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diagnosed with LS about 2 months ago

Posted , 7 users are following.

joey20961
joey20961

After about two years of experiencing painful intercourse I decided to get checked out finally. Well, I wanted to share my story with my LS and what I believe started it, as well as precursor to me being susceptible to it. My mother has it, she told me she was diagnosed via biopsy like me at around my age (34 yrs old). I know it is some kind of auto-immune diesease, as well as genetic, but I also do realize things can lead up to it.      

     I wanted to go into detail here what happened in my case. In December of 2012, I decided to travel to another country to see a man I had met and been conversing with online for a year and a half. I had previously been in a very long relationship with my partner now for ten years on and off. This man i met was significantly larger then what i was used to. during my stay with him, i was torn on my perineal area..we refrained from intercourse...also i was sick, was stressed out badly because i was staying in his home with his family always around us and there i got a uti! also the cut never really healed...even the second time i saw him in march 2013, where i was re-cut on the perineum. ok, fast forward to february 2014 when i was going to gynecologists over the cut that never healed after i got back together with my long term relationship man here..it always would almost re open  and the skin very thin. sex hurt more over time, i am also an ex swimmer and i believe the chlorine damaged the tissues. this year in october i had it, one night up all night itching and the burning causing pain. the skin hardened all over and the clitoris looking bruised and red almost purple. finally in november i saw a gynecologist who did the biopsy (and i had a stitch *painful as hell!* ) and i was given that steroid cream. i only used it 2 weeks then stopped due to being scared it thins the tissues and sex was excruciatingly painful after and that perineal tear re opened badly. i then went on perrins cream both, and the skin became pinker but more aggravated. also, very important, i invested in the Mona Lisa Laser Touch and was given my first session. after sex was significantly less painful, however...i continued with the perrins and the blistering that happened was a nightmare!! so i had to see another doctor and was put on silver nitrate cream to use on the blister that i am not sure if it was from the laser or LS because now i seem to have another new one. I used just tonight some baking soda and coconut oil but i am starting to get very discouraged! sex is painful again! the perineal area of skin more red and thin. i am really worried this wont heal? questions or input is greatly greatly appreciated! i wonder if any of you have similar situations? i am happy to find this group!

0 likes, 11 replies

11 Replies

  • joey20961
    joey20961

    Posted

    i also want to add that i never experienced LS before seeing this man and getting that tear.  also i was on acne antibiotics on and off for years and stopped taking them. i wonder if any of this caused the LS to rise?
  • Okpeeps
    Okpeeps joey20961

    Posted

    Without going into great detail I have to agree with you as I went with a man who was huge compared to what I had been used to. Result - tear. I've never been the same down there and it's only now I'm diagnosed with LS. Have a gyn and dermatologist appnt next week. We shall see what they suggest. Personally I think a lot of the time they're guessing.

    Take care joey20961 x

    • joey20961
      joey20961 Okpeeps

      Posted

      i am sorry you have to go through this as well. I like you have never been the same since and never experienced the LS since that tear..I believe the trauma caused this disease to flare up. All these doctors have not really been able to help. Just praying for a miracle and that it goes into remission! hope you get your answers soon from those appointments, take care Okpeeps
  • andrea58721
    andrea58721 joey20961

    Posted

    Thanks for your input. It's always helpful to put info out there and see what comes back. We all benefit!

    I'm similar to  you in two ways. I was a lifeguard (45 years ago smile so lots of exposure to chlorine. I've used Perrins creme complete and was ecstatic with the results at first, but after a while it started to irritate and I couldn't use it anymore.

    I've tried various creams, including testosterone, to avoid using the cortisone so as to prevent thinning skin. I haven't found one yet that works long-term. Coconut oil is great after I've used the cortisone, but only to 'smooth things over' - it eases itching and I've been using it that way for a very long time. But after my experiences I'd say don't push your luck with a new cream. Always keep the cortisone nearby because if  you leave it too long between applications you might get into flare-up trouble (I have). 

    My heart goes out to  you with this interfering with your sex lives. I didn't get saddled with this until my 50's and my partner had erectile issues about the same time because of prostate cancer surgery - so, you know, it was kind of over anyway!! It's gotta be tough at your age. 

    My best advice going forward: wear skirts and no underwear other than cotton slips. Make a good diet your focus, and avoid sugar as much as possible. Drink a lot of water.

    Good luck with it all!

