Update With My LS

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I havn't posted for awhile but wanted to update everyone with how im doing and new info I have. So I believe my LS was from birth. I had what the drs thought as constant thrush at about 5-6years old that settled down after a few years. But it peaked again at about 19-20.

I was in a bad way with it, again I assumed thrush and just kept slapping thrush cream on. Of course this didnt help and my skin came off. Something I havn't shared before.

It took parts of my skin coming off to make me go to a dr as i was embarrased.

Crazy huh. I was lucky my g.p sent me off to a specialist now age 21 and moved to London. I was diagonised with LS in my late 21's.

I do feel I have been lucky to get my LS confirmed at this age and also to have such amazing support from my drs. I can not recommend the team at Kings College London in Dermotologie. I see Sarah Walsh but also Candice McDonald who is from sexual health background.

Candice lets me email her whenever I want. I emailed her only last week as I found a unknown bump she got me in on Monday. Its this level of care I want every LS woman to have.

Some things I found out in my last few months I thought my LS was back earlier in the year. I actually had gential warts. Most people are infected with them, but our steriod cream makes them come out with prolonged used. So ladies if you notice any odd white patchs appear get it looked at. We tried a treatment as the LS would make the normal injection not a good option. We went for a cream. It cleared them in two treatments.

I was scared as the cream kicks your auto immune system in to clear the warts faster than your body does. All fine. Again Candice was there to support me, answer any dumb questions I had.

Talking to her on monday with my lump check up ( im all fine yay!) It seems new LS research shows woman have two big peaks of LS. At the momemt its not know why. But too me that makes me feel better.

My LS has been under control for about 5 years. It took a lot of work. I was even considering surgery but I was patient and put the leg work in.

I just wanted to say it can and does get better.

She also said in the LS clinic the ladies who do the best are the ones who moistorise everyday after the toilet. I agree with this. Specially if your struggling with sex. That helped me a lot with massage too.

If anyone wants to ask me anything please do.

I just wanted to let everyone know the new things I found out.

Take care

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14 Replies

  • Posted

    Excellent post Sampleremix! So good to read such a positive outcome for you and to know that you at least have found an informed, reassuring and pro-active dermatology department. All your perseverance paid off and you know that you not only have Sarah and Candice but also this forum to share things with. I too, have been fortunate with my gyny/dermatologist and it just makes all the difference when dealing with this nasty condition. Also it is great that you are willing to share your info and support when needed. Good on you!
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  • Posted

    Hi good to know this awful condition can be managed. I also have had it for years (not quite as long as you) and, touch wood, I'm in a reasonable condition at the moment. I also have Lichen Planus just inside my vagina which can be very painful. I was interested you saying about moisturising after each toilet visit. Lots of women have recommended spraying with a baking soda solution too but my dermatologist (at Whipps Cross, who also specialises in vulval health) said a definite no to that as it alters the Ph levels. Would be interested to hear if that is just her view (I think she is great by the way) or other dermatologists feel the same.
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    • Posted

      I tried the spray but it didnt work well for me. I also tried coconut oul which some women love. Again not so good for me.

      I think its about trying and seeing what works for you.

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  • Posted

    Wow! If only everyone had such support from dermatologists.  I had one visit and no follow up was offered.  I was given Dermovate for LS but at least I got a diagnosis for a nasty red patch inside the vulva.  I had a lot of thrush in my 40's.  Canesten cream and pessaries cleared it and then it came back time and again. It was only when I was referred to a specialist (don't remember if it was gynae or not) that he explained the condition properly and fully and I realised there was a lot I could do to help myself such as cotton underwear, not using anything perfumed, keeping cool and and keeping sugar and yeast to a minimum in my diet and so on.  I also bought a book about thrush with many suggestions.  I was interested in your advice to moisturise after going to the toilet - what product do you use?  I often get a burning sensation.  Gynae told me at my visit to use Vaseline before I go swimming as a barrier but no other helpful advice was offered.
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    • Posted

      I use diprobase ointment and eperderm smile i put some in one of those small screw top jars so its more easy to take to the loo.
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  • Posted

    Several people have metioned they are taking Amlodipine Besylate for high blood pressure.  I take it so I did some work looking into it.  The internet mentions swelling legs and feet but also skin problems.  In fact several skin problems.  Anyone taking this drug
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    • Posted

      I was put on Amlodipine 2 years ago as the Bisoprolol was not controlling my blood pressure.  I had terrible swollen legs, ankles and feet.  Walking was difficult and I felt like my legs were blocks of wood I was dragging along with me.  They looked like elephant legs. I spoke to the GP and the pharmacist and was told it was a side effect which would wear off.  It did wear off in time but my skin problems increased, not sure if that is related, or if it is due to stress.  Who knows.  It did the job and brought my blood pressure down which is now 130 over 80 and that is the most important thing as my mother had a devastating stroke which more or less paralysed her.
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  • Posted

    Hi,

    thanks for your news, so good to read this today! Your case in a way is similar to mine in terms of the steroid inducing a HPV warts. This is a difficult cycle as using the storied brings the warts and the cryo for the warts brings the LS. Could you please advise what cream you used twice to clear them? 

