Reversing clitoral fusion/shrinkage
Posted , 22 users are following.
I have recently been diagnosed with Lichen Sclerosus. My biggest issue currently is the fact that my clitoris has apparently vanished! I can still feel it deep down but it seems as though it has been buried under pale skin with a very thin line showing a faint join (no webbing). Both my GP and consultant are very apathetic about this (I bet they wouldnt be if it was their wife!!!). My GP even suggested that Clobetasol would probably 'sort it out'. My questions are:
Can Clobetasol actually fix my clitoris issue? His theory was that the steroid would thin the skin here and eventually re-reveal my lost clitoris - is this even possible?? It sounds dubious.
I have read about testosterone/estrogen creams being able to restore vulval tissue - is this the same for LS patients? Would I gain any benefit?
Are there any methods for me to manipulate the skin to gradually pull it apart?
Is surgery an option and if so how painful is it? Both my consultant and GP seem totally against any surgical intervention which frustrates me greatly. Is there any private clinics in the uk that i could refer myself to for this?
Thanks all
1 like, 45 replies
sarb73328 Thedramalama
Edited
I think someone replied to you in your other thread about having had successful surgery in Bath UK?
I also replied to you. I think steroid is useful certainly in preventing further fusion. It appears to have done that for me. Also I have been using oestrogen cream since diagnosis and it has helped keep skin soft and supple. I would not stop this now. However, I am 66 and post menopausal and I think you are much younger so oestrogen may not be appropriate for you.
I also recall someone on the thread successfully easing skin apart but I have no idea how she managed that. It sounds a little drastic.
I am sure you will find your way through this as we all do. Feel for you with those unsympathetic doctors.
Thedramalama sarb73328
Posted
Thank you Sarb, yes I did see the replies to my other post I'm just in a bit of a blind panic with this diagnosis. Also I don't know that my GP would refer me to Bath when I live in Lincolnshire. I feel like its a bit of a postcode lottery as to how you are treated for LS which is extremely unfair. I am only 33 so dont know if I will be allowed estrogen cream as I may be considered too young - although my GP felt I was 'too young' for LS too! ....sigh
sarb73328 Thedramalama
Posted
Little children can have LS so how can you be too young?! I understand your panic - I think we all have had that and continue to when things change. I would expect you have enough natural oestrogen still at your age but maybe a dermatologist could advise you.
Definitely ask if you could be refered - I think you have a right to be refered where you choose under our NHS system. You could try writing to the doctor mentioned also to see what you could do to get to her. She may even know of other doctors elsewhere who carry out that surgery. Be pushy. Too many doctors just don't understand the devastation this disease causes. I am totally with you when you say you bet they would take notice if it was their wife. Grrrrrr.
sarb73328
Edited
as a postscript: my female GP said that so many women suffer in silence as it's a part of our bodies we just don't talk about even in this day and age. Nor do we examine them of course. She actually made me laugh because she said men on the other hand, go to GPs with the slightest worry about their penises - waving them at her with plaintive cries!!!! Hope that makes you smile at least!
moira14061 sarb73328
Posted
Hi Sarb, just curious, do you use the estrogen cream on the clitorus area itself ( I was not told to), or by using internal applicator directly into the vaginal passage ?. I was advised to use dermovate to the vulva area nightly but using it since Dec, I feel that's long enough, so I've reduced it to a couple of times a week as a maintenance dose as it was beginning to make me sore, plus 1x 5ml full applicator of estrogen , reduced to once a week now, it' used to be twice weekly directly into vag passage itself, I wasn't advised to massage a bit of it onto the vulva area though.....just dermovate on there ! ?
Vero84 Thedramalama
Posted
Hi, I was the one giving you the details of the doctor in Bath. She is private, you can just call and get an appointment but it won't be free. But I think even on the NHS you have the right to ask for the doctor. If not I'd still somehow fork out to see her, she is excellent. Best of luck x
sarb73328 moira14061
Posted
hi Moira, yes I apply oestrogen cream into vagina with applicator like you but also a little rubbed into vulva and around clitoris. I was advised by a nurse to do this after having a 'loop' procedure on cervix and the beginnings of LS symptoms. I still use it 3 times a week - no advice to cut it down. I see a dermatologist every 6 months normally who is aware of my regime. Obviously use steroid also, now once or twice a week depending on any flares. Slightly concerned you were advised not to apply oestrogen to clitoris. Do you know why?
moira14061 sarb73328
Edited
Hi Sarb, no I haven't any idea as to why I wasn't advised to apply cream to clitorus area also, but think I'm going to start ! I hope the reduction of 2x weekly to 1x weekly application of the estrogen will be suffice. Will see how that works for me as I only started this new regime last week ! However, if symptoms become more bothersome, I will revert back to 2x weekly applications...forgot to mention previously that I also have VA. The medics all appear to sing from a very different hymn sheet regarding the ongoing treatment for LS/VA, it's all so confusing. !
suzanne25846 Vero84
Posted
I contacted the doctor's surgery and was advised you have to have an NHS number to see a doctor in the UK.
ana82774 Thedramalama
Posted
I was diagnosed the year before i had my first child i was 29 or 30
ro08248 Vero84
Posted
hi there what is the name
of the doctor in bath? thanks so much
Vero84 ro08248
Posted
Hi, it's dr Aisha Qureshi
Jdjdjdjdjd ana82774
Edited
i am newly diagnosed and so depressed. Did this affect your pregnancy or delivery at all? this has been going on for 10 months with no relief. I cant have sex with my boyfriend of years and this just keeps getting worse and worse and no one understands
beverly52803 Thedramalama
Edited
Women with the same problem have posted here and described surgery they had to correct it. Unfortunately, I do not remember their names or what countries they were in. Maybe you can find them reading old posts. If not maybe you can contact the moderator and ask how to narrow the search.
It sounds as though your doctors are not up on this but I would think they could certainly research it in medical journals. Sadly, we are at the mercy of some doctors who know very little about this disease. Judging by a lot of these posts that means most.
My case is relatively mild yet I've found it very difficult to find help with my attempts to be proactive.
Good luck. Keep plugging away. You'll find something, I'm sure.
ginny00059 Thedramalama
Posted
hi
i have a lot of fusing too. when i asked my dermatology consultant about surgery, as i haven't found clobetasol useful in reducing fusing, he advised against it. He said that it can cause scarring which can create more problems than it solves! So i sort of discounted it.
I would be interested in hearing experience of others who have been through it though!
i have come to the conclusion my main focus needs to be keeping the condition as controlled as possible - using emolients daily and keeping my sugar intake down. As this makes me feel less uncomfortable and i can actually enjoy sex (despite the fusing). Not having a visible clitoris was devastating (and still is) but i still can enjoy sex, as long as the condition remains under control. As soon as it gets sore and itchy I find sitting down painful and sex is out of the question.
I was diagnosed with this in my early 40s but think it started in my 30s too, i just didn't know what it was!