False Negative biopsy confirmation
Posted , 3 users are following.
Hallo all you experienced LS sufferers!
If any one of you received a negative result to a biopsy would you please let me know. I firmly believe that I have LP or LS but the con/gyn is not going to treat me because the biopsy result was negative. Any advice welcome. Please!!!
0 likes, 18 replies
Guest
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Guest
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Just left a post for you and Lynzi. I hate to bother you too much as I know you have a lot to contend with.
cym
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I was told by my gp not to use steroid cream on ulcers when they are open, my dermatologist said I need to as this is active disease and needs treating, so i've relayed this back to my gp. Inbetween I use an emollient wash and this has made an amazing difference. I use barrier cream at the first hint of trouble (soreness) and this seems to be working for me.
My dermatologist said most of the whiteness has gone now, but there is still disease on the perineal area, so have been using the steroid cream twice a day as advised and now down to twice a week. I am hoping when I go for review in August I will be in 'remission' (dermatoloists words). She did say not to be frightened to use the steroid cream, as it can get the LS under control, and when in remission I should only need to use it for flares. This seems like good adviced and is working for me. My 'bottom-end' is now unrecognisable and comfortable!!!!! oops better be careful in case it decides to annoy me again. If I reach reission, I will need to be seen once a year for the rest of my life,, whoopeeeeee!! jos of joys!!humph!! but I guess if I didn't smile i'd cry. Hope this helps.
Guest
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To be honest I found your post depressing. What a shame that I did not have this information sooner. I would have used it when trying to convince my con/gyn that I did not think it necessary to have a biopsy as my con/derm had already visibly confirmed LS. As a result I have suffered mentally and physically for what now appears nothing.
I hope others may be better equipped now as a result of this information that you have passed on and help prevent such pain and anguish in the future.
What would you advise that I do now? Thank you Cym
Guest
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I actually feel quite positive about my LS now, after going through the 'mire'. I use a Diprobase wash, barrier cream if sore, and steroid cream if disease active. Currently I am using the wash only. So there is light at the end of the tunnel.
I think if i was you, I would think about booking an appointment with my gp and telling them exactly how I felt about my 'LS'. If I felt I was being fobbed off by gyn/derm, I would ask for a second opinion, it is your right, but discuss these things with your gp, they are with you for the long haul and probably know your family and the effects this uncertainty is having on you. personally.
I hope this helps and apologies once again if you found my post depressing, but sometimes it does us good to think and then we can move forwards and onwards.
ellejelly
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Guest
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Indeed you have provided the women on this forum with invaluable information and we are all indebted to you for taking the time and having the interest to do so.
I return to my con/derm at the end of this month so I hope she will \"take me under her wing\". Keep posting Cym!!
Bran
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You said in your post that you had at one stage a large ulcerated area at the entrance to your vagina. How did you manage to apply the Dermovate to this area?. Was it not very painful? Had you difficulty walking/sitting when this area was ulcerated?. I have hyperkeratosis on the introitus and it makes walking difficult. Thank you Cym
Bran
Guest
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Unfortunately. the ulcerated bit near the intoitus is the ulcer which bothers me most, as it recurs. I think this is probably due to where it is. After having a shower, I apply the dermovate with my finger and leave it to sink in whilst I get dressed. Most of the cream has been absorbed by the time i'm ready to put my underwear on!! At night I apply it before bed, so it has all night to 'sink in'. I guess it's all just trial and error, but I am thankful to my dermatologist for her drawings, and palpating of bits which still need work!!
Guest
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Guest
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Well Done for passing on this valuable information. It might spare some unfortunate person suffering with LS from having an unnecessary biopsy!You said that you did not use the Dermovate because of its potency! Was your GP happy with your condition on your return visit. When your consultant said it was a must to keep the area moisturised did he advise on the types of moisturiser to use or how often. I find that I have to moisturise after every visit to the ladies.
Guest
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same as you with the moisturising after toilet mostly I use oilatum but he said what works for you as everyone gets different results I see a lot use paladine when I spoke to him he did not know off it E45 works for some but not for me so as I said his view is moisturiser is the most important thing then every three months if you have not had a flair up use your main control treatment for a couple of days (for me fucibet ) other dermovate just to keep it controlled. No he did not feel he needed to look at the affected area as I had not experienced any problems since my jan visit so it was more of keep up the good work and will see you in a year or contact gp if you need more advice if anything else feels different I hope this helps you I will say I feel I am lucky that my lichen sclerosus area is not as bad as some other poor ladies but the annal itch is the one annoying thing for me then I apply a lot of the oilatum cream when I feel the itch through out the day
Guest
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You did not describe your symptoms but obviously they must be very mild or your consultant would have insisted on examining you. I have pretty severe symptoms so I have to use Dermovate daily despite the fact that it is so potent. Look after yourself!