Introduction - newbie hello!

Posted , 7 users are following.

Hello ladies,

I was diagnosed with LS on friday. I didn't agree with the diagnosis since i had no white patches, but alas i saw someone else for a second opinion and apparently yes - it is LS.

At the moment i am using dermol 500 as an emollient several times a day and i have been prescribed two different strength steroids. I'm not sure which is best to use to be honest. All i know is nothing is giving me much relief i am sore, burning and itchy all at the same time. I cant go to the gym as i cant bear the thought of lycra, and my husband is moaning that he's not had sex in a month (like i care!).

I am only 31 and to be honest, scared of the future progression. i read a lot about it and understand the increased risk of vulva cancer (I've already had an abnormal cervical smear and low grade changes, I'm positive for HPV (and strep B, although not pregnant and not planning any more babies so thats not important).

i just wondered if anyone is my age and how theyve found progression. i'm worried i'm not ever going to get it under control so i'm not constantly aware of my bits!

thank you for reading and apologies for the lack of capitals and imperfect grammar. i've written this on my phone and autocorrect isnt working and i'm too lazy to go back and fix it!

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4 Replies

  • Posted

    HI Alexandria, pretty name I have a son Alexander. Yes when I saw my GYN I Didn't agree either. I complained of great burning, unable to sit and couldn't stand underwear against my body. N O white spots, no itching, etc. At present still trying to cope. Cannot sit properly, must sit curled up somewhat because hurts to sit properly and carry a rubber donut with me at all times. I am on Clobetasol and Vegafem, not sure that they are helping at all. My research claims that if you have had a lot of URINE INFECTIONS it leads to L S! i have had many in the years past. However another painful problem has come to me. i have developed Sciatica. I guess the sitting all curled up has led to a pinched Sciatica nerve. Most painful and this too seems not many hopes for healing. Hopefully your Dr. will find something to make you comfortable, my GYN tells me to be patient, it will take some time. If you do find something do tell us about it K?

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  • Posted

    Hi Alexandria, I'm not in my 30's but can offer some tips. At the moment you are experiencing some LS symptoms which you need to get under control asap. I wonder what your doc told you to do?

    I would initially use the stronger steroid cream to try to get on top of this flare. Twice a day for a week, (less is more with the clob cream but If you think you are reacting to the clob, just use it once a day instead of twice).then once a day, then alternate days and so on is the usual procedure for many. I would stop putting the dermol cream on numerous times throughout the day as it sounds like its not helping and it could be aggravating the problem, besides LS like variation and so it is better to rotate creams/oils.

    What many of us have found is that excluding dairy, cutting back on sugar and sometimes even going gluten free stops the itching/symptoms.

    At the moment it may seem awful but i can honestly say that once you know how to manage your LS things will feel better and at your age you will likely have periods of remission that can last years.

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  • Posted

    hey girl! I am 36 years old and as soon as I was diagnosed i used the high potent steroid cream, my insurance did not cover the ointment. My white spots are all gone, the sore butt crack and anus is gone, and I’m having amazing sex.

    i was using avocado oil to moisturize down there, but currently I’m not using anything. I was constantly checking my parts, it became an obsession and I thought I would never be able to just leave them alone. But once the itching and the pain go away you slowly forget about LS, and only occasionally check because you haven’t done it in a while so why not.

    I hope that your husband doesn’t groan too much!

    Follow your regimen, and use that steroid! Hopefully it all calms down soon. XOXO

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  • Posted

    Hello everyone - thank you so much for your replies.

    After I posted I went through some of your messages on the board and reading what some of you are going through has broken my heart - loss of architecture, pain and doctors who don't understand what you're going through.

    I was initially prescribed Xyloproct to use 4 times a day as it contains lidocaine so was helping with the pain. When I returned for a second opinion (and because there was no improvement), I was given Betamethasone Valerate which google tells me is Betnovate. I am using this twice a day at the moment. Guppy I'll follow your advice on how to use this - do I reduce down to once a day etc. even if there's no improvement within a week? I did read online that it's taking some people up to 12 weeks to get through a relapse.

    I have read on this forum the use of Borax? What is this? I'm in the UK if that makes any difference. I bought some E45 bath emollient which I used to soak and wash last night.

    I currently take a Well7 supplement as I feel I have a hormone imbalance (hormonal acne, irregular periods which used to be over 30 days and are now anywhere between 24 and 29 days, loss of libido post ovulation). I have binge Eating Disorder so go through periods of healthy eating and periods of eating aaaallllll the sugar. At the moment I'm in a good period. I was also vegan last year so don't have a problem with going DF again but I read so many bad things about soya and oestrogen that I couldn't decide what was the lesser of two evils. I know there are plenty of other plant based alternatives but soya was my favourite in coffee. I am in the process of switching over to decaff. I cook mostly from scratch but we do have cheese, real butter and cow's milk most days. I guess I should try and cut that down at least and see if it helps.

    Thanks again everyone for reaching out. I hope you're all doing okay xx

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