1. Community
  2. Women's health
  3. Lichen Sclerosus

Lichen sclerosis any advice?

Posted , 27 users are following.

Scottielover
Scottielover

Hi I'm 46 and have been diagnosed with LS for approx 8 months. Can't seem to get it under control and despite using hydro mol, and both steroid creams I find I am now in a worse state than I have been for sometime. In tears every time I go to the loo from pain both front and back. Can't use the steroids as I now have raw sking and it stings. Been recently on antibiotics and wondering wether this has had a worse effect although reading about this does not seem to cause a problem. I have scarring and the piece of sking between both areas in now extremely sensitive. Been to see doc and dermatologist but never seems to co inside with a bad outbreak. Haven't had sex for months now which is also depressing as worried about husbands need a even though he is very supportive. Just can't seem to speak to anyone who understands. I've also got vitiligo apparently this can be linked or is seen to be linked to LS as an immuno problem but nothing else. Can anyone help with any suggestions for relief?

1 like, 59 replies

59 Replies

Prev Next
  • marey
    marey Scottielover

    Posted

    Ancell Keyes was the scientist responsible for promoting the low fat diet...apparently he suppressed the data which didn't support his theory. The swathe of obeisity and cardiac conditions so many of us have today ensued. One of our chaps from here in GB challenged him at the time ie mid 50's....can't remember his name...anyone know? But the theory is only now being overturned and refuted and instead the need to eat good fats such as butter coconut oil advocadoes and the fat of organic pasture fed livestock encouraged once again. 
  • hotlips
    hotlips Scottielover

    Posted

    alright Scottie,

    i hear your pain - and feelon a regular basis!  i thought all was going well until i developed an allergy to dernovate (cleared up the active lichen - YAY but gave me what i can only describe as 2nd degree burns to my entire undercarriage in the process - BOO).  Three products on my entire undercarriage refuses to play ball with anything and is on fire and taught like you wouldnt believe.  i'm 42 and have had this bad boy an infection after the birth of my last child 3 years ago.  hormones, stress and everyday life play a part in dealing with this horrid little sucker.  like everything else in life, we've just got to try get a balance and try'n keep it

    Keep the faith xxx

  • fareen1987
    fareen1987 Scottielover

    Posted

    This has been the worst thing that could happen to anyone , I have been diagonsed with Lichen Planus & I believe suffering from LS too, The past year I have been visiting many gynac who have been treating it as yeast infection but i had a perineal tear last month during intercourse. As sypmtoms , I do have a fairly dull vagina , itching but no pain during intercourse (besides the tears) .

    I will be visting from Dermi to confirm it but I'm sure its LS. 

    For LP , I have changed my diet , I ensure I consume fresh fruits & vegetables on a daoly basis & have noticed lesser breakouts. Less consumption of wheat products too has helped.( hope this helps)

    Has anyone on this forum had an perineal tear? What are the next steps after calming the symptoms down?

    I'm only 27 , unmarried , the tear has freaked me out.

    Any help will be appreciated.

    • Morrell1951
      Morrell1951 fareen1987

      Posted

      Fareen, when they talk about painful intercourse with LS, it's mostly the tear thy mean. You don't want to keep having penetrative intercourse while this tear heals. Keep urine off it with oily barrier stuff like Vaseline as musch as possible. Cut way down on sugar.

      I see you've also replied on some more recent discussions, so I'll see you there.

    • Morrell1951
      Morrell1951 fareen1987

      Posted

      As often as you can so there's a layer of it all the time. Put a little tube in your purse. Clean with wet toilet paper if you can, then pat dry, then add Vaseline.
    • judy04448
      judy04448 fareen1987

      Posted

      Interesting you mentioned a wheat intolerance. I noticed that also.
  • judy04448
    judy04448 Scottielover

    Posted

    HI, I hope you have found relief from your LS. Since others may read this blog I will share with you what I learned in dealing with this condition. The steroid ointment did not work for me. Actually made things worse. I am not familiar with the product mentioned by the previous writer. But I did find relief from using 2% micozenole nitrate cream available though Amazon. I also stopped using soap when washing and started using a gentle AloeVera type cleanser. I'm older had have a little urinary leaking. Had been using menstral pad but switched to cotton urinary pads. Because ibtercourse was very painful I started using dilators regularly. These are various sizes and you can progress in size to stretch the the vagina gently over time This helps to eliminate cracking and burning pain. All these things helped and I am more comfortable these days. Hope others find this helpful. 

