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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

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  • Morrell1951
    Morrell1951 A123A123

    Posted

    Hi A1,

    My heart is with you. I don't know about L. Planus, but at your age the dermovate should work. I'm one of the few here who've had it all our lives (I'm 62, but started having painful sex at 22 or earlier). Looking back it was my second husband who wanted very frequent sex, that was when I started having a tear in my perimeum almost all the time. The hard fact is that the friction and bodily fluids of sex can really make a flare-up worse. There's a phenomenon called the Koebner Effect where skin trauma triggers the LS (and psoriasis, which I also have) to flare.

    I still had two kids in my thirties (pregnancy hormones seem to make LS go into remission, so natural childbirth is not a problem. I've had long periods of remission over my lifetime. The thing I can probably attribute them to is low stress, a calm contented time.

    There's a lot you can do to settle the LS down. I've learned a lot on this forum and took these notes to my Gynae appointment a couple of weeks ago, so she could share them with her 1000 (!) rural patients.

    Dr. Andrew Goldstein 1200 patients with lichen sclerosus, the most in the world. His wife is a dermatologist. He attends all her meetings that cover the vulva.

    We have a thread here where there's a link to the video:

    https://patient.info/forums/discuss/dr-goldstein-lecture-271556

    He says forcefully that it takes this 'ultra-potent' steroid (8000 times more potent than hydrocortisone) to treat the incredible amount of inflammation way down deep in the 'basement' layer of this extremely thickened skin. Thinning is actually part of the treatment strategy. LS skin is not thin but extra thick, because it's all scar tissue and hardly any skin cells. The white blood cells that cause inflammation are way down deep at the bottom of this thick tissue.

    1. Soak in warm water for twenty minutes first to soften the tissue

    2. Rub, rub, rub, the prescribed cream/ointment in for about 90 seconds.

    Stop worrying about thinning the skin. It's way too thick! That's one of the treatment strategies of clobetasol. We want the skin to get thinner.

    Use the ointment, not the cream, because the cream tends to stay near the top and not penetrate.

    Quite a few women find the base of generic Clobetasol irritates. Brand-name (Dermovate) costs double, but it's enough for a whole year. 20-minute warm pre-soaks soften the keratinized skin to help the meds penetrate deeply.

    Best advice: don't wash down there with soap. Plain water is all you need.

    Don't wear tight pants and wear cotton panties.

    Just recently we've learned from our member who's a doctor:

    "There was correspondence in the British Journal of Dermatology recently regarding the cause of LS, and Dr. Chris Bunker from University College Hospital in London, who is a dermatologist seemingly interested in male genital dermatology. He suggests that it is likely that LS may be due to "chronic occluded exposure of susceptible  epithelium to urine". This means  urine on sensitive areas may be affecting the tissues and causing inflammation which leads in the longer term to the sclerosis, which then causes either itching , soreness and lack of the normal elasticity which leads to tearing.  The reason for this suggestion is that males circumcised at birth never get LS,males never get it around the anus, LS appears around surgical scars and genital piercings, and also around urostomies (where the urine tubes are brought out on the skin after bladder removal). Circumcision also seems to cure males with the condition.  It is suggested that some genetic predisposition of the skin "barrier" , such as occurs in eczema, allows it to occur in some women and not others. This genetic predisposition may explain the connection with autoimmune diseases. "

    So, applying vaseline before urination seems like a good practice.

    Grinning and bearing it is a good way to accelerate the scarring and atrophy. You don't want that. 'Yes!' brand oily lubricant has been recommended by many women here. They have it at big health food stores. One woman is trying a female condom.

    But you need to heal before trying sex again. Please explore the threads below this one, there's a wealth of good advice and women younger than I talking about how they handle the sexual side of relationships.

    Job One for you is to try to stop freaking out (I've done it and it only contributes more to the flare-up). See if there's some kind of settling, centering practice you can learn to get calm when emotions arise. One woman just yesterday is taking a 8 week Mindfulness-based Stress Reduction course. I have experience with that and there are teachers everywhere.

    My personal best thing has been cutting way back on sugar. It seems to be like gasoline on the flames. I got much better very quickly.

    Do post more, we're so happy you came here. We're all here for you. One of the most stressful aspects is having a yucky secret. Here you can talk.

  • Morrell1951
    Morrell1951 A123A123

    Posted

    Couple more thoughts. My gynae said to watch that the ointment is very runny when it melts, that it doesn't go on perfectly good skin next to the LS. I think if I were as you as you are, I'd wear those little finger condoms so the ointment/cream doesn't penetrate your finger skin. Not a huge deal, but this is the long run you're looking at.

