Devastated by LS diagnosis

hi. i too like you had problems having sex, tearing, itching, turning to white patches and clitoris fusing then both sides of my labia, it started about 15 yrs ago. ive been on treatment with dermovate when its on a flare , you use it for around 3 months ,every night before bed, fir a month then every other night fir a month, then every 3 night fir a month, then i go onto a milder ointment called eumovate, every 3 nights ongoing the rest of the time, changing back to dermovate when your on a flare. the treatment should be ongoing unfortunately. keep checking your self incase your clitorus starts fusing, my gyney told me to buy a vibrator and every so often just use it to keep your vagina from fusing. you only have to insert it then take it out its for precaution only. please try not to stress as you will only make things worse. i hope im some help. oh i was put on cream first then later my dr changed the cream for ointment which i think is better.

Hello,

I am sorry you had to endure such treatment, some doctors really shouldn't be doctors at all! I am 36 and had LS before my teens and of course at the time no one knew what that was. The itching disappeared when I hit puberty but the pale skin and bad fusion remained. I thought a buried clitoris was normal until I started having sex and the skin ripped every time I moved wrong. I lived my life like this until last year, when I met a wonderful doctor. Everyone before her said I just have to live this way. But she changed my life. I underwent a small surgery to expose the clitoris again and fenton's procedure to deal with the fusion on the bottom of my vaginal opening. I didn't even realise that was there too, I thought a small tear after sex there was normal. Her name is Aisha Qureshi and she works at Circle Bath hospital. She said she has operated on several ladies like us, some completely fused so they could barely urinate. She empowered me to go ahead with the surgery despite my fears and I will forever be grateful for her. Recovery was not nearly as bad as I thought and the hospital was lovely too. I can finally have sex without pain! I highly recommend her, she is a very gentle, understanding person. I hear Circle Bath is Covid free so maybe they see people now not sure. In the meantime, use the steroid cream you were given. I was also told by my doctor and other ladies here to always use olive oil or coconut oil after using the toilet to keep things moist there, it is very useful and can prevent future fusing. All the best to you, don't give up and PM me if you need any further info x

Oh and I forgot...the chance of developing cancer is very small. My doctor said it is rare and with careful management and monitoring completely avoidable. Please don't panic, that makes everything much worse. It is not a pleasant disease to live with, but not a death sentence. There are some ladies here whose stories are very encouraging. I was devastated when I started suspecting what I had, but there are worse things you could have. We are here for you 😊

I understand what you are going through. I was diagnosed just 2 years ago, but I had it a long time before diagnosis. I agree with Vera 084 - it seems devastating the first few months but once you find the right doctor, it is entirely manageable. I was in panic mode because my regular gynecologist did not instruct me on how to apply the cream or ointment. I was using way too much and the cream began to thin and tear my skin which I thought was the LS - Then I looked up a specialist - a dermatologist that specialized in vulvar - She told me to apply just a tiny amount to the area - an amount 1/2 the size of an English pea. At first I didnt think I could do that - I was using about a teaspoon - but I learned to do that - then my skin stopped tearing, I am no longer cutting the crotch out of panties, I can ride my bike, horse, have sex - I am living a normal life. I use coconut oil once or twice a day and I use ointment very mild - every 3 days. I am fine and happy. Good luck to you - just find the right doctor - you will be okay -

Barbara

You poor thing, yet another unthinking gynae. So many doctors can be utterly brutal about LS, they seem to have no concept of how devastating it is to lose such an important part of your anatomy and how that impacts on your self image as a woman.

I am 66, diagnosed 6 years ago after insisting that I knew something had changed and that my itching/buzzing wasn't thrush. I have not had much further fusing in that time by keeping up with steroid and lots of moisturising (emuaid and cetraben ointments) and using Borax soaks. I see a sympathetic dermatologist every 6 months and have a kindly female GP who is knowledgable about LS. The derm told me you have just as much chance of developing cancer as anyone in the population generally, which puts it in perspective.

As the other ladies on your replies have said you will find a way through this and so much depends on you finding your own personal management. We all differ.

So heartwarming to read Vera's story on here. What a wonderful doctor she has found. I am going to take a note of her name and hope that she would consider operating on someone my age should my fusing worsen. Thanks Vera.

And, my suggestion would be to be brave and tell a friend - it does help to have a female to talk to. There is no help on NHS for the psychological implications of this disease of course. My husband is very understanding and caring but it's not something I want to keep talking about to him as it can spoil the fun of sex.

Good luck.

sorry - in my reply I typed Vera and it should be Vero.

Thank you all so much, i am so grateful for your wisdom. Similar to some of your experiences I think I have actually had this from early childhood. I have always had soreness around my anus and could never wear tampons as a teen as i could never insert them due to pain and tightness. Me and my husband have always joked about me having a 'tiny giny' but never realised it was a medical problem! I am lucky that he has been very supportive through this. I just hope i can continue to have a fulfilling sex life with him i to my later years.

Vero - thank you so much, i would really appreciate your surgeons details do that when lockdown is over i can see about a GP referral to her - i would be willing to pay if she does private work! Do you mind me asking how the procedure was done and what the recovery was like?

thank you all