Sore after sex - had LS for 3 years now

Posted , 9 users are following.

Hello everyone, I've not posted on here for a long time from when I first got diagnosed. I want to say what a great support network this is. I am struggling at the moment. I've been on protopic for 2 years which sort of manages the condition but I seem to have a new symptom. After trying sex after 3 years (!) I know - who feels like it when you have this disease I was shocked to find how incredibly painful it was - completely raw inside it feels. Had check ups for everything which came back normal but the soreness is still there. From what I'd read I thought LS only affects outside but perhaps I'm wrong about this. My partner has been very patient but to now go through this I feel will finish my relationship - please help! I really think this is connected to the LS and dont know what to do anout it! Thanks

0 likes, 8 replies

8 Replies

  • Posted

    Hi Donna, I am in the same boat, and it is definitely connected to LS.    However, I discovered recently that if I totally cover a dilator with ky jelly and use that just before having sex then things are a lot easier.
    • Posted

      Thanks - that's really helpful - can anything be improved or will things always be like this? I wondered if there was anything that can be done that improves the strength inside and makes things less sensitive?

  • Posted

    Hi Donna,

    The first time I had sex (after 4 years) it was so painful, I thought my tissues were ripping on the inside.  I was afraid my sex life was over.  But we tried again a week later and it was a little better.  It took awhile, but each time it got a little easier, and after my body finally got used to it, I was able to have enjoyable sex again.  Seems like LS narrows the vagina, so try stretching it gently with a dilator, and have patience.

  • Posted

    Might it be atrophy?  If so it could possibly be helped with an estrogen cream....  Something like ovestin?

    I've not been able to have sex for a couple of years and am due to go in for an op to reduce the scarring, but the gynae did warn that afterwards sex might still be a problem due to atrophy......     

    Oh joy. :-(

  • Posted

    I undertsand, my husband tries to understand but it takes me weeks to recover from sex. Even when I think its doing well, and Im managing, sex just re irritates. Any touch does for me. The act of putting on clob is bothersome. Thats the way mine has been since the beginning. So obviously its hard to want or enjoy sex at all. Its like being rubbed with sandpaper and my skin is always red and raw.
  • Posted

    I still use a dilator every third day to keep the vagina opening stretched.  Als use a hormone replacement cream, which seems to keep the skin more flexible.  Both are important maintenance for my sex life.  With the dilation I cover the dilator with coconut oil. Before sex I cover my bottom with coconut oil as well.  This far I'm good.

  • Posted

    Hi Donna, I can't add much more than what the other ladies have said, I don't know how old you are, but I'm in the menopause and the gynaecologist has put me on vigifem to help with the skin inside the vagina, only been on it about 10days, tried it out for the time last night, used lots of aqueous cream even on my hubbies bits...lol it was a little painful to start but after that it was fine, I was the biggest problem because I was tense thinking it was going to hurt. No problems after either....well non more than normal anyway. Nurse said to keep doing it, it will get easier, alright for her to say she hasn't got LS...lol

  • Posted

    Hi Donna, I haven't posted here before either. I understand completely what you're going through. I was diagnosed in September with quite advanced disease that I hadn't realised must've been there for some time. It was only when I got really sore and had ulcers that I went to the doctor. I was fobbed off with antibiotics by the first (male) doctor, but instincts told me he was wrong and I went back the following week to see a lady doctor who examined me and pretty much identified the problem straight away. That was in May. I had biopsies in September which confirmed it. I've been on clob since the start and every time I try to tail it off the soreness and ulcers return. Sex is a big issue for me too. My partner likes a lot of sex and things have been very difficult. I think maybe staying sexually active (obviously not during flair ups - too agonising) has helped with comfort inside along with topical HRT. Outside is a different matter and due to recent problems with fissuring I am right off sex. My partner of only 4 years is beginning to pester me a lot. I'm feeling the pressure but in my head sex = pain so I'm struggling. However I do know that the longer I leave it the more things will tighten up and the longer it will take to get things moving and comfortable-ish again. It's a bit of a balancing act and I'm not sure I have the balance quite right yet as I'm never without pain during sex. It's just a matter of degree for me. I am menopausal and I think that adds to the problem because of vaginal atrophy.

    Like yourself I've been back to the dermatologist who only tells me bluntly that this is a chronic disease and I'll have to live with it. End of story for her - not so for the sufferer. This disease is vey difficult to come to terms with.

    I have found some good products which you might also like. For lubricant I get on with Slippery Stuff. I moisturise the vulva 2 or 3 times a day with Hydromol ointment or emulsifying ointment. Sometimes coconut oi, but this is only soothing for me and I find it too thin to use under the lubricant before sex, I use hydromol here too. I am down to using clob every other day now. I have irreversible fusing of the labia minora and scarring around the clitoris and perineum and all along the left side of the vestibule which causes me the sandpaper effect when touched, this is where I'm prone to tearing. I find HRT cream irritating so I use pessaries. I avoid soap completely as I also get the lichen on my back and neck. I wash with Hydromol or Aveeno Dermexa body wash. I use nothing fragranced at all. I wash underwear in soap flakes and rinse twice- no fabric softener. I think these measures help but my heart goes out to you because they only help to minimise flare ups and aid recovery after sex. I also always wash with cold water straight after sex to minimise irritation and apply a good helping of coconut oil or Hydromol. I don't know if you already tried any or all of these things and if you did I'm sorry for telling you what you already know. I hope there might be something there that you find helpful. I'm open to suggestions too!

    Debbie

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