Ep 56 - Lichens Sclerosis with Gynecologist, Dr. Melanie Altas

[@yvonnekneeshaw2784]

Appreciate educating myself on LS. 10-15 years ago I had a biopsy for LS and it was negative. But have suffered many intense flare ups over most of past years and not diagnosed or treated properly. Incidentally I also had at that same time of biopsy realized that I needed pelvic floor help for Levator Ani Syndrome. That totally helped me. Now Jan. 2023 I had a major flare up but once again treated it with boxes of Canesten, etc. I had to wait awhile to see my family Dr so I went to walk in and Dr examined me and asked if I had ever been checked for LS. I said yes! So in chatting with family Dr. She took another biopsy but saw the typical signs of LS. So I began Clobetasol .2% on the monthly regime mentioned here. Been on ointment for 1 month now and did notice a wee bit of decrease in itch, but did have a few days recently of fire red inflamed vulva/even to inner thigh. Might have used too much ointment?? So I decreased the amount some. Once the itch subsided to an 8 out of 10 rather than 10 of 10, I realized that I was also having those same symptoms in the anus (felt like sitting on a ball & a hot poker inside). So I have now been seeing a pelvic floor therapist 2 times. I have felt some relief already and she is teaching SO much. Incidentally the 2nd biopsy came back negative too. I understand that if biopsy is not done in the correct place it can return as negative. I am not prepared to have another biopsy and relying on the fact that both family Dr and pelvic floor therapist confirm LS by my symptoms and also the visual aspects as fusing, clitoral hood issues, white spots, the hardened waxy skin of perineum. If you feel like you might wish to comment on my experience…feel free. I live in MB, Canada and can’t believe my fortune to have 2 amazing pelvic floor therapists where I live. I am hoping to find out if there are any support groups in Wpg and/or surrounding areas. Thanks for listening. I feel happy to share my story as most women I know have never heard of LS or Levator Ani.

[@kathyharmon2093]

I have been diagnosed 9 years, I cannot tolerate dairy ( except hard cheese and butter) no sugar ( I even have to be careful with sugar in fruit, no citrus fruit, nothing with citric acid in it and I limit myself to 1 cup of coffee ( vanilla oat milk creamer) per day if I follow these dietary restrictions I am ok, if not I am asking for a serious flare up

[@SheriHuppert-Hovde-ii8xy]

1¹111111,❤❤1111☆-+±

[@carolreeves1949]

@@kathyharmon2093, thanks for this info. I had no idea diet could affect LS.

[@carolreeves1949]

I too just had a biopsy that came back negative for LS. It came back non-specific chronic vulvitis. Why even do a biopsy if they aren’t accurate…it gets so confusing!

[@naazm6113]

Where do I reach you please?

[@cherylhaskell9830]

Durring recent flare-up, and absense of steroid cream, Burt's Bees' Hand Salve provided complete relief from itching and pain. Alrhough gynecologist instructed to use only water in region, Burt's Bees' Gentle Face Cleaner with aloe provided increased comfort and relief.

[@santinahunsberger1956]

Thank you for asking all the right questions.

[@pelvicfloorproject]

So glad you found helpful!

[@WendyGreenawalt-iz5ww]

I have LS for over 17 yrs and finally got away from the nasty clobetasol toxic steroid cream and use Perrins crème complete and also coconut oil help me so much !Best of luck to all ❤

[@jab4019]

If you have LS you know about it & this leads to more research. Thanks for spreading good information for us who need it👍I follow all LS channels too🥰

[@margaretsomerville2510]

WOW - 74 yrs old and recently aware of the impact of LS. Following vulvar carcinoma at age 40 I experienced the symptoms and went undiagnosed or treated until age 62 when referred to an ONC/GYN aware of LS and steroid treatments. Relief from itch but the LS continued to develop with change color & thickness of skin. Autoimmune conditions began to flare: joint pain, dry eye/mouth, fatigue, bladder and bowel issues, prolapse and ovarian cysts. I was overwhelmed. In recovery from a recent hysterectomy and prolapse repairs.

[@suzazq]

In U.S. I think I can speak for major portion of people who think they have LS or do. Going to a general doctor or physicians assistant is just not feasible for diagnosis as too many of them are only there for colds flu cuts and bruises

[@jnelson508]

Is soaking in warm water necessary to improve effectiveness of Clobetasol?

[@maggieadams7000]

I do this as the ladies in the two support groups suggested soaking prior to using the steroid ointment. This house they went to get down to the layer of the skin that needs treatment.

[@MultiMimulus]

I wish I would have a good gynecologist who would give space for expressing my emotions. It is not the case. She announced it to me very fast, she was very cold. No time for questions. I suspect she don't know much about it. I get my informations on KZbin and...I am on my own. It is very difficult for me. It is very complicated here to get to see a doctor. Most of them don't have a clue what LS is. It took years to get help and to identify what I have. And in my case it comes with another autoimmune disease...

[@215juliusgirl]

If I had known…. If I had gone to the gyno like you are supposed to (if i had insurance)… If I didn’t ignore those weird bruises that wouldn’t go away or the shiny skin or then the insane itching. If I had had a satisfying sex life before 40. If I wasn’t now 43 without a visible clitoris and most of my inner labia gone. If I could convince the insurance company I pay $700 a month specifically because of this, that getting my clitoris unfused is not aesthetic. Is something they should cover. If I could even imagine having sex again because I would never let anyone see the mangled mess I now own. If I had known…

[@carolreeves1949]

Are biopsies for LS always accurate?

[@kathyharmon2093]

@@carolreeves1949 they take actual tissue so I don’t know how they would not be

[@patriciapeever5974]

Interesting

[@carolreeves1949]

Can you have skin inflammation of the vulva, no burning with urinating or pain with BM & have pelvic floor dysfunction pain Without LS?

[@pelvicfloorproject]

It's really hard to provide this advice without doing a thorough history and exam :)

[@maureenhaworth3384]

FR