Loss of architecture - despairing

Posted , 12 users are following.

Hello,

I haven't posted in a while because I had been doing well. After researching and trial and error, the only thing I was doing for my LS (diagnosed a year ago) was bathing in borax 2x a week. No white patches, fusing, itching or other symptoms -- I was thrilled that I found this solution.

About a month ago, I went away for a week and wasn't able to bathe in borax. When I came back, I looked in the mirror to find that my lady parts are disappearing, almost melting. There is still no fusion or anything else, but this feels like a kick in the gut. Clearly, this symptom of LS is not reversible...what's lost is lost. I am 51 and appreciate that many women have to deal with this problem at a younger age, so I'm grateful it didn't happen sooner. Basically, my vagina will never be the same. So while the bothersome symptoms aren't happening, I guess the borax isn't controlling the loss of architecture. (unless it all happened in that week I didn't bathe in borax but that sounds a little implausible).

I feel like I'm back to square one--and despairing the way I was when I was first diagnosed. I know there are some laser treatments and shots out there...are they worth looking into? Do they help this architecture problem?

Thanks for listening.

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  • Posted

    Hi msbutterfly, Whenever I have a good run of a few days with no symptoms I get excited only to look down under and see things had changed. It's very disconcerting and maddening that LS has a mind of its own. Most of the time I feel movement and I try to put it out of my mind. It's hard to live with this and has prevented me from dating. I am now in a horrid flare up that has moved on to destroy my uretha and clit. I'm a bit freaked out. I do a sitz bath with baking soda and water from time to time when the flareup is horrendous and use the Clob as well and in between use Emuaid, Aloe vera and castor oil to keep things moist.

    Glad I'm not alone in this dreadful condition.

    • Posted

      susan, have you looked into the o-shot platelet/plasma injections where you live? There is a page where you put your zip code in and you will see if there are people i your area. The pink symbol next to their name signifies they do it to treat LS. I am still searching, calling & leaving messages.

    • Posted

      I don't think I want to do the plasma injections. Sounds painful. I'm afraid of traumatiznig the area even more. Has there been success with this?

    • Posted

      Yes, according to what I have found online. They numb the area before the injection. Would think a biopsy would be worse. It's mostly done at spas, but there are doctors that do them as well.

    • Posted

      Hi Susan - I'm sorry you have to deal with this and don't feel you can date. I would probably feel the same way if I were single. It's unfair, but you're right - you just have to put it out of your head and keep going; find the things in life that make you happy and focus on them. (This disease really sounds like something out of a horror movie...so unfair)

      Have you tried bathing in Borax?

    • Posted

      I have read about the O shot. Not sure I want to do that. I barely made it through the biopsy and again, more trauma and its iffy how long this procedure will last.

      I can't believe how quickly things have changed down under.

    • Posted

      I barely made it thru the biopsies (I had four) too... so the thought of the O shot scares me to death! But everywhere I've read - they say they numb it and you don't feel anything but pressure. If my hood doesn't eventually detach from the clitoris (it's fused at the moment)... or if my LS gets a lot worse - even after treatment... I may consider the O-shot.

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