**Update** Saw Vulvular Specialist Finally! Good News and bad news....

I am happy for you too Karen; how great to have such a well informed specialist....Wish I could find one in UK!

All the best,

Julie

i have a good specialist at only big hospital in Cornwall. I wont put name in case it wont let me post this . she is brilliant and knows so much about LS .

HI Guppy- I thought because I was asymptomatic- no pain, no itch, that it was " in remission",but apparently when she examined me she said there were still areas of active disease. The outside looks good- all pink and plump, labia majora ( part of hair) looks good, but when she parted labia minora she still saw whitish areas that she wants completely gone, also a little part on my perineum.

She mentioned that she saw no anal involvement at this time and any itch or discomfort there was due to hemmerhoids- probably from dietary changes and not enough fiber. But not LS.

She said to use CLOB 2x a day until I see her again in 6 weeks, she wants ALL white areas gone by then. Then we will talk about a maintainence regimen. At my age (47) and not in menopause, she is not worried about skin thinning out. She said if I were 70 and had no Estrogen left then thinning skin would be a concern., but not now.

She gave me a packet of the most up to date research, treatments, comparisons- very informative- 15 pages,! wish I could share it all with you guys.

I will rub the testosterone cream and the steroid on my clitoral area as I LOSE more sensitivity there everyday☹ That's the saddest part to me....

Karen, I'm glad you found a good doctor and it sounds like she knows what shes doing.

Yep, I've lost some sensitivity in the clitoral area, it must just be something that happens with LS because it doesnt look like it has fused over or anything...it is a worry.

karen

Saw my gyn today as well, and received a similar report re small remaining areas of LS. Any plumpness for me is a result of estradiol (for AV), but the clearing of LS is due to Triamcinolone (weaker than what you use) now applied only twice a week. I AM the 70 year old your doc was referring to 😉

I would LOVE to read those handouts you were given. Might your doc have printed them up to hand out or are these pamphlets? If it's the former the sites may be printed on the top of the pages. If so, could you post those (assuming it doesn't get blocked) or PM all who are interested?

Thanks.

Guppy,

I mentioned to my gyn today that I felt a little tightness and tingle around my clitoral area, but she said there was no sign of anything. Probably just dryness, but I don't notice the coconut oil changing it much. It could be before using the hormone cream and the steroid cream the whole area may have felt like that and I was used to it. Thought she would suggest using some of the steroid there, but she said just where the remaining bits of LS are which seems to be edges of labia and perineum. I can't "see" any of it myself really. Just go by feel.

Could it be loss of sensitivity comes with age?

Hi Beverly, I too have been feeling tingling around my clitoral area. It freaks me out this damn disease is now eating up this part of my body. I look at myself every morning and it is always different. I feel like I am trying everything under the sun to manage LS, but it has a mind of its own.

susan, have you mentioned it to your doc? Were you advised the same as I was not to use the steroid on the area?

The estradiol cream (for the AV) has improved the whole vulva so I don't understand this new twinge. I will try coconut oil for a week to see if it goes away. Are you doing anything in particular? I noticed it about 5 days ago.

Have not mentioned tingling to my gyn. She did not advise me on whether I should use the Clob on clit. She prescribed estradiol which I bought and used a couple of times, but have decided not to use it because of side effects. She really had no information for me regarding LS and doesn't believe it is autoimmune at all. I have found more information on this forum than anywhere else.

Hi Beverely,

Well, Karen and I aren't in our 70's so it cant be just loss of sensitivity with age. Sometime you have to accept that some of the symptoms you have are from LS and nothing else.

If you are feeling a strange sensation in the clitoral area then it is likely LS and I would use the Clob. You have to remember that the doctors arent God and dont know everything. I learnt this a long time ago.

I hope you feel better soon.

Hi Susan, usually when you start to feel tingling/itching/soreness in the clitoral area it is wise to use a bit of clob cream, twice a day for a couple of days or so because if not it just gets worse in my experience. I'm one of those that always have problems in that area if I flare and I have found the steroid cream to be a godsend, cos nothing else does the job quite so quickly.

Susan, unfortunately your doc doesn't sound very informative. What is her theory re LS if not autoimmune? Do you go with a list of questions? My gyn drew a diagram of where to apply the steroid (different one from what you are using) when I was first diagnosed and is very approachable re questions. Just went for 3rd visit yesterday.

I can't help but think the tingling may be a precursor of where the LS is about to appear. Any sensations I may have had before I assumed were due to atrophy. Now I am focusing on anything at all unusual.

Assume you have atrophy if she prescribed estradiol. (Sorry, I have a hard time remembering everyone's details). Are you afraid of experiencing side effects from it or did you actually notice some? From what I can tell it has totally reversed my atrophy w/o any side effects. I use a tiny amount at the vag entrance.

