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Done with this horrible thing now.

Posted , 8 users are following.

che05779
che05779

Hi!

I've posted a few times before so i'm sure some of you will know my story.

My question is how do you cope with this mentally?

I'm 21 years old and its really starting to affect my life now on a daily basis physically and mentally. How are you supposed to have relationships with anyone? Its rare that I get a period of remission and I find it really hard to get my head around at my age how i'm ever supposed to get used to this or live with this or ever find someone who will understand this?

I just really need some advice now 😦

0 likes, 10 replies

10 Replies

  • stephanie67223
    stephanie67223 che05779

    Posted

    hi,

    I've had this for five years the first four I only had flare ups twice a year. but Last year it for 10 months it seemed to be constant. I read alot on other people info. but nothing seemed to help. I did what they suggested I'm not sure if any of it helped. I think it depends on how severe your case is. but others suggested to soak a cloth in bicarb soda for thirty minutes a night. use coconut oil to keep area supple and for sexual intercourse. my doctor gave me 1% steroid to use every day if need be and the clobetesol cream to use on flare ups. I had two months with no symptoms but the last week hot burning. I just started a new relationship 2 years after I was diagnosed but until last year I was only having a couple of flare ups a year so never told him as I felt to imbarrassed but I had to tell him but I told him just the least as I feel ashamed of it. it's a horrible condition. but quite common actually.

  • brigitte_27336
    brigitte_27336 che05779

    Posted

    Dearest Che, i'm so sorry for your suffering at such a young age. My name is Brigitte and i am 46. Got disgnosed 5 years ago... but i think ive had this since i was approx 9 years old. I say i think... because (my normal) was never every other girls normal. What im saying is... i wad told i had eczema at around 9... but also i never had very proeminent labia minora ....so i think it was LS starting and in the 80's. well i dont think it was a very known disease. i can just say i lived a very normal life... maybe because i didnt know it was this crazy disease. The fact that you know you have LS....will be an advantage...for you will be able to get on top of things. And that way your LS will not get out of hand. Always se the positive in your situation and dont hesitate to come on the group to get tips,answers, and a little cheer me up. Follow doctors order and use the Little tips you find on group...As for guys... you wont have problems to have a great love life...keep yourself and spouce educated on LS and show him this group so he sees your not the only one with LS. THE RIGHT ONE WILL LOVE YOU WITH YOUR IMPERFECTIONS.... EVERYONE HAS SOMETHING NO ?. Cheer up and grab life by the b.... Lol. remember to check with miror and hydrate eat well, use the clob snd after forget about it and do your Day. Do not loose time just worrying ....theres no use for it. HUGS AND KISSES 🌷

  • joanna43-
    joanna43- che05779

    Posted

    Dear heart, have you read the thread on Borax? It was a Life Saver, mentally and physically! I have found that i am able to have Long periods of normalcy now! When i first found the Borax thread I was using a topical steroid all the time without any results. in the beginning i followed the instructions faithfully and experienced a complete remission of all of my symptoms! Over time i was able to spread out the treatments and remain symptom free! i recently had a surgery and my symptoms reappeared .. itching, burning etc. I immediately took the Borax out and made a saturated solution and applied it my vaginal area.. I also started soaking in a Sitz bath twice daily with an immediate reduction of my symptoms! i will stay on this routine for a few weeks and then slowly wean off.

    Please find the thread and you will find immeasurable help and encouragement!

    • che05779
      che05779 joanna43-

      Posted

      Hi I have! However i'm in the UK and we can't get it here 😦

    • sarb73328
      sarb73328 che05779

      Posted

      You can get it in UK on Amazon. Make sure you get Borax Sodium Tetraborate. Got mine through 'Pure and More'.

    • Bridge_of_Sighs
      Bridge_of_Sighs che05779

      Posted

      I'm in the UK, and I ordered it on E bay from the US, it arrived just fine, though I suppose it's always a risk. It was quite cheap, the postage was more than the product. I got 20 Mule Team, the one the women from the USA have been talking about in the 'Experiment with Borax' thread. Also The Soap Kitchen in Devon sells it online (sodium Borate) can someone check that that's the same thing?

      Are you anywhere near Bristol? I can let you have some to try if you are near me. Also some of have started a a support group here.

      You will find a normal where you can live your life with only minimal reference to LS, but it does take time to work out. Borax was the thing that worked for me, but we are all different.

      Best of luck

      Bridge

  • joanna43-
    joanna43- che05779

    Posted

    You may find the thread " An Experiment with Borax" under the "hot" Button ! Please check it out, you will be very excited! God bless you on this journey, there is Hope and Life for you !!!

  • sarb73328
    sarb73328 che05779

    Posted

    Hi Che

    So sorry you have this so young. I am with Brigitte and Joanna on here. Try borax soaks, they are very soothing and soften the skin. Keep moisturised all the time, find what suits you but vary it as LS seems to get used to potions after a time.

    None of us seem to receive advice from doctors on how you deal with this psychologically - it is glossed over which is neglectful I think, because as we all know it** is** frightening and upsetting. Trust to the fact that with management you will deal with it and any partner worth his salt will empathise. I am 66 and have a very understanding, supportive husband but I don't tell him my daily concerns or routines because it would affect our sex life too much, which has slowed but is still good. He once described it as our intimacy becoming a 'medical issue' which is a turn off of course.

    You will learn to live with it as we all do and it will slowly recede from your forethoughts. And you WILL have loving relationships, enjoy your life and have fun - you don't have to tell all the details to your partner! Good luck.

  • mollymadx
    mollymadx che05779

    Posted

    Hi Che,

    I'm only 21 too. I'm suffering mentally everyday with the disease. I can't go to work because i'm itching constantly and i'm just depressed.

    Drop me a private msg if you want to hun, we can have a chat x

    Take care!

    Molly x

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