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Caryl Rosenthal 05/23/2001 My daughter is 16 years old.
She recently is being treated for vaginitis with a specialist in Philadelphia.
After reading horror stories she was fortunate to find help quickly. The
difficult part is that the treatment has not been very successful. She
finds the whole treatment difficult to discuss. Today she missed school
because of the pain and difficulty walking. Even the school nurse hasn't
been very sympathetic. We really need a source of action that will give
her back her life.
Lia I began having symptoms of
vulvodynia following my first yeast infection, when I was only nineteen
years old. I am now 25 and I can NOT believe I have been suffering with
this painful, and emotionally devistating disease for this long. I have
never been able to have intercourse as it is too painful to even insert
a tampon. I pray everyday that a miracle will make this all disappear.
To all the drug companies, and researchers please help me and the other
women who are suffering in pain.
Linda L. Welsh 05/21/2001 With all the research now
I can not believe we do not get serious on this heartwrenching disease!
Please listen to all of the stories on Vestibulitis, vulvodynia & LS.
We need a cure or at least something to make our lives & the lives of
our families bearable.To be able to be close to our spouse's & to have
the phyical contact again with our partners.Let's stay together & keep
fighting to find a cure!
Mary Jo Matta 05/20/2001 I have had vulvodynia for
25yrs. and nobody could help me. I think this is a very important area
of research as many of us have never experienced sex without pain and
this is devastating to relationships.
Jo Comerford 05/19/2001 How wonderful to find so many
stories that match mine. I have been suffering with painful intercourse
for about 3 years now, but only recently has it developed into excrutiating
daily pain. I have seen so many doctors and have like the rest of you,
been put on several meds, I have even had laser surgery. Which didn't
work for me, I think it MAY have even made it worse.Just a note for anyone
who has used Aldara. I was put on it about 9 months ago, and it made me
very sick. The pain and itching was unbearable while I was on it and I
felt so ill I took myself off it. Ask questions before you let your doctor
even suggest it!It was great to see someone from NZ with this condition,
I am from Australia and with the majority of the information coming from
the USA, it can get a bit lonely over here!It is time to be taken seriously.
My doctor is trying but with little info over here it must be hard for
him too.Have faith girls, if we keep fighting together we'll end up winning.
Even if it just a way to get out life back.
Wendy 05/17/2001 Wow. I'm not alone. After
approx. 13 years of intermittent pain, examinations and heaps of tears
andfeelings of inadequacy - I have alsofinally been diagnosed with Vestibulitisby
a caring knowledgable Gynaecologist.I am currently trying hydrocortisone
cream which seems to be helping. There is a desperate lack of information
here in New Zealand about this type of condition. The most important advice
I was given was to never use over the counter thrush medication as it
exacerbates Vestibulitis. Good luck everyone in your mission for wellness.
Wanda Blalock 05/17/2001 I have suffered with burning
for approximately 30 years. I have had problems working due to the burning.
I have gone to many gyn's to no avail,I would be told that I had a UTI
and put on meds that never helped. I have tried everything and all it
does is aggrivate the burning more. I finally found out about a month
ago that I have Vulvodynia.
Regina St. John 05/14/2001 Today, my doctor decided that
she thought I had this condition. I have had recurrent yeast and bacterial
infections for years. I thought I had one today, but she said that I didn't.
Also, I am currently experiencing bladder/urination problems too. I am
so frustrated and just want to feel better for once.
kate, uk 05/12/2001 I had to diagnose my vulvodynia
myself. I have spent lots of money and two horrible years trying to get
better. I have seen gynaecologists, dermatologists and all sorts of doctors
to no avail. I have tried every suggested 'cure' from anti despressants,
capsaicin cream, low oxalate diets, NA-glucosamine, alternative therapies,
anti candida diets, the avoidance of any irritants, cotton sanitary towels
etc to no avail. PLEASE will someone invest some time and money in some
decent research!
Phyliss I urge the medical community
to take an active role in research to understand the etiology of vulvodynia
NOW !
Susan I have suffered with painful
intercourse for the last 5 years (I'm 25 now). I have been to doctor after
doctor and received diagnosis after diagnosis -- evertying from strep-B,
to allergies, to yeast, and HPV. Since nothing rid me of the pain, eventually
each doctor would "give up" on me. I have been given topical xylocane
and been told I need to be "stretched out". My last doctor recommended
a psychologist for relaxation. Tonight I learned about Vulvodynia and
I finally found what my problem is. Though I found on my own that going
off the pill did miracles, I still have abnormal pain during and especially
following intercourse. I'm so relieved to learn that I'm not alone and
that it is NOT in my head! Now let's find a cure for us.