    • joey20961
      joey20961 andrea58721

      Posted

      thanks so much for the advice! I also believe the coconut oil is really good to smooth the skin and reduce inflammation. I tried vitamin e oil with success as well as natural estrogen oil (radiesse) i think that made things a little better, not sure what to really do to bring it to remission. really the intimacy and partner issue is depressing. I just feel hopeless with that, i can still have intercourse but it is painful. The swimming also is causing a bit of depression because that was a big hobby of mine.  And yes, that perrins was disappointing, it did seem to work well in the beginning but i was wondering if that caused the blister like lesions to form? because i have now two blisters on my upper labia, not sure if that was the result of the lasers (she did external and internal on the first session ) well, we will see what happens. i wish you luck as well, and i will take your advice smile
    • Morrell1951
      Morrell1951 joey20961

      Posted

      The tear you had sounds almost as bad as my episiotomy. I was 'cracking' after sex in my twenties, but after my first childbirth my perineum always wants to split along that scar. The flareup arising from trauma is called the Koebner effect. I'm old and celibate now and it still opens up sometimes, but shallow and pink, not deep and bloody. I believe that's the difference the ointment has made. I was only diagnosed after putting up with painful sex for 40 years. I know it's easy to say, but you can't endure the friction of intercourse during a flareup without making it worse.

      Cutting out big doses of sugar is the one thing that helps really quickly. I've been using jojoba oil with a few drops of frankincense oil in 25 ml. I credit this with half of the improvement I've experienced.

    • joey20961
      joey20961 Morrell1951

      Posted

      your so right, the sugar seems to be an aggressor to the flareups because I noticed since eating more hard candies etc I tend to be more aggitated down there..going to have to start altering my diet. That perineal tear is the worst, however..I believe it is a major reason for the painful sex as it stretches during penetration. But yes, the ointments and oils help rebuild the tissue. Mine also is more thin but pink not a open wound like before. This all happened after i was intimate with a man who had a very large, wide endowment..seriously the size of a babies arm, it tore after and never healed. I am going to have to really try to heal now. doing a lot of research helps. I hope you have no more flare ups. I will take your advice with this mixture smile
    • Morrell1951
      Morrell1951 joey20961

      Posted

      I think the 'sclerosus' part of LS means hardening, so we're more likely to fail to stretch. Think about it – a vagina is built to stretch around a baby's head. If we're tearing it's because LS has already tightened and hardened that tissue. I tried to have sex with a guy who was (believe it or not) sort of cone-shaped, so part way in it was just no-go. Period.
    • joey20961
      joey20961 Morrell1951

      Posted

      that description was on point. at the heighth of my LS, the tissue surrounding the clitoris and labia had become almost raw and hard, like almost chapped lips actually. my partner was telling me i felt tight and it was, the opening narrowed. sex was painful. still is, but not as bad since i had the first session of the laser and the clobestol seemed to soften things after i was on it 2 weeks. the larger more wide a man is the more incompatible it is for us. it's like a no no
  • lynne1945
    lynne1945 joey20961

    Posted

    So sorry for what you are going through and wish you well for the days ahead while you find that treatment that will works for you.

    Interesting post, it certainly made me think. Although my experience is not quite the same re the cause of the tear, I was damaged/torn or burnt at entrance to my vagina after a prolapse repair over 20 years ago and believe now it was the start of my problems. Your post made me put the last jigsaw puzzle piece into place!

    I recovered from the vaginal surgery and it was successful but I was left with a lesion which always bothered me, never healed, itched sometimes and caused painful intercourse over the years. The gyns and doctors I asked over the years passed it off as atrophy, normal, gave me oestrogen creams which I was on for years. Ten years ago sex was finally off the agenda, sadly. Ten years later, last year at age 69, full on eroding lichen Planus.

    I'm getting to grips with it finally after much help.  The steroid cream and cleansing, soothing and barrier cream regime I am on have almost healed my lesion! As others will tell you, the steroid cream is going to be a lifelong treatment, but remember that's it's really a miniscule amount two or three times a week. 

     

    Good luck, sounds like you are on the right track already!

     

    • joey20961
      joey20961 lynne1945

      Posted

      your right lynne1945, the steroid cream used only 2x a week is beneficial and will ward off flare ups. I really was just scared of the potential side effect of thinning skin then again, if used correctly it should not do that. and i am very sorry about your past experiences and the injury and years of painful sex as well as trauma and lichen planus, it really sounds like this disease has so many precursors to it. may we all have answers and heal, i think it is a terrible problem because it seems there is no real cure sad but there is hope xx
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