18 and diagnosed, really worried and would like some advice

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Hi! I haven't really used a forum like this before. Basically I had been experiencing itching downstairs for the last 2 years and kept getting diagnosed by the gp with thrush. Eventually I went to a specialist when about a year ago sex became unbearingly painful. I couldn't have it at all. They initially diagnosed me with eczema and I started using eumovate which improved the itching and sex slightly. However it never went and I have just been back where a gyno told me it is actually lichen sclerosus. She did a biopsy and has given me dermovate to use twice daily for a month, once daily for a month and then every other day for a month. 

I am a bit painful downstairs due to the stitch and am not sure when to start applying the steroid cream?

I have invested in dilators to try and help with the sex. I can still have sex with my partner and it is enjoyable but there is a bit of pain at the beginning and sometimes I get cut. I think this must be due to the narrowing of the vagina.

Can anyone tell me if this gets better? The thought of having to live the rest of my life like this is horribly depressing. 

I've read so many stories about marriages failing due to the bad sex in lichen sclerosus and I don't want to never be able to be intimate with my boyfriend.

I have invested in some dilators and been using them prior to the biopsy. They had been helping. 

Will the application of dermovate & dilators help my condition? 

Thanks a lot to anyone who will reply

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  • Posted

    Hi Kasiaj

    Sorry to read of your problems. Unless your Dr advised otherwise I would start the steroids straight away. If after some time you feel the cream is not helping then I would keep going back to my Drs/Gynae until I got better results. Maybe a course of antibiotics may help, it could be inflammation etc.

     You should not still be experiencing pain if you've been given remedies. Maybe there's an underlying problem. If you still don't get any joy, seek a second opinion.

    I wish I could be of more help.

    Let us know how you get on. 

    Gloriana

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    • Posted

      oh dear so sorry.

      i would wait until the inflammation subsides and avoid anything that would further undermine your condition.

      i looked up anti-inflammatory diets...am new myself...but have had great relief by removing allergens...for me gluten, grains and dairy...in less than a week as others have too on here.

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    • Posted

      Thank you so much for your reply. I will start the steroid cream tomorrow I think smile

      Kasia

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    • Posted

      I don't suffer with major inflammation I just get a lot of itching, which did get better with the eumovate but now is a bit worse. It would get inflamed if I was itching a lot. So hopefully I can get rid of the two with this new steroid cream. Thank you for your advice. I read a lot about anti-inflammatory diets! Apparently they work very well. I will have to try them if things do not get better. Thank you for your reply

      Kasia

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    • Posted

      Hi Kasia Do watch Dr Goldsteins webinar, it will explain that with lichen sclerosus you NEED the scar thinning aspect of clobetasol to allow the therapeutic aspects of the ointment / cream to get to the deeper layers of the dermis(skin) to reduce the inflamation that causes the burning itching etc. The idea is to keep the skin of the vulva as healthy as possible and that will mean keeping it moisturised and protected from all body fluids

      Do NOT scratch the Itch! THAT will cause further inflamation and will quickly damage the area much more quickly than and  steroid ointment - which is much better than the cream. Do try an avoid penetrative sex for the time being- you will find in time it will improve - but first allow the skin to heal then take the sex very slowly at first

      As to the itch you can fool your body sometimes by scratching or rubbing another part of you body believing it to be your undercarriage..it can work well especially when you are out and about in public and you can't behave like a fella and happily scratch without embarrassment

      The one aspect you will have to learn is patience, it will take time for the steroids to work- but they will in time.

      Make a nice drink and take a notepad tothe computer adn watch the one hour long webinar - you will find the address in the "New To LS Start Here" https://patient.info/forums/discuss/dr-goldstein-lecture-271556If you look at the discussion topics you will see there are many threads that will help you get thro this tiresome condition. This is an autoimmune condition which while it wont go away will go into remission at times. Keep your stress levels under control reduce the sugar in your diet and ask you boyfriend to read some of the threads wit you- then he will be able to understand and support you more.

      (There is a condition which makes sex painful - not because you have LS or fragile tissue but because your body FEARS sex will be painful - this can be sorted fairly quickly with if you approach the condition the right way, check out the reviews for something called vagi wave)

      There are lots of helpful tips in the various threads and in the New To LS page. First do look at yourself in a magnifying mirror in a good light - you need you know if there are any changes and you will need to note if  any particular area is reluctant to heal so you can bring forward your appointment withthe consultant 

      This is a really tiresome condition and one that must not be ignored but looking after your self both phyically and emotionally you can improve a great deal

      Take care and best wishes Sue

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    • Posted

      Go out and purchase 99% pure or higher aloe vera gel. Just a dab will greatly reduce the itch.  I also spray first with witch hazel which is healing...I pat it dry and then apply a dab of the aloe vera. It is a blessing to be relieved of the itch. It has worked better that any of the other methods and products I have tried.  I always do this morning and night and sometimes in between if needed. After about 6 weeks of aloe vera gel use I also noted a great improvement in the appearance and feel of the private area. 
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    • Posted

      Thank you very much for your reply Sue. I will watch the webinar in the next few days. 

