Is this my first ever LS flare or oestrogen deficiency?
Posted , 5 users are following.
I am so confused right now! Diagnosed with LS 5 weeks ago and been using steroid since then. My only symptom was intense burning which has only just calmed down to manageable. Just been to the gynaecologist for the results of my biopsy which showed no signs of LS. Luckily for me, the lady who runs the Vulval Skin Disorder clinic was helping out in gynae today so I was passed to her for examination. She said my vulva is showing signs of extreme oestrogen deficiency, which can cause burning, and no sign of active LS. She does however think I have had active LS at some point , even if I haven't had symptoms before. She also said possibly vulvodinia. Told to wean off steroid and increase vagifem then see what happens. I don't know whether to be happy or not ...... has anyone had a similar experience?
0 likes, 7 replies
pamela70431 Guest
Posted
i would take that and run. it is my understanding that if you have LS you have it for life.
if it is just an oestrogen deficiency this should be easily remedied by creams and or oral meds.
patricia87844 Guest
Posted
I HAVE THE VERY SAME SYMPTON! INTENSE BURNING BUT ???MY BIOPSY SHOWED i do have L S? I CANNOT SIT DUE TO BURNING! MUST USE RUBBER DONUT AND IT GETS Too SORE TO sit even. i am on VEGAFEM. dont think its helped any.oh I WISH i could find a solutiom, dont have any life anymore, just have to lie around. anyone have a solution?
sT RVEN? I SM I
Guest patricia87844
Posted
I have a donut cushion too and it's been a Godsend. Have you been prescribed steroid ointment?
patricia87844 Guest
Posted
I HAVE THE VERY SAME SYMPTON! INTENSE BURNING BUT ???MY BIOPSY SHOWED i do have L S? I CANNOT SIT DUE TO BURNING! MUST USE RUBBER DONUT AND IT GETS Too SORE TO sit even. i am on VEGAFEM. dont think its helped any.oh I WISH i could find a solutiom, dont have any life anymore, just have to lie around. anyone have a solution?
sT RVEN? I SM I
beverly52803 Guest
Posted
First I've heard of someone having had it then no longer having it, but as no one really knows about it and just offer theories I would accept the negative biopsy results. Are you old enough to be estrogen deficient? If you are post menopause that usually results in atrophy. Was there no mention of that? I was first diagnosed with VA, was prescribed hormone cream but was reluctant to use it due to breast cancer in the family. Three years later diagnosed by a vulva skin specialist with LS which I was told was "in my case" caused by lack of estrogen. Am now using hormone cream and steroid ointment.
Guest beverly52803
Posted
Im 58 so yes I'm old enough. I think as I have signs of having active LS at some point, even without symptoms, I still have it but it's dormant ...... for now. She told me to still follow the protocol for moisturising, no tight trousers etc. I use an oestrogen pessary but she said if the symptoms do return to start using the steroid again. Just have to wait and see I guess!
beverly52803 Guest
Posted
So you're saying no one mentioned atrophy? That seems odd as atrophy causes dryness which causes burning. I think most women have issues with atrophy but never cross over into LS.
If this recent dr said she sees signs that you've "had" LS in the past maybe you've had some fusing. Did you ask how she knew? I try to ask as many questions as possible although I know the time is always limited. I call back later to see if it's possible to get the answers. I think in this case it would be important to know. If you're using hormone cream (which I did not until the LS) maybe it will stave off the return of LS.
Or, like some of us who have it, you might try altering your diet. If you haven't read discussions here you can google.