Hi Beverly, YOu have encouraged me to try Estradiol again. My reservatiaons are because the clob can thin the skin and cancer could be lurking, so that on top of possibility of cancer with Estradiol, just is too much to handle. I do see gyn with questions, but she has no answers except LS is quite common in her practice.I know that tingling is a precursor of where it is going next and at least it is a clue of where the clob has to go.Really can't take the unpredictability and daily changes every day. I don't understand why there isn't a lot of research on this.

I'm wondering if Asian women have this issue. I gather there are women here from the United States, Ireland and England.

Clob does work, but it can thin the skin so I mix it with Emuaid when I use it.

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 b******s. 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.

Beverly I was being dramatic to them to let them know this is the only drug that works and I have been using for years and they can't cut me off now.

Hi Susan, it is not the always the gluten in the bread that causes the problems.

I have been ill after eating GF bought bread more than once. Through muscle testing I discovered THREE different ingredients that my body reacted to. So, I would make your own bread if you can, its easy and you don't need a special bread machine.

We are being poisoned through greed.

Hi Beverley, you dont need a bread maker. I make my own bread, and I dont have one. I can tell you that I cannot tolerate any bought GF bread it makes me ill. Once you do that you wont want to go back to the horrible stuff in the shops. The problem with GF stuff is that they put loads of sugar in their products for some reason and it ends up being very unhealthy for you.

Well, Guppy, as I said I never end up buying a bread maker because I would eat too much bread. And I am not apt to start making bread by hand at this point in my life. I focus on cooking meals, not breads and never desserts. That takes as much time as I want to spend on cooking and I prefer my caloric intake to be mostly nutritional. I have noticed the GF breads are very sweet. They taste like dessert to me the same way french bread does. Stopped eating white bread about 40 years ago, although I recently read that sourdough has health benefits so I'll go back to that as an occasional choice. I favor variety.

Susan, it worked! Whatever it takes. I was fighting mine re the too high deductible on hormone creams. They sent me a letter in response, but I have misplaced it. Will soon be a moot point as I changed my health insurance co yesterday to one with better coverage at the some price! But that doesn't go into effect till Jan 1.

There's only so much time in the day.

Hurray for you. We gotta do what we girls gotta do.

Hi Beverly

I tried to increase soy and it played havoc with my stomach, apparently it can be an allergen, so I've had to stop. Had hoped for a positive outcome, but it just doesn't work for me.

How old is older? I am 53 and had full set of tests twice, which showed up nothing other than a slightly lower Vit D level, but even that was only just below normal, not worrying .

Bridge, I'm not sure who you are responding to. (I find these conversations can get pretty confusing). If you are asking my age I am 70. LS diagnosis was this year.

Don't remember asking about anyone's Vit D level.

I think I was responding to this one, but it ended up in the wrong place...

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.

I think my response about Vit D was related to the possibility of other things that might be LS triggers. I've had full baseline blood tests for everything - vitamin and mineral levels, blood, liver, kidney, thyroid... I can't remember what else. I was diagnosed with osteoporosis earlier this year (I'm 53) and my doctor wanted to see if there was anything underlying to cause it, as I'm otherwise fit, eat well, don't smoke, no genetic predisposition and walk for an hour daily. My bloods came back as completely healthy apart from the very slightly lower vit D, and of course post meno. So I guess that's informative for LS too. In theory I shouldn't have either, but there you go...

I hope that clears things up. I'm struggling to remember what I was responding to as well.

I have been rereading info. Wondering about similarities of psoriasis and LS. Psoriasis not uncommon, but also no cure or real understanding of its cause. Like with LS "the immune system mistakenly attacks healthy skin cells as if fighting infection...body responds by making new skin cells every few days instead of usual 4 weeks. Those cells build up on the surface forming a rash (plaques)". Clearly interfering with your immune response could be dangerous, but what else could ever "cure" it?

Also read that 80-90% of psoriasis sufferers improved after bathing in the Dead Sea ( x10 saltier than the ocean)! Hardly a convenient location, but bathing in salty water certainly can't hurt. If I detect any BV systems I rinse off with water w/a little salt added. Will make a point of taking dips in the ocean more often. Would probably hurt open sores, but I haven't had any.

Re LS Maintenance Therapy(on clinical advisor):

mometasone furate 0.1% cream 2/3 X a week, less potent, provides greater anti-inflammatory benefits for longer duration compared to corticosteroids of similar potency.

Anyone using that? Think it is very similar to the triamcinolone I use (which is a bit less expensive).

Have found nothing re "flare ups", if usual or preventable. Those are of most concern to me.

