Is the steroid just for itching?

hi

thanks.. i havent even got into my doctors yet as theyre only seeing urgent cases, and was only suggested to me by GUM clinic thats what i had, i did send pic to doc though and she said was (she is a derm specialist and womens health)

i dont have any pain really just a bit of soreness occasionally really its just the appearance of it its very red and white, but when i go back in the office and have to start wearing normal clothes again that may change as ive been wearing casual long skirts and no knickers working at home lol

yes i use coconut oil, aloe vera, doublebase etc

there are so many suggestions for creams and oils etc but i cant afford to buy them all !

thyroid antibodies i dont know but i had my thyroid checked in december it was ok as well as full blood count

Few tears back i had high prolactin but nothing was ever done, i was on the pill for about 20 years and im sure that messed me up i never felt right.

I'm 42 now but im sure ive had this years but just never came out till now as ive never had even a hint of inner labia, i do have some pics from about 7 years ago and it looks fine if maybe a little pale but still pink

Anyway this all started when i noticed this (pic) you can see white plaques here too

2nd pic is now with red gone and 3rd pic is white plaques now

that first came years ago no pain no other symptoms went to GUM clinic they tested for STI's, then said LS and gave me steroid but i only used it on the red bit as they told me nothing, then just started to turn pale everywhere but just left it as no pain or itching.

4 years later (this may) the red bit came back bad enough to make me think i better do something, so i started reading up on it and got more steroid, it was only then i noticed white plaques but who knows how long they've been there, that red mark comes and goes from friction during sex and it takes about 2 months to fade when it comes (it then leaves me with 2 tiny little pink dots like as if its just lurking under there) so i have to be careful now and have sex like i am going to break or i just wake up with that.

just had another blood test for iron as my nails are v pale and asked for vitamin D on that one too.

It definitely looks like LS to me because a. it's in the area where LS occurs, b. it is noticeably lighter, consistent with LS, c. your labia are gone, and d. you've got blood blisters or what look like blood blisters. Have you ever tired Thymus skin? It's a product made in Europe I believe and I'm going to try it. If the labia are disappearing, then the inflammation is active and I would pursue it with your doctor. You might also try baking soda baths, about half cup in full tub of water. or I have found staying hydrated helps.

hi thanks for reply no not heard of thymus skin buy couldnt find anything on it, is it thymus extract?

Although i do think the LS is active, my labia are not disappearing as they've never been there to disappear (inner labia), i have just never had them. I know for a fact this is at least as far back as age 17 that they've not been there (im 42 now), my first partner at age 17 always commented on it, and we used to talk about it, i presumed i was born without them as i have googled it several times in the past and found others who said they dont have any, its only now ive come across LS im thinking its weird and that maybe ive always had it and that the labia either never developed properly or they disappeared way back when, and then i was asymptomatic until about age 38.

(dont know if its linked but both my sister and mom have very tiny inner labia, almost nothing) neither has LS

Apart from the whiteness, patches, red soreness etc, structurally my vulva has always looked very similar to how it does now. I do also have pics from about 8 years ago, the inner labia weren't there then, and no problems or symptoms then, it was all pinker, and no white patches etc like there are now.

No nurse, doctor or gynaecologist has ever made any comment about me not having inner labia , even when ive had 2 x colposcopy's and a hysteroscopy following abnormal smear test about 4 years ago, so again always just thought its normal. One doctor even said to me "its very neat down there" .. but never said anything was wrong

The blood blisters are gone now because they purely only come from friction during sex, im presuming that the skin is thin, and i am careful now, which takes the enjoyment out of it 😦 also always used to wear knickers in bed and stopped that since May.

when i get into the doctors ill bring the labia thing up and see what they say

was speaking to my mom about all this and she doesnt have labia minora either and she doesnt have LS, my sisters are very tiny and no LS either, so in my case i dont think the absence of the LM is related.

