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Speed of increase in changes?

Posted , 13 users are following.

sarb73328
sarb73328

I have been aware of new shrinkage and fusion recently which has all happened within a month. Steroid has calmed it down but not unfused me. I had no symptoms (itching or soreness/pain) but it all seemed to happen so fast. My GP told me all looked ok in July. I have seen her today and she still thinks not much has changed and also told me that changes don't happen fast, that LS is insidious and it is just that we don't notice the gradual change. She was happy to refer me to vulval clinic to ease my mind but only because I asked. Appointment won't be for another 6 weeks.

I can't think why I have had this sudden change again when everything seemed reasonable, we were on holiday and I was relaxed. GP asked about the temperature where we were and whether I had been swimming a lot, but I can't see that those things would have brought this on as I swim regularly and heat doesn't seem to affect me.

Has anyone had a similar 'speedy' increase in changes and what have you done about it, if anything?

0 likes, 50 replies

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  • pat48434
    pat48434 sarb73328

    Posted

    Everything appeared to be under control until one of my children (adopted,) (I'm 80 she is 27,) has some severe mental problems that became intensive.  This changed  condition changed so fast that I, at this point, am unable to insert my estrogen cream dispenser.  The Lichen Sclerosis and Planus? (mouth) have become a real problem.   My mouth has sores and I have lost two teeth, I was always proud of having my own teeth.  It's nice to have anything original at 80.  Hopefully this will reverse or I may have to have surgery.

    • hanny32508
      hanny32508 pat48434

      Posted

      Pat, I have LS and LP.  For both I rinse with borax as described in my previous message.  Didn't want to loose my teeth either.  So I started to no longer use toothpaste.  Instead a brush with a tiny bit of baking soda on my brush and rinse after flossing with water in which borax dissolved.  So far so good.  I hope this is of help to you.

    • linda87994
      linda87994 hanny32508

      Posted

      Hi Pat, I have Oral LP too, just diagnosed by dentist. I was told it doesn't affect teeth, but I get a lot of oversensitivity in them

    • jane63639
      jane63639 pat48434

      Posted

      Pay I also have LS and OLP, the thing that has really helped is Vitamin D3 in the morning , then I take a Turmeric twice a day , you need to get the one combined with black pepper as it absorbs better , it’s a max dosage of 1600 mg per day . I find it takes the inflammation straight down . When I get the rough patches I also drink camomile tea which my dentist recommended and that’s is brilliant xxxx
    • sarb73328
      sarb73328 pat48434

      Posted

      Pat, your case proves that stress is a major trigger. I wish you and your daughter well.
  • donna60875
    donna60875 sarb73328

    Posted

    I’ve also had fusion over night and is going a a rapid rate , I can control the itching and use steroid cream only when I flare up when I’m on my good days I just use caster oils and lavender oil mix after every toilet visit 
  • karen23320
    karen23320 sarb73328

    Posted

    I was diagnosed in June, no changes until 6 weeks, then between 6 weeks and 11 weeks almost entire right labia gone. Left is fine- normal size. I used Clob for 2weeks, 2 x a day and no more changes, but I can’t bring back what is missing. Clitoris has also  “ retracted” and is harder to feel, less sensitivity, used clob on that too. Seeing vulvular specialist Oct 22 to discuss. 

    In remission now, no symptoms, following my diet, taking my supplements and trying to get back to living my life. 

  • hanny32508
    hanny32508 sarb73328

    Posted

    I have been greatly helped by my rinsing with borax or baking soda.  (three pinches in a Perin bottle after bathroom visit)   And also by sitting in baking soda or borax baths (1/3 cup for baking soda or 1/6 cup for borax in a full bath)

    Perhaps it is worth a try. What did it do: every so gradually it stopped the fusing and actually let go/melted away.  I back to normal.

    • susan43705
      susan43705 hanny32508

      Posted

      Did you find that Borax was better than baking soda?  How long did you sit in the solution?
    • hanny32508
      hanny32508 susan43705

      Posted

      The baking soda was my first experience with LS going in reverse.  The top part around the clit was hard to beat and the time when I started to use borax.  Now all is gone back to normal.  Took a while for this to happen though.  It is by no means a 'quick fix'.  

      I still do borax baths every other day (while at home) and in that way all stays well.  I sit in it till the water cools a bit.

    • susan43705
      susan43705 hanny32508

      Posted

      Thanks Hanny.  Hard for me wrap my head around sitting in detergent and the box is so huge. So it sounds like the Borax had better results for you.  I'm glad you are doing well.

    • sarb73328
      sarb73328 hanny32508

      Posted

      Hi Hanny

      This is encouraging and I will try the borax baths. I do swab with borax solution every morning as I find it soothing. thank you

    • susan43705
      susan43705 pat0423

      Posted

      I'll run out and buy Borax. It is such a huge box. What is the ratio of water/borax. How long do you soak?

    • pat0423
      pat0423 susan43705

      Posted

      Hi Susan!

      i am so sorry you are experiencing the misery. I hope and pray it is a long flare and nothing more - not that flares aren't absolute hell!!! Are you scheduled for a check?

      So for me, borax soaking helped - BUT I was sensitive in clit area to the point i had to stop, omg, I took Hanny's advice and went back to baking soda.

      THEN I decided to try using cotton pads (think makeup) soaked in mild borax solution (1/2 teaspoon dissolved in 16oz squirt bottle) and just hold them in all the places except very top area, for now. It has started helping!!! I diluted my clob and use every other day. Still doing sitz baths in baking soda and use it also for after using bathroom rinse.

      I'm using emu oil and castor oil... rotate in emuaid and coconut oil too. But seriously nothing helps like the borax. It is a mineral/salt, think of it as like baking soda, it is also used for cleaning but baking and brushing teeth and upset tummy too!

      If you are on facebook join the Healing With Borax group. Lots of good info and support.

      I'm glad to see you, its good for us all to have support. Thinking of you with well wishes!! xx

    • pat0423
      pat0423

      Posted

      I hold them there for about 10 minutes

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