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Doctor experiences

Posted , 19 users are following.

Guppy007
Guppy007

I was diagnosed around April this year.  Looking back I can see I made some errors, but I also think my Gynecologist failed to impress upon me the gravity of this auto immune condition.  Only now in October can I see the results of this...some of my labia has fused! and quite honestly I do blame myself, but I also had no idea what I was dealing with...anyway, I thought I would ask other people to share their experiences of their doctor and their treatment....

3 likes, 131 replies

131 Replies

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  • anna80050
    anna80050 Guppy007

    Posted

    i feel the same way..i was diagnosed in May...v quickly after my labia minora disappeared...had alot of soreness and felt depressed. My dr saw white patches at my yearly check up the year before, but didnt think of LS. I felt vey letdown. She says she sees about 10 cases every week and was quite low key about everything, which made me feel that it wasn't such a big deal.

    I am trying to reduce my anxiety, stress etc...have started doing a course in mindful meditation...at least we have this wonderful group.

    • Guppy007
      Guppy007 anna80050

      Posted

      Anna, I can understand you feeling depressed, I was pretty shocked myself, its a big deal for sure!  No wonder you felt let down.
  • sheila49099
    sheila49099 Guppy007

    Posted

    Hi Guppy,

    I never had boils , or not that I know of because I never looked at myself until

    recently. It began with severe itch around the anus, so bad I went to the doctor,

    I had been sitting on ice cubes etc.  She told me to stop being so silly and that here wasn't anything wrong.  However she didn't look and I had to beg her to please check and she did so reluctantly telling me to stop the nonsense. I never

    went back to her but continued going from  one GP to another. That was over 30 yrs ago

    • sheila49099
      sheila49099

      Posted

      I keep trying to write and somehow my computer wipes everything a

      I will try once more to continue.

      I eventually found a Gyn who had a great reputation and she turned out to be useless Just kept telling me to try more HRT eventually took a bio but got no results from her and out of the blue she left and

      went to Texas.  I continued to search for a dr and found the best one

      yet, I have been with her for yrs.  She diagnosed me and sent me to

      a specialist at the hospital (probably the vulva clinic that Morrell mentioned just recently on this site) I didn't know it at the time.

      That doctor put me on a machine - threw a peice of paper in my hand

      explaining what i had. Handed me a prescription for a cortitsone cream told me to be very careful as the cream was dangerous but

      that I must stop the itch which was now all over the vulva and  anus.

      I left feeling damned if I do and damned if I don't.  Really scared.

      I had one more visit with her and then she disappeared to Toronto.

      My GP just keeps refilling the prescription. I have one more thing to

       say but I am hesitant as I don't know if what I am seeing is different or just wishful thinking.  Somebody on this site said to use baking soda

      in a spray bottle after every bathroom visit.  I bought a little spray bottle at Michaels Craft store and it has only been a short while but

      prior to using it I looked like a Barbie and now I have one side of my minor labia.  I am seeing my dr in Dec in Ottawa.  I do not have any

      itch and haven't had since everything disappeared I am now completely baffled.

       

    • Guppy007
      Guppy007 sheila49099

      Posted

      Sheila, are you saying that you think the baking soda is responsible for the re appearance of one side of your minor labia?  Have I understood that correct?

      All these stories are interesting, and helpful actually to people new to Lichen Schlerosus.  

       

    • sheila49099
      sheila49099 Guppy007

      Posted

      Yes Guppy, that is correct. How ever I don't expect to ever look like a real women again.  This saddens me greatly because I haven't told anyone.

      I feel so ashamed of what I look like. 

    • Hazel1962
      Hazel1962 sheila49099

      Posted

      Sheila, the baking soda solution (excuse the pun) seems worth trying, what exactly do you do, how much do you use etc ? 
    • sheila49099
      sheila49099 Hazel1962

      Posted

      I will try again.  This computer is dreadful.  I wrote everything and it just disappeared again.

      I bought a 2 and a half inch spray bottle at Michaels craft store.  Are you

      in Canada?  Put 3 pinches in the bottle and fill with tap water and keep.  handy so that after every bathroom visit you can use it quite liberally.

      Just an added bit of info I also keep another spray bottle with

      household peroxide and spray my feet. I suffered

      terribly years ago with growths from arthuritis  my dermatologist at

      that time said I could never get rid of that stuff.  She repeatedly treated

      me uselessly and painfully.  Now I treat myself and it cleared up in one week.  No more painful corns or mucous cysts or anything else.

      I still have ugly feet but not with those things - I can'''t help that.

    • Guppy007
      Guppy007 sheila49099

      Posted

      Sheila...that must be really hard to deal with, and I'm sorry you had to go through all that.  Try not to feel ashamed because really you have nothing to be ashamed of!
    • hanny32508
      hanny32508 Hazel1962

      Posted

      In a spray bottle add three to four pinches of baking soda and fill with warm water.  Then use to rinse after every bathroom visit.  That's what has worked for me.  I also take baking soda baths, one third of a cup seems to be sufficient.  
    • Hazel1962
      Hazel1962 sheila49099

      Posted

      Thanks for the info Sheila, I'm actually in the UK but can get all that stuff here. Will definitely give it a try, it will be a cheap remedy if it works for mesmile

      although I have a good Dermatologist I get nothing like the amount of info one can glean from this forum. Keep up the good work everyone.

  • carmarie
    carmarie Guppy007

    Posted

    I think it is disgraceful, the tme it take for a diagnosis and the lack of infomation given. My doc said I had it and all she did was gve me a printout from the site and give me a prescription for steroid cream and told me itis a manageable condition. I told her I wasnot convinced thave LS and askd to be refered to a GYAE.  The gynae convinced I not got it, although I have vagnal atrophy which is more to do wth menopause and I take vagifem now. I have asked to be referred to a dermatologist for firm diagnosis, appointment January. I am not surprised you did not know what u are dealing with. I did not know until I visited this site and the medical teams, in a word, are PANTS as far as diagnosis and explanations given. This site brilliant. I am just managing using E45 shower cream and lotion as the steroid does not agree with me. Until I am properly diagnosed I ain't using it as it just made me sorer, near the vulva. Also using daktacort antifungal which helps. Hope this info helpful.

     

    • Guppy007
      Guppy007 carmarie

      Posted

      Carmarie, Yes it is bad that there is such a lack of information out there...

      I have ordered some Emu oil to use, which impressed me, you can find it on Amazon...I'm going to give that a go.  

  • Hazel1962
    Hazel1962 Guppy007

    Posted

    I think it's very much dependent on whether Docs have any knowledge of this condition as to whether you get diagnosed. I suffered for around 10 years before diagnosis, my then Doctor kept prescribing me thrush treatment. She did refer me to a Gynae who was an elderly gent and pretty clueless, at the time I had labial adhesions and during the exam he pulled my labia apart causing the adhesions to split, well to say I could have knocked him out is an understatement, the pain was excruciating! It wasn't until I changed Doctors in 2000 that I was referred to Dermatology, a biopsy done and LS diagnosed. Hopefully things have progressed since then and more Doctors are aware, if not then they should be as according to my Dermatologist it is quite a common problem.

    i have had good treatment since being diagnosed and I'm seen every 6 months which is my choice.

    • Guppy007
      Guppy007 Hazel1962

      Posted

      Hazel..How awfull!...but your right, not many doctors are aware of this serious condition, and often by the time they are clued up its too late for many of their patients.
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