Recently diagnosed with LS

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I was recently diagnosed with LS about 3 months ago after dealing with severe vaginal itching day and nigt for about a year. I was prescribed Clobetasol cream to use 3x a week. I have been using it since and have felt some relief from the itching but now I have started having tears in the perineum after intercourse that it even scares me just to think about wanting to have sexual intercourse. 

I am really new to LS and after reading so many different things that can happen without the proper care I am not sure what to do to keeps things under control. Please any suggestions as to what can work best especially with perineum tearing? 

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  • Posted

    You'll find most of us will agree that when having sex LUBE IT UP. And get lube without parabens. Lube is super duper important to help prevent tearing. Also, moisturize. For each of us, different things work, so you're going to have to basically figure out what sounds good, try it, if it doesn't work move on to the next suggestion. Right now I've been using a mixture I made of jojoba oil, carrot seed oil, frankincense oil and niaouli oil. I think it's been working, but only  time will tell...and a visit with my gyno on the 19th smile

    Sorry you're having to deal with this. Just do whatever you can to remain stress free...although it's pretty hard when you first learn you have LS.

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    • Posted

      I really appreciate your suggestions and support. It has been really hard to deal with these past few days as I've been reading more about it and finding out LS can be difficult to manage and trying to keep things from changing down there. I will definitely try it and see how it works for me. If not just like you said I will try to find new suggestions from others. 

      How long has it been since you were diagnosed with LS?

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    • Posted

      Well, I was diagnosed, however in a way that gave the impression that with treatment with the steroid cream it'd be gone. Never gave it another thought until, after having given birth last year, I was having unusual pain with sex. Going into the gyno she identified the lichen, which triggered this memory of previous treatment (I had a really bad doctor prior). I was devastated because the gyno told me I had some fusing. I remember having severe itching. I remember seeing a purple blister. And the thing is, even my gyno didn't say that this would be reoccuring.

      I'm gearing up to move abroad at the end of the month and had what I think was a flare up (no itching but a sudden purple blister on my clitoris) due to stress of finding a new home for my cat. Stress is a HUGE trigger. Do whatever you can to minimize it. Anyway, I was kinda confused how to treat it as my gyno prescribed the steroid for only 2 weeks and never said anything about flare-ups, only come back in 3 months. So I started to use it again, then was worried after all that I read about side effects of it. I stopped using it, am now using CBD tincture (cannabinoid from the cannabis plant...not related to the "high" THC side of the plant...that is apparently good at helping with autoimmune issues), not sure if it's helping? But I've also been applying the jojoba oil mixture I mentioned above. From what I see I THINK it's working, like separating some of the fusing. But you know, it's not like I've been checking my bits out all the time, so it's tough to say.

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    • Posted

      I wasn't able to keep my gyno appt due to my insurance changing so I've kinda been on my own using the steroid cream and doing my own research in knowing more about LS. I do still see some white skin patches, I'm so paranoid by knowing there can be fusing that I'm literally checking in the mirror as often as I can. I guess that's part of me stressing so I need to learn relax and try to moisturizer frequently to avoid tearing which is my main         concern as well as fusing. I will hopefully see the gyno again in a few weeks and can help. I seriously think my LS is due to my hormone levels. I started getting hormonal migraines during puberty at 10 I'm now 34 with 2 kids and get them every month before during or after my period ever since, even sometimes hours or a day after sex. So I'm like now this what else is next. Good luck with your move and hope all goes well. I will definitely try your suggestions. 
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    • Posted

      Thanks! I feel like as soon as we're in Vietnam I'll start to relax...famous last words right?

      Did you watch the Dr. Goldstein video that's in I think the first post of the forum on LS? I've not been able to watch it all as I've got a 9 month old who distracts me. But I'm at a part where he talks about there being a connection for women and LS through their hormones or having had trauma to the area. Maybe research things to help level hormones. But I'm like you, checking the area most days. Just try to include moisturizing as part of your routine. I've got my little tincture right by the toilet, so I add it at least twice a day, sometimes more depending on how I'm feeling.

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  • Posted

    Hello

    It probably isn't wise to have intercourse until LS has settled down and is dormant.  And then you have to use lubricant.  Does your husband know you have this?  Sex would need to be very gentle.  I am not wish someone at the moment and haven't had sex for 3 years.  I was diagnosed about 3 months ago and it still isn't stable.  I would like a partner at some stage but sex goes with that, and I am not ready for that and it terrifies me at the moment!  So for now, my life is just work.

