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Taking a break from Dermovate?

Posted , 8 users are following.

Bridge_of_Sighs
Bridge_of_Sighs

For the first time in many years I have no white patches. My GP has suggested that I take a month off the dermovate to give my body a break. Has anyone done this?

At the same time I feel that even though the white has gone, more bits of me are shrinking and I'm feeling a bit panicked by it.

Hanny when you say that your fusing is almost gone, is that the fusing closed that dilation is helping with, or are your labia unfusuing and coming back? I'm also diliting. I was doing it twice a week but that isn't quite enough for maintenance so I'm going to go back to every other day. An aromatherapist also recommended Jojoba and chamomile essential oil which I haven't tried yet. Coconut oil works well for me as maintenance, but I'm always hoping to find the magic ingredient that helps me move forward rather than stand still. Aren't we all? I will feed back when i try it.

It's so depressing looking in the mirror at the moment. I do try to stay positive but somtimes it's just so hard.

Bridge

0 likes, 43 replies

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  • hanny32508
    hanny32508 Bridge_of_Sighs

    Posted

    I heard my name ....

    I was totally fused up, that is, the outer labia had closed off except for a small pinhole to pass urine and that passing went with the greatest effort and lots of patience; I looked like a barby at the bottom.  As if there never had been anything else at all.  

    The outer labia, after a dilation procedure that gave me a small opening so I would be better able to empty my bladder, the outer labia today is all free from being fused. The urethra can function as it used to.  There is a clitoris.  A little bit of fusing next to that yet, but minimal.

    The inner labia is a question mark for me.  I don't even know whether there ever was an inner labia. There is nothing there that could tell it every existed.  How strange that may sound.

    To keep all from staying open en opening further I had to start dilating myself.  The eventual result is what I already described.  I have to keep dilating and do that every other day.  Shortly after the procedure in the hospital I started at first with dilating six times a day, then gradually less and less. Now every other day is sufficient, and just this week I tried every second day - it didn't go too badly. (I use coconut oil for lubrication)

    At present I still use some Clob, but the smallest amount and only when I clearly feel it is necessary.  

    Again I have changed my treatment a little bit and was going to start a discussion regarding this, but the moderator has not allowed it to appear on this forum yet. It involved the urethra becoming irritated. Since I had heard others about something similar. 

    Furthermore, I don't think there is any magic with LS.  You have to keep observing the bottom parts regularly and handle accordingly.  Adjust when needed.  I start to believe that there is a certain process, several steps even that a person may have to go through to make LS liveable.    

    • kathryn07219
      kathryn07219 hanny32508

      Posted

      It was probably me who mentioned the urethra being irritated - and it still is.  This leads to me feeling desperate to pass urine even when my bladder hasn't much in it.  I am brain training myself (with variable results!) to say I can't possibly need to go to the loo and to get a grip.  The following is a little tip that works for me - when I get the irritation that makes me think I need the loo, I press hard on the clit area for a couple of seconds.  I don't know why but it seems to stop the sensation and buys me enough time to either find a loo or pull myself together.
    • sandra01720
      sandra01720 kathryn07219

      Posted

      I also have had problems with frequency. It's distressing when you need to urinate so often. I found that by carefully treating my clitoris (steroid on the sides where I have LS and but very important is keeping it moist with olive oil) I don't have as much irritation with my bladder. I also trained myself not to go so much. Simply pushing off using the loo a little longer... .. It really has worked. I don't seem to need to go excessively anymore. I also find mine can be related to anxiety. It's been a puzzling and frustrating issue for me in the past. I am not sure why or if I'm even right but I seem to have a connection with the health of my clitoris and pressure on bladder.

    • sandra01720
      sandra01720 kathryn07219

      Posted

      My aunt helped me with this training of the mind. She attended a class for help with her problem of frequency in urinating. She has reprogrammed herself and figured out a way to tell when she truly does need to go. However, I realize there's no one answer to problems like this and yours could be entirely different. I do sympathize though. It's very disruptive to life to have to go so much.
    • Guppy007
      Guppy007 hanny32508

      Posted

       "You have to keep observing the bottom parts regularly and handle accordingly"  

      I agree, you cannot ever be complacent, but that does not mean you have to worry constantly, thats bad too.  I hardly think about my LS until I come on here.

