Labia fusion over urethra

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One of the problems is that when urine hits the skin it burns like hell.  I am worried that if the fusion continues it will completely cover the opening for the urethra and then what?  Have been told that surgery is NOT an option as the disease will cause any cut to reheal. Will I have to have a permanent catheter put in?  Lots of pain, itching, burning and I AM on a regimen of steroid treatments to calm these flare ups.  

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  • Posted

    My GP said the opposite as I am concerned about this too. She said it would be gradual and they cut an opening which would mean general anaesthetic 

    She said nothing about a catheter.

    My specialists keep an eye on it but it still worries me.

    It is sure a scary thing!

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  • Posted

    My gynae hasnt talked to me about fusion and I dont really know much other than what I read on here. It sounds scary. I am not sexually active so thats not a bother but all this talk of things sealing over is really frightening me.
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    • Posted

      Sorry Glyn. Please do not worry unnecessarily. It might not even happen to you.

      Just keep the ointment up to prevent it.

      It does not happen to everyone and it is very gradual.

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  • Posted

    Re. surgery - my gynae has recommended surgery to open up the entrance to the vagina but I have refused it.  I cannot believe that the skin will heal well.  After all, the skin is not healthy to start with!  I have researched the procedure in connection with lichen sclerosis via the internet and it would appear to be more failure than success for exactly the reason I thought.  It seems that in many cases, the cut and stitched skin gives way after a period of time.  In other cases the post-op flare up of LS is dreadful. There are some successful ops though.  Personally, I'm not prepared to take the risk and, if my husband doesn't like it, he'd better move on!
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  • Posted

    i agree about the pain when wee gets on the skin,a case of scraping me off the ceiling,i now have a way of avoiding it,i sit on the loo with both feet flat on the floor and then put both hands flat on the floor(really wouldn`t want to see myself from the back!)the wee then gushes out without touching anything,just be careful you don`t slip as i`m sure if i do i`ll break my nose(try explaining that!)
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    • Posted

      You are too funny!  It is great to be able to laugh at this ridiculous situation.  When I had a bad flare up, the thing that helped me (I've mentioned this here before, but a while ago...) is to use an empty toilet paper tube...which can be cut in two to shorten it and then you will have two to use...to pee through.  Put the toilet paper tube up against the opening, and this keeps the pee off the skin...as it flows through the tube without touching the skin.  A paper towel tube would do the samee and could be cut into more sections even.  I guess this is another funny situation to see.................wink
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  • Posted

    I have had surgery to open up my urethra.  I got to the point where I just dripped.  It was awful. The surgery was a breeze!!!  Could pee normally and didn't even burn hardly right after recovery.  I have also had surgery opening my labia.  It was bad for a day or two, but definitely glad that I did it!!!  I now use the cream faithfully to stay open.  I have had success with both minor surgeries!!!
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    • Posted

      thank you for this encouraging post.  The fusing is so terrifying to think about.  Such an odd and weird thing for a body to do to itself. Sheesh. On some posts here a few months ago, several ladies were told by the dr. to go to a sex shop and buy a dildo..well, each one to buy one, not one for the group...eek.....and use that to either keep the opening open, or gently stretch the opening, and hopefully surgery would not be needed.  I asked my daughter (age 30) to buy one for me at the Mall!  She did.  Bright, neon pink.  Sheesh again.  Anyway, we had a house fire and I forgot that that was in the drawer, so now I am mortified that someone from the insurance company actually had to see that thing and pack it in a box and it is in storage somewhere until we get back in our house and now I won't be able to look anyone in the face in case that is the person who packed up that pink stick (at least I had no battery in it so that seems a bit less indecent)...ahem.  Anyway, the point is that it is a possibility to keep the  vaginal opening open.  I have to go lie down now and recuperate from this embarassing confession...........
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    • Posted

      It is beyond wonderful to be able to laugh about this mess.  Thanks for your post.  I read that the aspect of  the disease is that it fuses or heals when there is not a need to heal, like lots of auto immune diseases it does something against the body.  So that seems to me that if you cut it would re-heal over again.  Not sure.  Hope I don't get to that point. 
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    • Posted

      Hi,  I had a bright pink very small item in my drawer for keeping things open once.  It turned itself on in the drawer when my daughter was looking for something for me and I forgot it was in there as I had given up using it.  I had the most embarrasing time explaining this until I realised it was my golden opportunity to talk to her about ls.  No embarrassment when she realised it was not used as a sex toy but a medical aid.  We still laugh about it now.
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  • Posted

    I needed this humor ladies, especially about the fire.  Thanks for sharing!!!  I do have to say that when I saw the specialist at Cleveland Clinic, Ohio, he said over and over again "IF YOU DON'T USE IT, YOU LOSE IT".  He also suggested that if you aren't having intercourse, that you will need to use something.
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  • Posted

    I'm so sorry for your embarassment...I'm sure they have come across many similar and even more embarassing items.  But you did give us a bit of a giggle...and loving your daughter's humor with the bright neon pink.  I'v had the burning, the itching, the disappearing of parts and buried treasure.  I have only used natural methods and all is so much improved.  I've been able to back off treatment to only once a day instead of after every bathroom break and be comfortable.  A huge blessing. If the prescription medications are not working for you...you might want to consider what I do.  I put witch hazel in a spray bottle...if you have irritation you do not want to use the witch hazel with the alcohol in it...use pure witch hazel and dilute it with about 15% of sterile water.  Spray this on after every bathroom break.  Pat dry and then apply a small dab of aloe vera gel 97% or higher.  Witch hazel pads were used to help heal episiotomies (after giving birth) in the 60's and 70's and work wonders.  The aloe vera gel is healing and stops the itch.  If you have a split...at bedtime apply a bit of manuka honey 20% or higher and slip into a pair of cotton panties...heals you usually in just a couple of days. Manuka honey is well documented in the medical profession as a wonderful healing salve.  I use a cotton swab to remove a bit so as to avoid contamination.  This has done wonders for me.
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  • Posted

    Oops...I meant the embarassment part for Patricia...so nice that we can have a little laugh once and awhile with this miserable disease.
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