Lichen Sclerosus: Any other women dealing with this disease?

I am not a doctor, but have LS. I don’t think it ever goes away completely but the autoimmune nature of the disease means that flare ups come and go. However armed with the right medication mine is definitely under control.

Clobetasol is the ointment that is recommended. If your doctor didn’t prescribe it, you might want to find a doctor who is more aware of this condition. I highly recommend the Lichen Sclerosus Support Network. They have a lot of information about treatments, recommendations, what this disease is and how it affects you. I moved recently and went to a gynecologist who hadn’t a clue. The exam was painful because she was so quick with the speculum as if she was unaware of what damage LS can do. Through LSSN, I found another doctor who specializes in LS. It has made all the difference.

As of today, after 15 months on a weekly dose of 20mg methotrexate, my dermatologist and rheumatologist and I agree that quieted down all extra-genital lichen schlerosus inflammation and new lesions! I’ll see my gyn in a couple months and see what she thinks from her point of view.

I have it, nothings been fused but I've had fissures and tears. I've only been on clobetasol, which helps. I was scared to use it but recently told by a specialist to use it more often because it builds the skin up.

I have lichen sclerosis too. Apparently it's an autoimmune disease. I sympathize with you as I've known the pain.
You should use the clobetasol cream, faithfully for one week every day, taper off to once every 3 days the next week and then once per week. It will work!! In the meantime, if you find the burning to be too much, apply a Vaseline type cream like Eucerin Aquafor. It's very helpful to relieve additional pain from rubbing (underwear, sitting etc). Hope this helps. I no longer have active symptoms. But it took a year and a half.

I was just diagnosed with it

Yes. I was diagnosed 11 years ago, but I’ve had it at least 16 years. I have had fusion and scarring. I’ve had two laser surgeries in Pensacola, Florida that worked wonderfully to get my anatomy looking more normal without disturbing clitoral sensation, and another in Phoenix, Arizona in April that was unsuccessful, as the LS was rearing it’s ugly head in full a month later. The first two surgeries lasted about 3 years each before I needed another to open my vulva again. LS just continues to have its autoimmune cycles. I use Clobetasol ointment, or Clobetasol Betamethasone Cream. I suppose I’ll need to travel to Florida again for a more successful treatment soon. I live in AZ. Sure wish Mayo Clinic had a permanent treatment for us.

Hello,
My Mother at age 85 was diagnosed with Lichen sclerosus in her vaginal area. Last September it developed into a cancer tumor on the outer lips of her vulva area. This past January at age 87 she had the tumor removed, and it had spread to the inside her vaginal area and lymph nodes. She went through 38 treatments of radiation finishing on May 3. Five weeks later on 15 June the cancer was back, now being called squamous cell carcinoma. The PET scan on August 3 showed the cancer has spread to her chest, lung area and continues to grow in both lymph nodes in the groin area and open cancer sores in the vaginal area continue to get worse, The Gynecology Oncologist said the only option is immune therapy, Keytruda which she had her first treatment on September 8 and her second treatment is this Friday, September 29.
My Mother is in so much pain and discomfort. She was taking Tramadol but that wasn't really working so the doctor has put her on Oxycodone and that too isn't helping. She also used a topical cream prescribed by her Radiologist called "Bliss Cream" a mixture of Lidocaine and Silvadene which did / does help but only temporary relief.

My question is, does anyone know of other women suffering with this and any suggestions on pain relief?
It is difficult for my mother to walk because of the swelling in her legs and the open sores in the vaginal area. I feel so helpless with a solution to take her discomfort away. I've researched but because this is not a common disease, there is little to no resource for help. The doctors just sympathize with you and say there is nothing to do but pain management. And in our case, try the infusion treatment, if not pain management.
Any thought or words of wisdom would be greatly appreciated.
Thank you.

I don’t have all the difficulty or the same cancer that your Mother is unfortunately dealing with. I’m in recovery due to an addiction to opiates thanks to a shady pain management Dr. I went to rehab and 12/12/23 I will have 12
yrs of sobriety. I fought lymphoma, St 4 for 3 yrs of chemo and immunotherapy. I took my son’s advice, who is a Dr. and got medical marijuana. It allowed me to deal with extremely bad bone pain, nausea, neuropathy and helped me sleep. I didn’t take any narcotics throughout my treatment

Thank you for your thoughts and cheers to you for overcoming unbeatable odds. My Mom does have the letter for the prescription marijuana from the doctor and we did go to the local dispensary and spoke with the pharmacist. We did purchase a tincture and balm, started out with CBD the lowest dose as Mom has never experienced anything like that, but it wasn't effective, I see we will need to go back and get the full THC dosage and try again.
Thank you again for your reply.