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    • Posted

      My husband knows I've having been dealing with some women issues and I've tried going over a few things wuth him but not sure he really understands. We did have sec recently and told him to be gentle and he was very understanding. My main problem right now is perineum tearing during sex. I don't feel any other discomfort so far, itching has been controlled since I started using the steroid cream but I am looking in the mirror frequently for any changes.
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    • Posted

      I will give it try with the Manuka honey, anything to heal/prevent tearing it's awful. Have you had tearing and if so what has worked for you?
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  • Posted

    I found using the steroid cream on the tears was effective in helping to heal them faster than leaving them without anything on them.
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    • Posted

      I don't know whether this will make you feel any better, but I became single again and had stopped having sex two years earlier because of LS. My perineum still tears every now and then for no reason at all. I went undiagnosed for 40 years and now that I'm hyper-aware I see that even with good treatment with the ointment and a low-sugar diet, LS marches on. It looks to me like LS deposits white scar tissue on the perineum, tightening the surface laterally until eventually it un-adheres. Years ago when I would tear during sex, it was a deep, bloody, painful tear. These days it's more like the opening up of a stuck fold.

      I think after you've used the clobetasol regularly for many months the thickness of the bad LS skin decreases and the tears aren't as deep and painful. The thing to really watch for with sex is stirring up thrush. Friction + stress + sugar = bad news. I keep a tube of Canestan cream on hand to use topically at the first hint of thrush. Don't wait till you have a smelly discharge. I wish I had known this 20 years ago.

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  • Posted

    Hello

    I am really upset today.  I thought I had found some control of LS.  I stopped most sugar.  Bought some anti thrush medicine which is linked to LS.  I also purchased some of those yogurt drinks which are supposed to be good for you.  As well as yogurt.  As soon as I started with those, I am really sore again.  I am not sure if it a conincidece or not!  I am desparate here.  The good thing is the hospital are seeing me on Monday as they had a cancellation appointment.  Has anyone here changed diet because of LS?  If so what did you cut out?  At this rate, I won't be able to eat anything.  No sugar, no diary, no fruit!  This seems fruitless; pardon the pun!

    Can anyone help??

    I appreciate any response as feeling very low.

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    • Posted

      I can't eat shop bought yogurt; they shove all sorts of crap in some of them, but that's me, I am super sensitive.  Why not make water kefir, or milk kefir which contains a LOT of probiotics, or even your own yogurt, then you will know whats in it, how much sugar, etc.  Remember it takes some time to get to a place where you are managing LS, it doesn't happen overnight.  You can eat some fruit, but just in moderation, and I dont think cutting out dairy completely is a good idea to be honest with you.  The main culprit is sugar, and you need to make sure your body is free of thrush before embarking on this new eating plan, and that might even mean taking an anti-yeast pill, as I have mentioned before, I believe that once Candida takes root it is incredibly difficult to eradicate.  I understand that you are feeling overwhelmed, everyone feels the same at first, but I promise you it will pass.  Any other questions start a new thread and I will be happy to help in any way I can.
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    • Posted

      When I read about the yogurt, I thought "sugar!" Many yogurts are loaded with sugar! 4 grams of sugar equals a teaspoon. It can be shocking when you start paying attention to the amount of sugar in foods.

      Citrus fruit can present an issue also.

      Also, you could try taking probiotics. My naturopath had me take one morning and evening to take care of systematic candida.

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    • Posted

      For me, sugar is a HUGE issue. And I go through stages that makes me so frustrated cause I so enjoy sweets. But it really isn't worth it to binge. Just eat very controlled amounts.
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    • Posted

      Hi Sandra

      I guess it probably is the sugar in the yogurt.  I have given up sweets for now.  So it looks like bought yogurt is out now too.  Everything has sugar in it!  This is very difficult!  What can you eat that is enjoyable?

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    • Posted

      All fruit has sugar in it.

      So that is out now too!

      Guess its a bread and water diet!

      Brill

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    • Posted

      You can still eat moderate amounts of fruit. If you cut too much out you will be stressed cause of that which can cause flaring. Sigh. I know. What to do.. What to do!
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    • Posted

      You need to do some research, but ultimately eveyone is different, in how they react to food.  It is a pain but necessary.
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    • Posted

      I don't think Balkan style yogurt has much sugar in it. You could check that out. Eat it with fresh fruit and a bit of granola. i know how discouraging the whole diet issue is. I love eating- have lost a nice amount of weight, thanks to stress and the diet change. one thing to consider is, sugar being bad for our overall health; hopefully we will reap other health benefits too.
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    • Posted

      Power, it's all about serving size. I grew catlaloupes one summer and pigged out on melon. Major flareup. But I can have 1/4 melon per day when they're in season, no problem. I have raisins in my oatmeal, less than 1/4 cup and occasionally the same amount with pumpkin seeds as a snack. No problem. You can have grapes, but think of a serving that would be equivalent to one apple. The temptation with grapes is to eat a whole bag.
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