The ideal situation for everyone with lichen sclerosus is to be able to manage the condition, to be comfortable and to be able to continue (or even start) a ‘normal’ sex life, for the rest of our lives. The ages of those who make contact range from teens and twenties to the over 80′s – yes both men and women still enjoy sex in later life and it is not just the mechanics of sex, it is the affection and intimacy that goes with physical closeness. When sexual difficulties come along, many women (and men) shun affection and closeness for fear of it leading to a sexual situation that they feel afraid of or that they believe will be so difficult that their partner will not understand. Over the years this organisation has received hundreds of emails asking for advice on how to manage problems that occur in their sexual relationships as a result of having lichen sclerosus. There are bound to be more questions than there are answers for because everyone’s sex life is unique to them, they will have their own likes, dislikes and beliefs. A good sex life is still possible. One of the keys to keeping your sex life alive, is to make sure that any problems are dealt with as soon as they happen. Some people make contact and say that they have not had sex for over 10 years and when you investigate further, what becomes clear is that the problem could have been overcome if it had been treated earlier.
Itching and soreness will make sex uncomfortable. Lack of lubrication will cause discomfort, not engaging in sufficient foreplay may also cause discomfort. Tearing will cause stinging and make many people afraid to continue. Narrowing of the vaginal opening is a common problem that can be helped by the use of vaginal dilators and if necessary, surgery. For men, if the foreskin is tight, there is help for this. There is no need to suffer. The medical profession can offer help. Labial fusion and also clitoral and clitoral hood fusion can be helped. Sex and sexuality is a huge, vast subject and is not only about the mechanics but the emotions as well. Some people who have developed difficulties with sexual activity then develop emotional and psychological problems. They find it hard to adjust to new ways of ‘making love’ – yes….’making love’ is important. In the 21st century the population is bombarded with articles on how to have better orgasms (not helpful if you have clitoral damage), how important sex is and how you are really not quite ‘normal’ unless your love/sex life conforms to what writers, media and cinema describe. It is for this reason that some of the links here will lead you to explore other ways of pleasing your partner, new ways to show your love, new thoughts about your body and pleasure and how to share in mutual pleasure without penetration, something that has become known as ‘outercourse’.
This page welcomes open discussion and not just if you have LS but if you have a partner who has LS and you need support too. You are encouraged to share here.
I have recently been diagnosed with LS and have been wondering if sex/clitoral stimulation is more damaging to the area/detrimental to my steroid treatment or can I continue a normal sex life throughout treatment and beyond?
I was diagnosed with LS a month after I married my husband. We have been through hell with our sex life but we have finally started to get better. Sex hurts, burns, causes swelling, throbbing, knife stabbing pain, and is just not worth it to me. But obviously my husband needs to have intercourse so I give in, but I don’t want to. Don’t get me wrong, I have a great husband and he has been there every step of the way. But as young newlyweds, this was not the best way to start off our marriage and it’s very hard. I use lidocaine during sex and then have to put it on for about 30 min after intercourse because the pain is so bad. Hot showers help as well. I tried the Tricyclic anti depressants but they caused me to black out and one morning I slammed into the bathroom sink, so I stopped that. I just wish there were answers and ways to make the pain more bearable, I can’t even use tampons because they hurt so bad. I just turned 24 and have been married for 1.5 years, I know I can’t live with this for the rest of my life, my relationship might not last either
When this group started in 1996, pain and LS were never used in the same sentence. However, over the years, it seems to be mentioned. The view held by many is that LS is not a pain syndrome but vulvodynia is and it can co-exist with LS, which makes it very confusing. All the treatments you have been offered are consistent with treatment for vulvodynia not LS and it may be helpful for you to do some reading on vulvodynia – try http://www.vulvalpainsociety.org The VPS hold excellent workshops (if you are in the UK) and well worth attending one.
