Per mirror, my vulvar LS is spreading.

Beverly, I sure miss my nightly glass of merlot, I don't mind telling you.

As I'm a very anxious person which I try to control with meditation, yoga and exercise....merlot was a big part of my night time relaxation, watching tv, etc.

I still have a glass of white wine when I go out to dinner and then have several glasses of water and even throw some baking soda in there, too. My TCM MD advised this.

Alcohol makes urine acidic and thus inflames the bladder - or so I've read.

Then problems such as burning and chaffing and even urge and frequency to urinate can start up.

Hopefully, if I drink enough water I can offset the vino.

Lots of people with IC take Prelief which is an anti acid for when they go off the diet and it is supposed to negate the acid from the "no no" diet. (Never worked much for me, though.)

I will probably be the last holdout here in terms of a biopsy.

I will take the advice of my PA as she was a urogyne oncology PA on her last job and she seems like she knows what she is talking about.

I was just beginning to get that aching, buzzing feeling in my clitoris about a month before I first went to her and I thought to myself - "What is going on down there??" so I was surprised and relieved that I found out what was causing the problem.

I've increased my meditation (Peter Renner) and have just begun a new strategy of spraying vitamin E on my vulva when it is dry which is often and after I urinate. Seems pretty good so far. Thanks for your comment - always wise.

Stress and state of mind definitely do impact the problem, especially the pain. I have had 5 drs check my skin, and only one listened to what I said and then asked what I ate, what I did, etc....People should get anesthesia before they cut a piece out. I just think most drs don't care what they do or how much pain you are in. (I am phd not md) Have you tried anti-anxiety meds? They do help me so I have to think some of this is stress and boy could I write a book on it. If I don't get a handle on it, I will be dead before I can collect my retirement.

No, I don't take anything for anxiety as it isn't an issue. I love wine, particularly with dinner, but I've even cut that down to nearly none in an attempt to get my diet trigger free.

But anxiety does seem to be a problem with an awful lot of women and is probably the cause of or at least exacerbates many of their ailments. I made a choice to change my life 25 years ago and have worked only part time in an attempt to avoid excess job related stressors. I also moved to a less expensive area close to the ocean which has always been important to me. It's a lot less stimulating than the city, but you can't have everything and the price I was paying in all respects was just too high. Back then the price of homes was lot lower 25 miles from the city. Now it's unaffordable everywhere causing huge stress for so many people.

So despite these changes I still have LS. Maybe my life preceding the move set me up for it. There's no way of telling.

So do you use the clob cream twice a week all the time

Yes, I use the ointment which is better than the cream twice a week on a continuous basis all the time. The ointment is thicker and has a better consistency that stays longer and that's what the Vulva Clinic prescribed to me. You can't use only when you get a flare-up or stop to use something else. That defeats the purpose of it to do its job. It's a preventative measure as well to keep it at bay and push it into remission. If you stop using it, it comes back. Also, there was a study done and they found that people who were using Clob were less apt to get cancer so it's also used to prevent cancer.

Thanks very much for your cogent response.

A swab - how lucky you are! I will, definitely, bring it up with my PA. I've never heard that before. That would be wonderful.

Do you use the Clob 2 x a day - and how large an amount do you use? Also, about the Premarin - is that a rub on cream type thing or with an internal applicator?

Good for you for having things under control!

You are quite welcome. Yes I was lucky and I hope they do the same for you. I'm sure they can detect cancer cells also with that, but you can ask them about that also.

After an initial process I quickly went to Clob 3 times a week, reduced to 2 times a week after 2 years. But they emphasized and stressed only a small pea size amount. I use a slightly smaller than pea size. You don't need very much. Just enough to coat and gently rub slowly counting to 10. And ask them to show you exactly where to rub. The Premarin is both a rub on cream and with an applicator for internal use. I use it with the applicator twice a week on alternate days to the Clob. Because of dryness, she allowed me to use it as a rub on cream externally only twice a week extra. It works out well because I get Wednesdays off and the weekend. Sometimes I use the Premarin rub on externally on the extra days or I also use Emu oil which works quite well. But I hear that olive oil and coconut oil works as well also. I've used coconut oil and it's fine. My regime is Monday Clob, Tuesday Premarin, Wednesday off, Thursday Premarin, Friday Clob, Sat-Sun off.

Hope that helps and the best of luck. Please come back and let us know how you're coming along. I would be interested to know what happened.

Wow - I'm so impressed -you really have it down to a science.

I have extreme dryness - I bet I should be taking more estrogen. I just use an estriol cream I got from Amazon - pea shape 3 x a week. I have a feeling I need a LOT more than that.

I've not tried the Emu oil - I'll have to check Amazon for that.

I've heard good things about it. The only thing about oils is that they come off so easily.

A lot of my problem is that I have so much chaffing so today I tried something new - I took a round cotton pad and dipped it into my Bee Friendly vaginal moisturizer, folded that and inserted it by my vagina - to offset the chafing when I walk plus it keeps the area fairly well moistened. Maybe one problem solved?? Time will tell.

Snappy, I've been thinking in the opposite direction - of opening things up down there to the air - going commando, etc as my LS seems worse from a month ago - a time when I was still wearing my beloved 3/4 yoga pants. They aren't super tight as my running tights are but they fit snugly from waist to mid calf and I think that lack of "airing out "caused the LS to grow.

Now I've gone with loose crotch and loose legs so the air can get up there as much as possible.

I've put all my tights and slim leg pants on the OTHER side of the closet!!

Yes, I've stained a satin pillow, and my robe and bed sheets so now I'm just laying on down a towel where I sit but if I feel better - I don't care!

I even went running by the lake today in my baggiest running shorts - commando! I was quite nervous but I checked different angles in front of the mirror and it seemed good so I did it! Wow -never thought I would do that - at age 75 yet!

