Lichen Sclerosus: Any other women dealing with this disease?

Agree that this condition needs more publicity especially among the medical,community. I was undiagnosed for years and as a result suffered permanent nerve damage and tissue loss. In my case no ointment steroid, diet, or other treatment will bring back the lost tissue or the painful nerve damage.
I have a regime where a very limited use of a steroid ointment will prevent flare ups, and oral medication will control the nerve pain. I am not a diabetic. Hope you find your best solutions.

@willows, will you please share the name of the steroid ointment and oral medication? I am always looking for anything I can take to my gynecologist for her approval. Nothing has really helped me for very long. I am so sorry your lichen sclerosis was not diagnosed earlier. It took going through three gynecologists until I found my present one who at least knows about LS. We have tried so many things to try to help, but right now as I type this I am in burning pain. I have lost hope for a cure because I was told there is no cure. Ah well, at least I am alive.
With all good wishes, @joybringer.

I do sympathize with you and know exactly what you are going through. The mental anguish and physical pain together take the pleasure out of life. If you don’t have any success with your gynaecologist it might be a good idea to try s dermatologist associated with a university hospital. This is how I was properly diagnosed, by a dermatologist not a gynaecologist. This may be because gynaecologists usually treat gyn illnesses while lichen sclerosis is a skin problem resulting from immune system problems. Any how re my meds. Clobetasol ointment (steroid ointment) used twice or three times a week (not everyday) for two to three weeks then only Vaseline for the next week as well as during the Clobetasol weeks but not right after applying the Clobetasol. For the nerve pain caused by LS I take the maximum allowable pregabalin per day, some in the Am and some in the evening. Along with that I take 20 mg of amitriptyline and 10 mg of metropolol because in my case the amitriptyline gives me an occasional extra heartbeat. It also gives me a dry mouth but these side effects are nothing compared to suffering LS. One word Iwould like to mention, the Clobetasol only treats the skin of the vulva. It won’t help any nerve damage which is why I need the other meds. Good luck getting help. Please let me know how things are progressing.It’s no fun to suffer alone.

I use Clobetasol (sparingly) which is a Steroid. It was prescribed by my gynaecologist. I am now on a maintenance level of once a week. I didn’t take it as prescribed (communication issue) and wound up with a pre-cancerous condition called VIN 3 (rare). I had extensive laser treatment… I now will remember my Clobetasol. There are other groups as well where you can find some good information… Sharing is Caring and LS Support Network. You will then have a good support group.

I think I understand your dilemma, except that I am blessed to not have a lot of other medical issues. My GYN told me there was no cure, which is disappointing. I use the Clobetasol for flare ups also, but sometimes it causes a burning sensation. I don’t remember the GYN mentioning laser treatment, but I will see him in a week, and I am going to ask him if that is an option for me.

I’ll be having my first laser treatment this week. I will keep all of you informed as I move forward. I have noticed that I was accelerating the condition when I was using biotin( Viral Proteins) in my case. The acceleration of shrinkage was phenomenal. I assumed because biotin encourages hair, nail and skin cellular turnover. Please be aware of this possibility for yourselves. I’ll be discussing this with my doctor on Wednesday and will see how she feels about this connection that I have made.

I find it odd that you find that Clobetasol smells bad. I have used it for many years and it never has any odour at all either just out of the tube or after applied.

Me, neither.

I will add EMU Oil/cream is the best! So soothing.! My
LS is on a much smaller scale than some of u women. I am thankful and blessed that it’s more of an inconvenience. Usin this cream a couple days a week, with Clobetasol and (Estrace Cream, and Yuvafem suppositories 2 x a week when I have a tear. These r brought about by exercising, swimming,walking, sex(not happening for a while). Or that is from 4 back surgeries, and my tailbone has been fractured at least 3 times and no surgeries, do to bad reviews. Soak in Epsin Salts, get a Bidet’!!! The best investment!

Does vulva luchen sclerosus go away completely with treatment?