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Nothing works lately. Any ideas?

Posted , 13 users are following.

lisa7788
lisa7788

Hi all,

I would be grateful to anyone that might have any ideas for me!  I have a severe case of lichen sclerosus.  I have fusing of the labia minor with the clitoris hood, and the fusing is progressing.  I have intense, unbearable itch, especially in the middle of the night which makes me tired and sore when I wake up in the morning.  It is making my life pretty unpleasant.  My gynecologist told me I was too severe and agreed with my previous gynecologist that I need to go to UCLA for more specialized help. The itch and fusing are progressing.  The typical clobetasol and estrace are not working.  I have filed an appeal with my insurance company to see a lichen sclerosus specialist at UCLA who does compounding till the right steroids work.  My gynecologists also suggested CO2 lazer and light therapy at UCLA.  Thanks for listening.  By the way, the clobetasol used to work for me a few years back when I was first diagnosed but then stopped working for me.  Perhaps it was due to my going through menopause?   

Lisa

 

0 likes, 36 replies

36 Replies

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  • tracey90617
    tracey90617 lisa7788

    Posted

    Hi Lisa,

    I have advanced fusing too... Have had LS for a long time... I find relief from Emuaid. I also bought Perrins creme complete, but the Emuaid worked better for me. I'm also doing sitz baths with Borax powder, I bought a sitz bath on Amazon and it is great, I just need to do it more than once a week, I'm also going to try the mixture of Borax powder with water to drink. There is a lot of information on this Forum on Borax, and by googling Borax powder water drink. I'm trying to reverse the fusing too. I used the clob for so many years and think it causes more problems in the long run, now it burns if I use it. The Emuaid helps the itching, but not enough to reverse fusing. That's what I'm concentrating on now and hoping the Borax will work...

    Best of luck to you!!

    Tracey.

    • lisa7788
      lisa7788 tracey90617

      Posted

      Thank you, Tracey!  I have not tried your ideas.  I will try them out.  I am sorry that you have fusing like I do.  Isn't it a bummer?  Do you keep up with a positive attitude?  It's depressing to me.  I did not know what could help with unfusing, but you mention Borax.  Thanks again! 

      Lisa

    • lori64430
      lori64430 tracey90617

      Posted

      Hi Tracy

      I wanted to ask you a question. I read here that you use to use Clob but then stopped because it was causing damage. I was the same way. The Clob  burned me so badly I could not use it. What I wanted to ask you is, I joined a Facebook  LS group and everyone on there is saying that if we don’t stay on the Clob we are really increasing our chances of getting vulva cancer. They say stay on the Clob for life because that is the only thing that will prevent cancer. I am having a hard time believing that. What do you think? 

  • Holiday_girl
    Holiday_girl lisa7788

    Posted

    I itch badly in the night luckily no itch during the day and my cure is to keep a small plastic bottle of water by your bedside and when you feel the need to scratch place this between your legs it feels cold and stops the itch. Good luck.
    • lisa7788
      lisa7788 Holiday_girl

      Posted

      Thanks, Holiday girl!  I will keep that in mind about the water bottle because I rubbed last night.  I couldn't resist and was so bummed out this morning because I couldn't resist.  Any other ideas you have to stop itch I would greatly welcome! 

      Lisa

  • suzie37971
    suzie37971 lisa7788

    Posted

    Hi Lisa , I have found that soaking in bicarb and lavender oil hdlps to soothe and ease the itch .

    If you do not have a bidet ( as i don’t) I bought a small bowl that sits inside the lid  of my toilet so useful.

    Also i agree avoid if you can itching 😘

    • lisa7788
      lisa7788 suzie37971

      Posted

      Thanks so much, Susan.  I was so bummed out this morning because I gave in and rubbed last night.  I couldn't not rub if that makes any sense.  The itch was so intense!  Any other ideas you have to prevent itch I welcome!

      Lisa

    • suzie37971
      suzie37971 lisa7788

      Posted

      Lisa , I also sit with an ice pack on my bits .

      I have found the little blocks that are for freezer bags really handy.