I did what you suggested and looked into Vulvodynia, then I looked back into my my medical records and it HAS been mentioned. I guess they threw a lot of info at me and I over looked that. But it all makes a lot more sense now, thank you!! I can’t wait to start trying these other remedies I have come across.
I was diagnosed with LS this week (Feb. 28, 2012), by the director of dermatology at the University of Louisville Cancer Hospital. I was first diagnosed with generalized morphea in 1994. Just in the last year and 1/2 my condition seemed to become more aggressive, affecting my genital areas. The doctor has prescribed the smallest dosage of Methotrexate (3 – 2.5 mg tablets on 2/29/12, again on 3/7/2012 and 3/12/2012). During that time I have two look workups and speak with him directly over the phone. By the 6th week I have an offe appointment with him. I’m curious about how other women have been affected such as: pelvic bone pain, severe joint pain, numbness (it’s primarily my left side from my hand to my toes). My vaginal opening is shrinking, I’ve seen physical changes almost daily in and on areas of my body. At this moment I’m in a bit of pain in my lower back into my left side. Feels like pressure or a pinched nerve. Does anyone else experience these?
My dermatologist prescribed Cetomacrogol cream for washing as well as prescribed use of Dermovate, the use of which does need to be explained to you, I was advised to use it twice a day for 3 months and thereafter as required. I find a tub lasts me for about 2 months or more now.. He warned me not to use soap, shower gels etc, to wash my hair separately, ie to have no contact of chemicals with any part of the body. I use a separate towel for my hair and a bath towel for my body. I notice I need to wash my towels more frequently than I used to. It took me a while to accustom myself to using the Cetomacrogol cream but I use it automatically now. I think lots of GPs don’t know about the problems involved involved and it is important to see a specialist. I did not enjoy my visit to the Vulva Clinic, where I was seen by the dermatologist and gynaecologist together, but I am most grateful to them for their advice in such a difficult encounter. I do wash my hands with normal soap because I must wash my hands countless times during the day since I do a lot ofcooking and have animals in the house.
Husbands don’t really understand the loneliness involved in the sex situation, although of course it makes them feel lonely and unfulfilled, too. They seem to equate your reluctance to have sex with your not loving them. How could anyone not want to have sex with them? We can give them pleasure in other ways but that doesn’t cater for ours.
I hope this is of some use.
I was finally diagnosed with LS about 3 years ago, I’m sure i have had it much longer. Like many others, I have suffered with lack of lubrication, itching, tears, etc. I have a long term partner of over 30 years, we haven’t had sex for more than 2 years this time. Can anyone give feedback on the use of Vaginal Dilators. I would like to try them, and the Dermatologist and Doctor at the GU cloinic agreed it would be a good idea. I just wondered if anyone has experienced any side effects, good or bad. Any feedback will be appreciated.
i know how you feel after vulva biopsy a year ago i have only been intimate once with my husband and it is now starting to affect us has he thinks i dont love him but it is so painful,i have only been given dermovate so i may go back to my doctor and ask for the cream to wash with .to see if it helps.
I’ve had lichen sclerosus for two and a half years now. I use Dermovate and Betnovate on alternate days, however I’m in constant pain and discomfort. I’ve not had sexual intercourse for the last 4 years due to vaginal dryness etc. following the menopause which I’m now post-menopausal. Can anyone advise me how to widen the vaginal opening or what products are available? My vagina is now virtually non-existent and the result psychologically is severe depression and lack of confidence. I’m only 62 and normally a happy person but the lack of intimacy and feeling like a “normal” woman no more is destroying me. Please help, as I want my life back!
Valerie, not sure where you live in the world but there are things that can help the widening problem. There are dilators which can be used daily or at least regularly to stretch the opening and there are surgical options. ( I am 65 and used dilators for six years) Look at http://www.mdti.co.uk/vmchk/Female-Health-Products/Femmax-Dilator-Set/flypage.cafe.tpl.html and ask your doctor about how you can be helped. Mail me one to one if you would like to admin@lichensclerosus.org