Fed up going around in circles.
Posted , 10 users are following.
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,
2 likes, 37 replies
charlotte95599 sue162
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sue162 charlotte95599
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charlotte95599 sue162
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sue162 charlotte95599
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charlotte95599 sue162
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sue162 charlotte95599
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Oh sorry, it made me smile though that'll be why it was quick then.
mary09950 sue162
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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.
sue162 mary09950
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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.
mary09950 sue162
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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.
sue162 mary09950
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mary09950 sue162
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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.
mary09950 sue162
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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.
mary09950 sue162
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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. 😉
tracy15495 sue162
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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. 😀
helen34256 tracy15495
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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
tracy15495 helen34256
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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. 😀