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

LS and sex?

Posted , 9 users are following.

enigmas
enigmas

hey everyone. i am 28 and was diagnosed with LS yesterday. i assume this has been going on for years. the last time i had sex was three years ago and my perineum tore so badly i had to get stitches. i havent attempted again since because it scares me. to be honest, sex has always hurt and i assumed it was normal. i want to start dating again but i am so scared and confused. how did you guys approach a partner about this? can you still have sex? has dilation helped? any tips? i am in pelvic floor physical therapy currently for anterior prolapse as well, and she has worked on training my body not to tense up so much, which will maybe help with the internal tightness? i am pretty devastated about this. there is fairly noticable narrowing and scarring. any insights or experiences are welcome!

0 likes, 7 replies

7 Replies

  • sophie12194
    sophie12194 enigmas

    Edited

    Hi! I'm 29 and I have been diagnosed for a few years now. I've gone on to have a healthy sex life and 2 children naturally so there is a light at the end of the tunnel 😃

    My issues first started with uncomfortable sex which then progressed similar to you where I was unable to have sex at all. I would be in tears and frustrated. I would say that at least half of it was psychological as the fear of it hurting was making me tense up and stress which obviously caused more pain and discomfort.

    My doctor gave me a basic natural lube which I wasn't sure about but along with the steroid cream it actually helped a lot and in no time at all I felt back to normal. I think it just helped take some of the worry away so there was more time to try and relax.

    I'm sure if you met someone genuine and caring then they would be willing to take it slow and help you overcome the issues. And don't forget there's plenty of things to do other than straight out sex 😉

    Good luck!

  • sandra64898
    sandra64898 enigmas

    Edited

    Here I go again: I had an older female gyno in BC Canada confirm without doing a punch test that yes I had the classic crazy 8 (thank you, I don't want any further trauma to my beat up vulva) and scaring on my vulva and looks like Lichen! Believe me the Gold Seal Medical system didn't help - might have prolonged my torment. With our patch work medical system I ended up after 5 years of frustration enlisting as a patient of a hormone specialist (no botox stuff here) and well worth the cost. I am on a very low dose of bio-estrogen (and progesterone if you have your uterus intact - very scary for many doctors); 200 mg progesterone and same bio-estrogen ratio. I will strive to be on this program until my 70s (I am 60 at this writing started the lichen in my mid 50s). This site in it beginnings really helped to inform me with all the reportings that estrogen really helped vs the "major medical authorities" saying that hormones don't help. Good luck during this Covid19 time to get the help you need - it is out there - just do your homework!

  • Ashley_Jo
    Ashley_Jo enigmas

    Edited

    Hi, Firstly, stay positive and learn how to manage your condition. Dilators do help - but you may need other help. if it's difficult to have sex you can have minor surgery to help. I had difficulty for several years and saw a few doctors before finding a solution. it was just day surgery with a few days of recovery - it worked. it was uncomfortable but not really painful - it was worth it. However, after surgery i have had to continue using dilators and ointments/creams - LS needs to be managed, there is no cure for it. Please don't be discouraged some doctors - you really need to see a specialist. good luck. I am based in the UK

  • Vero84
    Vero84 enigmas

    Edited

    Hello,

    I am sorry you are going through this. I was exactly the same, always tore a bit around the perineum when having sex and thought it was normal, or that I was just small. I also had fusion above my clitoris so any stimulation had to be done super gently and obviously didn't feel much. I didn't have other symptoms like itching, just this horrid scarring I had since I was a child. I thought this was going to be all my life, then last year I saw a gyneacologist and she changed my life. She did a small operation, fixed my perineum (fentons procedure) and removed the scarred fused tissue from my clitoris. She has done loads of ops like this. Sex is finally painless! Where are you located? I'd me more than happy to give you her details. I am in the UK but I know of a lady who had the op in the US, I can put you in touch. It can be fixed, please don't lose hope. I am 35 and wish I met this doctor earlier! All the people I've seen just dismissed my problem and made me feel like I was some sort of freak. You'll be fine, but you'll need a small surgery. Message me anytime.

    • suzanne25846
      suzanne25846 Vero84

      Posted

      How awesome is that Vero84! I'm just starting a new relationship and due to COVID-19 haven't had to address this potential issue yet however it is great to know there are surgeons out there that can help. Can you share the doctors name?

    • Vero84
      Vero84 suzanne25846

      Edited

      Of course! So I have private insurance and luckily I got referred to her in Circle Bath Hospital. They are still Covid free at the moment. You can make an appointment with her directly, I honestly did not expect the insurance to cover it as I had symptoms since childhood but as it was only now diagnosed they did! My doctor's name is Dr Aisha Qureshi and she was so so nice! I honestly think if it wasn't for her I never would have done this surgery as I was so afraid of it, especially that I had so much discomfort in the area already. She empowered me like no one else and the recovery wasn't so bad either. The hospital also offers payment schemes so you'll be fine even without insurance. My total cost was about £1200 including the visits and everyone's fee. She said she has had cases when the whole labia was fused and there was only a tiny hole for urine to pass. So she's really seen it all. I wish I could afford her to be my regular doctor for all my check ups! But it's so reassuring to know that there's someone I can turn to if I have a flare up or any issues. Best of luck to you and if you have any questions do let me know. x

Back to top

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.