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Lichen planus - will I ever be able to have sex again?

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A123A123
A123A123

Hello everyone,

I have been struggling to have sex with my husband for almost a year now. I have excruciating pain everytime we try.

He is a great person and understanding but there is no hiding the fact that it is a struggle for him (and me) that we are not able to have sex. The pain is incredible and as much as I try to grin and bare it, it is impossible to achieve penetration.

I was diagnosed with LS just a week ago after a biopsy and have been given dermovate to use once a night for 4 weeks. Had anyone used this and seen an improvement with vaginal pain? How long did the medication take to work?

Has anyone had severe sexual pain and overcome it after medication?

I'm desperate, I'm 26 and can't spend the rest of my life not having sex. What if I would like children later?

It's ruining my life. Please help. X

1 like, 44 replies

44 Replies

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  • margaret289
    margaret289 A123A123

    Posted

    I find warm water (drying off properly) before the application of Dermovate is actually more effective, but I support everything else that has been said in this thread.  All excellent advice!  I found also a statistic that shows that it is much more common for younger women such as yourself to get rid of this condition altogether, than it is for post menopausal women such as myself.  Find a doctor you can trust and apply the Dermovate to protect you skin long term.

    Above all handle the stress - that, as has been said, is the worst thing for this.  Kind regards

    Margaret

  • A123A123
    A123A123

    Posted

    Hi Sue and Morrell,

    Thank you so much for your replys, it's good not to feel so alone. I can't be open and honest about my lichen sclerosis to anyone except my husband which makes me feel very alone and slightly depressed. I am spiralling into sadness and I cannot see a way out. I'm 26! Why has this happened to me?? I am so newly diagnosed and am completely freaking out that I am bound to a life of celebusy and I am taking my poor 28 year old husband along for the ride.

    When we try to have sex my husband can penetrate me around 2.5inches before I get the most excruciating pain. Why is he able to penetrate me this much but no more? My gyne said that this is due to the scar tissue being able to stretch slightly by not enough for full penetration. Have you had experience with this at all?

    It's worth saying (and now it makes sense) that for 2.5 years I have been tearing everytime I went to have a poo which I now realise is lichen sclerosis towards my back passage. I have been wrongly diagnosed for quite sometime which has allowed my problem to escalate.

    I will absolutely ask for vagina dialators (I am in the UK) and I will also be sure to cover my finger whilst I use the steriod cream. I will also be sure to cut out sugar a little more as per your advice.

    Right now my vagina is burning and seems to be worsening rather than improving on this steriod. Has anyone every used emuaid (not sure if this is correct spelling ) it's a homeopath remedy that I would need to get shipped from the USA.

    Thank you for all of your help, margret, Sue and Morrell. Amazing advice, thanks for your support. 

    X 

    • suedm
      suedm A123A123

      Posted

      By the way only minute amounts of emu oil are needed apparently a little goes a very long way! I had some in Australia - they swear by it for wrinkles cuts and any other ailment you can imagine But they didnt say how much to use and i disliked smelling like a roast chicken all day as i was fairly generous with the stuff. Try chemists of health food shops - you may find H&B have it rather than getting it from the US

       

    • Morrell1951
      Morrell1951 A123A123

      Posted

      I know, A1, it certainly feels like a raw deal in life. If I could just be slightly racy here, before I met my current husband, I tried to have sex with a very nice guy (who has since found Ms. Right) and he had the strangest cone-shaped penis. So I had the same 2.5 inch experience. The weekend we spent together my psoriasis just went wild. At the time I had no idea about LS (well, I had seen photos online, self-diagnosed, then ignored it as just another aspect of psoriasis).

      Unfortunately I can now look in the hand mirror and see that the scarring came from having sex while I was already torn or raw. I wish I had known about dilators decades ago!

      If I were young and diagnosed and with a guy I really loved (So I hadn't become bitter about sexual demands) I'm sure I'd be happy to do 'other things' in bed. Your guy sounds like a keeper.

    • A123A123
      A123A123 Morrell1951

      Posted

      Oh... Other things... Well, I can't say I am particularly experienced or confident in the bedroom as I have been with my husband for 10 years and after meeting so young our sex life might be described as 'vanilla'. So for the past hour I have been looking at 'sex without percent ration' on the internet. It's a mine field and so far I'm getting 'oral and massage' great - but hardly the real thing! To be honest I crave the intermacy too, I feel I need to please him and this is the way to do it. I also feel the need to be loved and mostly this is how men show it.

      gosh, what a way to put down all my feelings, I'm literally am just spilling them out to you! 

      A question about dial actors if I may? Do these essentially strech the skin a little each time and maintain a hole?

