Listen up everyone ! Made a break through with lichen sclerosus

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Hi everyone just wanted to up date my progress as was diagnosed 11 weeks ago with Ls !!. Getting my head round it now ! And change of diet has been helping . Although when I was told to ween of dermavate all my itching got worse again !!. Never had any legions or blisters and sex life still going strong ! So I consider myself so lucky , at the mo !. But I am aware that having this disease in my body all that could change !. So I am always looking for ways to help myself . Recently read about how raspberry leaf tea can regulate your hormones and due to other issues I have always felt that I have an hormone imbalance !. So decided to try ! Here's what happened - read you need to have 3 cups a day for about 5 days , so I had 1 cup each day for 2 days then decided as it was really nice I could up to 3 cups aday . Next day I had a banging headache  !! And after talking to my friend who studies nutrition . She said because of Ls being autoimmune problem it makes our systems very sensitive ! And raspberry leaf tea is a very strong herb anyway i! It was way to much for me ! So now I just have 1 cup a day with no headache !. But best part of it I feel normal down below ! My itching has just stopped so I haven't used my dermavate for  5 days !! Yippee !. I see my gyro next Wednesday  I am going to ask her if it is ok to continue to drink the tea and if ok to apply topically !. I was so excited needed to pass on my experience !. But as I am not a Dr  check it out first !. But it is only tea ! But be aware it is strong ! Good luck and thank you for all help love and support from all your experiences it really helps as most close friends I talk to don't under stand ! That I am sure of . Just one other thing - I don't understand the vagina fusing !!!!!!!!!!!!! Can you see that happening ? Does that happen inside you or on the skin outside you ?. Don't mean to sound thick but just carnt seem to find any answers for that and want to prevent it happening !. I am 47 and think I have had it about a year ish before diagnosed , Jackie x

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  • Posted

    Hi, jackie7777.

    So happy to hear you have had some significant steps toward remission (no matter how long it lasts)!

    I have been doing the Raspberry Leaf tea, as well.  Not daily though...  I bought another from yogi called Berry DeTox (on the box reads: Supports Healthy Liver and Kidney Function).  I've started seeing a Chinese acupuncturist and she tells me LS is related to liver functionality.  [Her opinion - just wanted to share.] 

    I have my 9th acupuncture visit today and have never felt better.  I am weening off Clob and even had sex Wednesday night.  I thought it would be painful, uncomfortable, or at the very least not enjoyable.  I felt completely normal and did nothing differently (before or during) - e.g., lubrication, different positions.  Afterwards, I felt a little pain for about 10 minutes and that was it.  Then I cleaned and applied some E45 cream or Vaseline (can't recall) before going to sleep.  I thought I'd wake up in raging pain, but no - felt same as day before.  Today is Saturday and I feel no worse since having sex.  That is amazing to me!  [Hope that wasn't TMI, but I thought it was worth sharing.]

    I have also been taking some Chinese herbs, which are to be taken with warm water.  Hence, the recent tea kick.  I am going to do the Raspberry Leaf and Berry DeTox each daily for a week and see how I feel.  While I had this for almost a year, I - like you - have had what seems to be a mild case.  I wanna reverse or keep it that way. 

    Thanks for sharing and please keep us posted.  If you/anyone has questions for me, please holler!

    Thanks, Lizzy505

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    • Posted

      hi lizzy , did you get my reply ? As I touched something and message disappeared ! If not I will type it out again but don't want to bore you  ! If you got it lol , Jackie x
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  • Posted

    Hi Jackie, that's interesting in regards to the raspberry leaf tea. I was looking for some yesterday with no luck, but will try again. Will be interesting to see how you feel in a couple of weeks. 

    With regards to the fusing, for me it has been more or reabsorbtion of the inner labia. One side has about 95% reabsorbed so it's just like a seam now. The other is still visible, albeit I don't know if the same normal size as before I was diagnosed with LS. I do keep an eye on it a few times a week with a magnifying mirror and I do take pictures so I can see if any changes to point out to my doctor.

    so let us know how you get on with the tea. For me I use the clob 2x a week as a maintenance as since having the first session of Mona Lisa Touch I've not really suffered from any itching.


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    • Posted

      hi Sam , yes will see what a couple of weeks brings !. I got mine from Holland and Barrett , but you can get it on line .  Thank you for answering my question about fusing !. I hear some people say one side is smaller than the other !. It's so hard to know what's what ! As I never payed much attention to shape size appearance before lol . What Is Mona Lisa touch ? Are you in the uk ? , Jackie x
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    • Posted

      Hi Jackie,

      I'll look again for the tea, thanks. 

      Yes I had no idea what my vulva looked like until a year ago when all the itching started. Since then I've been monitoring and looking a few times a week and have noticed some changes. I don't think once it's absorbed it will ever come back. I think with fusing you can with oils work it open a little. 

      Mona Lisa Touch is a laser treatment which you have three sessions over about three months then a yearly session. It is suppose to help with vulva/vaginal atrophy. Ladies with LS have started having the treatment most I read with good results. For me it's helped with plumping out the outer labia and dramatically reduced the itch. It rejuvenates the skin. Put it into a Google search.

      I am British but spend half my time in UK and half overseas as my husband works overseas. Luckily I'm able to get this treatment free overseas.


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