Hi A1,
My heart is with you. I don't know about L. Planus, but at your age the dermovate should work. I'm one of the few here who've had it all our lives (I'm 62, but started having painful sex at 22 or earlier). Looking back it was my second husband who wanted very frequent sex, that was when I started having a tear in my perimeum almost all the time. The hard fact is that the friction and bodily fluids of sex can really make a flare-up worse. There's a phenomenon called the Koebner Effect where skin trauma triggers the LS (and psoriasis, which I also have) to flare.
I still had two kids in my thirties (pregnancy hormones seem to make LS go into remission, so natural childbirth is not a problem. I've had long periods of remission over my lifetime. The thing I can probably attribute them to is low stress, a calm contented time.
There's a lot you can do to settle the LS down. I've learned a lot on this forum and took these notes to my Gynae appointment a couple of weeks ago, so she could share them with her 1000 (!) rural patients.
Dr. Andrew Goldstein 1200 patients with lichen sclerosus, the most in the world. His wife is a dermatologist. He attends all her meetings that cover the vulva.
We have a thread here where there's a link to the video:
https://patient.info/forums/discuss/dr-goldstein-lecture-271556
He says forcefully that it takes this 'ultra-potent' steroid (8000 times more potent than hydrocortisone) to treat the incredible amount of inflammation way down deep in the 'basement' layer of this extremely thickened skin. Thinning is actually part of the treatment strategy. LS skin is not thin but extra thick, because it's all scar tissue and hardly any skin cells. The white blood cells that cause inflammation are way down deep at the bottom of this thick tissue.
1. Soak in warm water for twenty minutes first to soften the tissue
2. Rub, rub, rub, the prescribed cream/ointment in for about 90 seconds.
Stop worrying about thinning the skin. It's way too thick! That's one of the treatment strategies of clobetasol. We want the skin to get thinner.
Use the ointment, not the cream, because the cream tends to stay near the top and not penetrate.
Quite a few women find the base of generic Clobetasol irritates. Brand-name (Dermovate) costs double, but it's enough for a whole year. 20-minute warm pre-soaks soften the keratinized skin to help the meds penetrate deeply.
Best advice: don't wash down there with soap. Plain water is all you need.
Don't wear tight pants and wear cotton panties.
Just recently we've learned from our member who's a doctor:
"There was correspondence in the British Journal of Dermatology recently regarding the cause of LS, and Dr. Chris Bunker from University College Hospital in London, who is a dermatologist seemingly interested in male genital dermatology. He suggests that it is likely that LS may be due to "chronic occluded exposure of susceptible epithelium to urine". This means urine on sensitive areas may be affecting the tissues and causing inflammation which leads in the longer term to the sclerosis, which then causes either itching , soreness and lack of the normal elasticity which leads to tearing. The reason for this suggestion is that males circumcised at birth never get LS,males never get it around the anus, LS appears around surgical scars and genital piercings, and also around urostomies (where the urine tubes are brought out on the skin after bladder removal). Circumcision also seems to cure males with the condition. It is suggested that some genetic predisposition of the skin "barrier" , such as occurs in eczema, allows it to occur in some women and not others. This genetic predisposition may explain the connection with autoimmune diseases. "
So, applying vaseline before urination seems like a good practice.
Grinning and bearing it is a good way to accelerate the scarring and atrophy. You don't want that. 'Yes!' brand oily lubricant has been recommended by many women here. They have it at big health food stores. One woman is trying a female condom.
But you need to heal before trying sex again. Please explore the threads below this one, there's a wealth of good advice and women younger than I talking about how they handle the sexual side of relationships.
Job One for you is to try to stop freaking out (I've done it and it only contributes more to the flare-up). See if there's some kind of settling, centering practice you can learn to get calm when emotions arise. One woman just yesterday is taking a 8 week Mindfulness-based Stress Reduction course. I have experience with that and there are teachers everywhere.
My personal best thing has been cutting way back on sugar. It seems to be like gasoline on the flames. I got much better very quickly.
Do post more, we're so happy you came here. We're all here for you. One of the most stressful aspects is having a yucky secret. Here you can talk.