Seeking GYN recommendations for Lichen Sclerosis Dx

[Anonymous]

Hi, we're in Arlington and I'm looking for a GYN for my daughter. It would be her first ever exam and I'm reasonably sure she has Lichen Sclerosis. Ideally, someone female, kind, knowledgable.

[Anonymous]

Any GYN will be fine.

[Anonymous]

Any GYN will be fine.

While that could possibly be true, I suppose I should be more clear and ask for people who have the condition and which specific GYNs they have found to be especially supportive/helpful.

[Anonymous]

My daughter has seen Lucy Treene at Dr. James Simon’s practice on M St NW. She is so kind and patient, and she has a lot of experience with this and similar disorders. I highly recommend finding someone with a lot of experience diagnosing vulvar conditions since LS is often misdiagnosed. A general gyn might not be the best bet in this situation. Best of luck.

[Anonymous]

My daughter has seen Lucy Treene at Dr. James Simon’s practice on M St NW. She is so kind and patient, and she has a lot of experience with this and similar disorders. I highly recommend finding someone with a lot of experience diagnosing vulvar conditions since LS is often misdiagnosed. A general gyn might not be the best bet in this situation. Best of luck.

Thank you so very much for this response. I've messaged Lucy Treene via her website form.

[Anonymous]

Dr Vaz at George Washington was amazing but she left suddenly and I don’t know where she went. She’s still listed in the GWU directory. My mother raves about her and saw her for this exact condition.

[Anonymous]

Maybe also consider a dermatologist.

[Anonymous]

You don’t mention your daughter’s age, but lichen sclerosis is extremely uncommon in teens.

[Anonymous]

She’s an older teen and has been tested for every STD you can think of. All negative. The pediatrician was stumped and the only thing she could come up with was LS. At the time the doc didn’t think it seemed to be good fit for a DX and I didn’t think it to be a good fit either, so it remained a very infrequently occurring mystery. Coincidentally, I’ve been doing some reading about auto-immune conditions and came across LS and gave it more consideration. Im starting to believe that it what it is, but of course, we’ll have the gyn render an opinion and a derm as well.
Im pretty sure I read that it can occur as children enter puberty when their bodies are dealing with the surges of hormones. Either way, we’ll see what the gyn has to say. Appointment on the very near horizon.

Im open to whatever source you can share regarding the limitation of younger people not really getting LS.

[Anonymous]

My mother had it, in her mid 70s while also being treated for cancer (of the head and neck). She was treated in the UK and they basically excised it surgically for her. I wrote about this on DCUM a few years ago when LS came up and was told by a US medical person (posting on the same thread) that this was highly unusual in the US as a treatment. It fixed it for her though.

[Anonymous]

Anonymous wrote:Maybe also consider a dermatologist.

+1. My gyn actually recommends I see my derm for my LS treatment.

[Anonymous]

Anonymous wrote:She’s an older teen and has been tested for every STD you can think of. All negative. The pediatrician was stumped and the only thing she could come up with was LS. At the time the doc didn’t think it seemed to be good fit for a DX and I didn’t think it to be a good fit either, so it remained a very infrequently occurring mystery. Coincidentally, I’ve been doing some reading about auto-immune conditions and came across LS and gave it more consideration. Im starting to believe that it what it is, but of course, we’ll have the gyn render an opinion and a derm as well.
Im pretty sure I read that it can occur as children enter puberty when their bodies are dealing with the surges of hormones. Either way, we’ll see what the gyn has to say. Appointment on the very near horizon.

Im open to whatever source you can share regarding the limitation of younger people not really getting LS.

My mom has it (a long time to getting the dx). My mom fits the typical profile, in that she had multiple longstanding autoimmune conditions and it set in after menopause.

I thought I had it at one point in my thirties because of persistent night itching, pain, and what seemed like thinning membranes (I also have some autoimmune conditions). My doctor said that even though my mom had it, the odds of me having it at that age were low and she had not seen it in younger women. I can't remember much about it now, but at some point I began to connect the episodes to wearing leggings, especially to not changing out of them fast enough after exercise classes. I also eliminated the use of all pads/pantiliners in case it was an allergy. I can't say for sure that it was related to either but it resolved completely.

[Anonymous]

I got in late 30s-it’s more common in tweens and post menopausal but it’s not rare at all for it develop not in those age groups.

Mine was diagnosed by biopsy, treatment from my regular gyn (ultra high potency steroids topically) works great. I do have another autoimmune diagnosis and interestingly although both took a while to be diagnosed the symptoms of each started within three months.

[Anonymous]

Anonymous wrote:

Anonymous wrote:She’s an older teen and has been tested for every STD you can think of. All negative. The pediatrician was stumped and the only thing she could come up with was LS. At the time the doc didn’t think it seemed to be good fit for a DX and I didn’t think it to be a good fit either, so it remained a very infrequently occurring mystery. Coincidentally, I’ve been doing some reading about auto-immune conditions and came across LS and gave it more consideration. Im starting to believe that it what it is, but of course, we’ll have the gyn render an opinion and a derm as well.
Im pretty sure I read that it can occur as children enter puberty when their bodies are dealing with the surges of hormones. Either way, we’ll see what the gyn has to say. Appointment on the very near horizon.

Im open to whatever source you can share regarding the limitation of younger people not really getting LS.

My mom has it (a long time to getting the dx). My mom fits the typical profile, in that she had multiple longstanding autoimmune conditions and it set in after menopause.

I thought I had it at one point in my thirties because of persistent night itching, pain, and what seemed like thinning membranes (I also have some autoimmune conditions). My doctor said that even though my mom had it, the odds of me having it at that age were low and she had not seen it in younger women. I can't remember much about it now, but at some point I began to connect the episodes to wearing leggings, especially to not changing out of them fast enough after exercise classes. I also eliminated the use of all pads/pantiliners in case it was an allergy. I can't say for sure that it was related to either but it resolved completely.

Sorry if this is TMI but I posted above. I did not have the distinctive white patches. If she does I think the odds would be higher.