Diagnosed with LS last week, feeling scared

Posted , 13 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi

I am 39 and have had awful symptoms for about 3 years, I have been passed from pillar to post until last week a lovely doctor who was checking out a split in my vulva ( which keeps happening every time me and my hubby even think about intercourse!) when she announced " omg I know what you are suffering from! Why has no one noticed before!!!! Well, I am pleased to have an answer, and have been using a steroid cream, but my sex life is going down hill fast, I have a lovely kind understanding hubby thank goodness, but it all gets upsetting sometimes, help!!!!

0 likes, 10 replies

Report

10 Replies

  • Posted

    We delete content if it doesn’t meet the requirements in our Terms & Conditions.

    • Posted

      My friend is in nursing carer profession and before I was diagonised she said I may have an acid bladder so looked it up and suggested taking Vitamin B which I do and my wee has got much lighter and using Dermovate approx twice a week and Hydromol every day to wash and then moisturise down below I am itch free after suffering for 12 years give them a try .
      Report
  • Posted

    I am so sorry Hayley this is aweful at your age ,I have had it a year now but at 70 it's not going to affect my sex life ,I went to have a biopsy yesterday but she has left it another 3 months as she thinks after a year it's responding to the creams ,

    I use one to barrier it from the urine as it can irritate it and I use one 10 minutes before I then use a soft cloth and rinse it of with the non fragrant balm that I use in the bath but the main thing is to get a biddai for your toilet so when your at home you can rinse the urine out ,I have 6 creams and steroid cream I we rat cotton under ware a fragrant rant free pads and no soft rinse on my underware and try and wear skirts as leggings make it a lot worse x((((hugs))))and take care 

    Report
    • Posted

      Hi,

      thank you so much for your advice, I have been wearing 100% cotton knickers! and fragrant free pads! but any kind of pads are very irritating to my skin! and I can't wear tampax 😢 for my period. So I am really stuck there too! I have swopped jeans for leggings and they help a lot.

      Take care

      H

      Report
  • Posted

    Hi Haley,

    Having suffered from LS my entire 62 years, through several marriages where there was plenty of good sex, I can only reassure you by saying LS has flare-ups and long calm periods. You're lucky to have been diagnosed before atrophy set it, assuming you still have an exposed clitoris. Mine was grown over at your age, then with the end of a bad marriage and resumption of sex, it uncovered again. But when it flared badly during perimenopause sex made me get one yeast infection after another. I have a theory that this delicate, fragile, inflammatory skin easily hosts deep roots of candida. The slightest friction stirs it up like dendelions in a garden. (A kind pharmacist explained that to me, even though neither of us knew LS was my primary problem).

    You'll see some talk of using lidocaine to make sex possible. Or just grinning and bearing it. I'm now with the first man in my life who didn't fall for my faking a lack of pain. Pretty big turn-off for him. The danger is that all this friction (and bodily fluids) during a flare-up will caue permanent scarring and atrophy.

    So, let's hop that now you've got a good gynae and the right prescription, you'll get through this flare and have a long period of comfort and pleasure.

    Report
  • Posted

    Hayley, once again, our hearts go out to you.  I was diagnosed a year ago.  This is what I have found to be ture:  -  You must keep using the steroid cream as prescribed and moisturize often. You must apply the steroid according to your gynecologist because for it to work you have  to maintain a certain level of it in your system.  Don't be tempted to stray from this routine and things will improve, especially at your age. You can hope for longer times between flare ups and even for it to go into remission.   Past 70 it seems it will be chronic - off and on forever. 

    Right now my favourite moisturizer is Coconut Oil which I mix with Celadrin Cream.  Although Celadrin is really for muscle and joint aches, I find this combination really helpful the most helpful.  Before this have tried Argan Oil and Aloe, etc.  But this is the best right now.  Diet wise I have tried the changes people suggest and found no difference.  I do find I can no longer drink as much wine - and I only ever did have a couple of glasses before dinner on weekend evenings.  I do not have a sweet tooth but really sweet things seem to be a bit of a problem.  Good quality dark chocolate seems to do fine for me.