    Also can you please advice what your treatment approach is? Are you using steroids now and if yes which one? Plus anything else you do.

    in terms of the two major peaks in LS you mentioned, can you please advise what you mean by this? 

    Really appreciate your post and advice.

    All the best, Samantha 

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    • Posted

      Hi Samantha,

      Candice gave me alcove I think is the brand name but having just googled its a Imiquimod treatmemt. I was scared to use it so only used it twice and poof gone.

      Yes but I was advised the human clears warts by itself within a year by her. The cream just speeds it all along.

      The recommended 'maintance' dose for people whos LS is not in a flare up is twice a week. Pea sized blob rubbed into the area for 1minute. I do this after a bath/shower before bed. As the heat from washing softens the skin up. At the moments due to warts etc im doing once a week till new year. Then upping to twice. I agreeded this with Candice. But twice a week is recommended. My steriod is deromvate.

      Candice advised me on monday new research showed women had two really bad periods of LS in there life and long periods of it being under control.

      Hope this helps.

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    • Posted

      Thanks Sampleremix!

      the immiquoid is also known as Aldara and I have some but have been afraid to try it, I will if one crops up as I had cryo again last week.

      My problem was that I'd have the cryo and 2-3 days later the itch form LS  that I needed the dermovate and bomb 2-3 days later a new wart would come up. So a cycle. But I'll try if one comes up next.

      i was using it Betnovate (a weaker steroid prescribed by doctor as dermovate induced the warts) twice a week but the wart then came. 

      It's a stressful experience.

      have you tried Emuaid?

      in regards to the two major flares you mentioned, is this overall at anytime or related to menopause?

      thanks so much, really appreciate it 😊

      Samantha

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    • Posted

      i Samantha,

      Candice didnt op for Cryo on mine because she was concerned what that would do to the LS so we went cream

      I am not saying what worked for me will work for you but I think its much less harsh than cryo for us. I used such a small amount because I was worried. I only did it once a week for two weeks.

      My warts where quite small though according to her. To me they felt huge!

      Emuiad no what is it?

      Well I mentioned the menopause and she said no clear link has been seen with it but it does happen to some women then. I believe she was saying LS seems to peak twice in your life badly. Perhaps for a few years then go dormant. The pattern that is reaccuring is this happens to women twice in there lifetime.

      Anything else please ask.

      Oh I would like to add when I tear with sex which hasnt happened for months yay! I was my wound after toilet visits with sali e solution cold. You can get the 'eye sterlization' tubes of it. Great for taking to the loo. Use it after weeing. Pat dry. Moistorize.

      I do that for 2-3 then a small amount of dermovate. I spoke to my gynie and dermie they said this is perfect. As you first heal the cut then use detomvate to stop LS getting into a trumar wound which is one way LS attacks.

      X

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    • Posted

      Hi,

      Yes ive learnt subsequently from another lady on these boards that cryo can trigger the LS. Which I was not aware of. Sadly the dermatologist I see is not a vulva specialist and she seems to stab in the dark.

      The couple of warts that have come up were also small according to the dermatologist. She couldn't see them at first glance and I had to point them out! If anymore come up again I'll try the immiquoid cream once a week. The dermatologist told me to use it every two days and all over the warts and LS which I'm pretty sure is not right! So I haven't.

      I will try our strategy of Betnovate/dermovate once a week and then if needed the immiquoid once a week. 

      I do do use witch hazel or baking soda water after I go to the toilet and I do use extra virgin pure coconut oil to moisturise.

       

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    • Posted

      Sorry my iPad froze and I was unable to finish the message!

      emuaid i only just started using this week as I read it's suppose to help with LS symptoms. Some people like it, others don't. I think it helps to restore damaged skin and inflammation. I've only been using it 3-4 days and so far it's helped with the white patches but not the discomfort/paper like cuts. 

      I'll need to give it a couple of weeks to see how it helps. But I'm only going to use it on days I don't use the steroid. 

      Hopefully i I can get this under control soon. When I looked today my left labia minor has totally gone /shrunk so fingers crossed.

      Thanks x

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  • Posted

    Hello!

    Really lovely to read your comment. We are very similar. I was diagnosed with LS as a baby and they said I would grow out of it but then at 18 it came back. However, I wass constantly being diagnosed with thrush for about 8 months by the doctors until I went to a sexual health clinic where after a while it came back as LS. Unfortunately, my mum knew about the LS I had as a child but forgot about it and the name so didn't tell me which could've made the process a hell of a lot faster haha. 

    I was wondering what you use after you pee and if you have any more info about the two peak research? That sounds interesting.

    Anyway thanks for your post it was lovely to read and I'm very glad things are working out for you. 

    Take care :-)

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