New to the board, old to LS. Tips on keeping up your spirit?

Posted , 5 users are following.

Hey everyone,

I'm really glad I've found this board. Reading your posts so far has already helped me.

I've been suffering with LS for around 10 years now (I'm 33 now), although it took a while to get diagnosed via biopsy. At first we thought it was some kind of allargy to pads, then some doctors suggested it was LS, but all they told me was that, it's LS period point blank and some of the creams they gave me weren't really effective. I haven't seen much of a change in my architecture so far thankfully but I had a lot of cuts, bruises and blisters and get a lot of infections on them.

My skin was really disfigured with bruises and blisters and cuts when they decided to do the biospy, and unfortunately a lot of things went wrong with it, there was an issue with the sedation and the stitching didn't go away on its own, but on the positive side it was confirmed that it was LS.

After that procedure the doctor prescribed Benovate, but I didn't use it much as the procedure seemed to have scared the LS away. For the past 7 years I didnt see much of it, I would get some itching, a tiny tear, or a small bruise, usually 1 week before my period, but it would disappear with some oil or simple calentula cream.

I've been seen some more persistent bruises and thiness of the skin ever since I moved to London on my own but attributed to the stress of moving here on my own. A week ago I went out with a guy that proved to be a little more aggressive than I'd wish. We didn't have sex but I got two big tears on my perineum while the area between is super white and swollen and the area aroud the clitoris with the bruises seems even more weak. I should add maybe that I haven't had sex in the past 7 years.

I'm just very discouraged to see LS coming back and I'm afraid it will take controll again. I'm also kind of scared to visit yet again another doctor as my experiece with them hasn't been great so far.

Sorry for the long post but I just can't feel but disheartned and helpless which I know doesn't help my condition. Any tips for keeping up my spirit and continuing my treatment in UK?

Thank you all so much! <3>

0 likes, 6 replies

Report / Delete

6 Replies

  • Posted

    You poor girl!first let me say that someone, and I can't remember who at the moment said that theRoyal Free Hospital were considering her for stem cell therapy so go go to a gp and ask to be referred to the royal free

    secondly I believe it is very important to tell close friends , fellas esp that you have a VERY delicate undercarriage and you MUST be treated gently, you can say you find gentleness more pleasurable than over enthusiastic stimulation, men are not really aware what women like and NEED to be told. I used to make the mistake of thinking they would understand given time and unspoken responses....not so.

    next you said you had a stressful move to the city...That as much as anything could have triggered your flare up  worsened by friction. 

    Exercise releases your endorphins as does laughter so that is a way to feel better and lift your spirits 

    you will have seen loads of food advice on this site if you have trawled thro several threads. I would urge you to look at Dr Goldsteins lecture on line . It takes an hour so make a nice comforting drink, preferably sugar free,as this does seem to be another trigger for a flare up, and sit and watch it with note book  to hand

    to apply your steroid ointment have a warm bath and soak for 20 minutes or so, put some table salt in if the water stings too much, your body is salty, think of tears etc, dry the area by just dabbing or use a cool setting on the hairdryer. Then on with the ointment in the areas affected, ideally massage it in until the pea sized amount disappears about 20 mins. It may well sting for a few applications -do bear with it You need the scar tissue to be treated, and sadly this is the best treatment that can be applied topically  It is said this is best done in the evening. Then on with some moisturiser, I am prescribed Diprobase but failing that aqueous ointment will be ok as it is non smelly,, NICE smellies on on the undercarriage are NOT a Good Idea....ever!

     Several people will use coconut oil, or emu oil, I think what you use is very much what your body tells you is okThen do keep ALL body fluids off the area at all time using a barrier ointment, again this is where my diprobase is good but others use Vaseline 

    Report / Delete Reply
  • Posted

    Using the iPad on this site seems to cause problems with editing, it was Good not food in my reply to you. Please do go you a gp ask your neighbours who they would recommend in your district, perhaps choose a female gp if you can.

    in my view keeping stress levels at a healthy volume is essential that is why exercise is so good it uses up the cortisols that are released when you get stressed unhappy worried etc. recently it has been said that stress hormones are returned to normal if  you have a "power" nap of thirty minutes following a bad night's sleep. Sleep is therapeutic so do try and keep late nights to the minimum

    keep the pecker up find ways to have fun, I and a group of friends hire a church hall play table tennis VERY badly but with lots of laughter no matter how horrid the undercarriage is I always feel better after a couple of hours of fun

    take care, and this is a great site , the LS ers are lovely people kind  helpful and supportive best wishes to you Sue

    Report / Delete Reply
  • Posted


    Your sad story confirms my suspicion that LS is often triggered by the friction of too much sex or rough sex. I was 22 when the symptoms first appeared – while I was in a relationship where I was having a lot more sex than I wanted. I was also setting out on a very high-pressure career. We were together eight years before I got pregnant. After the first five years I took control over how often we had sex (which was a constant source of angry, sarcatsic resentment) and the LS calmed down. I had two natural childbirths and almost no sex for the last eight years of that marriage. That ended in 1988. I was diagnosed with LS less than two years ago.

    Excessive hormones and high-friction sex are the two constants I can now see as triggers for LS flares. I was celibate and LS-free from age 50 to 57. Then I went into a dating period where my psoriasis gave me pizza face and the LS gave me many warnings that I was no longer fit for sex. I finally got a horrible abcess over my clitoris as the hood finished fusing shut over it. That incident landed me in the office of a great gynaecologist (finally).

    If I had my life to live over I would never have sex unless my vulva were completely calm. You are fortunate to have had early diagnosis. You needn't suffer atrophy now that you know how to treat it.

    Report / Delete Reply
  • Posted

    Thank you so much for your replies Sue and Morrell! Feels nice to have a supportive community. LS seems to be so different for everyone it's hard to figure out what's happening, what's normal or not. I have to say I have 100% regrets for that date all though it didn't go all the way through, but it's hard to find a balance after being 8 years on the bench. I'd love to have someone to love especially now that I'm away from my family LS makes it feel even harder than it already is. I've already started with the baths and oils and the part around the labia looks a bit improved. It's the perineum area that shows no improvement whatsoever. I'll look for a GP today, does it have to be near where I stay or can it be near where I work as well? Thanks for the tip about the Royal Free Hospital !
    Report / Delete Reply
    • Posted

      Once you get referred to a gynaecologist or vulvar dermatologist (ideal, but rare) you'll only need to go twice a year.

      My perineum is the area that never quite goes back to normal pink.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up