      I will take on all of your advice. Thank you again

      Kasia

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  • Posted

    Hi there Kasia,

    I am 69 years old, much older than you, but I can identify. I too had this problem for years, and was treated for thrush, water infection etc. It took a biopsy to prove it was LS. Sex became so painful, we had to stop altogether. Since we are an older couple, we both settled into a life without it. But, I sympathize with someone so young as yourself. Talk to your doctor about the dilators. I have read that they help. The steroid creams help a little, but you have to use them with caution. They tend to thin the skin and make it easy to break open. That is why I had to stop having sex. The vaginal opening will continue to decrease if steps are not taken. My prescription is for Clobetasol, and I have to use it sparingly for a couple of weeks, then gradually decrease it, and wait another month or two and start over. I sure wish there were a cure for this disease. It takes a strong relationship and a caring partner who is willing to research it with you, to understand the disease, Good luck, and I hope your LS stabilizes soon.

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    • Posted

      Thank you so much for your reply. It was a really annoying process to get diagnosed, took over a year! 

      Do you think the steroid cream will make sex worse? I felt improvement with the dilators so I am really hoping the combination of this new steroid cream and the dilators will make it almost back to normal. But perhaps I am being too hopeful. 

      It's very scary to read about all of this on the internet because it is much more common with older women and so there's lots of people writing about how it has ruined their sex life completely. So it's horrible thinking that might happen to me at 18. 

      I am lucky because my boyfriend is very caring and understanding about it all. But i feel so bad that this effects him so much also and feel very guilty. I am very scared that sex will worsen or stay how it is.

      I do not think my LS is too bad as there is not much pain, only itchiness. So the main concern for me is how this will affect my relationship.

      Kasia

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    • Posted

      You are young and so I think that the steroid cream and the dilator in moderation can only help you. Good luck. Don't worry about what is happening to others as that will take away from your own happiness. I was shocked when I was diagnosed because I had never heard of it before. Googling for me makes me feel that there are many others who have had the same experience. It maddens me that there is not enough research done and people, women especially, are not informed. I found that General Practitioner doctors didn't even know what it was even when a specialist diagnosed me. It's all about doctors getting the right training for something that is so very common and then medical science finding a cure or at least something to halt its progression.

      Cheers!

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    • Posted

      Thank you. I agree with you. Googling gives relief as you discover there's so many other people with the same thing, but it can also create a lot of worry as most of the cases are very severe. You wouldn't get a lot of people that are coping very well searching and writing on these forums. There is definitely not enough research into this which is very frustrating. 

      Thank you again

      Kasia

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  • Posted

    so sorry to hear about this.

    I was wondering whether you might have considered inflammatory foods as being one possible causation? I have heard about this thro my work but also read of patients here cutting out gluten, grains and dairy....so thought i'd mention this prospect. I'm trying it myself and finding great relief...but I am having to try to be more organised about food. That I find difficult but it surely has to be worth the effort as it seems i have been eating all the wrong things...even thinking my diet was  healthy...when infact it definitely was not!

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    • Posted

      Thank you for your advice. I think as I was just diagnosed I will give the steroid ointment a go and the dilators, as well as eating healthily. If I do not see much improvement then I will try some kind of inflammatory foods diet and get checked out for what causes me to be inflamed. 

      I don't want to do both things at the same time because then I will be able to monitor what is working for me!

      Thank you again and I hope the diet continues to give you great relief :-)

      Kasia

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  • Posted

    Adding my 'two cents worth":

    It could be possible that you also need extra estrogen.  That helps the flexibility of the skin.  Worth checking out.

    Also helpful might be - if you start watching your diet.  (I'm without sugar, gluten, alcohol, cheeses, for example)

    And I use coconut oil as a moisturizer after I rinse with baking soda water after every bathroom visit.  I also take baking soda baths.  And I use a dilator every morning.  

    Just a few items to look into.  Also good to watch Dr. Goldstein.  And browse through the various discussion on this forum.  The more you learn about your condition the better you will be.   Over time you will learn to act immediately and prevent worse.

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    • Posted

      Thank you so much for your reply. I will definitely take on your advice. I am going to stick with the steroid ointment and dilators for now and if they do not help improve my LS then I'll move onto changing my diet and perhaps estrogen. I think I shouldn't do all at once so I can see what helps me most. 

      Thank you again 

      Kasia

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