Waiting on Biopsy

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Hello I am 40 and have just been told I probably have LS. Like every one who has just found out I am in shock. I go through waves of feeling very sad then I try and be positive because it could be worse. I am taking comfort reading all the forums on LS. I am worried about being intimate with my husband though. I am getting conflicting messages. My doctor has said go on as normal but I dont want my condition to get worse. I asked if I have mild LS he said yes, but not sure if he is trying to keep me calm. Feel a bit isoloated regarding LS. Would appriciate someone to talk to who is going through the same thing.

 

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  • Posted

    Hi....I'm a month past my diagnosis of LS and am still healing from my biopsy. My perineum area is the only affected area at this point. I continue to have sex with no issues, but I use a lot of lubrication just in case. I use a daily clobetasol treatment and in two weeks drop down to twice a week. The creme is bringing some color back to my white area. I'm hopeful that continued use will continue to clear it up. I've gotten over the shock of being told it's LS . I know stress is a major factor. Try to stay calm and know there is a lot of info on this site to help you. Best Wishes.
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    • Posted

      Thank you for replying. I have started using Diprosone it is my second day but still very itchy. Trying not to be impatient but wondering how long it takes to work. Trying very hard to not stress. Do you avoid alcohol or certain foods? Again I am trying hard not to over react but reading conflicting messages

       

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    • Posted

      I've been very lucky and don't have any foods that seem to bother me. I've read that sugar is a problem. As mine is mild, I'm hoping the cream will be the only thing I need. The weird part is I have zero itching from the white areas. I'm in US and not many people have heard about LS. It is scary, but I have learned alot from this page. One mistake I made was look at the images online....remember those are worst case scenario. We are treating ours, so I am hopeful for good results!
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  • Posted

    The mental part is pretty heavy at first.  Best thing we did, my husband and I, was talk about it.  It took a while before we were at this point, but then we did.  Bonus was that eventually we became more intimate in different ways, next to the sexual.

    And I like to ad -  I do dilation to keep all stretched.  Helps the intercourse.  Use lots of lubrication. Perhaps less spontanious, but necessary to avoid being hurt.   

    And better no intercourse when you have a flare up.

     

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  • Posted

    Hi Poppy, please try and stay positive, I know it's a shock and has been for all of us but you don't need extra stress on top of Christmas as may cause u to flare up. First of all if the doctor has told you to carry on a normal your symptoms can't be too bad.. has he prescribed a steroid cream for you at all. My consultant suggests using a very small amount every night when it's itchy, sore etc or until you can get things under control. If sex feels fine then it will be.. maybe use a lubricant (without any irritants )if you are worried to protect the skin and shower straight after. I don't seem to need anything except perhaps some soothing cream or oil afterwards to let things settle down. I use Perrins creme complete, available from their web site on line or oils such as emu oil or coconut oil , good for lubrication. I also use these on the days between using steroids. The only annoying thing I find is that I can't be as spontaneous as I once was and thingS have to be planned. I have had this condition for 18 months and it hasn't got any worse in terms of the look of it but lots of chocolate/sweet things set it off and make me itchy or sore. You will find as most of us have things to avoid and things that work for you. Also try and resist the urge to look at some of the horrific images online as I think they only print the worst case scenarios.. my consultant says i have also got this mild and think that as long as we look after ourselves and keep on top of this it will stay that way. Keep in touch Poppy and let us know how you get on. Remember these forums are great to talk and for information. Have a lovely xmas and new year love Jo x
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  • Posted

    Hello. I am 33 and just got diagnosed on Wednesday. I am also trying to deal with this emotionally as I am not sure what to expect. The doctor told me to carrry on sexually and he actually encourages me to stay as active as possible as I am not painful with sex and he said I am still structurally looking well. I do have some fusing on my labia minora to the labia majora but most of my labia is still as it was. I feel like I have been having symptoms of LS for years now that I look back on things. I am just not sure if LS progresses or stays the same with treatment. Did you doctor give you any info on that? I am still feeling confused.
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    • Posted

      Melissa, it IS confusing! First, LS has various symptoms; second there are several levels of severity; and third, doctors do not all agree on treatments. So it's very helpful to find people here who match our situation.
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    • Posted

      Thank you!  I am glad that I found this website.  I feel like a lot of research online is still leaving me in the dark. 
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  • Posted

    Hello if any one has insane itching please let me know what you do to get it undercontrol. Do the flare ups last long and its the cream supposed to be controling it? Since using the cream I feel more itchy than ever.
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    • Posted

      Some here say that they have problems with the cream but find a switch to ointment helpful. it does take time for things to settle!
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    • Posted

      Try baking soda soaks Poppy.. you can also make up a solution to use after passing urine. Also try coconut oil.. I find it really soothing.. Bless you, try ointment instead of cream as it soaks into skin better and try and go commando whenever possible to get some air to it.. hope this helps - Jo x
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    • Posted

      What Sandra said about the cream. It has extra ingredients that irritate some of us. My pharmacist was willing to sell me a refill but change it to ointment – then she noted 'patient request' on the label. Steroid ointment takes many months to get the deep inflammation calmed down. It doesn't usually control symptoms right away. It took 18 months in my case. This is why we talk about so many other helpful things in addition to the prescription. I've been using a few drops of pure frankincense oil in a 25 ml dropper bottle of jojoba oil for about eight months. I can't say for sure it's half of why things are nice and calm, or the fact that my gynae switched me from clobetasol to Protopic almost a year ago. And my stress is way, waaaay down. Baking soda baths (1/3 cup) for sure.
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    • Posted

      Thank you all for responding. It was confirmed today that I have LS and I am booked into see a Gynacologist. I feel ok now because there is nothing I can do about it. My Doc said she has quite a few patients with LS and the Gyn is a specialist in LS so it must be coming more common or more regcognised by the GPs.  I am so grateful for this forum otherwise I would be a mess. It has been my saviour. THANK YOU

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    • Posted

      Poppy, you'll probably improve just from having this attitude shift! You're very lucky to have an LS specialist.
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    • Posted

      Poopy Don't forget to look at the New To LS page on this site, and when you have time do watch the Dr Goldstein's webinar.It will explain in anatomical detail WHY you are having  the issues you haave and how to cope with some of the symptoms. It takes an hour have pen and paper to jot down stuff and i took screen shots from my desk top computer to look at - and print off to look at at my leisure. My diagnosis broke my heart as my marriage had just broken up and the thought of not being able to have a new love in my life was so isolating. The young registrar was particularly cold when i raised this issue.....(Who in their 60's NEEDS a new love???) That was several years ago and while i am still sinlge that is my choice. My symptoms progress steadily fairly slowly without too much bother. When i am very  upset stressed or angry THAT is when i have a flare up, so I try and manage my mood state. I dont have a very sweet tooth so sugar isnt an issue, but I do avoid smellies and wear pure cotton when not going commando -which i will do  in a flare up - Try and keep ALL body fluids from the area

      The Mantra Bathe, 90second massage of steroid wait 20 mins moisturise / barrier ointment.

      Scrupulously clean at all times- use a weak solution of Bicarb of soda IF you are a tad too acid in the area, you dont want to change the Ph too much from neutral

      AND most of all keep your stress levels down as much as you can

      Good luck 

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