Posted , 15 users are following.
I realize that gynecologists don't have as much information as a vulva specialist, but has anyone seen a vulva specialist who recommended anything besides Clobestol or some other cortisone ointment? What did they recommend to prevent fusing? Are they worth seeing?
0 likes, 38 replies
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frances6666 susan43705
Posted
I use Elocon, Mometasone Fuorate. This is a Potent steroid as opposed to Clob. which is Ultra potent. I'm afraid steroid [u]ointment[/u] is the only effective treatment there is, particularly in the first instance.
susan43705 frances6666
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ruth34896 susan43705
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karen23320 ruth34896
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susan43705 ruth34896
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domino58 susan43705
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According to my Vulva Specialist whom I have been seeing over a year in the UK that there is no other option regarding medication only different strength steroid creams depending on your reaction. I am on the strongest and it has made little difference. Have asked each time as I see her at 3momthly ish intervals along with her dermatologist if I would qualify for an op and each time she says no as it is active. They won’t or shouldnt according to her operate whilst it is active as it’s a waste of time as it will return with a vengeance. She also says that the operation rarely is effective long term as this condition is classed as “incurable” and a chronic condition.
Inhave been fortunate in that I have not had any itching for a couple of years now which could be down to the the Dermovate. I also regularly use dilator to try and keep my vaginal entrance as open as much as is possible and now use olive oil to keep me supple.
Everyone is different and the progress can be slow or very fast. I wasn’t aware except in hindsight that I even had this condition as have always been extremely healthy and until I thought I had an STD didn’t find out until over 3yrs ago. Up till then sex was gradually getting slightly uncomfortable but not unbearable.
Hope this is of some help.
Dom
susan43705 domino58
Posted
Hi Domino. Thanks for responding. Wow, this LS condition is so grim. I too think I have had it longer than when I was first diagnosed. I seem to be getting worse and worse and not sure I can even use a dilator right now but will try but don't think I will be having sex ever again. I use Emuaid (which I just got) and have been using castor oil, but the fusing is getting worse and worse. Acupuncture didn't help or the herbal pills. I feel like I have leprosy. I keep the itch under control with Clob sparingly and it helps immediately. I don't know what else to do. I had several years where I must have been in remission because I didn't see white patches, no fusing, sex was difficult, but that was all. I don't want to go the operation route since it does come back.
Guppy007 domino58
Posted
domino58 Guppy007
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My apologies for taking so long in replying.
Have looked up the procedure you mentioned and although my consultant didn’t give it a name assume that’s what it is called. The downside is my Vulva Specialist refuses to operate if there are any white patches. As I go virtually every 3 months to see her and consciously use the dermovate there is never a guarantee that there are no white patches, so one month I could be fine the next visit I have patches. She considers it a waste of time if patches are present. Ergo, it’s never gonna be done. She also states there is nothing else available that UK doctors will use as the limited treatments out there have not been tried and tested enough to prove themselves for use here.
I am fortunate in that I have not had any itching for a couple of years and had hoped my situation had stabilised as a result. Sadly according to her the architecture is really bad. I do use the dilators regularly which helps keep me open. Also olive oil to keep the skin soft. Am not remotely looking for sympathy but told her the last time, why on earth am I coming here every 3 months apart from supposedly keeping an eye out for the extremely remote possibility of cancer developing and losing time off work etc, etc. Just to be told, oh you poor thing, we can’t do anything, see you in 3 months. Am due to go again in a couple of weeks and intend to ask for 6monthly appointments.
karen23320 susan43705
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susan43705 karen23320
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Hi, I'm sorry you have to wait to see the specialist. I'm seeing my primary care doctor tomorrow to see if I can get a prescription for CBC oil. i have read online some really good reports. I'll keep everyone apprised of the response I get.
cynthia40883 susan43705
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susan43705 cynthia40883
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Hi Cynthia. I believe it is applied to the area. Not sure how much or anything. HOpefully I"ll figure all that out but I understand it takes 30 days after applying for cannabis to get the prescription filled. Something has to work. You can google CBC oil and Lichen Sclerosis. I'm so afraid to put anything else down there. It can get confusing for the skin, but I"m fusing more and more each day despite the lubrication.
cleo15 susan43705
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Thanks for reading this far!
susan43705 cleo15
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Hi Cleo, This forum has been a godsend for exchanging information. I read where castor oil mixed with lavender and verbana oil was good together, but the verbana burned me or I didn't have the right combination. I wash with lavender soap with no bad reaction. I wish I knew what the common denominator is for this unfortunate and inconvenient illness. And of all places!!!! I"ll keep everyone apprised of CBC. Hopefully I will a prescription for it.