Everything's changing so fast

Posted , 8 users are following.

Hi a have been diagnosed for about 6 yrs in the UK everything is rapidly disappearing I am so scared I know there's nothing my gp can do but what happens if I become unable to pee.ipee.its all be fine no soreness ,itching but I caught myself and it's now sore at entrance to vagina which I am using clob on ....a....anyone know anything else that will help to heal it .

I feel so down and no longer a woman not had sex with my partner for 10 months .

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7 Replies

  • Posted

    Hi Alison i feel your pain! ive been dianosed for just 3 montbs but i now do believe ive had it for a few years in all honesty. ive been using steroid as directed. wont see consultant again till January!!! my issue too is the entrance. feel like im slipping into not having relations with husband too. I use sudercream which helps plus caster oil tomoisturise. Hydromol for washing. Have you tried a YES lub products help with intercourse. My bug bearer is my periods im 54. GP has just put me on mini pill to stop or slow them to see if this helps, so fingers crossed this will help the vicious circle

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    • Posted

      I don't have period I am 52 in dec but mine stopped when i was in my 30's never been refered to consultant just my gp .I am so scared of what happens i can't pee , my vagina luckly is ok at the moment VERY painful if i try to have sex but now my partner is so scared of hurting me he doesn't come near ,I think i am now soooo tense as i think its going to be agony and i'll tear it doesn't help i feel a failure as a woman we've only been together 8 years and should be enjoying life but every now and then it really gets me down .I have vagifem tabs to boost my oestrogen which as like tablets to insert twice a week as well as the clobesterol I also use coconut oil.

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  • Posted

    I like to advise you to look for the posts about borax and baking soda. Every other day I take a borax bath (1/3 cup) or baking soda bath. I rinse my bottom after every bathroom visit with the help of a Perin bottle in which a few pinches of either borax or baking soda dissolved. For moisturizing I use coconut oil. This far I've been able to keep LS nicely under control. The fusing is gone and sex is again very possible. I also dilate every other day. Plus follow a strict diet - sugar being my main trigger. It is necessary that I stick to this routine, or LS will come right back. Small price to pay for a reasonably comfortable life.

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  • Posted

    Hi Alison, I am also in the UK. My GP surgery is useless but we do have a specialist consultant nearby (Newcastle). i have my next appointment with her on Thursday.

    The first couple of years i had LS it was pretty much under control bar a few flare ups but the last 9 months have been awful -tears, pain itching, and all of this in 'new areas' such as entrance to vagina and anus area. it's really got me down especially when having a bad day -thank goodness for this forum as it's not exactly a subject that can be discussed - unfortunately 😦

    I found out that there was a specialist by doing a lot of research - the genital dermatology clinic is only run once every three months but at least they understand the symptoms and issues. Perhaps find out if there is anything similar in your area.

    Sending hugs and reassurance.x

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  • Posted

    I am with Hanny, borax is very soothing and seems to calm symptoms. And keep up with the clob to counteract fusing. So far, I have nit experienced tearing so cannot comment on that but i know how you feel about the speed of changes. Also about our slow NHS services. I have just had my specialist appt postponed by 2 months. Good luck.

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  • Posted

    I also use Borax. Very important not to use Boron or Borax Substitute. There are a couple of places in the UK that sell cosmetic making ingredients, or you can order from America on Ebay. Bicarbonate of Soda also works in a milder way. Dilating will help too - you can get dilators on prescription. Your doctor probably won't know but get them to look it up - or you can buy on Amazon

    Are you anywhere near Bristol? A support group is starting up here.

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  • Posted

    Hi Alison, If you are not having sex with your partner then it is important to use a dilator to keep the entrance of your vagina open. You can buy these online and they need to be used regularly. I am in the same position as yourself and so this is the only real way to keep ones Vjay from becoming very small.

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