Newly diagnosed and confused over treatment for lichen sclerosus

I’m in the same boat as you and I feel for you. . I have known that I have had LS for years but rarely had a flare. If I had a flare, I would just put some desonide on it which I was prescribed and what I was told to do. . Now I’m in a full-blown flare completely swollen inside my vagina. Have a deep cut on my perineum and am burning like crazy. She told me I was supposed to be using the Desonide a couple times a week but I did not know. She bumped my steroid up to betamethasone valerate 0.1 % topical ointment
Commonly known as: VALISONE but I think it’s working until it’s not. I just pray I don’t have cancer. She is doing a recheck in 6 weeks. If anyone has any suggestions please help. She said if I can get the Lichen under control I need to start on Estrogen cream since the lining on my vulva is gone.

To top it off I have interstitial cystitis so I’m just one big flare and so uncomfortable.

Best of luck to you. Sending love and prayers to all my fellow LS friends.

I use clobetasol ointment when I have flare twice a day for a month then once a day for 3 weeks then I go to twice a week for maintenance. I use estradiol vaginal tablets twice a week. I have found if I am doing something to sweat a lot like gardening I come in take a shower and apply clobetasol ointment helps from getting flares. This seems to be keeping my flares under control and life more bearable with awful condition. I tried to use estrogen cream, but it set me on fire and made my skin worse but with vaginal inserts I am 100 % better. I hope this helps you. I have had this for 14 years and this is the therapy I used, and I haven't had a flare for over 6 months

Do read the side effects of anything you use. Ask questions from professionals who know your health. Question manufacturers of products regarding their products. Personally I've found relief from using Lisepten. While everyone's situation and health can be different, this product has worked wonders and is the only thing I've used for years with fantastic results. It's not the end of the world and you've done nothing wrong. It's just what it is and now how do you best deal with it. I wish you well and know that you are far from alone.

What a miserable condition this is. I hope you find something that improves your suffering. I have found Clovate cream to be very effective. Just a small amount entry morning around the vaginal and perineum. I hope it might work for you also.

When you have a flare is it inside your vagina? Mine is so raw inside. I have a deep cut on my perineum but I don’t even feel it. Its inside that burns. I’m sitting here with an ice pack between my legs:( I definitely need a new medicine.
I tried estrogen cream years ago and it gave me bad cramping. I tried inserting the pills and had a bad reaction. I cannot tolerate most medications. And unfortunately estrogen is what I need and is making this worse.

Yes, I've had flares just inside vagina so very painful, that's where mine flares up most often I've also had tears in perineum that takes weeks to heal. I have felt so alone in my suffering over the years that I know it has changed me as a person because unless you have this condition you can't imagine the pain and the itching it brings. Every time I get a flare, I feel defeated and worn out.

I’m still in a flare (tail end of..i think) but my steroid is helping. I have 3 different ones that she has prescribed (over the years) . Desonide, hydrocortisone Valerate, and betamethazone. The betamethazone works but burns because it’s stronger. I prefer hydrocortisone valerate. People have mentioned rubbing it in for about 90 seconds. As crazy as that sounds, I have noticed such a difference with that. I also take about two-three showers a day where I rinse off down there with just water and that really helps and I’ve also taken an Epsom salt baths, and that helps as well. There are times when I’m still on fire and I just stick an ice pack between my legs and that really really helps and keeps me comfortable for the rest of the day. I don’t wear underwear I wear loose boxers or really thin pajama pants. But I try not to wear tight fitting clothing, especially when it’s really hot outside. I feel for you. I really truly do. My heart breaks for anyone that is suffering from this horrible condition and people that don’t have it just don’t understand. Another thing I want to mention, which is just something that I thought of the other day is maybe try getting a squirt bottle or even one of those bottles that you squeeze and the water comes out and after you go to the bathroom Rinse the urine off down there. I think the urine is acidic and it aggravates the LS area. Keeping Vaseline on as a barrier helps. Also… I take Claritin to help control it.

Sending healing blessings ❤️‍🩹

I was told to use clobetasol twice daily whenever I have symptoms.
I’ve just accepted that this is part of my life now. I went undiagnosed for many years and the clobetasol has been a blessing.

Hi Minnie23. You are doing many things to treat the lichen sclerosus. It can be so very uncomfortable. While Lichen sclerosus was ruled out with me, i did have the biopsy. Negative. However, I do deal with chronic mucositis in that area. I use Strata Mgt ointment (per my Mayo OBGYN). It is a wet wound barrier, and is applied under any prescription meds and moisturizers. It has been a game changer for my pain, inflammation, and skin breakdown. I have to order it, as it is not available on the shelf. This might help. Good luck!

Thank you! I have a video appointment coming up I will mention it to her. Glad it’s helping you!! 🙌🏻🙌🏻🙌🏻