pain was intense (like passing glass) and I would bleed badly.
I was meticulous about keeping clean (having a wonderful Japanese toilet that sprinkles and spurts water wherever and at whatever temperature and force desired) but nothing seemed to work. I used Sudocream hoping it would relieve the anal pain but each toilet visit had the same, bloody outcome.
Visits to two colorectal specialists for the pain and bleeding provided no answers (even after a colonoscopy) and I was sent away with haemorrhoid cream and the suggestion I look into IBS.
I’ve been coeliac for 27 years, lactose intolerant for 9 years and am extremely careful about my diet. However, I did research and started a low FODMAP diet.
Surprisingly, this did help a little. I bloated less, was able to do a number two more frequently (now every day or two) and, being softer, I did not feel cut as badly.
My vulva, labia and clitoris were more painful than ever and felt bumpy.
Examining with a mirror,I could see that my labia were shiny white, with hard patches, and so, the very next day, I visited a familiar gynaecologist.
“Old woman’s issues” I was told - he recommended using Vaseline and said goodbye.
I used Vaseline for the week I waited to see my specialist gynaecologist (he had performed my keyhole surgery) and, having used Google to research my symptoms, I was convinced that my issue was more than becoming “old”.
The specialist looked, booked a biopsy for the following week and gave me Bestasol cream and Hyalofemme lubricant.
The former cream did help (it was a mentholated Clobetasol), whilst the latter made me itch more and so I abandoned it after a couple of tries.
Results were in and I was told...
“Leukoplakia. Hormone treatment can help but not in your case (my cancers are hormone receptor positive). Keep using the cream.”
... and that was it.
Happily, the cream began to lessen the patches and the whiteness on my labia.
(While he called my issue “leukoplakia”, my medical records show the biopsy result as “Consistent with LS”)
One of only 2 doctors in Taipei whose medical specialism details mentioned LS, was seen.
She, whilst remarking that I was in a severe flare, recommended a different hyaluronic acid product to moisturise and talked about PRP therapy and laser therapy. The gel was expensive (£125 for 4 individual use tubes) but the therapy was prohibitive at £3,000 per treatment and 2-3 treatments needed per year!
I tried the gel but did not see any noticeable improvement. I returned to using Bestasol.
Unfortunately this is when the fusing became very noticeable.
Surgery was discussed with the other specialist who had LS experience, and she scheduled a small procedure to release my half-fused clitoral hood.
However, I ended up with the labia being separated and internal incisions at 12 o’clock and 6 o’clock to counteract the shrinking of my vaginal opening.
5 weeks later the stitches were removed.
I obtained a tube of Dermovate cream and tried it, hoping it would reduce the redness that had replaced the whiteness and patches. Unfortunately it made the redness worse and started me itching again.
At this time though I discovered, for me, that ‘washing’ with coconut oil seemed effective in managing the itch/burn. I also discovered local water wet wipes that I used after every toilet visit, with comfortable results.
I felt that I was in remission.
The stress of how I felt, the realisation that I was losing all that was anatomically female about my body, really hit me hard: No boobs and disappearing lady parts was unbearable. Consequently, I suffered from mood swings, with frequent outbursts of anger and/or tears.
I started counselling to help me deal with the emotional aspect of the issue.
I also joined your Facebook group and reading about others in similar (awful) positions helped more than I can express.
31st December 2019
My 56th birthday!
Life is not easy: 11 months ago LS did not exist for me.
Now, in addition to always needing to be conscious about where and what I eat/drink, I also need to be prepared for using toilets outside of my home and for activities that may trigger flares (swimming/hot springs/long journeys, etc).
Fortunately, I have the most amazingly supportive and loving partner who continues to make me feel beautiful and helps me to be brave and organised.
I’m also very grateful that your group has given me more clarity than any doctor and more tips on what to try. The goalposts constantly move but you help me to respond.
In spite of using Epsom Salt or Dead Sea Salt baths to try separating small sections of re-fused labia (occasionally the skin did split) the fusing continues.
I have an appointment scheduled with a doctor famous in Taiwan for his holistic approach to palliative care. Recognising that none of my conditions are life threatening, he has, nevertheless, expressed interest in exploring using similar treatments and strategies for me.
This fight will go on, and my life will be lived to the full
Write something about yourself. No need to be fancy, just an overview.