EDS and LS?

[moos]

Hi there,

I was Dx with EDS Type III back in 2013, and have been in the recent years had Lichen Schlerosus symptoms .

My gynae initially said it was eczema but then said I should seek a specialist gynae with a microscope to do a biopsy as LS can cause squamous cell carcinoma or vulvar carcinoma.

From what I’ve researched , LS is an autoimmune connective tissue condition . Just wondering if anyone with EDS has also been Dx with LS ?

[OldTed60]

I have both. But I also have multiple autoimmune diseases - hypothyroid, Sjögren’s and systemic sclerosis so my LS is well controlled with immunosuppression. I was only recently diagnosed with EDS, aged 60, and not sure what type but suspect may be classical as my skin is more affected.

[Barnclown]

yes, but my Dx is hEDS (previously hypermobility type 3). Like OldTed am also Dx with a host of early onset AIDs which started with infant onset lupus. Am 70 this year & my AIDs went without immunomodulation meds except during emergencies until my 50s.

My LS was Dx 20+years ago & over the decades since I’ve seen the science on LS finally shift to considering it an AID. But my gyn oncologist thinks my LS is most likely secondary to my Sjogrens & scleroderma-like manifestations…he once said to me: you know it may not be LS at all. I replied: sure thing!

The worst affected part is my clitoris area, which the gyn surgeon decided not to biopsy because it’s such a fragile area. So my LS Dx is based on history, clinical examination & positive response to LS treatment plan. My perineum has always been very fragile too, & in menopause it became prone to tears which were very painful, but have almost totally stopped since I started the daily antimicrobial emollient bidet bath prescribed by my gyn.

So, thankfully, my LS is well modulated on gynaecology’s long term prescrip combined treatment plan: daily ‘emulsiderm’ antimicrobial emollient bath in bidet + the ultra strong topical steroid ‘dermovate’, aka clobetasol, ointment (am allergic to the cream) every other day, which I do have to stick with conscientiously. Also, I follow all the recommended self help guidances: never use soap down there, wear breathable fabrics etc

Hope that’s not TMI…hope something in there is helpful to you &/or others 💞💞💞💞 Coco