    Same depressing comments from my gynecologist - she said "Do you never look down here?"  Well, it is hard to see what is wrong when your problem area is covered with white zinc ointment which my GP had told me to use.  I was in tears before he suggested a gynecologist and then it almost seemed to me she was saying it was my fault somehow.  She also told me to use Estrogen Cream as LS can stem partially for low hormone levels.  Some say it has helped them but others not, but as I have had breast cancer I knew enough not to do that.  But I am now a wiser person and living with this is much easier. 

    I would suggest that you sift through the information on this forum very carefully as in that we are all looking for a quick and complete cure, we are keen to try anything anyone comes up with. 

    Take heart and the best of luck.

     

    Report
  • Posted

    Hi everyone 

    thank you all so much for your replies and support! I am using an emollient cream before bath and showers, then a moisturiser and steroid cream on top of that. I also suffer with thrush and just getting over a bad attack, I have been taking 250mg fluconazole once a week for last 6 weeks!!! ( as prescribed by gynae ) just got to get on top of this awful swelling around my vulva which gynae said to keep an eye on, I drink loads of water and no alcohol, or acid foods. Hoping I will feel better soon! Does the whiteness of litchen ever fade or go completely??? 

     Thanks again

    Hayley 

    Report
  • Posted

    Hi Hayley sorry to hear you have joined the unfortunate ladies on here but now you have been diagnosed you should feel much better with the steroid cream and I use Hydramol ointment  to wash down below then smear it on afterwards keeps me fine all day . It never goes away but can be controlled. You don't live near Romford do you cos the lady who saw me said exactly the same thing to me, it was such a relief to know what I had after 12 years of itching. Wish you well .
    Report
  • Posted

    I'm so sorry!   I know what you're feeling.  I suffered with worsening LS for a long time before finally going to the Gyno.  She knew what it was and insisted on doing a biopsy rith then.  It hurt so bad and bled for days.  The steroid cream worked after using it for weeks.  But I have had some very bad cycles of it since then.  But that being said, I have also had months of being completely symptom free!  I hope you get your LS under control soon.   
    Report
  • Posted

    Hi Hayley,

    I just wanted to caution you that you must be careful not to use Clobetasol (often referred to as Dermovate in the UK) too frequentlly, as it can thin the skin.  For me, that was a problem because while I don't have the worst case of LS in the world, it's still fairly aggressive.  Using it every night wasn't working; I'm not sure if I was irritated by the Clobetasol itself, if my skin thinned too much, or what - for whatever reason, I still got flare-ups.  My dermatologist (please don't just see a gynecologist; also see a dermotologist who will be more familiar with LS and what it does) then prescribed Protopic as a steroid alternative to use on the days I don't use Clobetasol.  After much experimentation and yet another, smaller, flare-up, I now use Clobetasol two days in a row, followed by Protopic two days in a row.  So far it's working and my sex life is much better as well.  I cannot seem to go a day without using SOMETHING, so Protopic has helped me a great deal.  I also think it is slightly different from Clobetasol in how it affects the skin; I'm not sure how.  I'm from the US, and I notice that people on this "Patient" forum (who appear to be mostly from the UK) don't seem to talk as much about Protopic - I'm not sure why; I've seen it discussed on a few other UK-sourced websites, but never in terms of LS. However, I sometimes wonder if it's because dermatologists in the UK aren't used as frequently? Not sure, but I don't think you're going to hear about Protopic unless you visit a dermatologist.  Gynaecologists will point you to the old standby Clobetasol (Dermovate) and nothing more; I don't think that alone works for most LS sufferers.  If you do try Protopic, be aware that some people react to Protopic negatively; I was not one of them but I will tell you that it burned a tad bit for the first few days I used it, for around 5-10 minutes.  After that my skin adapted and I've had no issues since.  As long as I do alternate applications of either Clobetasol (Dermovate) or Protopic each night, I've been much better lately.  

    Good luck!

    Denise

     

    Report
    • Posted

      Hi Midwest Girl.  I agree with you about the Dermovate, once you get the LS under control its important not to use too much.  My gynae and dermatologist suggested for routine use that I use over the counter 1% hydrocortisone cream once daily, increasing to 3 times daily at the least suspicion of a flare.  This is still very much less than the Dermovate (its about 1000 times weaker) but it works quite well. I couldn't handle the Protopic at all! I also use Canestan cream occasionally just to keep any thrush overgrowth at bay, because it can be very problematical if you have damaged skin from LS. Sugar also seems to be implicated in flares, so attention to diet is important.
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

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