LS Wrinkled Labia

Might just be atrophy. What has your doctor said? My atrophy seemed to morph into LS at some point over a 3 year period. But I seem to have a mild case compared to what women report...at least so far. Am responding pretty well to the hormone cream and the steroid.

Are you using hormone cream, samantha?

Hi Beverly, interesting as I seem to have a mild case too. I’m using the protropic, borax spray, emuaid max and coconut oil and mostly have any symptoms under control except like this. I’m not on any hormone treatment - I have a soy based supplement I started using when hot flashes started last year. I’m off the vulva clinic roster as far as they are concerned I’m under control. 

What is a protropic? Do you mean probiotic? I tried a probiotic for a month hoping to ward off a fleeting bacterial infection, but it did nothing.

I went through menopause with very few hot flashes. Issues didn't begin till 15 years later. Atrophy, then LS 3 years after that. Been using steroid and estradiol for a few months. Atrophy much improved, LS seems better, though it was never bad. But stuck with fleeting BV. Took flagyl which worked, but problem returned. Trying to avoid killing off good bacteria, but may need another round soon.

Have used coconut oil for years, doesn't change anything; just moisturizes. Haven't used emu. Did send for natural oil concoction that burned badly. Don't recommend that one!

I use a mild salt water rinse when BV symptoms return. Haven't tried borax as I tried baking soda and that was too drying. 

Hi Beverly,

protopic also know as tacrolimus is an immunosuppressant- I use it instead of clob as clob gave me blisters. It’s a never form of ointmentbto clob and used less often due to the cost in comparison. It has been lined in one study to a rare chance of cancer, but for me I take the view that as has clob and as has LS too!

i had a hysterectomy about 6 years ago, kept my ovaries, but I think this is what sparked the LS as the itch / pain started after this. 

I like the the coconut oil just for the moisture. I tried ozonated olive oil and had a bad reaction and found emu oil drying.

strange how we all react differently.

ill investigate estradiol if the pharmacy sell it. Thanks

Hi Beverly,

is estradiol a tablet or cream?

thanks

Estradiol is the active ingredient in Estrace hormone cream. With my less than great insurance coverage, it would cost me hundreds of dollars a tube, so I have it made up by a compounding pharmacy for under a hundred. It has been very effective for the AV.

The steroid I use for LS (triamcinolone) is not as potent as clob. I was doing fine till a bout of diarrhea. Must have opened skin which then caused a bad reaction to the steroid. Went back to it after almost 2 weeks and no problems. Use it now only twice a week. Only issue is slightly rough perineum. Faint white line seems to have disappeared.

Some speak of flares, blisters of LS, but I didn't even know I had it till exam. My complaint was fleeting BV which has returned despite taking flagyl. Rinse with slightly salted water for that, but want it GONE! Has been almost a year now. Have never experienced this before. Gone for 5 days, back for one, gone again, etc. Gyn says uneven levels of estrogen cause fluctuations of PH which causes the BV so am using the estradiol (with yeast cream added) every night now (had been using it only twice a week).

Have no idea what the future will bring re LS. Can only hope steroid will control if it returns. Estrogen cream will have to be forever, I guess, but maybe I can use less often. I find it a bit irritating now.

Also fingers crossed no UTIs that other women suffer with. 

Thanks I’ll investigate the hormone cream and see what I can buy here.

sounds like the steroid is helping which is good. I feel the same for the protropic also 2x a week.

Wow, I’m similar had a pain I wanted investigating in one spot and got Gyne to put iodine on vulva area which showed up 4 areas to biopsy which you couldn’t really see with naked eye and wham bam LS! Wouldn’t mind, non of the areas was where the pain was from (no pain now).

i think we all will find something that works for us, hopefully going forwards and not backwards x

 

laura, no steroid cream or ointment? The hormone cream does take care of the AV, but if your skin has been affected by the LS I think you are supposed to use steroid cream to get it back to normal. Maybe you just have the beginnings of it? Did the gyn say what he saw that made him conclude it was LS? 

I guess I'm a demanding patient, but I would call that doctor back and ask how he concluded you have LS. What the heck...he got paid. You may as well get your money's worth. can't believe there are such unprofessional doctors out there. I was diagnosed by a gyn. She spent a lot of time examining, showed me (awful) pictures and gave me a copy of a medical article on it. She is neither dismissive nor hysterical. So far I like her. 

'She is neither dismissive nor hysterical. So far I like her.' 