      Wrapped in a soft cloth and such relief no itch 🤗

      Also as everyone  has also said go commando as much as possible 😛 

      Hope you get relief soon 😘

    • lisa7788
      lisa7788 suzie37971

      Posted

      I use ice too but need to apply it BEFORE I rub! It's so hard to resist rubbing! Thanks again, Susan, for your wise words. Lisa

    • lori64430
      lori64430 lisa7788

      Posted

       Hi Lisa   

       I was reading an article on LS  and they characterized it as an itching disease.  They said that the itching is what brings on all of the secondary problems i.e. tearing, white calluses, and the scarring which causes the shrinkage and fusing.  The article basically said if you can stop scratching you will prevent all of the problems.   The article also said the itch is so intense as to almost impossible to stop.  I can relate to the intense itch because for me rubbing and itching  was more pleasurable than  anything I have ever felt in my life.  In fact I used to look forward to my alone time where I could just sit and scratch it because the feeling was  completely euphoric.  All of those many many years that I scratched myself nightly Has done such damage that it is now irreversible.   I have noticed through my life that it is definitely hormonal because right before each cycle I would start to itch.   It seems like as soon as the estrogen would drop I would get itchy.   When I was ovulating and the estrogen was high it felt plump and supple and never itched. I noticed that when I was pregnant and all of the estrogen was really high I had no itching either.  Now that I am 55 and my estrogen is almost gone  I noticed it getting worse and that is where I had to decide that I would prevent myself from scratching by any means possible.  I made an absolute conscious decision to never scratch it again.  That is when I tied my pants up at night and I am so pleased to say I haven’t scratched in three months.   It took five days for that intense itch cycle to go away.    About seven years ago I made the decision to stop scratching and I actually stopped scratching for an entire year and a half and it was fantastic but for some reason I started scratching again and causing  damage.    This time I will never go back to scratching again because I do not want to deal with what may lie ahead of me if I continue to scratch and cause   Irreversible damage. 

       I know that it can be done because I went a year and a half without scratching before so I know that I can do it.  I Would also find myself rubbing  for sexual gratification but that in turn caused a lot of damage as well.  So I gave that up also which I do miss.  I just want to encourage anyone out there that the scratching although it feels so blissful,.....is the culprit. 

    • lisa7788
      lisa7788 lori64430

      Posted

      Thanks so much, Lori!  I was thinking maybe I was worse off than you because I find it so hard to avoid rubbing.  At least the article agrees with me that it is almost impossible to stop.  My gyno acted like it was no big deal to stop. But perhaps you did have it as bad as I do and I just have to try to follow in your footsteps. You're correct that

      I actually like doing it.  I didn't even realize it really!  Right now I have been strong since I got home from work and am have not been rubbing.  Let's see if I can do it tonight because I gave in again last night.  I will try to get ice right away and have it handy before I rub.  I think you're saying that the itch will go away after a week of not rubbing?  So you can't do the sexual gratification either?  Bummer.  Now what?  The experts  tell us to have sex or self sex to keep the vagina from atrophy.  So do you have any type of sex?  I hope you don't mind that I asked.  Regarding estrogen...interesting.  It sounds right because although I've had LS for ten years the intense itch didn't really start till a few years ago when I went through menopause.  I'm 53, by the way.  I take estrogen pills and use estrace twice a week but still have the itch.  Thanks again so much for all your input and support!  Lisa

    • lisa7788
      lisa7788 lori64430

      Posted

      By the way, Lori, if you are able to provide a link to that article here or tell me how to find it on the web or elsewhere I would appreciate it.  If you can't remember, no biggy.  smile  Lisa

    • lori64430
      lori64430 lisa7788

      Posted

       I Nisa 

       That is correct no self gratification anymore and I agree with you that that actually is good for us,  but if I do any kind of rubbing it  just does damage.   This is really hard and unfortunate but I can’t use the clob because it really makes me worse and the only thing that helps me is if I don’t  give it any sort of friction.  I looked for the article and now I can’t find it but I will try and keep looking.   I guess I have just decided that the self gratification isn’t worth  pain and the damage I’m doing to myself.  So I have learned to live without it.  It’s not ideal. 

    • lori64430
      lori64430 lisa7788

      Posted

       Sorry Lisa  my last reply that you were name incorrect because I was speaking into my phone   😳

    • lisa7788
      lisa7788 lori64430

      Posted

      No problem, Lori. Thanks again for all your advice! Have a great day!

      Lisa

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