Sex is painful and steroid creams. LS just diagnosed

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I was just diagnosed with LS.  I haven't started using and steroid creams yet as the doctor seemed so hesitant to give it to me even after the LS was confirmed with a biopsy.  I have been managing using .50% cortisoid cream and Perrins ointment (so soothing).  Slight itchyness soreness now but nothing like it was a few weeks ago.  But now after having sex I am so sore and feel like my skin is split open at the base of the vagina.  Once I start the steroids will that get better?   Or do you need to use something else to build the skin up.  I am so worried I will never want to have sex again.

 

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10 Replies

  • Posted

    Hi Sue,

    So sorry you've joined our ranks. The ultrapotent steroid ointment (get the ointment, not the cream) takes many months, but it will help. I've had LS for 40 years and have had that tear countless times. After a  very much too-late diagnosis and two years of proper treatment my flesh is calm and if I get stressed out I still tear, but it heals the next day. LS makes that skin behind your vagina thick and stiff, but the poor quality of the skin makes it prone to tear and when it's thick, it tears deeply. The steroid gets down deep to the 'basement layer' of the skin to stop the inflammation. It also thins the crappy scar tissue.

    So, the answer to 'once you start the steroids' is, not right away. Some doctors also prescribe estrogen cream to bring back flexibility to the vulva. I don't know your age, all this is less optimistoic if you're past menopause.

    LS can go into remission. Stress is a huge factor. Sugar is a villain that works with yeast and LS in a vicious cycle. Most of us improve very quickly by cutting out the big hits of sugar. LS is not a surface irritation like contact dermatitis. It's more like arthritis. It needs a steady, slow, deep but tiny local dose of steroid.

    Watch Dr. Goldstein's presentation, linked in the top pinned discussion of this forum. And don't look at photos on the internet. Those are neglected cases. You have your diagnosis and treatment will gradually get it under control, but not cured.

    You've come to the right place.

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    • Posted

      Hi Morrell,

      It is so nice to have this formum and speak to people who have LS.  Not something I want to tell everyone.  I am 55 and haven't hit menopause yet though I am sure it is coming.  

      Thank you so much for your response.  

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  • Posted

    Sue I am hoping someone will be able to answer this for you. I am no longer sexually active. But I will say this, from this site I have gleaned the most helpful information and I am a former gyn oncology nurse! Baking soda baths have helped me tremendously, and I have also been putting a soaked warm tea bag in the area that affects me most. The tea has tannic acid that helps with healing cracked areas. Nursing moms use them on their sore and cracked nipples.

    I know it may seem like a lot of work but try it, what have you got to lose. I started the betamethasone ointment only 5 days ago and my itching is gone, however I am still dealing with a healing biopsy site and cracks.

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    • Posted

      Hi Mary,

      I have had a few replies and they all seem very helpful.  I will try the tea bags.

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  • Posted

    Hi I have slight  pain with sex but only at the start so it doesn't affect my sex life too much, I sometimes have to use some lubracation with really does help, not sure if you've tried that. Also I was having pain using tampons, but recently I've started using ones with an applicator and they are so much better I have no pain at all with that, I don't know if that will be helpful me telling you, but I thought I'd share some things that have helped for me. 
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    • Posted

      Hi Jessicat

      The start is okay but then the rubbing starts to burn only on the left side.  After I was extremely sore and it felt like a deep cut.  We did use oil but I think the skin is just so fragile it tears.  I am trying to stay positive but am a bit of a baby.

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  • Posted

    I found having sex that the following few days were really painfull. Luckily I am no longer sexually active so I don't have that worry. I find the tea bags, coconut oil and bicarb really helpful.
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    • Posted

      Hi Gill,

      Yes that is how it felt for me.  Okay initially but after the rubbing I was very sore and the next day it was painful to walk.  Ended up putting Perrins cream on it and that totally soothed the area.  Scared to have sex again.  Not sure how lung a tear takes to heal of if maybe it doesn't heal

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  • Posted

    Sue, you wondered about your sex life. I find that, next to all the other things we do (glob, coconut oil, bakings soda baths and rinses, diet without sugar etc),  regular dilation helps.  LS wants to narrow things.  The dilation helps stretching back to normal size.  I use fluid coconut oil as lubricant.  
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