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!!!
Hi May, My advise would be for you to carry on with the treatment. when i was diagnosed at first with psorosis/vulvadynia before the ls I had the same sort of treatment and advise from cons as now, albeit a slightly lower dose of steroid cream. So carry on treating as before and protecting as before. Diagnose yourself if you have the symptoms - as long as they will carry on seeing you - which they should - you will be informed of any changes which at the end of the day is what matters. In my opinion if they don't take the biopsy from the exact spot then it may well be a mis diagnosis!! Anyway you take care and i still await my results. :D
Hallo gbs: You never said how your 'wound' is healing or if you have pain. I was healing fine but today I couldn't resist doing some work in the garden and now I am quite tender again on the vaginal spot! Had a lavender bath and that helped. Well to be honest they did take a biopsy from the inflamed/sore place on the entrance to the vagina but that too was negative! I intend to take your advice but am hesitant to use the steroid in case it might irritate the tender vaginal spot. So I'm waiting very impatiently for that to heal completely. Thanks for your advice. May
Hi May, There are a couple of replys to this come through on **** too. Re steroid use with your surgery.. Ask Lynzi what she thinks. She has had a load of surgery and uses steroid creams and at present has just changed hers. Malx
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Hi Mal!
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.
Hi, When I was diagnosed clinically and then with a biopsy the dermatologist said it was 'really good' !! that the disease was active, in that I had a large sore ulcer at the entance to the vagina. The more active the disease, the more reliable the result of the biopsy. So it may be that if the LS is not 'active' at the time of biopsy it could be missed. I was referred by the gynaecologist to a dermatologist who specialises in LS. She appears so much more knowledgeable than gyn and said I was lucky it was spotted. The gyn thought LS was a small white area, when seen by dermatologist a few months later it was in a figure of eight around the anus, vagina and clitoris!!! So if anyone is experiencing problems with diagnosis, see a dermatologist with interest in LS.
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.
Hallo Cym
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
Hi May, I'm sorry if my post upset you, it was certainly not my intention, which was to give information for people based on my own experience of LS. And not to give up. If one doctor is unsympathetic and unhelpful, try another.
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.
hi cym,i found your post very uplifting,we all need light at the end of the tunnel,iam in the early stages of LS,reading the posts on here have really helped me understand this horrible desease,i have named it bubbles haha keeps me sane in a way,we all need to stick together on this we can make each other strong,keep posting girls and of course boys,love pam xx :D
Hallo Cym
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
Halo again Cym!
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
Hi May/Bran!!
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!!
have just been to see my gyne consultant yesterday I have had a very interesting chat last saw him in january this year when he told me to use dermovate which I decided not to follow after reading other postings as this is a strong cream... instead I have gone between fucibet, betnovate and oilatum which have all seemed to have kept me well. ...I had a very good chat with him about the need for a biopsey which I am very much against having, He agreed if you can be diagnosis by visual symtoms you dont really need to go through the pain of a biopsey to prove what an expert already knows so I feel al ot of women/men have had this biopsey when their really is no need. the one point he made was a must to keep the area well moisturised. I hope this might just help someone who has this horriable disease
Hallo Clelsea Blue
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.
hi mayocovie
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
Hallo Chelsea Blue!
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!
Hallo Chelsea Blue!
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 because this condition does not go away and is silently at work!!!!!!
hi mayocovie
I think like you said possiably mine is mild compared to yourself I have it from my vigina to anus which had all the spots and originaly splits to the skin area also on my labia skin have had this condition for about four years but it took me along time to go to my gp as I thought it was all to do with the menapause and because of the itch around my anus I had piles but when I did see a female gp last december she was so spot on with her diagnosis I got referred and saw the gyne consultant in january he did drawings of the area but the fucibet I used non stop twice daily for 8-10 weeks a bit like the dermovate you use but apart from around my anus the itch has stopped not saying it wont be back because nothing is forever but I am enjoying the rest my thighs do get sore again I apply my oilatum I dont know why he did not look at the area yesterday I was prepared for this ..but because I had no problems in my skin he did not ask so we had a really good chat about the condition I was trying to find out if this condition is hereditary as my mum has the same splits / itch but wont see a gp afraid But consultant said their is no link found to connect this as a genetic link in familys do hope any info that I give could help
Hi all. Thank goodness there is a gynea with sense.Treat the symptoms. Biopsy for sores that could turn cancerous and not to verify LS. We all know our symptoms girls are very alike. The Paladin you mentioned - if you go on the **** site where the lady who sells it is also a sufferer, as the girls on here will tell you, and the message board on there runs parallel with this one. There you will read how we found out about this ointment. Our medics in england were not aware of it but loads of us are now using and telling the docs etc., about it. It was originally only in the states where it has passed the medic testing whatever they call it there.It is thick and like a paste but boy does it stop your itches and soreness. Everyone has their favourites and its whatever you find in your search for comfort that helps you. bye girls. sb
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