     

  • judy04448
    judy04448 Scottielover

    Posted

    You might want to try a 2% miconazole cream. In USA it can be purchased at Amazon. Not sure about UK.  This is not a steroid. In fact it is usually used to treat yeast infections but the dose is higher than usually found in over the counter treatment.  I found it to be soothing. If you had an episiotomy when giving birth there is usually scarring in this area. When combined with LS an area forms that has little or no stretch so it tears.  Many people have suggested using Vaseline in that area as a barrier.  As with all things this may or may not work for you.  Personally, I found it created a barrier but dried the skin out even more so even though I thought it would make the skin more pliable it did not. But you need to listen to your own body. Also I read one of the bloggers that said she had surgery but continued to have problems and was discouraged. Literature strongly advises against cutting as it just creates more scar tissue and problems.

    Lastly, there is the sex issues.  I have been disharttened to read so many women are not having or enjoying sex because of this problem. It is hard to care about having relations when it hurts so much. . But do what you can to help yourself. Sex begins in the mind. Try to look and feel sensual. We have all talked about the problem of cracking and tearing upon penitration.  Gradual Dilation with a kit or fingers can help to get things more open. It may need to be done daily for awhile then just a couple times a week.  Seamen stings like crazy. It helps if they can ejaculate externally.  Use enough good lubricant often and reapply as needed. Remember that men do not want to understand a problem they want to fix it. They usually love sex so the homework should not put them off. Work with your man to help him help you.  Life if short. Don't miss the good stuff. Hope this helps.

     

    • joe41286
      joe41286 judy04448

      Posted

      Hi Judy, really glad to hear you aknowledging sex.  I have been so devistated as I am only 22 and last week I was diagnosed with LS (apparently it is common in early 20s as well as around menopause).  I was reffered to the gyn because I went to the GP a few times with recurrant tears on my perinum after sex and she had no idea why.  At first I was glad the gyn seemed to have an explaination but then reading about it, how chronic it is and how it can just make sex impossible or always painful, I am quite frankly devistated.

      Ever since I lost my virginity when I was younger sex has always been such a source of pleasure for me and something that I value very highly to myself and wellbeing.  Hearing that at 22 this positive relationship may be over, I don't really know how to cope, have been really upset over the past few days.  

      Today I have tried to be more possitve and hope that the cream will work and I will get it under control, I just worry that even if it doesn't progress I will still always have the worry that having sex will lead to further complications - scaring and damage that won't heal so I wonder if I will ever be able to have frequent care free sex again or it will always be something that I should try to avoid sad  I hope that some of you have found that this is possible, but it often doesn't sound like it...

    • judy04448
      judy04448 joe41286

      Posted

      Hi Joe,

      Sorry to hear you have this nasty disease. Your sex life is not over unless you let it evolve that way. Yes, LS is very uncomfortable. You are ahead of others because you received a diagnosis early in your life so scarring  and fusing may not happen. Let's face it. Most of sex occurs between our ears so your attitude toward sex will determine your activity and pleasure. You need to take care of yourself BEFORE sex to reduce trauma. That does not mean there can be no spontinaety. Before I share hints let me give you some of my background. I am 73 yrs old and have probably had LS for many years. I sure had signs and symptoms but it was not recognized or treated unti recently. I tried lots of things that are already mentioned on this site. I have a great sex life and always have. You will have to experiment to find what works for you. But regarding sex here are some hints.

      Avoid trauma and scarring. That means you should always have enough moisture. Use a good lubricant when you start if you are not moist enough. Condoms and other toys should be well lubed so they don't rub and tear tissue. If your partner is especially large you may want use dilatory ( available online) to stretch your vaginal area out gently. You can do this up to a day or so in advance of sex. That is part of what I mean by getting ready. 

