Lichen Sclerosus: Any other women dealing with this disease?

@alju Thank you so much for the well wishes. It is reassuring to have support and share the experience so others may address something that still seems to be a "hidden" condition, with no cure...yet.

Best wishes to you!

@cantek Thanks so very much for these suggestions. I was given a squeeze bottle (the kind with the up/down cap, this one had 3 small holes in the cap for squirting) after the surgery, along with a "sitz bath" hat-like plastic thing that you can use on the toilet for warm water/steam relief.

Fortunately, a nurse advised post-op by email that the bottle squirted at/after each bathroom visit could replace the sitz bath, which seems so very cumbersome. So the bottle is what I used. (And up until recently I've carried it with me, along with other supplies AND vaseline to all activities outside home).

I did ask ahead of surgery to have great care exercised so the urethra wouldn't be compromised, altering the anatomy & any subsequent issues from that. I wanted to avoid any need for a catheter at home, and possible infection. But, after what I went through, if the catheter had been an option to avoid the excruciating acid-like pain of urination in the first 3+ weeks, I might've opted for it.

I hope that won't be necessary this time around with the 1-inch biopsy. As I might've written in a previous post, if this is all toward avoiding cancer, and is geared toward healing and getting back to "just" managing the LS with clobetasol, it is worth it. If this were something that would be for the rest of my life, I'd have to dig deep to figure how to live my life with it.

Thanks again so much - with all the prescribed creams & ointments (lidocaine, diphenhydramine), sprays (Dermaplast) & oral medications (Allergy medication orally like dyphenhydramine) I've been suggested to try, all that has really helped is Vaseline, and in these later stages, it doesn't remove the itching phase, and even adds to the discomfort with the stickiness at times.

Again, all in the hope of helping others with information and experience, non of which I had the benefit of this time - but the posts and support here are the best, and give others the best chance of getting better control, if not relief, over this insidious condition.

Steroid cream/ointment doesn’t effect vulva skin the same, it doesn’t thin it i that area it helps it get thicker. so it’s the opposite effect to other areas of skin so therefore safe to use more often. need to be more careful for perineum and anal skin.

@kakey18 Welcome to Mayo Clinic Connect. I’m so glad you found this site and took part in the discussion. And good, helpful information, too.
Do you currently have Lichen Sclerosis and what treatment are you on?
And 1 more question. How did you find Mayo Connect?

@brandysparks I used Charmin Extra Soft but found it linty and it tore easily. Now I use Charmin Extra Strong but I find they have reduced the size of the sheets and don’t feel like two ply. I have resorted to using a fragrance free baby wipe after using the Charmin.

Thank you for sharing. Sorry you are going thru so much.

My cousin has it and she joined the group on facebook. There is a lot of information on there and how women are dealing with it. It has helped her through this. I hope you are a facebook user. Good luck.

Kitten, laser treatments from Coyle Institute in Pensacola, FL work for me for about 2 1/2 to 3 years. Then I have another treatment done. (Tulip Procedure.) He made my vulva and clitoris look normal again without taking away any sensation. It just takes a few days of healing, then I fly back home to AZ.

Dr Coyle was ill, so I recently tried another “reputable” specialist in Phoenix who did a laser procedure, with zero results. LS was back in full force after 3 weeks, and he didn’t take away any scar tissue.
I’ll be going back to Dr Coyle.
I do hope you are able to find some relief. Aquaphor will at least keep the area moist and pain away when urine hits open cuts in the tissue. Use it all the time if you can’t use steroid ointment.
Yours in sisterhood,

It suffer from lichen sclerosis in the genital area. It took 6 months in extreme pain to get the diagnosis. I was prescribed dermovate cream which helped after about two weeks. I was advised by my dermatologist not to use soap in areas affected and given a prescription for dermal shower emollient. I was also advised not to use wet toilet tissue or any panty liners. Since then, I have not had any real flare up from this because the minute I feel a little pain I use the dermovate cream. Hope this helps.

@veronicamac what works for me is Clobetasol ointment when my lichen sclerosis acts up.