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Diagnosed with vaginal lichen planus 1 month ago

Posted , 6 users are following.

jana34029
jana34029

hi.  I am 52 years old.  married 30 years, 2 children, 4 grandchildren and was finally diagnosed last month.  Had the symptoms, biopsies, 3 gynecologists, etc over the past year when I could no longer have intercourse.  Thought it was just severe menopause symptoms until I was diagnosed.  My new dr. immediately put me on the dilator series with cobetasol ointment and gel nightly for 20minutes.  after a month, she put me in for a procedure to open my vagina up.  You could only get 2 fingers in after a month of dilators.  I am now on the largest dilator and the clobetasol, lidocaine and having to take xanax and a pain pill before I insert the dilator.  only 2 days since procedure but wondering if others have been through this.  please tell me there is light at the end of the tunnel.... i am so depressed, in pain, frustrated and feel like there is nothing good to come.

1 like, 12 replies

12 Replies

  • kathryn07219
    kathryn07219 jana34029

    Posted

    Hi Jana,

    Interested to know what the "procedure" was.  Was it Fentons Procedure?  This has been recommended to me by my gynaecologist and I have to let him know in August whether I want to go ahead.  I'm not sure I do as I am concerned that it may set my LS off again.  It is currently kept under control with clobetasol (Eumovate).  Some of the other correspondents on this forum have recommended I use the dilator rather than opting for a surgical procedure.  I would be very interested to follow your progress.  Wishing you a happy outcome.

    • jana34029
      jana34029 kathryn07219

      Posted

      I just knew the procedure as her opening up my vagina.  cutting away the lesions that had adhered together and cutting away the scar tissue.  She said I will use the dilators for the rest of my life to keep my vagina viable and open.  Thank you for the support.
  • nannylin
    nannylin jana34029

    Posted

    Hi jana so sorry to hear this. I have recently had a vaginal pelvic floor repair and this has made the LP a lot worse (I know it's not the same op as you are suggesting) . This was 5 weeks ago and so far no sign of settling. I suppose if you are prepared for things to get worse before they get better then it's easier to get through. Even if the op opens the vagina to allow intercourse the LP will still be there. Personally I would only have something done if I was having difficulty having a wee. Good luck.
    • jana34029
      jana34029 nannylin

      Posted

      I agree Nannylin.  I asked what would happen if I choose to let my vagina close up.  She said it could begin attacking other organs like my bladder or my colon...  I guess that's the frustration, no encouraging things in my mind.  Best wishes to you too as you struggle through your decisions.
    • hanny32508
      hanny32508 jana34029

      Posted

      Jana, have you tried the baking soda and coconut oil routine?  I was entirely closed up and at that time it took me over half an hour to wee.  Then a dilation procedure was done - stretching the tiny opening that was still there so I could pee normally again.  Then I started rinsing with baking soda, taking baking soda baths and moisturizing with coconut oil and to my utter surprise the rest of the fusing slowly but surely disappeared.  (next to cutting out sugar, alcohol, cheese and gluten)

      I'm still doing this routine and still dilating with the help of a dilator set and am able to keep LS under control.  (twice a week a small amount of Globetasol as well)  When we went for a five day trip I forgot my dilator set and had to do without for this period of time.  All was reasonably well, but better to do dilation every other day or perhaps third day. I am also using hormone replacement.  I think it is the combination of all that make I can fairly well cope with LS at present.

    • jana34029
      jana34029 nannylin

      Posted

      I am starting to feel the same way Nannylin.  It has now been almost 2 weeks since my procedure.  I still have trouble with the dilator.  The doctor has me on medication to relieve some of the pain while I'm using the dilator.  But I do agree, I am not having anything else done unless I absolutely have no way to wee!  It's terribly painful.  But the doc said if I let it close up the LP could start attacking my bladder or colon... I go in for follow up this week so hope to have a better hold of things then.
    • jana34029
      jana34029 hanny32508

      Posted

      with your dilator, do you use the largest one?  I'm struggling.  I also am on the clobetasol, HrT and a steroid suppository 2 x's a week...
  • karen41728
    karen41728 jana34029

    Posted

    Hi jana

    So sorry to hear you have lichen planus I have it too I'm 57 also I have oral lichen planus which means I can't eat spicy foods.

    I noticed mine jana after having treatment for abnormal cells after a smear test just wondered if you've ever had a problem with smears only I speak with a few ladies who suffer with this disease after problems down there

    Karen

    • jana34029
      jana34029 karen41728

      Posted

      No karen, my pap smears came back totally normal and my biopsy came back questionable, but with all the indicators.  Fortunately I found a doctor who specializes in the VLP and other vaginal disorders.  Not just a regular ob/gyn...  she is a research doctor...
    • jana34029
      jana34029 karen41728

      Posted

      Hi Karen.  No, I never had abnormal pap.  It just amazes me how this disease can take hold of your life.  I hope you have had good results from your treatments.  They did a biopsy for diagnosis...   
  • jana34029
    jana34029

    Posted

    thought I would update on my progress!  Things are doing much better!  I have a fully functioning vagina and was able to have intercourse!  I am still on the dilators daily with clob ointment and gel.  As well as a steroid suppository I use every other night right now.  That will taper down soon to just once a week unless there is a flare up.  I can definitely say the procedure and endurance has worked.  Now to just keep doing what I'm doing.  Which does take it's toll every night without fail is difficult.  But it is worth it.  The one thing I can tell with this disease is that stress is a huge trigger for it. It is an auto-immune disease and so I treat it like one!  
    • hanny32508
      hanny32508 jana34029

      Posted

      Congrats to you Jana!  You have found a way to live with LS and that's a big accomplishment. ( I too still keep the dilators going and still use glob twice a week.)  Indeed, to keep this routine going is the big challenge.  Hang in, it's worth it.  
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