    There are surgeries, which you'll see in Dr. G's presentation, to undo scarring and fusing that can narrow the vaginal opening and cover the clitoris. In the past they've said that it just grows back, but Dr. G's way of applying the meds make him confident that this won't happen.

  • Morrell1951
    Morrell1951 A123A123

    Posted

    Geez, I wish this site would let us edit our posts!

    I meant as 'young' as you are. and 'uncover' the clitoris.

  • suedm
    suedm A123A123

    Posted

    Hello 

    Morrell makes a lot of excellent points for you A1! one other aspect you may want to consider is asking for vulval dilators- or go to a sex shop and find a very thin dildo that is about your size or a tad larger and use when you are VERY well moisturised. It is essential to keep your tissues as flexible as possble- it is the tight dryness that causes the tearing- if indeed you ARE tearing. Is the pain on entry or do you go into spasm durng penetration? there are differnt solutions for each cause. Where are you? un the UK or elsewhere? many threads on this site are from all over the world so the treatments available differ. Perhaps you can ask your GP to refer you to a sex therapist- they are wonderful at finding satisfying solutions for you and your husband. In Birmingham in the UK the hospital contacted all those they had on their books with LS so that a support group could be formed - It really did help There were people of all ages withthe condition and it was there that i attended the session on sexual difficulties and the organiser arranged for a group of us to go to a sex shop - who were forewarned and they were wonderful non judgemental and had a host of toys and suggestions for those who needed advice. 

    The biggest issue is to try and reduce your stress levels - because fear of sex will make you tense and that is the last thing you need.

    Good luck and i really hope you can get this sorted- you are so young, and if you ARE in the UK - keep nagging your GP - in other countries it can depend on your insurance cover

    So to sum up bathe and soak as Morrell suggested and apply the steroid in between wash with cool water pat dry apply moisturiser cover area with barrier cream Drink lots of clear fluids - it makes the urine less strong, dont strain when opening your bowels- and try and laugh- the endorphins will help you 

    • A123A123
      A123A123 suedm

      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.

      X

    • suedm
      suedm A123A123

      Posted

      Hi Many on the site do use Emu creams or ointment with apparently good effect. and NO you will not have to be celibate for the rest of your life, just take things a bit carefully while you have a lfare up. The Dermovate does sting a bit but it does work there are other steroids but not quite so good. Others use cocnut oil with seemingly good results. Do try and keep your bowel movements soft but try not to use laxatives the faecal fluids will cause burning, Lots of leafy vegetables and broccoli and cabbage and LOTS of water and exercise - walking is excellent to get the gut moving smoothly

      I am 70 and single (divorced)so your penetrative issues dont really affect me now- others on the site will be able to help I am sure. Do keep the moisturisers into your vulva and vagina entrance. Wash withan aqeous ointment if your gynae hasnt prescribed something like Diprobase which i find an excellent washing and moisturising substance

      I found telling friends about The Itch in the Undercarriage was an 'easier' way to tell - and I think many go undiagnosed or they put it down to thrush . Also DO take a mirror and check yourself out regularly. And tell your friends to do so too People are not aware of their normal anatomy - it is just as important as checking your breasts .Any sore patches that are not healing - take yourself of to the medics as soon as you can. Take heart it CAN get better - but keep away from all sorts of stress- laugh as much as you can

      Best wishes Sue

    • fareen1987
      fareen1987 suedm

      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 from India, unmarried , the tear has freaked me out.

      Any help will be appreciated.

    • suedm
      suedm fareen1987

      Posted

      Hi Fareen First let me say there ARE far worse conditions out there - which fortunately we don't have- and are life threatening ad exquitively painful - While LS and LP are NASTY painful conditions that are not spoken about or widely known about in the early stages what we need to do is to manage the condition in order not to allow the condition to become malignant

      First let your partner know that penetrative sex is not an option for you until you have healed up Read other threads on this site you will find an enormous amount of good advice and kind words Look at Dr Goldsteins lecture https://patient.info/forums/discuss/dr-goldstein-lecture-271556 GET HIM TO WATCH IT TOO and to read these threads

      Keep stress to a low level do not fret get over anxious  or Freak Out! Keep the area clean - salt baths  or with bicarb in the water Apply the pea sized amount of steroid ointment wait and apply a barrier cream Drinnk a lot of clear fluids to dilute the urine Keep all bodily fluids of the area spray with water bicarb or saline solution - it is up to you what to use, reapply the barrier do not wear tight clothing or tights or even pants- go comando while the pain is bad but DO wear long skirts

      The tear will heal but be fragile so you may tear there again if sex is too enthusiastic

      See the thread New to LS start here

      Good luck and be pleased that only YOU and may be your partner (and medic)know that you have the condition the general public are not aware and stare at you all the time

    • fareen1987
      fareen1987 suedm

      Posted

      Hi Sue,

      Thanks for your prompt reply , I wasn't aware of the tear healing by itself cause it seems to be a slit until the anus area (I'm sorry if I'm grossing you out) but this is more like cry for help! 

