Personal Note from Dee
A personal note from Dee:
Years before I ever had my LS diagnosis, I had spent so many anxiety-filled hours, initially sobbing into my tear-stained pillow and diary because of the excruciating pain - and then the frustration of desperately seeking information about the horrific symptoms I was experiencing. What might be causing them and what was going to happen to me? Would I never be able to have sex again? Will I ever get well? Will my partner leave me?
I was certain I had some form of a very rare VD that no one had ever heard of, it must be! Or, was it one of the other myriad of genital infections - though all of those had been ruled out so many times? What was it I had? At one time, I even had two different diagnoses in one day- neither correct, as LS is so often misdiagnosed or overlooked.
In the beginning of my search, I usually ended up more confused and very frightened with some of the nightmare stories or fears I'd read about. But over the next few years, I researched literally thousands of legitimate medical papers, both traditional and alternative treatments, with just as many hours spent. I was on a determined mission. I refused to give up, and I finally found my answer! Putting all the various pieces of the puzzle together in a logical way were the keys to my success. Getting physicians to agree at the time was a different story. But, being a well educated layman, I perhaps was the more fortunate, or could take a different perspective and was not bound strictly by "what's in the book". It gave me a unique perspective and balance to where I was able to connect the dots where others would likely see only see half of the picture.
As my knowledge expanded, I remember one of my doctors asking me where I had received my medical training with my knowledge and understanding of the various terminology connected with LS by then. It was at that point I knew I had reached a significant level of self-education. I've also had several physicians since then ask to write a book with me, with the knowledge I'd gained. One even admitted I knew more than him. (smile) But being so involved with the various vulvar pain and LS support groups I ran for the last twelve years (almost daily), I simply had no time to write a book, as the 150 to 200 emails a day kept me too busy for anything else! Especially when someone would desperately be seeking help - I could not refuse or not reply - and besides, I preferred to keep it on a more personal level, even though it was extremely time consuming. But if I could help in some small way, how could I not?
It was then I also realized - or hoped - that perhaps I had a gift to help others as well. I couldn't throw all that gleaned information out just because I was now well. What's that saying? - only someone who's been there knows what it's like, as only a wounded healer can heal having gone through the fire themselves.
"... my grief lies all within;
And these external manners of laments
Are merely shadows to the unseen grief
That swells with silence in the tortured soul."
"One sees that dead, vacant look steal over the
rarest, finest of women's faces...
in the very midst, it may be, of their warmest summer's day; and then one can only guess at the secret of
intolerable solitude [and pain] that lies hid beneath
the delicate laces..."
~ Rebecca Harding Davis- American author, journalist, and critic
We understand the feelings of embarrassment, frustration, depression, fear, anger and often the silence and all the other emotions frequently experienced while trying to deal with the pain of LS and how it may ultimately destroy your self-confidence, self-respect and play havoc with your emotional well being.
So it is my goal here, and most feverent hope with this website, that it will enable far more people to attain help and relief with some of the suggestions offered, as well as to find answers to your questions. And to understand most of all, that there is much hope for you as well, no matter your age, gender, or how serious your condition might be. Also, to hopefully save you from all of the mistakes I made in my own desperation, and especially the precious time lost and even the relationships I've seen destroyed over the years.
If you have LS, my hope is that and you too will eventually have days, weeks, months and years where you do not even think of your LS and life is normal once again. It can happen - it did for me after suffering myself horribly for ten full years and a worst case condition. I've been well now for 11 full years, and with minimal maintenance - and that is what we'll talk about here.
Last but not least, is my deepest heartfelt thanks and appreciation to my wonderful webmaster, Becky. Without her, this website would not be available. How she puts up with me is a miracle. (smile). I also want to thank the many thousands of members/patients I've talked to suffering with this condition over those many years. And a very special thanks to all of my wonderful helpers - without whom I never could have done this alone. I've learned much more from the patients than they from me. It has truly been my blessing to know and love so many of them and I appreciate the support they've always shown to me.
Our heartfelt goals are: To cure sometimes, To relieve often, and To comfort always.
"We've been there, we know, we care, and we understand."
Thank you all.
PS: I must comment on the photo in the heading, and you may wonder why that was chosen. It's because most of us have used or heard the expression, "Down There", or "I hurt 'down there', or ''down there' in my private area'' etc,etc. The symbolism represents to me "Down There, ain't your shoes sweetie" and it's time to bring the hidden taboos of the genitals into the clear fresh air of sunlight to be discussed without shame or embarassment - which we hope to do here - and using the correct terminology.
Plus, to me, the photo shows the perfect LS sufferer: a woman (most LS sufferers are women) - no pantihose (that's us!). Her legs are not crossed - maybe she's having a bad LS day. Her toes pointed in, she seems somewhat unsure about what to do about her LS - yet she's a strong, confident business woman, going on with her life, and - "Living with LS!"