      Maybe send a note to the moderator, he might have missed it.

    • hanny32508
      hanny32508 Guppy007

      Posted

      Not stressing over LS, indeed. Though I can imagine people do, me too, especially when you're just diagnosed. It takes a while before you can get your head around it.

      Question - how can I contact the moderator of this forum?

       

    • hanny32508
      hanny32508 kathryn07219

      Posted

      I know this feeling as well and now it's gone.  Question - do you have a small swelling at that location as well?
    • Guppy007
      Guppy007 hanny32508

      Posted

      Go to top of this page and click on Lichen Sclerosus, then at the top of the page where it says 'New to LS' you will see the moderators name Emis, click on his name, and then click on message.
    • hanny32508
      hanny32508 sandra01720

      Posted

      I've tried that too.  But then I got these what looks like bladder infections, just at the beginning of the urethra. And soon after I would find myself needing anti biotica again.  

       

    • hanny32508
      hanny32508

      Posted

      Till my daughter had an interesting thought - the urethra likes an accidic environment, contrary to what I was creating for the LS.

      So I now use a small amount of apple cider vinegar in my Perin bottle and spray with that.  Result - the problem is over. I've discussed it with my doctor and he too mentioned the different oposite needs of each problem.  

    • hanny32508
      hanny32508 sandra01720

      Posted

      So this is what I wanted to communicate with people who struggled with the same - the LS to keep the fusing at bay needed the baking soda rinses, however, the urethra needs an accidic environment.  That is very tricky.  Since most of the fusing is practically gone, and I hope will stay away, I now started with rinsing with apple cider vinegar.  It seems to create a better environment for the urethra, the small swelling disappeared, my urge to urinate has turned to normal and the feel of an upcoming bladder infection has also gone.  
    • sandra01720
      sandra01720 hanny32508

      Posted

      How very interesting!! I'm so glad you found an answer to that issue! So are you recommending we do that also? Do you feel it's unwise just to do baking soda?
    • Morrell1951
      Morrell1951 sandra01720

      Posted

      I suspect that too much baking soda is bad and squirted with force right on the urethra is bad. I splash my undercarriage once before bed, with most of my efforts aimed at the perineum and anus. It wouldn't be too hard, with a small squirt bottle, to aim at the urethra.
    • sandra01720
      sandra01720 Morrell1951

      Posted

      I do about three baking soda baths a week. I don't wash between each bathroom visit. Often just straight water in the shower once a day and then an evening shower or bath. That prob wouldn't be enough to create a problem?
    • Guppy007
      Guppy007 hanny32508

      Posted

      That's very interesting, keep us posted on how you get on.
    • Guppy007
      Guppy007 sandra01720

      Posted

      Sandra because you have problems with itching I think you should think about be spraying after every bathroom visit, it takes but a moment, the urine on your skin, no matter how little aggravates your LS. 
    • hanny32508
      hanny32508 sandra01720

      Posted

      It is hard to say that I recommend something.  But perhaps I can say - it is worth a try when your urethra is giving you the discomfort of the beginning of a bladder infection. With that it is also important that you drink lots.  The ginger and licorice root combination tea was helpful as well, I'm sure.  

      Very important part for me was that I didn't have to start another series of anti biotics.  Which comes with several after affects - affecting your bowels for instance. And the time it takes to restore all.  

      I was walking in a circle - bladder infection, anti biotics, unhappy bowels, restoration period, bladder infection again etc.  Now that I understand how this came to be, it is much easier to break this viscious circle. And I won't miss the pain of a bladder infection. (boohoo)  

    • hanny32508
      hanny32508

      Posted

      Forgot to mention - baking soda is opposite of apple cider vinegar.  LS doesn't like the accidity,  urethra doesn't like the alkaline of the baking soda.  So it is kind of a balancing act to keep urethra happy and LS at bay.
    • sandra01720
      sandra01720 hanny32508

      Posted

      It's so nice when we can break cycles like that! Was recently on antibiotics for a very stubborn finger infection and, yes, I spent the next while working to rebuild my gut health. It's much better again with the use of probiotics but I was surprised how long it took to get there!

      So helpful to compare notes with each other.

    • hanny32508
      hanny32508 sandra01720

      Posted

      Sure is nice to compare notes, indeed.  Without it I wouldn't have survived this ordeal.
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