Hello BlueMoon, Well, that's interesting as I've never heard of anyone not having labia. I guess I assumed we all had them but, to my surprise, women's anatomy is quite different. Until this happened I had never seen any other woman's anatomy (hardly my own) but the pictures here have brought me to the conclusion that we are as different as men and as our outer appearances are. Who Knew? I have only a "lightness" (not even white) on the perineum which the dermatologist said last week was LS but "mild" as she called it. Not so mild at all I said as I cannot sit at all without pain. Wrecking my life. Have also concluded doctors do not know what they are saying half the time. So few know about this and I have seen several. I am glad for you if you have no pain. That's all I've got.

hi

im sorry that you've got pain and i appreciate your replies to me x

ive started using vagisil not because i have itching but as it has 2% lidocaine it seems to be helping "numb" it and has actually calmed the redness

i mentioned to the doctor yesterday about the labia and she said it was fine and were all different

i had never seen inner labia until the internet properly came out and i started learning about things and looked it up ! i found pictures of al the different types and lengths ... and thats when i was like .. i dont have those..

i started googling "no inner labia" and found a few people that said they didnt but not many, cannot find any "official" site that says it is a thing though!

i do agree that sometimes the doctors havent a clue, especially when it comes to this.

Hi Blue,

Glad the vagisil is helping. I tried lidocaine gel but it does nothing. It is 4%. Taking gabapentin helps but it stops urination. If no labia can be a normal thing, then that's less to worry about! Think the redness is from inflammation but why is my question. Are you in the US? No, the UK, right....Did you get your iron and Vit D tests back?

hi yes UK, iron and vitamin D was fine

the only thing was vitamin B12 was high but they said it was an "acceptable abnormality" and no further action as all the other bloods were fine

i had been supplementing b12 though

the main redness i have is down either side of the area above the clitoris here- like 2 lines

that is the area also where i tend to "feel" it like a sore kind of buzzing

someone suggested a change from the dermovate ointment to cream as this redness and feelings were not there before i started steroid but the whiteness was, so i got the cream yesterday but i wonder if maybe it is just too strong for me

the doctor has now said if no improvement in 2 weeks on the cream she will refer me

it is not too bad at the minute the soreness and weird feelings ,i am on my period and that seems to ease it i have no idea why !

makes me believe it is hormonal

i was on the contraceptive pill for a long time, almost 20 years, ive read there is a link to LS and the pill, i believe this in my case, i never felt right and had a lot of problems with bleeding that settled as i came off it, sometimes i felt like i was going mad! i had a test at the time for hormones and i had high prolactin but no one explained what it meant and they said it didnt need any treatment

Have read where Vit D should be over 50 or you won't absorb certain minerals and other nutrients through the gut. Mine was 62 last year and I had been taking extra. All said 62 was a good level.

I have read the correlation between BC pills and LS but I also know there's an autoimmune correlation and in LS patients there's a skin problem where the cells just go away in a layer below the surface. They do not know why.

But I am waay more red than you. I hesitate to post pictures. You understand. It's funny, I had zero period or menopause problems but now this is kicking my butt. I am going mad!

my vit D was 65, i had been supplementing.

no i understand, it really is a nightmare isnt it

i feel like the weird tingly soreness i have may be nerve related, sometimes i feel it go down my leg.

if i have pudendal neuralgia too that will be great !!! in another week on the steroid cream i can call back and be referred as its not going away

i wonder if the steroid can damage the nerves, probably not but i never had this feeling before.

do you have a regime that helps or are you always red? x

Yes, a freaking nightmare for so many of us. Clearly the nerve is activated or you would not have the tingling. I have not read that the steroid damages nerve endings and I have read at least 50 articles. As a professor I have access to many medical journals and have been reading them. As for a regime, 2 or 3 x daily coconut oil. Sometimes add this calendula salve or some EmuAid or a Frankincense oil just to see what works. Sometimes all of them help but other times nothing helps except ibuprofen, gabapentin or melatonin....shot of whiskey doesn't hurt either. There's another product called Saginel Gel, I think. Made in Italy and expensive but cheaper than physiotherapy! Pundendal stuff creeps up on you but can be gotten rid of over time. I don't think the LS is hormonal because young girls get it as well. Men get it too. If this was totally a man's disease there'd be a cure by now don't you know....