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
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.
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
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.
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!
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.
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 ! ?
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!
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
Hello , From what I have read here on this forum and in various journals, the clobetasol will not do a lot to bring the clitoris back but that depends on what happened to it. IF it is covered up by fused labia, it is possible to unfuse it. If it is resorbed along with the labia, then, unfortunately, I have not read where it will come back even with clobetasol. Some women here have used borax solution dribbled down over the area and found success, some have used EmuAid, a product from a company in Florida (you can google and find) and some have used baking soda in water, (also google and find). It is important to keep it clean but no body washes. Try natural soap like olive oil soap. Coconut oil is also an antibacterial emoluent that's easy to get and pretty cheap compared to the hundred we spend on seeing doctors who do nothing. I urge you to keep after it and don't give up!
Thank you all so much. Eggbiscuit - I'm not sure if my clitoris has been resorbed or just covered up by skin - I can still 'feel' it if that makes sense, as though it is there but hidden, so I hope in that case it is the former rather than the latter (which to me seems horrifying!). I will do as Vero suggests and write to her amazing doctor. I could always book a hotel for a few nights if it means getting the right treatment. In terms of scarring, I am hopeful I would be ok having given birth naturally 12 years ago and healing well, also I have had cysts burst/lanced and heal well down there despite my LS (another joyful experience I have had!) so fingers crossed i may be a candidate for surgery. Thank you all again, I dont feel as overwhelmed and lonely as i did thanks to your advice
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?
Just thought i would mention this study i have found that illustrates a high success rate for surgery which may be helpful for anyone reading this thread - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4721030/
I will take this as evidence to my doctors. It also sounds like a relatively minor procedure which is heartening
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. !
I wonder how long this surgery was being performed before it occurred to someone to find out how effective it was. It has never been clear to me why follow up is not required protocol after all medical treatment. Doctors have absolutely no idea if what they have done or prescribed was successful unless the patient returns which is often not the case, particularly if the patient is unhappy with the result. Why not just hand a patient a form to fill in and send back? That info could be entered into computers and we would all be the better for it. I realize it would not be an official study, but it would certainly be helpful, much needed feedback.
This is the surgery I had and I can highly recommend it.
Hello Dramalama.... I got diagnosed with LS when I noticed my clitoris disappearing. It looked like it was receding... and the skin around it was turning white. :( I was put on Clobetasol after my biopsies came back positive for LS. My doctor told me the clob would "bring my clitoris back." Weeeeelllll... that didn't necessarily happen! The clobetasol turned my skin back to "pink" instead of white... and I did/do rub clobetasol alllll over the clitoris and hood. (My hood is fused to the clitoris.) The fusing wasn't coming apart... UNTIL I started soaking in borax baths. When I'd soak in borax - I would pull and stretch the skin away from the clitoris... and it started unfusing. It hasn't totally unfused, but its SO MUCH BETTER. My doctor also gave me estrogen cream to put just on my clitoris (even though I haven't gone thru menopause yet) because the sensitivity in my clitoris had diminished. :( Well... I'm happy to say that the borax baths helped make my clitoris more sensitive - and the estrogen helped, too. I'm able to achieve an orgasm a little easier than before I did all of this. My orgasms aren't as AMAZING as before... but at least I'm having one sometimes. You're so young.. I hope you get your clitoris back... and feel better soon! <3
Thank you so much Debbz - ive been reading about borax and will see if i can get some here in the uk. Im willing to try anything! I wonder how it works with unfusing skin i.e. the actual mechanics of it. Either way its worth a go!
Hi, im in the UK and am looking to try Borax too, my clitoris is there i think but its white and im not sure if i have a clitoral hood as i can just see a little nub, but never really inspected it before all this!
ive never really had visible labia minora as far as i remember so i dont think mine have disappeared but its definitely white in the area above the clitoris and there are also white patches just below it on the inside bits which i think is called the vestibule, which im sure i never had before. i also get red marks and blood blistering that comes and goes but always in the same place in a line above the clitoris i dont know if that is friction or what, it seems to just appear then takes weeks and weeks to go
anyway i was just about to order borax so ill let you know how i get on if you like i just wish it would go pink again it looks so awful white :(
hi debbz if you dont mind me asking how long did it take for the clobetasol to turn your skin back to pink x