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Margaret 11/29/2000 I can only add my name to
the list,and hope like all of you,that someone out there will care. Maybe
it will take their wives or daughters,( in the medical research or drug
research areas)to get them to care and help us.
D 11/29/2000 I have had this disease my
whole life (26 years). The first time I had sex at age 18, I felt like
I was being ripped open. I feel burning whenever anything touches that
area. WHy didn't any doctor ever look or touch down there when I was a
child? Why is it that when I told my GYN her exams hurt, she laughed?
And why when I finally went to a vulvodynia specialist who RUNS vulvodynia.com
(!!!!!) did he tell me that I was getting better but just didn't want
to admit it. Why doesn't anyone care? Why does everyone think this is
a big joke? Will I ever have a family? Will I ever have normal sex?
Jamie H. 11/29/2000 It is time that doctors are
informed and learn how to treat us. There are too many sufferers.
Patricia 11/29/2000 Hello everyone,I am 21 years
old and I live in the Netherlands.Unfortunately over here there is even
less knowledge about the disease then in the US.My doctor has told me
that a surgery could help, so I have hope.I have not been suffering that
long (although I think that 6 months is long enough)...I already feel
so bad.I have to cry all the time.I had a very good sexlife, kind of addicted
to it and now..I have to stop.I really hope that a solution will be found
soon!Good luck to you all.
Jacquelyn 11/28/2000 I am a 24 year old college
senior here in texas. I have been sick for two years and counting with
this horrible devastating illness. I will continue to be my own advocate
for my illness. I am currently on a regiman that is helping me cope and
feel better for the first time in years. Keep hoping, praying, and seeking
the cure!
LK 11/28/2000 I have been suffering with
this disease for the past 5 years. Reading some of the other comments
I have I am one of the lucky ones in that my problem is somewhat under
control. I take 50mg. of Elavil at bedtime and this seems to help a great
deal. I feel so alone with this disease as it is not something we wish
to discuss because it's "down there". Friends that I've told about it
don't ask and my family doesn't even know. How can we get this out in
the open if we can't put our faces to this disease?
Annette Crist (England) 11/28/2000 I have suffered with this
terrible disease for the last 14 years. I was treated by several doctors,
who were totally ignorant that this disease existed. I was referred by
my present doctor about a year ago to a gyn' who new something about it.All
treatments have so far either failed, made the condition worse or given
relief for a short period.it's about time more research was made. There
does appear to be more help in America.
Linda Carroll 11/28/2000 I've had this since my hysterectomy
severe, but probably all my life to some extent.
Sandra K 11/27/2000 After 10 years suffering from
this horrible pain- almost daily- I finally found a doctor who listened
and worked with me to find a cure that works for me. I have been almost
pain free for about 3 years now. The lesson to be learned is to NOT give
up on a cure. Find a doctor who is suportive and will work with you to
help you relieve your pain. Don't give up! There is HOPE!! I am a living,
healthy example of that!Thanks Lauren, for developing this site for women
to come together and share thier stories.
Debbie W.11/27/2000 After two years, seven doctors,
I too am emotionally drained. I am glad for this site, as I am contstantly
looking for a miracle and support. Thank you.
Natalie 11/27/2000 Because none of my doctors
have ever explained to me the difference between Vulvodynia and Vestibulitis
I don't really know what the difference is? I have been told I have Vestibulitis!
All I know is that I have suffered for more than 10 years and it is about
time someone did something.
Nancy Keegan 11/25/2000 I've had this devestating
disease for more than 5 years. It's taken some of the best years of my
life. The burning pain has gotten worse over the years, in spite of trying
different doctors, different remedies, and different medications. I am
grateful that women like Lauren have this type of website. We are strong
in numbers, and I, for one, have seen a much stronger presence on the
internet for us in the past couple of years. Everyone be as proactive
as possible--we'll beat this.
Nicole Hawkins 11/24/2000 Although I do not have this
disease, I was shocked and amazed to find out about it, and even more
shocked that being a woman, I had never heard of it. I appreciate a web-site
like this that can inform women all over the world about their health.
Sheryl Reinman 11/23/2000 I want all doctors and medical
schools to be aware of what VV and Vulvodynia Condition is and know how
to treat this condition. I also want more funding to be available to research
what the cause of this condition is and to help find a cure.
Julie Geringer 11/22/2000 It is so wonderful that this
site exists! If there is ever anything I can do for anybody either individually,
or to further the cause in general, please let me know. I live in Westchester,
NY if anyone ever wants to talk.