    • suedm
      suedm A123A123

      Posted

      I sent you a private message A1

      Watch this stuff together - and laugh  touch and be flirtateous(Spelling??)

      being cuddled is so good, have him brush your hair, go down the massage with essential oils route - doesnt HAVE to be sexual - can lead that way tho get him to massgae you and then you him- have lots of towels around the oils can get everywhere

      If you get dilators from the NHS they come in a variety of sizes and i think you get given a set over time - the easier way is to go to A Summers or similar and laugh together -  so they can see you both privately you could ring them first and tell them the issue

      If the problem is that you go into spasm  getting used to it in the vagina is a Good Thing - if you split-  again having a smallish one - by that i mean narrow will allow gentle penetration without tearing - get the lubrication tho- My Consultant suggests Astroglyde from the net

      It is good to spill out your feelings  if you are a tad anxious about it use the private message envelope then only the person you wrie to can see the message

    • suedm
      suedm A123A123

      Posted

      Again SHARE your concerns with your husband - he doesnt have to know your pseudonym - you could reregister with another one  - or just be a guest so you can keep some of your anxieties until the time is right to tell him- Men can be funny sometimes if not properly prepared. Go down the new path together and discover new ways of having fun
  • A123A123
    A123A123

    Posted

    Just a thought, Sue, if I were to apply diprobase at different times of the day is this ok? I just put my steriod cream on at the end of the day after a shower with no soap. Can I apply the diprobase when I see fit? It doesn't undo any of the steroid effects?
    • suedm
      suedm A123A123

      Posted

      I use it every time i have a pee- i have small squeezy bottles into which i decant the diprobase for travelling in my hand bag so that it is handy - i have the pumps in all the bathrooms and bedroom as well

      Dont use the wet wipes they contain chemicals that can cause a problem

      Many use vaseline as a barrier - i havent found this necessary cos of the copious amounts of Diprobase i use- I also use it for washing my face and body too - makes my skin feel good. If you can listen to the Dr Goldstein talk - it does take an hour and has graphic slides - but it is well worth the time. Have a bath and soak for about 20 minutes so that your skin is softened. Then gently massage in about a pea sized or slightly larger into the vulva and perineum taking NINETY seconds to do so yes a minute and a half- (perhaps your husband could do this for you?) Then moisturise  then barrier ointment. Re read Morrells thread she explains what Dr G said very well

      It is better to have a bath as showers dont get to the important little places so well and you do need to remove the old stuff off before putting on the new. Apply the Dermovate - Clobetasol- as prescribed by your gynae - but do look at the website for Dr Goldstein - Alan the moderator will give you the link if you cant find it

  • wendy14679
    wendy14679 A123A123

    Posted

    There are lubricants that will help when having sex;  perhaps it might help to talk to a doctor - or nurse, so that they can advise you on products to use.  Sorry I can't be of more help, but I am in the same boat as you!
  • A123A123
    A123A123

    Posted

    Thanks, everyone. I appritiate it so much. I have got to get myself together and hope that this treatment works. I fear my husband will leave me eventually. I am hopeful that one day I will be able to have sex again and slow down the affects of lichen slerosis. I have begun watching the lecture - it is incredibly interesting. I will conclude it tonight.

    Thanks everyone xx

  • Charlotte1954
    Charlotte1954 A123A123

    Posted

    Hi!  Just to let you know things can really go crazy with this diease!  My entire vagina has grown totally closed three times now!  I have had the vagina reopened twice.  My doctor says we are gonna let it stay closed for now and hopefully have a new one reconstructed after the LS calms down.  I cannot have sex since it is closed up totally!  I hope some day I can have a new one. My husband and I have not been intimate for thrree years because of the LS. I cannot take steroids because I have diabetes so it leaves me with nothing!  I hate to bring such bad news but it is what has happened to me.
    • Morrell1951
      Morrell1951 Charlotte1954

      Posted

      Charlotte, that is a so hard! You've brought to life some of the scary photos we've probably all seen. LS can move very quickly. We heard from Dr. Goldstein's presentation that LS is almost like four different diseases, in that it behaves in such a variety of ways.

      Have you and your doctor looked at the new stem cell treatment?

    • suedm
      suedm Charlotte1954

      Posted

      Oh Charlotte What a sad tale;  You sound so bitter understandably

      I take it you are around 60, When did this first happen to you? What was the treatment you had to slow down the progression. Have you had  2nd and 3rd opinions? What did your diabetic consultant advise- were they told of your condition? Has the topical steroid affected you blood glucose adversely in the past, or have you ever tried it?

      Where are you - ie which country? Treatments can differ according to where you live

      There are more erogenous zones in women than men - so penetrative sex was out - but there are ways to have a close physical relationship with a loved one. I do hope you find a way forward

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