That's funny as it sums things up nicely.  

Hi Laur, yep, its a bit discouraging with how we are treated sometimes by the doctors, but dont despair you found this site and we are all in the same boat and will try to help if we can.  I am also surprised you wasn't given a prescription for the steroid cream which is necessary if you have flare-ups. 

Good luck with the Dermatologist.

I'm sure we all have MD horror stories! My first gyno was a man. After months of burning labia, he did a biopsy.  His RN called to tell me it was LS and that if I used the RX for clob, all my burning would be gone in 2 wks. HA!!! Also no literature or discussion on the topic. Needless to say, I dropped him for a female.

Hi, yes it's appalling. My Gyno took photos of my Vjay, then only deleted three out of the four pictures that she had taken...go figure!

Why the pictures in the first place? If for a baseline then I imagine she would want to keep one for comparison. I often wonder how doctors remember anything in order to conclude "things are coming along nicely". Obviously they write notes, but I think a photo would be very helpful.

He said it was “shiny white” and my skin would harden to leather. That was all. 

I started crying , he sent a nurse in with tissues and she said I was lucky it wasn’t cancer and told me I could go home. 

I was pretty much confused when I got home. I was calling it something else because I’d only heard him say it once. 

I found it on my online record so that I could start to research. 

I like my Dermotologist. I don’t know if she really deals with these cases, but she will advise me on where to go if not.

And I am not taking the estrogen btw. So far all I do is not use soap and put vitamin E oil when it itches too much.

I sure am glad to have all of you to learn from and commiserate with! 

Good lord!! What country are you in? Are you close to any large city? There has to be a more knowledgeable gyn or GP than that! The gyn could have looked it up himself if he didn't know about it. I find that frightening. And why would the GP be telling you you looked fine? Frankly, I would tell her about the gyn's diagnosis and ask her why she thought it looked fine. If they are screwing up they need feedback before they endanger people.

I have been reading as much as I can, but then feel as though I have to just walk away clear my head. It seems absurd we have to be figuring this out on our own. I am continuing with the hormone cream and the steroid. I have never had flare ups. Just AV that was causing a drying and shrinking of the area. Was not even aware of the LS, but I do feel much better using both creams.

Have been researching the borax theory, but it all seems based on nothing but hearsay. Found a natural cures site today, but the person who writes it has no credentials that I can see. However, people say they have had much relief from it. Have you tried that? Search for it on this site if you don't know what I am referring to. I have not tried it, but I am having none of the symptoms.

How old are you? Are you past menopause?

Try to relax. Let us know how you make out. 

I’m in a big city in California. I have crappy insurance though so I have to go to who they tell me. I’m 64 and looking for work so I can get better insurance. Having no luck in my field or in anything new. 

Anyhow, I went back to my GP who is seldom there, he uses nurse practitioners ( she examined me 4 times) anyway she has left his office so I couldn’t tell her what she missed. 

I’ve only looked once and didn’t see the white. I wear glasses and can’t see in the shower. I’ll bring a mirror into my bathroom so I can look again. I can feel that things have changed. 

Lately I haven’t had any itching except in my butt , but that’s from hemeroids I’m pretty sure. I’ve had them on and off since childbirth. 

I haven’t made my dermo appt yet as I just passed a promising phone interview and they are setting me up for a second. I’m supposed to hear tomorrow when that will be. 

Good thoughts for us ALL!!

What is AV?

laura, at 64 you should definitely learn about atrophic vaginitis. I was diagnosed with it at close to your age. As far as I'm concerned it comes with menopause, just a matter of degree. We have less estrogen so that area of our body dries out and can shrink, for some more than others. 

In my case I was told the LS is a result of low estrogen. BTW, my only LS symptom was uncomfortable BMs so your itch may very well be responsible for the itch. This is why you need a knowledgeable doc.

Congratulations on your job search success so far! I no longer do work that offers coverage so I am on my own with choosing proper medicare coverage which is daunting. Trying to set up an appointment now with our community liaison person who helps us through the maze.

If you give permission for someone to keep a photo thats fine.  But I didnt.

Maybe you should point that out to her. I went to a body person some time ago who asked to take a picture with me standing in my underwear. I felt a little uncomfortable about it till I saw the picture and how crookedly I was standing! So I figured it was a good reference for her to gauge improvement, if any.

Actually, now that we have phones with cameras maybe we should take pictures ourselves to chart progression or improvement if any.