Andrea Adams-Miller 11/18/2000 So glad to see other women
advocating for better women's sexual health care by bringing attention
to the need for research. There are thousands of women suffering in silence.
It is situations like this that give them a voice. Stand firm in your
pursuits, it will come.Andrea, the SexualityTutor
Denise 11/17/2000 I just found a referral to
this site on an AOL message board--thanks so much for posting it there!!
I've been suffering from this since getting a bacterial infection in March
2000--it's gotten less severe but still a constant thing to deal with,
and my doc knows very little about it. I'm going to take him some info.
from the web and try to educate him myself. : ) Good luck to all of you.
Amanda Newland 11/16/2000 I am 23. I have had this pain
for two years and I am getting more frustrated every day. I have more
real pain than itching and it affects every aspect of my life, not the
least of which is my marriage. Thank God for a supportive spouse and web
sites like this.
Sue 11/16/2000 I've had this horrendous disease
for many years. I went to many Drs. before finally being diagnosed. I'm
also amazed at how few Drs. are even aware of this disease. Up until recently
the pain was under control, but lately I've had terrible burning again
and some itching. I'm getting so depressed thinking that I'll have this
burning until the day I die. God help all of us. Sue
JILL NJ USA 11/13/2000 First of all thank you for
this much needed website. I have suffered for 4= yrs. with vulvar vestibulitis.
This is an awful affliction. Women need a cure now. If this was a mans
disease there would have been a cure a long time ago.Luckily I have found
a bi relief fro taking acidophillus. I hope it helps someone else too.
Good luck to all.
Andrea Buckley 11/13/2000 I am 61 years old and started
with this disease about 1 and 1/2 years ago. It is an awful thing and
I feel so badly for young women who are raising families and wanting children.
That involves a lot of sex which in my experience is very painful.
Tammy Gumbita 11/12/2000 Doctors need to be more educated
about vulvodynia, thus we need more research to teach them how to help
us.
Margaret E. blewett 11/12/2000 I have had this since 1995
and I saw 10 doctors before I got a diagnosis and it was me who suggested
it. There is a pain clinic where I live Calgary Alberta Canada but since
I found it afer I had this more than 2 years I am denied the clinic. This
has ruined my marriage(now over) and it is threatening my job. There are
more of us than is known and we need pain relief now
Margaret Lucchesi 11/11/2000 Chicago, IL I am 27 years
old and have been married for 3 months. I am beginning to wonder if we
should have gotten married because I have had Vulvodynia for the past
4 years with little relief. I have seen 4 OB/GYN's and still am unable
to have painfree intercourse. I am afraid that my husband will find this
situation too difficult and will not want to continue our marriage.
ina kunis 11/09/2000 as the mother of lauren- the
woman who designed this website and sufferer of this terrible medical
disorder- i would like to say how proud i am of her efforts to help others.
a "free exchange" of both good and bad experiences and emotional support
are very necessary especially with such little knowledge on this subject.
keep helping each other and good luck to all.
Shelley McClelland 11/08/2000 I have suffered for two years
with vulvar vestibulitis. I hope that any medical persons who read this
will understand the immediate cure for this problem. We are all waiting
for your help.
Mickie 11/07/2000 After reading all the posts,
I have to say that I'm lucky that I don't have this terrible disease.
Before reading a post on a message board, I never heard of it! Because
I have multiple illnesses and disabilities, some 'orphans', and because
I'm a woman, and most importantly, because I'm a human being who believes
none of us should suffer unnecessarily, I support your battle. I wish
you the best of luck with being heard!! I am sending this site to everyone
in my address book.
Kara Johnson 11/05/2000 I have had VV for two years
and suffer horribly. I don't feel as if I can continue to live my life
in this pain. I've seen numerous doctors but no treatment seems to help.