Karen L. Horton I have suffered with vulvar
vestibulits for over 20 years. The chronic burning, rawness and urethral
discomfort are at times unbearable. I had success with pelvic physical
therapy but after 2 years of feeling good I have relapsed. There has got
to be an answer to this perplexing pain. I pray that God will help us
find a cure. Surely there has to be an answer.
Mary Jo Matta I have suffered with painful
intercourse and vulvar pain for 25ys(I am now 45). This is very debilitating
and most doctors are dismissive. Would change my life if there were help.
Lori I have had vulvodynia for
over a year now. I believe it started after I was treated for Vaginal
Warts with Aldara. The Aldara caused lots of itching and burning. Once
the warts were gone I continued to have pain, burning, itching and stinging.
Nothing seems to relieve the pain, only temporarily. Some days I can't
wear jeans or underwear. Hopefully someday there will be a cure.
nina fleming 03/31/2001 I have had vulvodynia for
10 years, and 9 of those years were spent enduring mis-diagnosis, dismissive
doctors, shame and loneliness. Only recently have I tapped into a medical
and emotional community with any understanding - and still there is no
cure. This is a condition that direly needs attention.
Patricia Ramos 03/23/2001 I hope one day all the women
who suffer vulvodynia, we can have a normal life again. Good luck to every
one.
Sue 03/21/2001 Life has been too challenging with the pain of vestibulitis and vulvodynia. I have had this debilitating condition for three years. I often have pain sitting and just can not function or enjoy my life. More research is needed to figure out a true cure.
judy rubin 03/20/2001 Women (and the men with whom
they have a realtionship) have been suffering for years on end, only to
wander from one doctor to another. Today it is known that vulvodynia and
vestibulitis are medical conditions. As one who suffered for 11 years
and am only now begin to find some relief through a combination of pelvic
floor muscle biofeedback and low oxalate diet I feel it is imperative
that serious research and drub development takes place now.judy rubin
Cheryl 03/19/2001 I've had vaginal pain for
2 years and have been going to all kinds of doctors and had many tests
and still they find nothing. I just found the name of this condition today
and in a half hour on the web, I already know this is what I have. Makes
no sense to me why I have to be my own doctor!
louise 03/19/2001 I have had this condition
for nearly 13 years now. I was initially diagnosed with multiple yeast
infections rotating BV infections and UTI's. I was told I had to take
an antibiotic (macrobid) every day for the rest of my life, had a urethral
dilation and told I had IC for which I received bladder instillations.
I took meds for yeast/BV probably at least once a month for 2-3 years
at the beginning. Finally, I was diagnosed with vulvodynia and put on
lidex (which really thinned my skin). A couple years later, a new GYN
convinced me to stop the macrobid, and the yeast infections cleared up!
The vulvodynia stayed, however. I have tried many over the counter products
for relief of this, but no luck. I really enjoyed sex early on in life,
but it has become something I almost dread because of the pain I suffer
for days afterwards. We really need to find a cure for this. It is one
of the disease where you look like there is nothing wrong with you on
the surface - and that is stigmatizing all the more because so many people
think this is all in our heads. With so many women with the same symptoms
and stories, that is simply NOT possible!
Kelly Genzlinger 03/19/2001 I was diagnosed with Vestibulitis after a year of misdiagnosis and mistreatment. I believe the cause of my condition is a chemical burn from a concentrated over the counter yeast infection. I currently have had no relief from the pain I feel at attempted intercourse with my husband. I question my worth, sexuality, and feminity because of this condition. My husband is wonderful, but does he deserve a marriage without sex? He probably wouldn't ever leave me, but I will probably always believe he deserves that pleasurable part of life. I cannot fathom a lifetime with this disease - I am only 23 and have had this condition a full year of my 15 month marriage ... it isn't fair, and I refuse to believe that there is no cure ... it just has to be found, research funded, and women and doctors educated ... Tell your story and join a support group. Do not be silent - spread awareness of this terrible condition!
Emma Thomas 03/19/2001 I have suffered from vulvodynia
for almost 2 years. It is depressing to hear from other women that this
condition is obviously here to stay. The sad thing is that I've almost
accepted it as part of me - constantly going to doctors and specialists
has proved fruitless and time-consuming. I get by using Lignocaine based
gels and ointments but I can't wear tight-fitting trousers and sitting
is problematic.I look forward to the day that this condition gains greater
recognition among the medical community.