      Be sure you do not have yeast infections. They contribute to dryness and irritation. If you notice a discharge with itching it is probably yeast. You can use miconazole 2% (available on line without a perscrption) periodically with an applicator.

      Stay dry. If you leak urine or perspire a lot wear a [u]cotton[/u] pad. Sanitary napkins have a surface covering that may increase irritation. Wear cotton crotch panties. If you can sleep without bottoms that lets you air out during sleep. Keep clean with lots of warm water flushes. Do not scub as this can irritate delicate tissue.

      Stay positive and enjoy yourself. Keep in mind though this may sound harsh....no one to my knowledge has ever died from discomfort. Work with your partner to enjoy foreplay which gets you ready for fun. Find what works for you . This may change over the years.

      Last, a warning......

      steroids are the treatment of choice for LS. BUT they come with a high price. Steroids used over time Or in heavy doses can thin the tissue in the peri area. This can contribute to tearing and scarring. When symptoms subside cut back on use. Creams may be more comfortable than ointment but that is personal so see what works for you.

      That is all my wisdom. Hope it helps give you courage. Stay sexy. 

    • joe41286
      joe41286 judy04448

      Posted

      Hi Judy,

      Thanks for you reply, it is encouraging to hear that still having a good sex life isn't necessarily over!  I really hope I respond well to the treatments and don't get any further complications.  Thanks for your tips, I will take this on board and have lots to discuss with my doctor at my next appointment, I am really glad that atleast she seems very nice and approachable as that is not always a give! 

    • judy04448
      judy04448 joe41286

      Posted

      You are welcome.. Remember that there is no cure for LS but it can be managed. You just need to stay vigilant. Good luck. Let us know how things go. 
    • lauri1041
      lauri1041 judy04448

      Posted

      Thank you for addressing the sex issue. I was diagnosed when I was 34. I am now 55. I have gone to doctor after doctor only to be given clobetesol which I am now told has contributed to the damage I have. Somehow I was never aware of all the tips I have learned here today about cotton and warm water etc. I WAS in a very abusive marriage until 6 years ago, so an forgiving myself for not digging harder for answers.

      The great news is that God has blessed me with a second go round with an amazing man. 😍 He is rather large tho and it's been very painful even tho he is very understanding. With the additional knowledge shared here and by you in particular I have renewed hope.

      Bless you! ??

    • holly95396
      holly95396 lauri1041

      Posted

      Hi, I was diagnosed recently and i've been tearing when having sex, my gyno suggested I try a lubricant called YES, apparently is recommened by loads of health professionals as its organic and all natural, its available from Holland and Barret and also Amazon stocks it, I use the plant oil based one and so far so good, i use it regularly to keep myself moistorised to prevent the skin shrinking. Hope this helps.

    • Drum1girl
      Drum1girl joe41286

      Posted

      Take heart my friend. I was diagnosed at 20 and turn 50 on this week. I was a virgin when diagnosed and was really upset that it sounded like my sex life could be over before it started. But - all has been fine - my sex life is and has been wonderful. I have had flare ups occasionally - but as long as I do the following, I keep things in check: (1) very light undies - I use On Gossamer mesh thongs and undies (not the silky ones - they make me itch) - they feel like you aren't wearing anything; (2) no nylon or polyester in any pants or jeans I wear (elastane or spandex don't seem to bother me - but you may need to watch your body - I have had to donate shorts and pants because they cause flare ups); (3) I wear a lot of dresses to give lots of air (dress material, tights and hose do not seem to have any impact on me - I can wear poly and nylon dresses with no problem); (4) I take a quick bath almost every day - seems to keep that area soothed and gets everything washed off without soap; (5) regular sex with lots of foreplay or lubricant to cut down on unwanted friction and keep the area healthy and open; (6) my partner often wears a condom because semen seems to make me itchy - without a condom, I will jump in a bath to try to wash some of it off and that helps a lot; (7) I avoid all gluten (my body has a problem with it and I seem to get really itchy if I eat it); (8) clobetasol or triami(can't remember the full name) for a day or two when I have a flare up (at this point I only need the cream about four times per year). It is a pain (literally and figuratively lol) to have this - but it has never impacted my sex life at all - maybe the occasional discomfort the next day - but nothing unmanageable.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.