Lichen Sclerosis GONE after 5 years (Perianal)

Posted , 8 users are following.

I am 30/f with PCOS. I suffered for 5+ years with a progressive itch and irritation that gradually became cracked skin, blood, and itching that was crippling to my mental health and relationship. I was no longer able to enjoy sex, workouts and life in general. I started becoming depressed as I felt like there was no help.

I was inaccurately “diagnosed” over the years with: hemorrhoids, yeast infections, fungal infections, eczema, and the list goes on. I tried creams, wipes, lifestyle change, vitamins, more prescriptions than I can count...yet it persisted and no doctor would stop to listen to me for more than 5 minutes and a predetermined “it’s probably a ___ infection” and a $50 bill that would leave me worse off than before.

I recently spent 20+ hours (here) and on other sites over the course of a few weeks and self diagnosed. I read up on cases that were in remission and went in to my GP with my info, she referred me to a colon and rectal specialist that I was FINALLY able to understand my issue. She prescribed me the steroid 0.1% mometazone fuorate as well as Nicedipine for fissures caused by persistent scratching. I also eliminated dairy from my diet to enable my body to reduce any issues with hormones. After 5 years, the issues cleared up (98%) within 5 days. I cried tears of joy when I realized I wasn’t waking up scratching, avoiding romantic contact and choosing loose clothing just because of this terrible condition.

0 likes, 15 replies

15 Replies

  • Posted

    Oh I am sure the relief you feel is tremendous! It is so frustrating how this seems to be misdiagnosed so often and it takes a long time for some to come to this conclusion – I am glad you found this relief and I’m praying it continues for you! My five-year-old daughter was recently diagnosed with this

  • Posted

    Sorry to hear about so much suffering. If only the medical world would truly know about LS so it can be diagnosed early and quickly. Too many still have never heard of LS and of course that needs to change. We have discussed this before here at Patient UK .

    But glad you now are diagnosed properly and on the way to healing. I would like to encourage you to find discussion on other supporting ways to gradually feel and live better with LS. "An Experiment with Borax" is an interesting one on this forum. Read about diet, I myself have benefitted from leaving out gluten, added sugar, caffeine and limited dairy products for instance.

    I use baking soda baths and rinses interchanged with borax baths and rinses. Rinses after most bathroom visits. And after years of trying to find the right kind of procedure for myself learning to live with LS I now have found a comfortable balance.

    Wishing you well.

  • Posted

    Callie, Congratulations on your success. That's great. I have seen 7 gynecologists to no avail despite a biopsy that was positive for LS. The borax did not help and now the coconut oil is not helping either. Feel like I am out of luck. I, too, avoid doing much of anything although I have no cracks or itching, just pain.

    I have strong steroid and hormone cream but, after 6 months, not any better. Have you or anyone else here tried physiotherapy? It sounded bad the way it was described.

    • Posted

      Pelvic floor physical therapy is extremely important in the maintenance of LS, and it is rare that someone mentions it in this forum... i am planning to write a post about it soon...

    • Posted

      Yes I have looked into that therapy but as invasive as it is and as costly as it is, it doesn't seem a thing to do. Drs. tell me the underlying muscles are fine. Here, it is $2,000 out of pocket. If it helps you, great!

    • Posted

      It depends on where you live and your health insurance... In Israel i went two years to physical therapy that my insurance covered. in nyc my insurance doesn't cover it and the price range per session it $170-350.

      You can also go to one session just to learn how to do it and then continue alone at home. The sessions are to help you start and throughout you learn how to do it yourself.

      You shouldn't be afraid of it being invasive. It's not more invasive than a gyn examination...

      Maybe you can find videos online explaining how to do it.

    • Posted

      Hi Do,

      I have spoken to two different physical therapy offices and they described what they described was very invasive and hour long sessions twice a week for 15 weeks. I knew one person who did it for a few weeks but stopped because of lost work time and pain.. I have to wonder what you had that wasn't invasive. The price range is the same here. My insurance won't cover it either, they did last year, but not this year. Maybe if you posted some general things some of the ladies here would like to know how it helped you.

    • Posted

      It is invasive - but not more then a gyn examination. But i guess we might have different ideas/boundaries that we feel comfortable with. And it definitely hurts in the beginning until it starts helping and you practice at home. It is not a one time thing. You need to keep practicing all your life. In the beginning 3 times a week and later on maybe even just once a week. I'm not a doctor, nor physical therapist, but i had the luck of having a really great care team. And i promise you that it worth the time and the money!

      I will make a formal post about it soon. I don't want to do it on the go, so once i find time I'll write it 😃

    • Posted

      What is the physiotherapy? I have not heard about it before.

      I was looking at a website that showed details of trials and there are quite a few being conducted around using laser therapy. Mona Lisa's touch is here in Australia but not fully teat but my understanding is it is for VA.

    • Posted

      Hi Suzanne, The laser has both pros and cons according to the medical journals I've read. Physiotherapy is manual stretching and manipulation of vulvo-vaginal tissues. It is done by a technician in the office and they usually (here, at least) require 2, 1 hour appts each week for 15 weeks. Not covered by insurance ($$). Some women say it helped them but when I spoke to two different technicians, it sound invasive and painful and expensive. If you have tight musculature or certain kinds of atrophy, it might help. None of my doctors felt I had any of that so I didn't sign up. Besides, who can miss 2 days of work a week?

    • Posted

      Maybe we are talking about different things. I'm glad you've got a good care team. I can't give my supervisor a letter on gynec. letterhead saying I need time off 2 half days week. If it caused more initial pain, how do you go to work and sit for 6 hours in a meeting? If this affected more men, I'd bet they come up with a cure fast.

    • Posted

      eggbiscuit, I'm sorry. I assumed you are a woman. physical therapy for women is through the vagina, and for men it would be through the anus which definitely feels different. sorry for the confusion. i don't know how it feels for men. but for me as a woman with a vagina i had no problem continuing with my day after PT session. and sessions are usually 45 minutes. so... i just scheduled a time that fits in my schedule... there's no need for a day off.

    • Posted

      Hi Do21103

      I am a woman, no problem. Sounds like you have been lucky and I'm glad it has worked for you. The external skin pain that I have would not permit any stretching or metal rods (what they told me and a friend who had it) Seems like a treatment should not cause much pain when it's your skin that's sore. Strangers walking in and out of the room, taking pictures, laughing at you all while you're paying $200-$300 out of pocket 2x a week for the privilege of being humiliated and laughed at- my experience here. Plus I am a public figure. If those I work with and represent found out why I was not at work, that would cost me my job. With traffic, any appt is at least a 1 hour drive each way and no parking if you return. I will keep searching for answers and I'm glad this therapy is helping you.

  • Posted

    i went from it clearing up on the bottom and now i have it on my stomach arms back of my legs and all over my back. you talk about itching if i was a bear i would scratch by a tree. thats how bad it itches. i go to the dermatologist once a month. They gave me a black and yellow pill. So if you see these white spots get to the dermatologist .

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