New here...waiting on biopsy results.

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Hi,

I have been suffering with my issues for almost 3 years.  I am 35.    It seemed to show up after my tubal.  I always went to the same gynecologist and trusted him.  Since the pain started he thought it was yeast and treated it.  Checked for other infections and they were all negative.  That didn't make it stop.  I went back again he then said atrophic vaginitis.  Estrogen cream given topically at night.  It kinda helped but I was still hurting.  He would always say call if it gets really bad but you will do this forever and the pain probably won't ever go away.  

Over the past 3 years I have been at my lowest with this pain.  I am doing what I need to get thru the day with the least amount of pain. I never told anyone but my husband and my mother.  I have children that need me and I try my best but it's hard sometimes.

my symptoms are pain pretty much constant, pain when sitting, pain with intercourse.  No itching.  I have finally decided it was time to seek a second opinion for the new year.

I met my new Dr.  I wrote all my visits with my past Dr down, how I felt, and what has been tested and done.  He listened.  He immediately took Bloodwork.  Thyroid good, estrogen ok, LH good and Testosterone low.  At my initial exam he found the painful area upon exam and described it as tiny cuts to me.  Noted skin changes in that area.  After lab results we decided the biopsy was the next course.  I am waiting on results now.  I am sore...didn't expect it to be so sore but it's in a spot that will move when I move.  

He feels it will be something that needs steroids from looking at it.  I'm hoping he gets me answers so I can feel better.  

No one else in my life knows how bad this affects me.  I tough it up and act as normal as possible but I avoid travel and many outtings due to my pain.

I read the posts here and it makes me wonder if LS is possibly it.

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9 Replies

  • Posted

    Hi Amy, the symptoms of LS are..

    White plaques of skin, often in the shape of a butterfly.

    Small cuts in the Vjay, and sometimes in and around the butt area.

    Sores, often quite small around the Vjay

    Bruises, and discolouration of skin

    Fusing, sometimes the labia minora can fuse to the labia majora

    Itching, a feeling of a deep itch inside the Vjay

    Itching, a feeling of itching outside the Vjay.

    Red spots/rash.

    Difficulty with sex, often feeling very sore during and afterwards.

    That is all I can think of at the moment, but I bet there are more that I have forgotten.

    There is a lot of info on this site and so its worth looking at a lot of older posts.

     

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    • Posted

      Thank you Guppy for your reply and the pointers.  I'm awaiting biopsy too after four weeks but I've developed loads of blisters which look like a form of dermatitis they don't pop, don't hurt, but when the dr touches in certain bits especially right near the fourchette oh god it's sore and getting out of a chair it seems it won't bend with you almost,  I've been told no dermovate for now or anything as the skin since biopsy isn't healed, it's a worry. 

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  • Posted

    All of your symptoms I have and I'm still trying to pinpoint what makes LS worse and what makes it lighten up. I have found out that sugar is one culprit. Stress is another. I have persistent bladder infections. It seems that any infection, but especially bladder makes it flare. Another problem is fatigue from lack of sleep. So, once I take control I do find some relief. I just recently learned from this site that Borax helps. So I now have a spray bottle with a little Borax in water to spray after using the washroom for any reason. My problem is that I have, all my life, been a volunteer in the community in many aspects. Now that I am over 70 I am starting to cut back on these things because sitting for long periods of time hurts, as does wearing clothing that bothers me skin. At home I wear old cotton nighties, no underwear. Because my breasts are always itching and blistering, I can't wear a bra for very long. One person wrote that we have no one to share this condition with and she is so right. That is another stress because people just think we are whining or not wanting to be involved in community events. I am finally realizing though that I am responsible for ME and I have to take care of ME too. I feel for younger women who have so much life left to live. I hope and pray that there will soon be a medical breakthrough in finding a cause and a cure. Hugs to you all.

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  • Posted

    Hello Amy,

    I looked up disorders of the vulva and there are just so many recognized diseases. LS is one of them more common than I thought. I had intense itching when I was in my twenties and doctors treated me for yeast continuously. Then finally referred to dermatology. A biopywas done but inconclusive. He told me it was LS and prescribed the steroid. I doubted the LS cause I looked in dictionary and it said white spot disease. Anyway it went away and I never thought of it again until I was 59 and have pain symptoms, hardened skin and occasional itching.

    I currently use Clobetasol twice a week and use moisturizer all the time. This is important I think. I am doing okay at this time. I think LS can be under control and you can live a normal life.

    Just find what you need to get it under control. Your doctor should be able to help you.

    Know that you have others here that feel for you and wish you well in your challenge with this. You can be in control and you can be well again!!😊

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    • Posted

      Thank you, Mary!  It's good to know there is hope and a chance that I may feel better in the future.  I know this new Dr has done much more in a few weeks than my previous Dr has done in the past few years.  I felt I needed to get a new opinion and finally got enough courage to trust a new Dr.  So far, I really like him.  He explains everything, listens and answers all my questions.  I have faith he will help me.  I never thought anyone would be able to.

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    • Posted

      I don't know if you're using anything right now or not.

      I suggest you moisturize all the time and if your doctor prescribes steroid ointment. I use Aquaphor ointment. You can find at Walgreens and Walmart.

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    • Posted

      Thank you!  I will pick the Aquaphor ointment up.  My next appt he will probably prescribe what he feels based on the results.  
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  • Posted

    Amy

    Sounds like LS for sure. But see a female Gyno

    she would know more than a male, believe me.

    I had to do that, she confirmed it was LS. He just

    gave me the run around. She started me with steroid cream

    then found Perrins Naturals. Have been using it for

    3 mo. helps a lot. I only use the steroid cream once a wk.

    No itching. It works for me. Hope you find something that

    works for you. I'm flabbergasted how many women have this

    horrible thing. Praying for you and anyone afflicted with dreaded thing.

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