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Distraught over new LS diagnosis!!

Posted , 18 users are following.

nicole1990
nicole1990

Hello. I have just been diagnosed with lichen sclerosis a few days ago. I am 25 years old and this is devastating to me. I am from Canada and I am currently living in London England. I had a vulvar biopsy about a month ago which has left a bump/scar. I am currently travelling around Europe for he summer and the heat is making my ls worse. I do not have any treatment creams because my biopsy results came back while I was still away. It took about 6 months for me to see a specialist in London. I currently have clitoral phimosis and my labia minora has almost disappeared. I am distraught about this. Will the steroid creams help with the phimosis? On top of this, I have just started dating a man in England who has no idea what I am going through. I don't know how to bring this up to him. I feel embarrassed about it. We have only been dating for three montha. I would really appreciate some advice on all of this. Also, I have been using biooil on my vulva while I have been travelling since I am unable to get any treatment until the end up august. Thanks.

0 likes, 28 replies

28 Replies

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  • pammypooh
    pammypooh nicole1990

    Posted

    It's so hard being in a new relationship may heart goes out to you. And then dealing with LS on top of it. Everyone's symptoms are different and treatments are there for each other hopefully you'll get to see someone who can put you on that road that will help you. I to have the problems is disappearing clitoris and I have had surgeries for major fusion down there. I following my own daily routines that help me stay comfortable. I don't use the steroids anymore but I use my estrace cream for hormones replacement. I do have flares ups. Some bad, I just have to find my on relief because I've tried so many things to help. Just be careful not to try to many at once. .do one at a time. So you know what helps and doesn't help. Prayers for you.
  • Guppy007
    Guppy007 nicole1990

    Posted

    Hi, sorry you had to join this group.  In the age of phones/IT could you not get a copy of your diagnosis sent to your phone, and then make an appointment with an emergency local doctor with the express wish to receive some Clobetasol cream.   I think I would want to be using this asap,  as it could possibly help with the phimosis, or at least stop it from getting worse. 

     

  • hanny32508
    hanny32508 nicole1990

    Posted

    Simplest help I can give you is - start rinsing with baking soda (three pinches in a Perin bottle) deb dry and cover with coconut oil after that.  Take baking soda baths (1/3 cup) and add some tea tree oil drops as well.  (if you can every other day)  

    Next - watch your diet: no sugar, no alcohol, no gluten, limited diary. Lots of vegies and good fruit.  Avoid packaged food that claims to stay forever 'fresh'.  

    This should help you on your way.

  • Snowlily
    Snowlily nicole1990

    Posted

    Hey there, I sympathise i know how you feel Im only 23 and suffer with LS and now with zilch labia minora and also vulvadynia.....definitely not a picnic and something very unfortunate that we shouldn't have to deal but crap happens, lol, I've found that you've just got to look on the bright side of life I mean we could be much worse off, I don't think you should have to be worrying about telling the person your dating it's only been 3 months and it's not contagious or terminal so why not wait until you've sorted medication and got it a bit more under control and at a point where youve accepted the situation and are comfortable with talking about it and don't feeso embarrassed and maybe wait till the relationship is more evolved and not just at the starting point?? Enjoy the care free honeymoon months without any complications thrown into the mix, by all means tell me to shut my mouth if you think I'm being to forward in what I'm saying smile I've been told i can be quite blunt in what I say smile I hope you get it under control soon and the steriod cream does help and will slow or possibly even stop the phimosis.

    Bio oil doesn't sound like a good thing to be using either rolleyes xxx

    • nicole1990
      nicole1990 Snowlily

      Posted

      I am sorry that you are going through all of this as well! I appreciate your advice - I would love to not mention this to the guy I have been starting a relationship with but I have no other choice. I have a bump from the biopsy and pain/irritation on my vulva. It has only gotten worse while travelling rolleyes. Also the next available appt to see the specialist again is sept. 25. I am feeling stressed out. Thanks for listening.
    • suedm
      suedm nicole1990

      Posted

      Hi I developed The Itch on my Undercarriage when I was travelling - and getting too hot- in OZ- eating too much and my trousers got too tight - I thought I had Thrush and called into a chemist- pharmacist - who advised me to use a high dose complex B vitamin. She said it would help with my sleep, the stress of travelling and the mouth ulcers I had acquired too. It did help the latter and to a VERY small extent The Itch. I also had an anti thrush cream- Had I known I would have asked for the one with steroids in, albeit a weaker dose than required

      Perhaps you can get a hydrocortisone cream - one normally uses for insect bites - but I think I would try and get an appointment with a local GP - who speaks English and explain your great discomfort

      Try to wear pants x2 or 3 sizes too big and wear long skirts if you can  to cool the area - Cool damp flannels when you're alone gently pressed on the undercarraige can be soothing too

      Pecker up Enjoy your new experiences-( travelling I mean) Good Luck Sue

      Complex B is said  to reduce stress levels

      Is you boyfriend travelling with you or in London?