Barbara Booth 11/05/2000 First of all I would like
to give this Lady A big hug for trying so hard to get our voices heard.Thank
you from the bottom of my heart. I would like to say that I have had vulvodynia
now for 5 years.I was one of the unfortunete ones to have the surgery(vulvectomy).and
to no avail. I thought to myself, I can't live like this for the rest
of my life.the stinging and burning and irritation most of the time is
more than I can handle.sex is out of the question.can't take the pain
even with lidocaine which is supposed to numb the area.I guess what has
helped me the most is pain medicane that I take called Lortab7.5.and believe
me when you hurt this bad all the time it doe's relax you enough to deal
with it.I also take paxil at night before going to bed.I have just learned
myself from my experience that any kind of sabs or creams only make my
condition worse.I can't even use estrace thats been compounded to build
up the tissue that I have lost in the vulver area.thats pretty bad.I am
hoping and praying so much that someday they will come up with a cure
for all of us ladies that have to suffer so much from this horrible nightmare.may
god bless each and every one of you.Love,Barbara
Chris 11/04/2000 Houston, Texas Hope your'e
able to get the media's and the politations attention with this. I have
suffered with this disease for over 20 years. We need help! This disease
has definitly diminshed the quality of my life. Good luck and thanks for
getting out there and trying to help all of us. Chris
Marina Odino 11/04/2000 Thank you Lauren.You are doing
a great effort for getting recognition from the medical community and
thedrug companies. We really need a cure for this terrible disease called
Vulvodynia.I had been dealing with this for over 4 years. All my life
has changed since then.I hope that one day researches and medical community
give the diseasethe attention it deserves so women like ourselves can
live pain-free satisfying lives.Regards from Argentina.Gracias Lauren.Realmente
estás haciendo un gran esfuerzo para el reconocimiento de esta enfermedad
porla comunidad médica y los laboratorios medicinales. Realmente necesitamos
una curaefectiva para este terrible mal. Sufro Vulvodynia desde hace 4
años, y desde entonces mi vida ha cambiado completamente.Espero que algún
día la comunidad médica nos preste la atención que merecemos, para quemujeres
como nosotras podamos vivir una vida plena, libre de dolor.Saludos desde
Argentina.
Carol S. 11/04/2000 Jackson, MI As a woman who
has had to deal with the consequences of this disease since 1987, I fully
support this call to action.
Bekah 11/03/2000 God bless you Lauren,and your
efforts to get us heard. What you are doing is beautiful. I have had vulvodynia
for about 15 years, since I was a little girl. I developed it before I
even knew about the birds and the bees. I was not diagnosed for at least
8 years. I remember when my pediatrician referred me to my mother's ob/gyn.
He treated me for a yeast infection, when that didn't work, I don't remember
what he said, but I do remember being ashamed of myself and thinking that
I shouldn't bring it up again. I was just a little girl, I didn't know
any better. I have horrendous itching 24/7. It feels like I brushed up
against stinging nettle then was swormed by misquitoes. My only escape
is 'caine creams, but these are slowly becoming useless, since my body
is getting accustomed to them and they lose their effectiveness. I am
terrified at the thought of not being able to escape this itching. I honestly
believe I will lose my mind if it gets to that point. I would rather be
paralized from the waist down and not have any feeling than to have to
live with that. Doctors, please listen to us. Help us. BELIEVE us for
goodness sake.
Cory Ritchie 11/03/2000 I've had VV for over 3 years.
There is hope! I've gotten 80% better. Successful treatments include:
Flax seed oil, rotation diet (for food allergies- this is the biggest
factor for me), addressing other allergies, acupuncture, grapefruit seed
extract.
Pam 11/03/2000 I have been suffering with
vv for overa year now. I have constant pain andburning from the time I
get up in the morning until I go to bed at night.It affects every aspect
of your life,from sitting , walking and sexually.Just finding a doctor
that is aware ofvv is hard, It took me over a year to find a quilfied
doctor. The medical field needs to become more aware of this problem and
realize that it does exists and that women do suffer from this. Thanks
for trying to make others more aware of vv. Hopefully the more wethat
suffer speak out the more of a chance a cure will be found.
Tessa Nielsen 11/03/2000 i am 20, diagnosed with VV
one year ago. it has successfully ruined my life and it disgusts me that
few people can help us. they can grow extra ears on mice, yet they ignore
millions of women suffering horribly every day of their lives. thanks
for making this site, i will support any efforts you make. Chantal 11/03/2000 Thank you for this site. Vulvodynia
and its related diseases MUST come out of the dark. Gynecologists SHOULD
be at least familiar with it. I hope change happens very soon.
Ann Eisen 11/03/2000 Thanks for drawing attention
to Vulvodynia. Although it is a sensitive subject, it needs to be brought
to the forefront of the medical and non-medical communities like breast
cancer and erectile dysfunction. I have suffered with Vulvodynia since
I was 19. It took me over 10 years to get a medical diagnosis of Vulvodynia
/ Vulvar Vestibulitis. I have yet to find an effective treatment, let
alone a cure. In my 15 years of suffering I have seen over 10 doctors,
2 physical therapists and 3 psychotherapists. Much reasearch and media
attention needs to be directed towards Vulvodynia to help so many unheard
women.
