lichen sclerosus diagnosis 4 years after treatment

shamayim Member Posts: 22 Member

Hello to all,

I have been having problems and was worried that my anal cancer was back again but instead was diagnosed by my obgyn with this rare incurable autoimmune disease called lichen sclerosus.   It is a skin disease that affects the analgenitourinary areas.  Basically your immune system attacks your skin in these areas and permanetly scars the areas which can result in difficulty with urination and defecation as well as a higher risk for carcinoma of the vulva.   The relentless skin attacks are acccompanied by intense itching, painful ulcers, bleeding and tearing of the skin of the clitoris, urethra, vulva and anal area.  The disease can also affect men but is more common in women.  Very little is known about this disease but I have have read about a possible HPV connection as well as some scientiststs believeing you are genetically predisposed but it may not be expressed until something in the environment triggers the disease.  In my case perhaps my radiated skin from anal cancer treatment is the trigger.  I dont know if there is anybody else out there that is like me that is an anal cancer survivor that has this disease.  I dont know how to really care for myself aside from super powerful topical steroids that I have been prescribed.  To add further complication I am also a survivor of a deadly heart attack and the blood thinners make me at risk for bleeding.  I dont give up, but I am really struggling on this one.  Im trying to just take it one day at a time and figure out what I can do.  What do you do when your skin cant tolerate incontinance pads, or clothing, or sweat for the rest of your life !?!I am aware of a clinical trial to use the Mona Lisa touch laser to help with this disease, but the results wont be out until July of 2020 and it is a very small trial.  On the same note- the Mona Lisa Touch fractional laser has been suggested for my vaginal atrophy as well but I will need more convincing before I take that step.  I cant wrap my mind around getting burned again and I cant find studies that back up the claims being made, not to mention my insurance will not cover it.  Any ideas?



  • feckcancer
    feckcancer Member Posts: 189 Member
    Oh you poor thing, i really

    Oh you poor thing, i really feel for you. This is last thing you need after beating cancer.

    Sorry, i don't know anything about what you have got but it does sound similar to psoriasis. I have recently been looking into alternate treatments for psoriasis (treatment is usually steriod creams) and have read that apparently hemp seed oil (internally and externally) & shea and mango butters ( you can also mix coconut oil with the butters) are some of the best things to help with that that so it might be worth asking your doctor what they think of you using those. but if not try drinking the hemp seed oil anyway as that may help from the inside. who knows? maybe worth a try.

    also my doctors have got me on a vaginal moisturiser pessaries (can get in cream form as well) called ovestin 500mcg x1-2 per week for vaginal dryness etc after treatment ( i am 4 years out from treatment like you). maybe this would help you too?

    you might like to try to eat more protein in your diet as lack of protein apparently can contribute to a weak immune system and apparently vitamin C is the best way to boost your immune system and vitamins B6 & E are known to help as well.

    i hope this is helpful to you and you get some relief. 

    Good luck

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Mona Lisa touch

    I had three treatments of the Mona Lisa touch. My insurance didn't cover it and it was $600 per treatment. It wasn't the most pleasant but it was nothing compared to radiation burns and discomfort did not last long at all. It seemed to help with pliability and made the tissue in the vagina less likely to bleed. The gyn that did it said my vagina was so scarred it felt like a rigid pipe in the beginning with some improvement after treatment. It also helped my urinary incontinenc. BUT the changes did not last and it didn't seem to help enough to warrant the cost. You have to keep up with doing the treatments periodically indefinitely. So to me it wasn't worth it. However if I had the condition you have developed and it helped it sounds like it would be well worth it. It sounds miserable and I'm so sorry you have had this happen. I hope you can find relief for these symptoms!

  • Rewriter
    Rewriter Member Posts: 493 Member
    edited June 2020 #4
    Excellent support through a lichen sclerosus Facebook page

    I am 68 and a 12-year survivor of a rare form of endometrial cancer: uterine papillary serous carcinoman. At my 5-year checkup, my gyn-onc found and biopsied a small lesion that he thought might be lichen sclerosus. The biopsy came back negative/inconclusive. In the 7 years that followed, the lesion has not changed, spread, or caused any symptoms. Recently, I have developed vaginal atrophy: stinging and pain when I walk too much or when I am sitting. Although all my symptoms fit atrophy, I did further research on lichen sclerosus--in case the possibility that I had it was contributing to the symptoms. This Facebook community helped enormously, and I suggest that you join. With the right treatment, LS is so manageable. Good luck. Jill