      I will watch Dr Goldstein lecture in the next couple of mnutes. Could you help me with the steriod ointment & barrier cream?

      I will join the new to LS group as well.

    • Morrell1951
      Morrell1951 fareen1987

      Posted

      Fareen, I've had undiagnosed LS since I was 22 (forty years). The slit between my vagina sometimes going almost to the anus is the worst thing that happens. As you'll see in Dr. Goldstein's lecture, having a warm soak before applying clobetasol allows it to penetrate more deeply.

      Wait for half an hour after applying Clobetasol before applying the oily barrier (anything you choose that's chemically neutral, Vaseline is fine) because we don't want the medication oozing onto perfectly good skin along with the Vaseline/coconut oil, etc. It's ultrapotent steroid which is intended to thing the thickened layer of dead cells in LS-affected skin. If you read about skin-thinning as a side effect it's only if we get it on our healthy skin.

    • Morrell1951
      Morrell1951

      Posted

      typo: intended to thin the thickened layer of dead cells
    • fareen1987
      fareen1987 Morrell1951

      Posted

      How long does it take to heal ? I'm kinda of really scared now. As besides itching I don't have any pain like the others suffering 
    • Morrell1951
      Morrell1951 fareen1987

      Posted

      Nothing to be scared about. You're very lucky to have been diagnosed early. LS is only stubborn if left untreated for years, or if it starts after menopause. I got it young, still had two kids naturally and plenty of sex. I had some flare-ups over the years, I was celibate a couple of longish periods. But now I've had enough atrophy that I can't have sex (and don't mind now). For many years it seemed like it was yeast, and it was, but hand-in-hand with LS. This is probably why sugar is the worst irritant.

      Healing is dependent on too many things to say. When I have a flare (meaning a tear) – usually triggered by emotional stress – it heals in a few days. I use the clobetasol an extra day or two and I'm good again.

      You really need to start thinking of candy, sweet drinks and desserts as poison. It's the most worthwhile thing you can do beyond following your prescription. And look into stress-reduction techniques such and mindfulness. Best thing I ever did. I practiced hard and went from being an angry drama queen to the office's calm centre.

    • Morrell1951
      Morrell1951 fareen1987

      Posted

      Fareen, you must realize, however, that we here only have personal experience with lichen sclerosis. I understand that lichen planus can be inside the vagina. LS is not. So, you probably want to find the lichen planus forum, too.
    • suedm
      suedm fareen1987

      Posted

      the fissure...your aptly named slit ...will sting if it is hot and wet and if, your poor girl, you have it going into the anus then bowel movements will be a nightmare too- so do keep your stools soft - and formed by eating a welll balanced diet;  wash the area REALLY well - faecal matter will have the enzymes in them that digest our foods and will not stop digesting our skins when reaching the skin, making the pain even more intense. So do make sure you use a really good barrier on that area too

      However you really MUST (I dont often use the impertive so take note!!) keep the undercarriage really clean- removing all creams and ointments regularly so that this warm moist area is not a breeding ground for bugs of one sort or another. I favour baths as I am not a great friend of the shower - I find holding the shower head in the right place at the right angle uncomfortable and not very effective. If you have a bidet this is ideal, I understand that there are inserts to the wc that will work reasonably well

      Let us know how you get on, there are many people who read these threads and emphathise with you even if they are not writing their kind thoughts down

    • fareen1987
      fareen1987 suedm

      Posted

      Thanks Sue for the concern , I haven't been on any ointment yet as I mentioned earlier .. The Gynac have been treating it as a yeast infection and I've genuinely been fed up of inserting vaginal pills for it to heal. I will be visiting my dermi for a check up post Christmas but until then as I'm traveling I'm going to strictly change my diet to avoid sugar , use Vaseline and rinse with cold water which helps in the relief as compared to hot/warm water. 

      Fortunately detoxing my body with green tea and ensuring I eat fruits for breakfast and eat a salad before least one whole meal , helps in keeping the bowels soft. 

      I'm hoping the doc doesn't state I'm in a bad shape. It's difficult in times like these to be less stressed though I'm trying. 

