Fed up going around in circles.

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I feel fed up today trying to get follow up.  Last week at the emergency gynaecologist he said see me this week being today for follow up and he isn't even there, no dr is.  He told me stop coconut oil and dermovate to clear blisters up and now I have no idea what to out on.  The biopsy has been six weeks and still read in progress on computer so I still don't know anything.  I do worry about VIN. I can't help it.  I feel it needs something on it all but I don't know what.  The blisters have receded a bit but the skin looks like a satsuma skin where they were it looks angry red.  DAM NHS ahead really led me a merry dance and feel so dismayed with it all,  so the biopsy could be two more weeks then a letter with appointment has to come out so I'm all that time not knowing what to put on cream etc wise.  No one to talk to doesn't help.  I've tried to be positive but the lack of follow up care and help is appalling.  Can a biopsy get lost in the system I have read it can,  I've chased Secretary up twice today and rang GP to but the GP had already my last visit.  I just need a rant,  

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  • Posted

    sorry to hear of so much troubles. No way should a biopsy take that long to come back. I got my results very quickly, within a week. Sounds like you should change who you are dealing with.
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  • Posted

    Not to be discouraging but just do you know, my biopsy came back non conclusive. But my diagnosis of LS is so correct. My gynecologist recognized the sore skin. And my symptoms are all there - itching, sore, thickened skin and splitting.

    And the Clobetasol does treat it.

    You need a primary care provider that has experience with this. My doctor said he has seen many cases in his practice.

    Good luck in getting care.

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    • Posted

      Did you have to another biopsy done Mary?  It's been told to come off the ointment by just a general gynaecologist last week not by the one who gave me the ointment end November.  I don't know if the clob caused the blisters or it was biopsy or it's the L S.

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    • Posted

      No second biopsy , it was when I was in my 20s having itching problem. The doctor gave me medication (don't remember what, I think it was steroid of some kind) and for whatever reason the LS went into remission. I did not have to continue the meds. Then after menopause (I'm 59) I started with intense soreness on vulva and slight itch . My gynecologist recognized immediately. No reason to biopsy again.

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    • Posted

      Mary when do you put clob on?  Do you have regular check ups or have you been left to judge when you need it and have a check up once a year or something?  Have you had a reaction at all to clob?  
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    • Posted

      At nighttime twice or three times a week keeps all symptoms away. If I don't I start to feel something. I put the Clobetasol on vulva and back towards anus a little. Once I put all over the side hair area and that area felt like a burn next day. So it is not needed there.

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    • Posted

      Also I had the Mona Lisa laser treatment and I think it helped me with the vaginal atrophy. The vulva was also treated but I don't know for sure that it helped with the LS. My problems are related to being post menopausal concerning the vaginal dryness.

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    • Posted

      I overlooked your question about how often I see doctor. I think my condition is stable and under control so I will f/u at my yearly. If I have an uncontrollable event like pain or if I have sores then I will call for an evaluation.

      Hope you find medical help you need. 😉

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  • Posted

    I'm so sorry, I know how horrible this can be. I really think you need a new doctor. Try and find a gyno that offers the Mona Lisa Lazor treatment. I had LS for over 10 yrs undiagnosed and I was loosing my mind. Last year I started the lazor treatment and I can honestly say it changed my life. I know it can be a bit pricey but I'm telling you it's worth every penny.

    I highly recommend looking into it. I promise you won't be sorry but even if you decide that's not for you please find a new doctor, one that cares about the torture your going through. 😀

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    • Posted

      Hi Tracy

      I'm interested in the Lazer treatment. How bad was the LS when you had it done? Did it get rid of the itching & the lesions? Do you have to use any creams now? How many treatments?

      Thanks

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    • Posted

      Well the doctor said I was the worst case he had ever seen. Yes I had the itching from hell and lesions. I had a total of 5 treatments. Normally it's only 3 but since I had such bad scaring they wanted to do more. I only have to use the steroid cream once in a blue moon. Mostly after sex. That's only because my colitis was so scared. My life had changed by 99%. Best money I have ever spent. I got my sanity back. 😀

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