Splits above clitorus

This is great Justine thank you. I will try the barrier cream whilst running. Obviously I am sorry you get the sores but it's nice to hear I'm not the only one. I'm the same, I dread going to the toilet because I always leave feeling so upset after looking down below. Thanks for your advice and good luck with yours xxx

Sue, 

Thank you ever so much for such a lengthy and helpful reply. I am thinking sugar is contributing to it being worse. Im thinking of starting a diary of flare ups.

I guess my paranoir about herpes is because I don't get the white patches I just get the tears and sores and sometimes they begin as a little bump. My doctor has told me this is just irritation but I just worry myself sick.

I find my clitorus can sometimes get a little tear in, becomes purple and can be extremely sensitive and painful - is this something normal with LS?

Thank you again

Jade xx

For me the use of soaps and creams , with the exception of the steroid cream which I have to use occasionally, is problematical.  In fact, I have had to stop using soaps even in the bath because my whole body is now alive with irritation and soaps exacerbate this.  Clean water, occasional simple soap in the bath, dry off and keep dry, using clear water after urination (before I knew all this I lost my labia and the urine goes all over, as a result) and again dry.  This works for me.

The clitoris is the females' penis - it is the rudimentary form that has a huge number of nerve endings in it - like the male penis, when swollen and inflamed it can get VERY sensitive and painful and sometimes makes one feel "ready for sex NOW!" -all the time!  

So it is reasonable to assume that a flare up affecting the clitoris willl be painful.

Do NOT WORRY- worry is stressful - AVOID stress as much as you can

- when having sex do make sure you are protected- or he is - then the issue of STD's is lessened - if necessary explain to him that it is important not to have ANY body fluids on your undercarriage, and even if you have been on the pill then you have a good reason to keep from any likilhood of acquiring as STD

The  Herpes simplex virus ( like the cold sore) will remain in the nerve path it affected initially and can reoccur when the conditions are right, and thus when having a cold sore it is important  to wash hands and not infect yourself with the virus, obviously  oral sex  with someone with a cold sore is Not A Good Thing! - for EITHER of you!

I think your idea of keeping a diary is a really good one. I would keep it daily charting food and drink - and possibly moods as well - then you may be able to see a pattern emerging

Put your steroid on to those parts that are most vulnerable to taring

Good luch  take care

Sue

I can't use any form of soap, hence if necessary I use an emollient- like aqueous ointment - or what i am now prescribed - Diprobase-  that I use as a "soap" everywhere - it is one of The best moisturisers I have ever had - my face is so much happier these days too.

How long have you had LS? Before i came across this site i hadnt realised how many women have lost their labia too. I was so unhappy when i watched what was happening to my body

You say you have whole body irritation - that must be so dreadful - i feel for you

Yep, tears and purpleness are definitely normal symptoms of LS. I will also sometinmes get little bumps (some are just bumps others are like pimply things or boils). The tears I get are usually in the cracks of the folds but sometimes are right on the clitoral hood or other places. I have even had tears just inside the vagina. Some times the white patches are there, other times (usually after using Clobetasol) the white patches aren't there (or are hardly noticable unless you really look) but the tears and purpleness (kind of like a broken blood vessel, or a blood blister , or a tiny bruise) can still be there even if the white/grey patches aren't. 

 

Pixie thank you so much for this. I get these bumps and pimples - just been desperate to meet someone else who suffers with these and these tears. I have been in councelling this week for this obsession with my lichen sclerosis being herpes so reading this post really relaxes me. Thank you for sharing xx

I have just been disgnosed with LS. I suffered for months and was told it was a yeast infection. I too worried and still worry its herpes even though i have been told by 4 health professionals its not. i have had a sawb test that came back as negative but i still suffer from anxiety. When you read the symptoms of LS they dont mention the bumps, To make mysefl feel better i keep reading this post over and over because its reassuring that im not the only one who has had these bumps. 

