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Sign The Current Call To Action GuestBook Back to Call To Action-Open Letter
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Mary Ann Lowry 10/31/2000 Thanks Lauren! This is a great
site. Please add sacro-illiac instability as apossible culprit for vulvar
pain. This problem cause by lax ligaments refers pain to the vaginal,
vulvar, groin area and causes extreme debilitating muscle spasms that
cannot be solely addressed through physical therapy. I know because after
5 years I learned that I had an orthopedic problem not a gynecological
problem. Thanks for spreading the word. Recovery is possible for all.We
just have to find the right ticket. Mary Ann
Amy 10/31/2000 I want to be me again. I don't
want to hurt every single day of my life. I want to live again. The pain
is real, and it has a cause. We need someone to find out what is causing
our misery.
Donna Thank you for this site!!
Have had VVD for 4 years and and no longer feel alone as I hear from others.
Laura DeStefano 10/31/2000 15 year sufferer. Sometimes
the only thing that keeps me sane is reading other stories like my own.
Even after I was diagnosed by my OB-GYN, my primary care physician said
that the condition does not exist. When will the medical community recognize
this illness.
Lois 10/31/2000 I want to be able to sit through
a movie. I want to wear underwear, stockings and dresses that aren't to
my knees again. I want to wash with any soap that's on sale. I want to
make love to my husband. I want to laugh and be happy again. I want to
go back 12 years and be me again. I want to know what went wrong. I want
to know how to fix it.
Kathy Andrews 10/31/2000 Thank you, Lauren, for getting
this going. We need all the exposure we can get. I've been dealing with
this for over 20 years, but was only diagnosed about 3 years ago. I'm
mostly under control right now, but it doesn't take much for me to flare
up. Anything we can do to "get the word out" will help.Kathy Andrews
Karen Fowler 10/31/2000 Always hoping. . .
Rebecca from Australia 10/31/2000 I've had Vulvar Vestibulitis
all my life (well since as long as I can remember) and was only diagnosed
as having it in March 2000. I'm 19 years old and was happy to find out
what was wrong with me... but the happiness was short lived when I realised
that I couldnt just pop a pill to make it better. As I became more aware
of this condition, and others that have it and also after visiting many
support sites I realise that most people who have vulvodynia suffer in
silence. I just wish it were more public and that there was more understanding
of it so that maybe someone will care and take notice and want to help
us.
Marilyn Schmidt 10/31/2000 I have had vulvodynia for
12 years and counting. I have burning pain even without intercourse and
cannot find a pattern to it. I have been through many courses of treatment
and feel like a laboratory rat. I have had 3 laser surgeries, many creams
and many drugs. I have found no relief. I pray for a cure every day. I
agree with some of you that if this were a 'man' problem, there would
already be a cure. Look at viagra. Men can't have sex, so they make a
pill so they can. What about us?I have not had intercourse for probably
5 years and at this point I have no desire to.Thanks Lauren for the chance
to speak out.
fryatt 10/30/2000 It's hard to understand why
more hasn't been done. It's also mindboggling to think so many women have
this. Would it still be so unknown and untreated if it was "penile-dynia"?
I will fight to stay positive and envision a cure. Thank you, Lauren,
for setting such a wonderful example.
Deborah 10/30/2000 Thanks for the site. I've
been suffering from vulvodynia since 1994. I have found very little help
from the medical community. Most of what I've learned is from researching
on my own. This is inexcusable. Doctors MUST stay current. We are supposed
to be paying them for their knowledge. Yet, even at the beginning of my
ordeal, I had two gynecologists who didn't even THINK to test me for atypical
yeasts: they just kept trying to treat me for the standard "yeast infection"
-- the typical strand. It's pretty discouraging, since this IS their field!I
hope this site helps to get the word out to the medical community: We
are here and we need help!
Lisa Mulvaney 10/30/2000 I have been a vulvodynia sufferer
for 2 years now. While some treatments have improved my ability to cope
with the pain, I am still dealing with some form of it constantly. I am
30 years old. My hopes, dreams, and goals for the future have all been
impacted by this disease. It has taken a toll on my overall health, personal
relationships, and livelihood. This is a vicious, cruel, disease that
deserves to be acknowledged by the medical community. Vulvodynia is destructive
and disabling, and can take a terrible toll on the life of one who is
afflicted with it.
chiara 10/30/2000 hope a cure will be found
soon, congrats for teh site from ItalyChiara
charlotte 10/30/2000 After 8 months of pain and
discomfort, I pray for help from the medical community.
Marcille Jordan 10/29/2000 I applaude Lauren's efforts
to get recognition from the medical community and the drug companies.
It is my hope the great numbers of suffering women will be heard and research
to find the cause and hopefully a cure for vulvodynia will become a reality.
It is heartbreaking to say the least when good-intentioned doctors can
only say to their patient "I don't know of anything else that will help
you." This should be an outrage to the medical community. Hopefully they
will be outraged and embarassed enough to contribute to research of vulvodynia.
Diana 10/29/2000 We need help now. Please help
us find the cure or at least effective treatment to help us live with
this awful condition.
Candace 10/29/2000 I would be interested in at
least attempting to find out how many of us suffer from vulvar pain. If
we could all speak out, if we could find a famous spokesperson, if we
could get some national attention, we might find that there are many more
of us out here than we could guess. Strength and help come only in numbers.
Stephanie 10/28/2000 You Go Girl! I just found
your website tonight Lauren through the Vulvar Pain Forum I belong too.
I have been suffering for almost a year and I am 26 years old. I live
in New Jersey. I was finally diagnosed in September even though it took
7 doctors to tell me I had this horrible disorder. I figured it out when
it first started on my own through internet searching. I hope you have
some pain free days and I look forward to visiting your site! Take care!
Stephanie
Amy F. 10/28/2000 i am newly diagnosed and
have dealt with the symptoms for over a year now. it is no picnic, but
hopefully with efforts like these we can put an end to the suffering.
Rebecca Wilson 10/28/2000 I've had vulvodynia for about
10 years. I have a very compasionate gyn, but she doesn't know how else
to treat me, because she has tried everything. Lauren, you have covered
everything that we feel and go through. Thank you for being our voice.
Katherine Profeta 10/28/2000 I absolutely agree with the
entire letter. Time to get this condition noticed and addressed by the
medical community.
Kristy 10/28/2000 Hi Lauren,The site looks good. I've not been doing all that well b/c of infections, etc but other than that I'm hanging in there. I will tell you more about me at a later date.Take care and a job well-done!! |