I need some advice please
Posted , 6 users are following.
HI ladies
I've been diagnosed with VLP some 5 years ago, and have been getting on with it, learning to live with the disease and mostly coping ok. Lots of wonderful help from here for a few years (especially from Morrel, Guppy, Hanny and others).
My little problem now is whether to let my last little bit of labia go or try and stave it off. Labia minora all gone except for a fingernail sized bit on the right. It wants to absorb into the skin underneath and now whenever I put my oil on in the morning I am tearing this little tab and it takes days to heal again. only to do it again the next time I let things dry out too long.
Shall I just let it go? I have this crazy thought that when my 'bits' are all absorbed, where does the disease go? Does it go deeper or what.....? I wish I knew.
Can't get into my gyn until March.
Any advice welcome. x
Oh and HAPPY NEW YEAR from NZ.
0 likes, 7 replies
kay70189 lynne1945
Posted
hi
i was diagnosed with LS 5 yrs ago. i have always used the steroids and baking soda baths. i have shrunk down there. but i think as long as we keep applying the steroids it will slow it right down and wont go any worse. also we need to hear from some one who has been dealing with this problem for may be 10 years!
hope this helps a little.
Kay x xx
Guest lynne1945
Posted
Hi Lynne,
My first thought is what has happened during the last few years that your labia have absorbed without remission? Have you not used any steroid ointment or tacrolimus (Calcineurin inhibitor)? How long has this progressed from the time you first noticed something was wrong until now? Something sounds like nobody has paid attention to you to ensure that this did not happen.
bis
lynne1945 Guest
Posted
Hi Eggbiscuit
Yes indeed I have used steroids from the moment of diagnosis.
I do think I have had this for very much longer than the 5 years of diagnosis, but only vaguely noticed labia going smaller and sex being uncomfortable and put it down to an aging thing. Ive had loads of doctors visits over the years and thrush and 'age related' diagnoses. I do have erosive LIchen Planus and maybe its what happens with that. 😦 As for tacrolimus, my doctor wouldnt prescribe it as I have other chronic conditions and she said I wouldnt do well on it.
I have also had Mona Lisa treatment x 3 and to no avail.
Thank you for your thoughts.
Guest lynne1945
Posted
Gee Lynne,
I am sorry to hear you've had these treatments and still no relief. Very sorry. Friends you can talk to are a big help. I just lost one and am in the process of losing another. How long have you had lichen planus and did you gp diagnose it? I know tacrolimus can cause some other issues if used for too long but, I just read a good article that said pimecrolimus (sister to tac) produced very good results. Wonder if that one would work for you.So I imagine you use coconut oil or olive oil, etc.....
suzanne25846 lynne1945
Posted
My sense is you are feeling to let it go Lynne?
I would say topical treatment with steroid cream would still be required to keep the retraction at bay as you would still be dealing with LS.
There is only so much our medical and dietary advisors can give us. It is the emotional support I feel is needed for who do we express to about how we feel about what our bodies are showing us. I managed to find one woman who lives in the Netherlands through a practitioner we both saw and got us to meet. We have both shed many tears at the loss of this part of body we never paid much attention to until we got LS. It was supportive to know we were not alone in how we felt but could not express to most people.
And Happy New Year from Australia ... I'm looking forward to coming to NZ later this year 😃
lynne1945 suzanne25846
Posted
Thank you Suzanne for your reply. Yes, I am tempted to let it go.
Sometimes I feel as though I am struggling alone with this, until I come on here and see the encouragement you all give each other. I left these forums a couple of years ago, feeling as though I was 'dwelling' and not moving forward. But theres nobody to talk to, only my husband and daughter know.
I have had to keep people at arms length for years as I cant form friendships as they involve SITTING, in a car, a cafe, their place, my place, a theatre, playing scrabble, you name it. We moved cities in 2013 and we do like it here. One thing I can do is walk and we go for many along the beaches an d reserves here. Lifes not all bad.
Im sorry for your troubles over there, the shocking fires. Awful. Love Australia, been there many times. Glad I got lots of traveling done because its not something I can do now.
Enjoy your trip to our lovely land. x
Nancy_K_B lynne1945
Posted
Lynne - oh! I am so sorry to hear that you still have discomfort sitting after 5 years! I too learned so much from Guppy and Hanny about 2 or so years ago for me. I don't remember if you were still reading on here when I posted the results of my 3 months delving into nutritional deficiencies and skin diseases.
I started with my cardiologist turned integrative doc who told me about vitamin D and magnesium as well having worldwide deficiencies. Then I looked up all the co-factors for each of those and it grew from there.
I'm assuming at some point I'll be able to stop taking the 28 pills a day that I do take, but not yet.
Do you have a nutrition routine that you take? If not you might like to read /consider my list that keeps me comfortable
https://patient.info/forums/discuss/nutritional-support-for-autoimmune-diseases-updated-for-several-skin-disorders-641279
It's a bit out of date but really helpful. Many blessings, Nancy