bad day

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hi everyone had a blow out day yesterday while things have seetled i am still on antidepressants still drinking my tea from chinese doctor but my husband has been away for two weeks and seeing as everything felt good we atempted to make love and all was good tiil  mins in and the burning started but i would stop because it was the first time in 7 months we had been intermate. so i paid for that but it si just dissappointing  i thought things were getting better . i have other issuse in my life happening too  so it all got too much and i blew out  couldnt stop crying i was angry and upset no one in australia seems to be doing any research i have rang lots of research places nothing yet but i am still looking. in the mean while we are all suffering quietly cos all my answers are that it it is not very common . yeah right says who? sorry for my blurt but i have no one else to dribble too.any way has anything come from the survey yet that you guys had in UK? thanks for reading

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  • Posted

    I'm in the U.S. so I don't know about the survey but that is the same thing my doctors tell me so I have done a lot of my own research finding out now that they believe it is a auto immune dieses it is harder to figure out because the cause for everyone is different but with my own experimenting I have found relief in stopping birth control I use wheat grass,pro biotic , vitamin D, coconut oil, biotin, and air born immune support every day I also use coconut oil down there and Vaseline when I am out and about I have found that diaper rash cream 40 percent zinc had been very beneficial between days I don't use steroid ointment I also stopped eating gluten I found that with a auto immune dieses you are usually putting something in your body it doesn't like I tried stopping gluten first because this was the most common and I had never noticed how bloated I was till I stopped eating it and my round belly began to flatten and my stomach didn't hurt all the time like usual and thus is a very good quote I say it every day now

    I AFFIRM THAT MY BODY IS THE TEMPLE OF THE DEVINE.I AFFIRM PERFECT HEALTH,COMPLETE WHOLENESS AND TOTAL WELL-BEING.THERE IS NOTHING THAT KEEPS ME FROM EXPERIENCING PERFECT HEALTH NOW.I AM GREATFUL

    You don't have to be religious just focus on being healthy and not on are dieses it is a huge mental challenge but a big part of healing I hope something helps good luck

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  • Posted

    I can't address the question about the survey, but I did want to send HUGS to you. Have you put any barrier cream, such as a baby's diaper cream, (40% zinc oxide) on any sore parts you might have now? It helps me a lot. Urine will not penetrate the barrier cream, etc.
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  • Posted

    I'm so sorry you are having a bad time of it. Dealing with LS gets tiring and sometimes it just gets to be to much. I live in the U.S. in California and so far I haven't found anyone in my area that is up to date on LS. So

    Thankful for this group, all the support and helpful suggestions. I wish I could say something that would be of more help but I don't really have

    Any answers. It's ok to cry and feel down, I bet all of us have felt or feel

    This way. In this group you aren't alone with this there are many of us

    That share the pain of this disease.

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  • Posted

    Eat Chocolate!...Just kidding...hoping I would get you to smile. smile  I get down too at times and yes, intimacy is a struggle...just not fair. A barrier cream is okay if you don't have the itch...but if you have the itch it can make it worse. Spraying yourself down after toileting or being intimate will help...whether you just use water, bicarbonate of soda water...or some other mixture you find helpful. Keeping yourself clean is key as it will help you stay healed.  There is also a forum on this subject on Yahoo ...may want to check that out as well.
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  • Posted

    Whereabouts in Australia are you Christine? I am near Melbourne and attend a clinic at Mercy Hospital for women in Melbourne. I receive top help there. I am usually seen by several specialists and it is a special clinic dedicated to LS every Monday afternoon.
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    • Posted

      Ok Christine. Maybe look for a clinic especially in a women's hospital that you can get to. I am lucky being near the Mercy hospital for women in Melbourne just an hour's drive for me. I hope you can get some help soon. I will look online for you just in case Brisbane has got a clinic. I lived there 10 years ago.
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  • Posted

    I use Dermeze and Advantan fatty ointment. The Dermeze is a barrier and moisturising one and the Advantan fatty ointment controls the LS. Ointment is absorbed better than a cream.
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  • Posted

    My response went to the moderator...and it seems nothing ever comes back out of there.  I put a website address in...forgot!  It's okay to feel sorry for yourself...this is a miserable condition for all of us. It does mess up your life. I always tell myself that there is lots worse things and try to remember all the things that I am blessed with. What I wanted to let folks know is that there is another forum on yahoo...I had put the wrong info in anyhow...so just as well that it never came through. There is  some good info out there as well.  We are all looking for answers...so keep trying things until you find out what works best for you.  
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  • Posted

    So understandable that you have these totally off days.  So entirely disappointing too, just when you think you are doing so well, but not entirely healed enough for intimacy.  Not at all hard to imagine that you struggle with depression.  

    I think that many of us here have been at that deep low point.  LS will affect you in more than one way.  And it takes a while to adjust, and 'move on'.  

    It is indeed frustrating that so little research is being done.  Kathleen talks about the Mercy Hospital in Melbourne.  I hope that you live not too far from there and can find more support.

    Meanwhile it is my hope that you find some solace here.    

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  • Posted

    It is so frustrating, no body really has any answers, I have found the doctors to be the worse, they have the habit of putting everything down to age and the menopaus. It took 2 years before Thankfuly a locum doctor referred me to the hospital, after so much damage had been done which is not reversible. I am fortunate to know 2 friends locally that has the same thing at different ends of LS that I can talk too however apart from the dermavate use we use other remedies. I am not in a relationship and because of this I don't see me ever having one now.

    I hope you can get it under control and manageable, I know how hard that is, and what works for a few weeks sometimes then has the adverse effect.

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    • Posted

      Eileen, I'm 63 and getting out of this four-year relationship. Having had this experience I'm almost glad to have LS to solidify my resolve not to get involved again. I'm happy for all the women on here who have longstanding husbands who are understanding about sex. But when you meet a man who's 65 online you can be pretty sure sex is going to matter to him, never mind what he says. Mine also needed a lot of nursing, mothering, teaching and driving. If there's one thing better than a Room of One's Own, it's a House of One's Own.
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  • Posted

    we all have terrible days - i had one last week when we were on a much anticipated holiday in Lisbon and thanks to what others on this forum tell me is probably Oral Lichen Planus I couldnt eat anything nice, couldnt drink any alcohol, wasn't able to swim in the chlorinated pool and discovered that the bad cold I started just before we travelled was full blown flu! I stayed in bed for two days and cried and cried! Then I dosed myself with everry painkiller I had and got up and got on with it cause we only have one chance at this life so all we can do is make the best of it. That doesnt mean that life is fair though. We're all here for each other, so feel free to rant anytime.
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    • Posted

      That's too bad you have O LP and on your trip being sick like that. :0(  but it is cool that you did get up and do things because you are right we only have this life so we might as well make the best of it even if we feel sick or hurt. 
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