Suzy Shoemaker 11/03/2000 I have had Vulvodynia for
at least one year. I don't want to suffer any longer. There must be help
out there somewhere......!More and more women are coming out and now it
appears there are more, a lot more than we orginally thought.
Kate Callahan 11/03/2000 Harding It took me two years
and four doctors to find out that I had VV. I now live with this every
day, 24/7 and constantly have to work around and/or despite this disease.
Please, Please, someone find the "magic answer" to help us. I realize
it is not life threatening, but it is painful and emotionally draining
with several side effects, none of which are easily dealt with. One of
us was so sick of the pain, she became on of Dr. Kivorkian's "patients".
We do exist, we are in pain, and we need help.
andria gordon 11/02/2000 I've been suffering from
vulvodynia for almost a year now and it has affected my life in so many
ways - social life, sex life, work, emotionally. i have never been so
scared and depressed in my entire life. i have stinging pain almost 24/7.
i have been to at least 9 doctors in the past year seeking treatment and
getting passed off with questions unanswered. i have spent over $600 on
prescriptions alone, and am still suffering. please help myself and others
like me.
Christy Loebach 11/02/2000 I have had 24/7 burning pain
for 2 years since I was 21 years old. Vulvodynia ruined a whole year of
my life. Not I am "used" to the pain so each day isn't so much a struggle.
Hope keeps me positive. I hope that one day the medical community acknowledges
that vulvodynia is chronic, debilitating disorder that has ruined 1000's
of lives. I hope that one day researches and the medical community give
the disease the attention it deserves so women like ourselves can live
pain-free satisfying lives.
Sheri Lohman 11/02/2000 I have suffered with this
dreadful disease for over 12 years! I am only 30, and have yet to get
married and start a family. Yet part of me feels as if I never will. This
disease affects me every day of my life, in all aspects of it. Wake up
all of the doctors, nurses, and medical professionals - it is time to
take this disease seriously!! I can only hope to see a cure in my lifetime!
Thank you and best wishes go out to all of my fellow sufferers!
Susan Jackson 11/02/2000 I've had vulvodynia for 32
years. I'm so glad that women are finally talking about it. Thanks.
Rebecca Jackson 11/02/2000 Thank you for creating this site, more attention needs to be put on this horrible disorder. I have had Vestibulitis for over a year now and I would not wish this on anyone. I have become depressed because of the chronic pain. I am only 25, I was 24 when I developed VVS. I feel fortunate, my ob/gyn diagnosed vestibulitis right away, but he does not know how to treat it. I have to go to special clinics and pay out of pocket to see a doctor that has a clue.Get the word out about vulvodynia and vestibulitis!Rebecca Stephanie Russo 11/02/2000 This is so unfair that we all have to live like this... I have been suffering for almost 11 months and it depresses me, frustrates me, confuses me and most of all pains me... I hope and pray everyday that someday this horrible disorder will just go away. I wish all of you pain free days ahead and someday somebody will look at this disorder and find us some answers and a cure! Take care of yourselves and hang in there! We're all in this together!
Paige Malerman Shaw 11/02/2000 Why don't enough doctors
know about vulvodynia -- why don't enough *gynecologists* know about vulvodynia?
Why don't people who work in women's health care related hospitals, clinics
and practices know about a painful chronic illness that afflicts up to
15% of women? It is time for the medical establishment to start paying
attention. And if they won't take that responsibility on themselves, then
it is up to us to educate them.
Ora R. 11/02/2000
Leslie Massafra 11/02/2000 After being told I was crazy
for 2 years I was finally diagnosed with vestibulitis and still have it
2 years later!
Tracey Thornton 11/01/2000 What and excellent web-site.
I have had vulvodynia for 8 years and am almost 90% pain free there is
hope so keep striving to be pain free. I have done the Low Oxalate Diet
by Clive Solomons P.H.D., calcium citrate, estrogen cream, biofeedback,
and elavil. I also am a member of the Vulvar Pain Foundation located in
N.C.
Heather Prickett 11/01/2000 What is "normal?" Whatever that is I want to feel that way again. I want to be able to walk without pain and to enjoy life again. I don't think this is too much to ask. I am willing to support this cause and will back every woman suffering from this awful condition. Don't lose hope. An answer will come one day.
Mª Teresa Delgado 11/01/2000 Sufro vulvodinia desde hace 8 años. Cada dia me levanto con la esperanza de que sea diferente al anterior.Espero que encuentren pronto una solución.Siento no saber inglés.Gracias LAUREN. MªTeresa Delgado --Me olvidé poner que soy de España.Feliz día a todas |