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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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  • deethebee
    deethebee sarb73328

    Posted

    I have seen fusing occur overnight on myself.  It is very scary.  I am having a flare up at the moment and have had to go back to my steroid cream to get it under control again.  The fusing seems to happen regardless of the itching and flare ups.  Again, my gyni said she didnt think my bits looked too bad compared to other people she'd seen, sort of reassuring but not the answer I had hoped for!

    Just keep a close eye on your self and treat with steroid cream, apparently it can unfuse but I found a mix of borax mixed with my yes oil based cream applied twice daily help a little with the fusing, it didnt get any worse anyway.

    • sarb73328
      sarb73328 deethebee

      Posted

      Deethebee: Overnight?! That really is shocking. My recent changes were over a few days. It is so frightening when there is nothing you can beat it with - steroid does help but with this last change it has not reversed the fusing.

       

  • susan43705
    susan43705 sarb73328

    Posted

    Hi Sarb,

    The progression of this dreadful disease is staggering.  I too have noticed shrinkage, scarring and fusing no matter what I do.  I will go days without looking down there because it has become so disappointing. I can pretty much keep the itching at bay, but that is about it. I personally don't see any value in going to a specialist because all of us here on this forum know more than they do.  If things get so bad that I need to be unfused, I'll see one.  Good luck Sarb!

    • susan49619
      susan49619 susan43705

      Posted

      Your post mentioned keeping itching at bay.  I have almost continual irritation and semi burning.  The itching is under control, but I am freaked out because almost the whole right side of the labia minor is gone.  Gone.  

      And I'm confused about what to do.  Did the LS do this, or did the steriod cream.  I didn't use it for awhile and was using aloe vera.  If you have any insight, I would sure appreciate it.  

      Thank you 

      Susan

    • pat0423
      pat0423 susan49619

      Posted

      Oh Susan I was wondering how you’re doing. Sorry to hear you’re still suffering.  Same here. Cut sugar etc and started borax sitz baths but I am not FEELING better even tho I truly think the borax soaking helps, I can’t do it often as I’m so sensitive to everything it seems. 

      I have other issues right now that arexalso miserable... 

      anyway just st wanted to tell you I was thinking of you! Be well 💜

    • karen23320
      karen23320 susan49619

      Posted

      The disease took away your architecture, not the steroid cream. The cream will thin thickened patches of skin, and keep it away from healthy skin. I too hv lost most of my right labia, my left is fine. I hv no pain, no itching, but the labia will not come back. Some ladies hv used Estrogen cream to re- plump the labia, but I am not menopausal, I still get my period every 28 days. 

      My Dr said it was the LS that caused it, and the steroid cream is the only thing tgat can halt it. 

      I believe it is a weak link in our immune system and I am determined to find where my weak link is. 

    • sarb73328
      sarb73328 karen23320

      Posted

      Karen, I agree it is a weakness in our immune systems. I think vitamin supplements help. Finding your weak link is not so easy though. Also that it is important to use steroid whenever there are changes and every few weeks anyway as maintenance. 
    • sarb73328
      sarb73328 susan43705

      Posted

      Susan, it is staggering and so frightening when you see your architecture shrinking and disappearing and fast - I really don't think that doctors understand just how devastating that is.

      I will go to the specialist just to ask more questions, but I know what you mean about ladies on this forum knowing far more because we are living with it. I find this forum a total comfort.

    • msbutterfly
      msbutterfly sarb73328

      Posted

      Sarb - you hit the nail on the head: "t is staggering and so frightening when you see your architecture shrinking and disappearing and fast - I really don't think that doctors understand just how devastating that is." That is the crux of the panic and despair. 

    • susan43705
      susan43705 pat0423

      Posted

      Hi Pat,  Sorry I didn't respond sooner.  It's so nice to have women here who care. Thank you. I'm waiting to get my cannabis card so that I can get the cream.  I have cannabis oil here I have used with coconut oil but haven't used it long enough to see any positive results.  Pretty soon there will be nothing down under to take care of.  Ugh!!!  Hope you are doing better. xo

    • susan43705
      susan43705 sarb73328

      Posted

      Hi Sarb, When do you go to the specialist?  yes this forum is a tremendous comfort.   Take care. xo
    • sarb73328
      sarb73328 susan43705

      Posted

      Susan - thank you. My appointment is in November - it's comforting to know my GP doesn't think it's urgent. I have not 'lost' any more since posting this either and am hoping it will remain that way. It will be good to talk to a specialist though.

       

    • pat0423
      pat0423 susan43705

      Posted

      Oh dear Susan let us know how it goes with the cannabis products! I’m starting castor oil pack this weekend- I have to try it all I guess! Cannabis infused coconut oil didn’t help me in the beginning but I don’t think I made it with the right stuff - legal (lots of retail stores) here so easy access. Will try again with premade kind down the road maybe, especially if you find success!

       And I hope you do! I’m continuing borax & baking soda... will keep you posted.xo

    • susan49619
      susan49619 pat0423

      Posted

      Pat, thank you for your post.  I think I had a full blown panic attack over this.  Since I posted I got in to see my GYN, and walked away with no answers.  

      I had already had cut sugar, gluten and dairy, but no positive reaction on the LS.  In response to your mention of sensitivities, I completely understand.  I even carry my own toilet paper and Huggins sensitive skin at all times.  My reaction to a lot of other TP's is really bad.  Since I posted, my GYN suggested a product called Replens - inserted vaginally to provide moisture to the area in the hope of calming the constant irritation.  It's difficult to insert as I have no stretch at all, but maybe it's worth a try.  Thanks again for your post.  Susan

    • susan49619
      susan49619 karen23320

      Posted

      Hi Karen.   I recently purchased a book on the immune system.  I will have to re-read it because of the vast amount of information.  But I understand enough to know that our immune systems are on overload and have run amuck.  I am trying to change my eating to try to reduce the toxic overload.  Hard on a limited budget, but I think that anything we can do will help.  Thanks for posting, Susan
    • susan43705
      susan43705 pat0423

      Posted

      Hi Pat, I'm in such a terrible cycle right now and feeling crampy down under. Wondering if I have an infection or possibly warning about the big C. LS has hit my uretha and clit and I just don't know how to handle this anymore. I soak a wash cloth with baking soda and warm water and leave it there for a few minutes, but maybe that's not enough. I don't think the Clob is helping anymore and I'm worried about thinning skin. Do you think borax is better than baking soda. xo

    • hanny32508
      hanny32508 susan43705

      Posted

      Sometimes I have to switch from borax to baking soda and vise versa. Worth a try.

      Another: I have to watch my diet. Alkaline mainly. How about stress? Also a trigger in such a way that nothing seems to work anymore to control LS.

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