Question

karen, once diagnosed how were you treated?

i was given a prescription for CLOBASET not much help with it then we tried vegasam ( I think) then we tried another cream, then lydacaine. She us genuinely sympathic and has said they try this and that and some respond to this abd some respond to that I have yet to find that MAGIC POTION

thx for your interest KAREN

BY the way what was it that you were treated with that helped you.

patricia, I just saw that I hadn't answered you... assuming you were asking me and not Karen. I use triamcinolone steroid which is milder than Clobetasol. My doc believes in more consistent use of a milder steroid than overdoing it with a strong one. Seems to have worked for me though there are still some small remaining areas. I probably could be more consistent at using the steroid. Often don't think of it twice a week. The hormone cream for AV is a small amount every night so it's more of a habit.

self- treated for 6 weeks after diagnosis with emuaid, perrins and a moisture barrier cream. cold washcloth blotted tender skin after each pee, then moisture barrier applied. Followed low oxalate diet, cut out sugar and alcohol while healing. at six weeks prescribed CLOB, used 2x a day for 6 weeks, added, SUPPLEMENTS, lowered stress and saw an Ls specialist.

Shower with cetaphil or emuaid bar and avoid bubble baths ( only baking soda or epsom salts now) , and am in remission ( no signs of active disease), no symptoms, skin is still pale and will probably always be, but no itch, no pain, no irritation now.

HI ALEX,

I HAVE THE SAME ISSUE. I AM USING CLOBETASOL TWICE A DAY AND RINSING WITH BAKING SODA MIXED WITH WATER AFTER URINATING. HOPE WE CAN GET RELIEF SOON.

My first flare up lasted from August to March. Seriously painful. Again just burning. But burning in the anus and vagina.

The doctor thought I had vaginal psoriasis until she sent me to a dermatologist.

Dermatologist knew right away what it was.

I overused the clob at the beginning because I was just so desperate to get rid of the burning which made it worse. So you really need to only use it twice a day.

I have the odd mini flare up now and the clob seems to fix it.

I find every bowel movement aggravated the situation.

On a flare up I use the clob twice a day.

For maintenance I only use the clob twice a day for only 2 days a week.

Wonder what the difference is between the two. Did the dermatologist say?

I have been educating my girlfriends on the subject matter and are shocked that this is a "thing".

Considering how many people are living longer no doubt it will become less rare. My doctor told me mine was caused by low estrogen, so.....

Its good we mention it I think as more women become aware. One gp i saw has never even heard of it so how she recognises it or wrongly diagnoses who knows. My daughter know about it so that when she is older as mine is post meno related she will know if she has the same problem what it is x

Yeah oestrogen related as well, slam having periods but I felt healthier with them

my GP has also never heard of it, let alone be able to diagnose it! ts interesting that its linked to low estrogen, because i am 31 and so still menstruating so i would be surprised if i had low estrogen

It was a female gp and I asked 'is it Lichen Sclerosus' and she said 'I have never heard of it what is it' I hope nurses know of the condition as this would be spotted at smear tests

my nurse had heard of it when i went for my smear test last month when i informed her of my diagnosis before she started, but she didn't know what it entailed. she didn't inspect the area though and a smear test is quick she definitely wouldnt have noticed mine, even a gynacologist said it all appeared "normal" down there! the private dermatology consultant who diagnosed me said that unless a gynaecologist has a specific interest in vulval skin then they wouldn't recognise it (this is when i was on waiting list to be seen by NHS gynaecoligist and she said not to bother!) so to me it does seem like there needs to be a greater understanding of what to look out for so women get the right treatment quicker

They think it's estrogen related because it's most typical in postmenopausal women and younger girls, but clearly women your age get it too, hence there is no one answer. My gyn said "in your case it was caused by lack of estrogen".

Who knows? Maybe if you have a weakened immune system you are more susceptible and without estrogen it makes you more susceptible to that particular disease.

What's odd to be is it doesn't go away. I don't even catch colds yet I now have LS.

I'm amazed there would be a gynecologist who would see a patient complaining of discomfort, skin tears, or sores, etc and not conclude something must be wrong and at least crack open a book or google (just like the rest of us do). Any doctor I have ever seen seemed to have a broad knowledge of a lot of the body. If they encountered an issue they felt they were not up to diagnosing they refer me to a specialist.

When I informed my GP that I had been diagnosed with LS, he seemed quite knowledgeable and rattled off the categories of steroids and their strengths.

When I told him I wanted to have a thyroid test added to my blood panel he did not question why, as he clearly knew .

Not sure if doctors in New England are more knowledgeable than your average doctor in the US or compared to doctors in the UK. Are these country doctors that you ladies are seeing who have no awareness of LS ?