I've been getting bumps and pimples for over forty years. I actually had a diagnosis of Herpes Simplex II in 1972 – I the doctor was wrong, I think it was LS. I've never had herpes again.

We just have crappy skin  – it's vulnerable to yeast (you likely did have a yeast infection as well as LS) and bacterial infections.

Hillary, it is also so nice and reassuring for me to see this post from you, we sound exactly the same. i get extremely anxious and upset about it all. I would be happy to exchange emails with you if you ever need someone to talk to because my obsession with herpes has been affecting me for over a year and it may help the both of us to talk to another person with the same issues! Xx

thank you so much for this, so reassuring to know that they're common symptoms xxx

Hi jade. Exchanging emails would be great. 

Mine is: hillary_84@hotmail.come

.com 

I just thought I would ask...I have what looks to be a bite on my  right side vaginal lip, At first I thought it was perhaps an ant bite, its itchy, red and feels like a little bump...I have not experienced anything like this before, it is not a spot or a boil,  I am pretty certain its an ant bite but thought I should ask here, what do you think?

If it's an ant bite it should be gone in a day or so. If it's a boil it will get bigger and sore. Sounds like LS to me.

Hi Suedm.. I love your tips... I am too new to this condition and I am trying to get as much as info I can to start right.... You have mentioned that you use a moisturiser after an hour of your steroid placement.. which type of moisturiser are you using?  I was wondering if the Perrins (not sure if it is spelled that way) can be used as moisturiser... thanks in advance!

Okay thanks, I will see what happens, it does seem an odd place to get an ant bite but I live in Costa Rica and we have hundreds of the blighters lol!

Oh, I've heard about the bugs in Costa Rica. Thanks for reminding me. We're into snow and ice here in Canada, so that will help me not envy you.

Hi Morrell, i was just wondering what are the bumps like when you get them and how long do they typically last? and does your cream treatment gradually make these bumps disappear? 

My theory is that our crappy, vulnerable LS skin is prone to all sorts of things. I've had horrible, long sausagey boils along my panty line since I was a teenager (not any more since I started clobetasol a year ago). I have some pretty major pockmarks there. I recently noticed some disgusting huge blackheads around the same area, possibly because I use so much oily stuff and only wash with plain water. The red bumps around the dense hairs of my mons are kind of goosebump-like, but a bit bigger. They've calmed down as well. Then there was the enormous  abscess I got right over my clitoris when the two inner labia were nearly done fusing together – bacteria were betting in through the incomplete seam. That experience took me into emergency and to the gynae who finally, after forty years diagnosed LS. Thenthere are the new yellowish hard bumps growing just inside my vagina, over the rim from my perineum. They look like bits of chicken fat, but they're hard. My gynae's coment on them was "that's irreversible". I think it's the gradual (or in some of us, fast) hardening of the rim of the vagina that makes sex impossible and possibly eventually makes urination slow.

That's quite a few kinds of bumps!

Clobetasol takes quite a few months to really make a difference. This is why it makes no sense to only use it occasionally when flared up – it isn't a quick fix. We stay on maintenance for that reason. This said, there is a small percentage of patients who don't respond to steroid cream. There's only one other treatment – tacrolimus – and it has some unpleasant side effects, so it's only prescribed as a last resort.

Hello sorry not to have replied earlier - i have been away from the computer doing other stuff- and getting a chest infection! I use Diprobase - in the UK on prescription. It is an emollient cream that i put on then "wash" off and leaves the skin feelng soft and pliable- that is for the face and body - for the undercarriage i just slap it on after an application of Clobetasol- after a wait of about 20 mins otherwise after each time i urinate. Sometimes i need to put a panty liner into my "knickers" esp if i am wearing a light skirt- oily seepage is Not a Good Look on the back of the clothing

You can buy aqeous ointment from the chemist and this will do a similar job to the Diprobase

Good luck

Thanks Suedm...