  • callianne_65675
    callianne_65675 nicole1990

    Posted

    Gosh I hear you regards the long wait to see a specialist. I am in the UK too. I find (if this is any consolation) that it is hard to tell anyone, a current lover, an old lover a new lover. My BF doesn't seem to really 'get it', although, don't get me wrong, he tries and is gentle etc., 

    Do you feel as though you can tell him, in a way that might be a sign that you may or may not be ready to have sex with him? I think trust is important before we have sex. (I would use that idea or throw it away as you feel fit!). 

    There are other ways to enjoy each other, in intimate ways. I personally find penetrative sex SO painfull. When I do go ahead, I use TONS of coconut oil and make sure I am very wet inside and outside, it helps a lot. I also have found that using a vaginal moisturizer which is clear in colour, really helps remove the pain. I insert that before sex.

    If a guy is worth his metal, he will be a trooper and be patient!

    Olive oil, coconut oil and Sylk are good methods of keeping the vulva moist and comfortable. Not sure about Bio Oil. 

  • virginia45494
    virginia45494 nicole1990

    Posted

    Hi there!  I'm so glad you have joined this group.  I've had LS for about 20 years now and I'm married with 2 kids.  I'm now 45.

    I'm not sure if you organised medical insurance for your travel, but I agree it would be great if you could see a GP while you are travelling to get an appropriate medication/ointment.  If you are in Europe, write down "lichen sclerosis" on paper and the local word for "medicine", as it will help them to understand what you need.

    You have great advice here.  I agree with the suggestion of keeping things moisturised and coconut oil is great (you should be able to buy in a well stocked supermarket or health food store).  

    While you are travelling, use cotton underwear and think about wearing dresses and skirts, rather than jeans, to avoid rubbing.    

    When things are really sore, I have also found using a baby nappy/diaper cream (like cureash) is soothing.  Look for something with lots of zinc, as that helps with healing.

    If you struggle to find coconut oil, this might be easier to buy while you are travelling.

    With sex, there are a couple of things to think about.  If you are inflamed, then you will want to avoid excessive rubbing.  Use moisturising creams to help elasticity.  Bodily fluids might be irritating, so using a barrier cream (for you) and condom (for him) can help.  Also, dont be afraid to be creative in your love making.  Boys love a focus on them!! Plus, there are different positions that I find more comfortable than others.  My husband (and I think alot of guys) are understanding as long as you talk to them about what is ok and what is not ok.  (Lets face it, every sexual relationship has likes and dislikes).  Dont worry about your changing vulvar - women come in all shapes and sizes.  The main thing is to avoid pain.  When you get to the sexual stage of your relationship, talk about experimenting with different things to see what works, this can be lots of fun if you present it that way!!  He can help you work it out.  If your vaginal opening has tightened up, you may need to take it a bit more carefully.  I hope this helps!!

     

    • suedm
      suedm virginia45494

      Posted

      What good advice - I saw it after I had written to Nicolle.  And I suppose one should remember the the men - boy friends - are equally unsure of themselves, the first time, and may be grateful for guidance too. Most worth their salt will be kind and considerate and will hold back if one winces with pain. If that happens another form of activity can take place which will satisfy him - if not you - which will be difficult if pain is the result of any particular action! the subject can be broached later on
  • kris09489
    kris09489 nicole1990

    Posted

    You are not alone, Nicole! We are all here to support you!! smile

    I'm 28 and was officially diagnosed 2 years ago. At the time, my boyfriend and I had only been dating for 3 months. It was scary to go through something so new and personal and share that with him, especially because of the area of your body that it affects. Be honest and be open, so he can better understand what you're going through. If he's a good guy, he'll want to understand and do what he can to help.

    Sending you good vibes! Hope you feel better soon!

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