      For all those suffering with LP besides the medications please move to a healthier way of living, you will def see an improvement in your skin .i.e. lesser break outs /flare ups. 

    • Guppy007
      Guppy007 fareen1987

      Posted

      Hi, I think you should be fine if you follow the excellent advice given...one point sometimes forgotten is that sometimes we can go into remission, whereaby it can clear up of it own accord, and you may then be symptom free of it for a few months or even years, it will almost certainly re occur though but I just wanted to let you know this..

      .I have oral lichen planus which is awfull when it kicks off, and then it can disappear for months...

      Best to you.

    • fareen1987
      fareen1987 Guppy007

      Posted

      Maybe I'm in the remission phase right now when it concerns LP and honestly I'm loving it... And yes yoga generally helps in keeping the stress at bay and mine would trigger as unfortunately an obsessive stressor. 

      At this point it's the LS cause of the tear and the fear of confessing it to my boyfriend or just going in to stitch the tear. 

      Hope your well right now Guppy. 

    • suedm
      suedm fareen1987

      Posted

      Fareen, there is very little liklihood of having to be stitched up - don't worry  on that score and IF you did it would or should have beeen done within the first few hours - because the healing process would have started and  would have made stitiching very difficult, have you been to be examined by a doctor? if your ARE that worried then that is a necessity asap!

      And as it was HE your boy friend  that caused the split in the first place - you can mention that your undercarriage hasnt recovered yet from the last time - (perhaps make a fuss when sitting down) tell him that you have very fragile skin and need to be treated gently - you can make a joke of it if necessary - fragile flower petals- etc and so you  will have to be treated with great care and consideration- IF he is unhappy with that......?

      Most men will be appalled that they have caused distress or injury - if they aren't perhaps one would consider the long term relationship

       

    • fareen1987
      fareen1987 suedm

      Posted

      I'm currently traveling and have an appointment with the doc only on 26th this month.

      When you mention about it healing , do you mean it actually closes up by itself?

      I always thought that the perneal heals only with stitches but if the cream make it heal faster , there is nothing like that , honestly having it sitched without child birth is freaky by itself.

    • fareen1987
      fareen1987 suedm

      Posted

      I'm currently traveling and have an appointment with the doc only on 26th this month.

      When you mention about it healing , do you mean it actually closes up by itself?

      I always thought that the perineal heals only with stitches but if the cream make it heal faster , there is nothing likeit , honestly having it sitched without child birth is freaky by itself.

      Bf is aware of the tear as he spotted the blood when it happened cause I felt no pain. He's being supportive about it so far but its again the fear of losing out on a good relationship thats kicking it.

      Fortunately , I've only been itchy so far , no irritation during urine or intercourse besides the tear & on & off yeast infection kind of issues - which seem to have their days of being there & not being there which is frustrating by itself.

    • suedm
      suedm fareen1987

      Posted

      In normal injury the body sends out cells to the injured spot and starts the healing process- which starts from the bottom up and the sides in -the reason stitches are put in is to stop  the wound getting infected, hurting and healing out of alignment, or the scar tissue being wider than necessary. the subsequent scar tissue is thicker and white and can be more fragile and prone to further injury - you may have scars on you hands or knees from falling as a child- or acne or chicken pox scars from being a teenager or childhood illness

      I am not a modwife and I had Caesarian sections  however I understand In child birth the midwife may increase the size of the birth canal opening if it looks like the mother's skin may tear as the  baby appears- if it does it could be jagged and difficult to stitch and so they make a neat incision to allow a more  "comfortable" repair- and a straight slit is easier to stitch and or heal

      Is that any help?

    • suedm
      suedm fareen1987

      Posted

      PS with LS it is suggested that the steroids are used to stop the Koebner affect - mentioned in the Dr G's lecture
    • fareen1987
      fareen1987 suedm

      Posted

      Yes , definately helpful , its a mircale by itself to know the body heals by itself . I feel much relieved from the thought of not getting stitched up . Thanks Sue.

      I'm worried if this is actually LS / Yeast infection though they go hand in hand , I will insist on a biopsy when I visit the doctor before being put on any kind of medication.

      I have refrained sex for a month now I feel better than I used to after the tear but I believe the tear takes a while to get back to normal.

      Again, thanks Sue for all the advice , its always comforting to find your reply smile

    • suedm
      suedm fareen1987

      Posted

      That is kind of you! How is the healing progressing? are you nearly there now? I hope so

      I have nearly 250  unanswered emails as i have been away from the computer so apols for being slow in responding Take care Sue

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