You are so right about a wealth of information here.

I was looking through my online public library catalogue today and didn't see one book on LS. My husband said it would probably be outdated anyway. This is my main avenue for information and I so appreciate the great women who participate here and share information- so valuable for these "mystery" health concerns.

You are SO correct about "its a battle everyday."

I have AV, too, do you? Two things to worry about and figure out treatments that work....that's the hard part, isn't it? You win some days, others not so much.

I keep detailed logs of everything from how much water I drink to my ongoing difficulties with constipation, what meds or whatever I take everyday including my mood, etc.

Some how I am going to solve this puzzle so I get my old life back as close to normal as possible! I hope that for everyone on this forum!

Hi Ro, I have AV as well. I did go through periods of not having any issues but can't figure out what I was doing differently. Probably nothing. Because there is no cure for LS, I work very hard to just take it day by day and deal with the changing landscape every day. I do lose my mind from time to time out of frustration though.

susan and ro, I have both AV & LS and tried something slightly different last night. Applied my new yin oil ( from acupuncturist) first followed by the clob. Seems more effective in terms of today's comfort level than using just one. My gyn had suggested using vaseline and the triamcinolone together when I was using that steroid. I think I will continue with this combo and use the hormone cream on 4 other nights as the clob isn't effective enough using it twice a week and the hormone cream causes soreness of its own used every night. The yin oil has chinese ingredients similar(?) to estrogen apparently. You can use it once on its own during the day as well. Has an olive oil base.

test

Sounds interesting, Beverly.

I often get excited about a new product, too, hoping it will be the magic elixer. So far - no luck but I hope you found a "good one!" I will have to ask my acupuncturist about it.

How does you LS manifest itself - itching? Pain when moving about?

I really have no symptoms with it except a dull ache if my pants are too tight - lol - that was the old days. Now I'm "baggy" all the time but I worry as its not something I want to have and I want it to go away!

What do you think of the Borax solution - or is that for the AV - sometimes I get them confused!!

I just wrote you a reply but it wouldn't "take" so here is attempt #2.

Now for me the AV is 100 times more misery inducing. Yikes its like my IC was back without the hated pelvic pain, though. Thank God for that! Sometimes I will have a short string of good pain free days - as you say - I have no idea how they came about but then they will come to an end and I have no idea what I did wrong. I always blame myself for eating or drinking a dietary "no no" or got stressed out about some dumb thing around the house, etc.

Sometimes I want to cry but I tell myself - a good thing is it DOES change - maybe tomorrow will be a good day!

I have AV as well and the Estrogen Premarin that I insert with the applicator helps me a lot with that. It keeps the area supple and not tight. I insert 0.05% on the applicator and also apply it introitus which means around the opening twice a week. It works very good for me.

Ro, I don't think the oil is magical in any way. Using it by itself wasn't any different from most other lubricants, though it does have the estrogen mimicry factor. But using it with the clob did seem to make me more comfortable the next day. Could have been a coincidence. Last night was a 'hormone cream only' night so I have to put this experiment to the test over time. The yin oil was only $16 so it wasn't like an $80 prescription experiment. (I still have yet to find the missing estriol tube. I try not to think about that one!)

I'm the one with the stealth version of LS. I have no agonizing itch. Mostly the symptom was the buzzing feeling which began AFTER using a steroid for 6 months & the gyn said I was doing great. Apparently not.

Now mostly discomfort with the clitoral hood which as far as I know could be disappearing . I really can't tell visually. The labia that had a bit of LS on the edge has gone.

Also have the occasional internal itch which sent me to the gyn to begin with....not LS symptoms. Supposedly that itch has nothing to do with LS. It's like fighting with a ghost.

The AV also causes some minor discomfort, but it's better with the hormone cream. Haven't worn tight pants in a while now because of both issues. Gaining belly fat hasn't helped, but I know we need fat to produce estrogen so....Bought some very inexpensive pants at Kmart that aren't tight but have some stretch. Fashion plate NOT, but I'm old enough not to care!

i'm having a pretty good day. I ascribe that to my daring move of bumping up my pea shape estriol cream last night to olive shape...just a wee bit more.

Estrogen makes so much difference and I won't get anymore until Monday.

From some forums I've seen, women with AV are often in a pitched battle with their doctor's about their estrogen dosage with them wanting more and the docs trying to put a limit on it fearing too much may lead to a cancer dx. Its great stuff but powerful. 'Rather be safe than sorry.

Do you take any progesterone?

My acupuncturist MD said I should be taking it in a vulvar cream form.

Hmmmmm...confoosing!

What's AV and IC stand for

All- how do you know these creams and oils you get from naturopathic practitioners are safe? Never heard of yin oil.

Also, are you having burning pain in the vulva, to anus region?

What pain meds help you? Or, do you not take any? A shot of liquor does help, probably psychological but does.

I trust my acupuncturist. She wouldn't carry it if she had any doubts re purity etc, I'm sure. She's American and very bright. In the past she prescribed a chinese herbal tea for uterine fibroids and they shrunk, thereby eliminating the need for a total hysterectomy which an overly aggressive young oncologist tried to convince me I needed. (There was no way I was buying that one). My gyn at the time refused to accept that the herbs had anything to do with the fibroids shrinking.

I don't have burning pain. I'm the one with "stealth" LS. It just creeps along with little to no obvious symptoms. What discomfort I had initially I thought was progression of the atrophy; the steroid and estrogen helped that. Now, despite using them I have some new minor discomforts (maybe caused by the meds, who knows) that I can certainly live with. The issue is more the disappearing architecture despite moving on to clob, so I can't just ignore it. I'm just flummoxed by all of it. Western medicine hasn't a clue as to what it is, so I'll try alternatives.