Hi Guppy, just reading through this thread and just want to say I saw a gynaecologist a week ago in sheffield for my rectocele. Whilst there I took the opportunity to ask her if she sees many ladies with LS and is it as rare as we think it is. She said that she does indeed see lots and lots of LS patients and it is definitely not a rare condition. A lot of ladies misdiagnose themselves by treating it as thrush. Also as I manage my condition quite well most of the time; she said my vulva looks quite healthy considering I have this problem and took down details of my olive oil regime which, coupled with the occasional tailored use of clob, definitely works for me.

Hi Jill, that's interesting.

I kinda thought it might be uncommon, but for all I know it could be out there in epidemic proportions and the reason we wouldn't know is because it is not something that is talked about.

Maybe more of us should ask our doctors the same question at our next visit.

I have a specialist clinic appointment in a couple of weeks, I always ask 'How common is it?' and they always brush me off and won't give me a straight answer. However as I've never seen the same doctor twice, I keep asking, just in case one of them does...

jill, that confirms what my gyn said about LS not being uncommon. I know I initially read online that it was rare but can't remember the actual statistics. That is probably based on old reporting anyway. Am also not surprised that women don't know they have it. I didn't know.

Went to see the gyn because of BV that came & went. Knew I had AV and just assumed any slight discomfort was caused by that, not LS.

I wonder about the connection between AV and LS. I think it's true all postmenopausal women have AV...it's just a matter of degree. Some get by with moisturizers, some of us need to use hormone cream. I would think all gyns would be trained to automatically check post meno women for LS. Maybe most of us just stop going to see gyns after we stop getting pap smears causing LS to go undiagnosed.

What is BV?

Bacterial Vaginosis. An internal itch, then eventually an odor that would come and go. It seems to be fading (fingers crossed). Gyn had me using hormone cream every night to stabilize PH along with a little yeast cream. That seemed to just make me sore. Have stopped the yeast cream and am using the estradiol twice a week. Seems better, but it may also be due to the weather being much cooler.

I think only one other woman posted also having an odor. I rinse with slightly salted water and it goes away.

Thank you. I think that is what I had but the doctor didn't know what I was talking about when I said odor. It was like a wound odor. I don't have it now and am not sure how it disappeared, but it was not good. I am now using estradiol too every night. Not sure it is helping. I'm also using cannabis/coconut mixture every day. I thought I was seeing a change, but now not so sure.

My gyn seemed to think taking care of the LS would make the "feeling" of an infection go away. I eventually took Flagyl as it has worked for me in the past. After the 1st pill the itch stopped, so I know it was an infection. It's just very inconsistent.

I don't have severe LS symptoms, do you?

Hi Beverly, Not sure what severe is or how bad LS can get. I've lost a lot of my architecture down under. Itching is in control, but can't seem to get rid of white patches and lesions. I'm extremely frustrated.

HI Susan- I finally saw the vulvar specialist here in HOUSTON, Tx. She was very knowledgable. She said my LS was a 3/10. I am asymptomatic- no pain, no itch, rt labia 1/2 size of left, some clitoral desensitization/ phismosis ( fusing). I have two small white patches on inner labia, using CLOB 2x / day until I go back in DEC. She is not concerned about skin tjinning since I am not menopausal and hv plenty of Estrogen. She indicated that I would not be in remission until white patches were completely gone. I avoid sugar, use an emuaid bar in the shower for cleansing, moisturize with emuaid, coconut oil or v- magic, lower my stress, and take about 16 supplements per day. Things are pretty much back to normal.

GOOD LUCK TO YOU!

Susan, that sounds severe-ish! I had it and didn't even know it, so my symptoms pale in comparison to others. But if you were a gyn with a tremendously strong light and knew what to look for, my LS was apparently diagnosable. I just thought what I had was advancing atrophy along with a fleeting vag infection. Very glad I finally saw a gyn and that she was very experienced re LS. Not sure why the steroid isn't working for you. (You are using a steroid, right?) What does the doc say?

karen, do you mean rated a 3 out of 10?

The clobestol has been a life saver, but can't bring back what I have lost and I still get white patches and lesions. Also the clob thins the skin so I use it sparingly.

Have a hard time remembering who is who as so many conversations are started. Have you tried any dietary changes or the borax which is supposed to at least soothe? Sorry you are having so hard a time.

There is an oral immunosuppressant drug, but I think it may be used for extreme cases only.

You said you've had this for years? Pre-menopause or since?

yes, with 1 being the mildest and 10 being the worst- she said I am a 3.

Hi Beverly, I never heard of an oral immunosuppressant drug. Would love to know what it is. I think I have had this for 13 years. I am now 73.

sent you a PM. I know nothing about the drug. Just have read articles .