Depressed with lichen sclerosus
Posted , 8 users are following.
Hi I've been diagnosed with LS never knew I had it although I always had the itch nd thought it was thrush.I was shocked when my doctor told me I had it..she never explained what it was..I had to Google it myself.When I examined myself half of my labia is missing nd some fused..I dont suffer bad with the itch just tightness so I'm using olive oil nd bread soda baths..I'm constantly now examaning myself in the mirror nd recently noticed a raised soft bump/spot inside my vagina nd worried wat this could be..would anyone have something similar would love to get some feedback ...thanks
1 like, 24 replies
suzanne25846 fiona72391
Edited
I also thought I had thrush for years and was shocked when I found out what it was, especially that there was no cure. I was referred by my Women's Health GP to a specialist in LS and put on a strong dose of steriod ointment to get it under control, gradually reducing the dosage to a low dose to use on a regular basis. She wisely told me not to go on the internet and look at the pictures as that would increase my stress levels which I know definitely affects the conditions severity. It is possible to get LS to a manageable state but it is coming to terms that there is no cure at this point. The key for me was to not resist the current recommended treatment. It has not been easy but it is a simple process to follow if you work with a supportive practitioner.
suzanne25846
Edited
PS. There is a medical book written specifically to educate clinicians called The Vulva - A Practical Guide For Clinicians by Gay Fischer and Jennifer Bradford by Cambridge University Press that includes LS so if you can't find a specialist this can support them with recognition and management not only for you but other women patients. In general there is a lack of understanding of this part of the body by society in general so educating ourselves and our medical health practitioners is key.
beverly52803 suzanne25846
Edited
If I was in a remote area and had only one doctor available to see I might consider bringing them a book, but medical doctors have computers just like we do. How can it be that they aren't encountering conditions they are not familiar with and are not doing searches to find out what the problem might be?? It is frightening to think they need patients to bring them books. Are they so closed minded that they think they have seen and know everything? There would be an awful lot of misdiagnosing going on if that's the case. Over the years I've had GPs refer to books in their office and do computer searches while I was there; I was impressed that they were humble enough to admit they didn't know.
beverly52803 suzanne25846
Posted
suzanne, which level of steroid are you using and how often? I have never had a flare up, only a slow spread of the white (so minor I couldn't see it) accompanied by a buzzing feeling despite using the meds as directed by a gyn very familiar with LS. The buzzing finally stopped just before I saw a dermatologist (instead the gyn who was no longer available). The derm put me on Tacrolimus five days, twice a day then two days of clobetasol for two days...forever. Added to this I was using hormone cream twice a week. It was just too much so I'm trying to figure out what a low dosage of all of it is, including the steroid. I've gone back to the medium strength Triamcinalone rather than the clob to give my skin a rest.
I have an appt to see the gyn (who finally reappeared) in May. Till then I am trying to figure out an effective protocol that works but isn't damaging.