Guppy, as an atheist I’m the last person to think any human is a god 
But as my doc is in her 50s and sees several women with LS a day she surely has compiled more info than any of us, so I am very interested in what she has to say. My plan is to use coconut oil for a week and if that does nothing will try the Triamcinolone, but will inform her. I figure she & I are in this together. She has a very open mind which I appreciate.
She did warn me about the essential oil product I tried and was correct. It may have worked for the woman who created it and is selling it, but it sure burned me to the point I could not tolerate it. Also asked her about julva cream. She said most ingredients sounded good except the alcohol (burning) but was unfamiliar with the rhododenron cream. She seems as interested in new treatments as we all are.
I suspect that as I seem to have fewer problems with LS compared to what people here report I may not need or be able to tolerate harsher or stronger remedies. Time will tell.
susan, this is all new to me as of this summer. I knew I had atrophy since initial diagnosis 3 years ago. My only symptom was painful exams. Decided against using hormone anything as my sister was dying of estrogen dependent breast cancer. Went to see gyn beginning of summer because of BV that came & went. Gyn diagnosed me with LS as well as AV! Bit the bullet and started using estradiol as there is no other option. So far, so good. I do wonder if I had used hormone cream 3 years ago if I still would have developed the LS, but that is unanswerable. Just trying to keep it all from progressing.
I put the estradiol at vag entrance. No LS there so I don’t use the steroid there. Gyn showed me specific areas where to apply steroid.
Are you wondering about Asian women because they eat more estrogen containing foods? I believe on the whole they have fewer menopausal issues, though those in the US may have the same rate as us.
(I am in the US).
Yes about Asian women because of the benefits of estrogen containing foods. Soy being one of them I believe. Would be interesting if we get a response to this query. I’ll also google it.
I try to eat tofu at least once a week, but that’s about it. Drink soy milk along with other dairy alternatives. Am trying to make more of an effort now. Do you eat any?
Hi Susan, LS thickens the skin and so the steroid counter balances it. Mixing it with the Emuaid is diluting the strength of it which is okay if thats what you are aiming for but you might not get the results that you want thats all.
I know, at night I put in on full strength and during the day if I need to do several days of maintenance, I dilute it. It’s all experimentation.
HI BEV- The handouts from the DR are from a website literally called UPTODATE/ VULVAR LICHEN SCLEROSUS
but I think you need a Dr to sign in, it’s restricted in some way.
I’ll see what I can find out for ya’ll to get access to it
karen,
The first one that came up required signing in, but there is another that says “Patient Education” that is accessible. Thanks! I’ll ask my doc if she can get the other one, unless it’s written in language I could never understand.
Well, turned out to not be anything beyond the basics. Maybe that means there’s nothing new? Unless those 15 pages have a lot more info that the couple that came up. My gyn gave me a printout when I was first diagnosed. Was only a couple of pages. I will look for it to see if it can be found online.
Finally found it under a huge pile of papers. Same info really, but from Mid-Charlotte Dermatology.
https://nebula.wsimg.com/6af715958bab3cc157621226fb4582d7?AccessKeyId=B78439C8610A1092E451&disposition=0&alloworigin=1
In case my link never gets thru one thing that was mentioned in the handout I was given is that older women with LS generally also have an underactive thyroid so tests should be done yearly. My gyn did not order one, but I asked my GP to order one when I went for my yearly visit.
Hi Beverly, I am not on any special diet plan, but try to stay away from eating as much wheat products as I have in the past. I love my bread. I now eat rice crackers with my coffee in the morning and occasionally eat a sandwich. I am not into sugar, so stay away from that except when I have a cocktail. I am lactose intolerant, and sometimes put soy milk in my cereal.
Hi Beverly, are you seriously saying that your doctor sees SEVERAL women EVERY DAY with LS, because I think shes either exaggerating or LS is far more prevalent than we thought.
The next time you see her you should ask if she has seen a dramatic increase in patients. I am curious about that.
Gup, Well, I surely don’t think she was making it up. She said she gets lots of referrals (she specializes in menopausal issues; didn’t know this when I first saw her). I made a comment about LS being rare and she said it wasn’t so rare and sees several women a day. Have no idea how many are local (I live on a cape basically in the middle of the ocean). Didn’t ask her if these were local women or if they were coming from far & wide.
I won’t be seeing her again for 6 months as this appt was the 3rd since the end of May. Seems to be following basic protocol. I am improving and there’s nothing more to do but continue with estradiol for the AV and the steroid on the last remaining bits of LS.
My issue now is getting rid of the BV once and for all. She prescribed the metrogel I had requested, but the tube was well over $100! As the flagyl in pill form was only $7 I was shocked & did not pick up the gel up at the pharmacy. And that was the generic price! I will be switching to a new medicare plan in January. Just saw to that today.
Hope to hear back from the office as to if there’s a compounded version of metrogel. (I use a compounded version of Estrace as that would have been $300 as I recall.)
susan, that sounds similar to what I am doing re wheat. I add gluten free to dilute my wheat intake and have for years. Am addicted to blue diamond rice crackers so it’s not a hardship! Bread is a different story though. I keep considering getting a bread maker, but know I would overdo it. Tend to use lavash type bread for roll up sandwiches.
I don’t buy sugar and really don’t like overly sweet things. Dark chocolate is my treat. But for protein I rotate meat, fish, soy and chicken. Am also lactose intolerant, but find since drinking kefir daily I can better handle some dairy. (Can’t say enough about kefir for digestion!)
My insurance company didn’t want to pay for my Clobestol. I threatened to kill myself if they didn’t give it to me as that was basically what is prescribed for my condition. They gave it to me. The insurance companies are such bastards. A few years ago there was no problem getting it.
Thanks for the tip on Lavash. I’ll give it a try.
Holy Cow! Assume you are in the US? A few years ago the ACA was not under attack. The insurance companies are probably frantically trying to position themselves to continue to make as much money as possible. If the government will no longer subsidize poor people the insurance co’s will lose $$. All I know is the tier coverage situation is now very bizarre. However the pharmaceutical companies seem to be ruling the lives of everyone who needs to take or use a med with huge increases in cost. Greed prevails!
What I found very strange was my steroid ointment cost around $11. Not that I am complaining!
$11. That’ terrific! Mine was much more than I spent a few years ago and the tube is now half the size. It is all greed. Wonder which way the wind will blow come November. hopefully things will change.
If they don’t I will kill myself!!! 
How much more can we take? Talk about bad for your health.