Shelly 03/15/2001 I have had vulvodynia for
2 1/2 years. I have very bad burning, pain and rawness with intercourse
and along with pelvic exams. I also have had chronic UTI's since I was
about 2 years old. That is when doctors discovered that my left kidney
never fully developed. It is about half the size of my right one and just
barely works. When I got into 6th grade I stopped having UTI's and was
fine until I became sexually active around 21. Then that is when all of
this started. I am 24 now. I have always wondered if my kidney problem
has anything to do with my vulvodynia. I was so relieved when I found
this website and realized that there were actually other women that were
suffering from the same pain as me. It helps a lot to deal with it. If
we all keep trying one of these days a real, true cure will be found.
We all just have to hang in there untill then.
Ginamarie 03/12/2001 After approximately 3 years of pain, repeated invasive tests, unsuccessful medication treatments, and endless doctor's visits I was finally diagnosed and so happy to finally put a name to such a horrible pain . . . only to be told that there was no cure and treatment may work or may not. I've been on Elavil for 5 years now and have had some relief but the fear is always there - that I will once again be debilated in pain. I am only 26 years old - just fell in love with a wonderful man who is very supportive . . . but why should I have to suffer the rest of my life with such a dreadful condition. Vulvodynia is embarassing, frustrating, and frightening - tell me how do you explain to people that you are in pain "down there" - nobody understands. I hate this horrible disease. I hate it.
Mary 03/10/2001 I CAN`T REMEMBER WHEN THIS DISEASE STARTED, PROBABLY 17 YEARS AGO. I CAN ONLY SAY THAT I AM IN THE SAME PLACE THAN I WAS AT THE BEGGINING OF THIS NIGHTMARE. PLEASE, WE REALLY NEED PROFESSIONAL STUDY TO LIVE NORMALLY.
Linda 03/09/2001 I have suffered from this
for years my family doctor tells me at first it is all in your head, then
now he says theer is nothing they can do for this,, it is like looking
for a needle in a haystack typical MAN.. wish they had this then I could
sit back and tell them it is all in there HEADS as you can see I have
had enough of male doctors I am seeing a lady gyn. she is at least looking
into this. Linda from Canada/ontario
Amanda 02/28/2001 I have been suffering with
this condition (on & off) since the fall of 1996, about 6 months after
I got herpes. The herpes itself hardly bothers me physically, but it seems
like ever since then I have had one gyn problem after another...yeast
infections, bacterial vaginosis, HPV (abnormal paps, cervical dysplasia),
bladder problems (urinary tract infections, pelvic floor dysfunction,
insterstitial cystitis)...and of course vulvadynia. I'm sure it's related
to the herpes in some way, but I can't prove it.I'm 35 years old. Once
I turned 30, everything went downhill, healthwise.I haven't had sex in
almost 2 years. Most of the time I can't wear jeans, and sitting down
is uncomfortable. Ever month when I get my period it gets worse. I can't
wear tampons because of the pain, and every time I use pads I get a bacterial
infection. What to do, what to do?My current doctor (a dermatologist/vulva
specialist) put me on Vagifem, an estrogen suppository. It does help somewhat,
but not nearly enough.Lauren, you have done a wonderful job with this
website! I hope some more research gets done.
Karen Stevenson 02/28/2001 I have been suffering for
several years but now things are worse. I wonder if it is hormonal, my
age is 43. Also, after our last timw of having sex myhusband now has symptoms
of redness, swelling, and rash. I have been tested for every type of infection
and been on diflucan, flagyl, and monistat every four weeks of 2000. Nothing
seems to help. Now thathe is having symptoms too I think it is hopeless.
Patricia L. Livelsberger 02/27/2001 I have been taking amitriptyline
for 4 years. I still have flareups occasionally. I worry that my daughters
will get this horrible condition. I pray everyday for a cure.
Emily 02/24/2001 Like the rest of you, I need
a cure... in the meantine, does anyone know a vulvar vestibulitis expert
in the Kansas City area?
Marie Mersereau 02/23/2001 It would be wonderful if
someone in the medical community took this debilitating condition seriously.
We need serious research and the word needs to get out that there are
so many of us suffering in silence and that the medical community is so
inept at helping to find a cure.This condition should not have to continue
to make life so unbearable for so many.Marie
Stacey 02/22/2001 I have had vulvodynia for
about 7 year's. At first I thought it was just me,and I chose to ignore
it. I thought it would eventually go away. I am other wise a very healthy
32 year old women. This problem is so painful, embarrasing, frustrating,
and I can't believe there is nothing to make it go away!, Nothing I have
tried help's. I really hope someone in the medical field will take this
seriously, and do something to help women.
Heather 03/03/2001 I have been suffering with
vulvodynia and vaginismus for almost 2 years. It took a year and a half
of recurrent visits to my male family doctor to finally get him to refer
me to a gynecologist (he thought the pain was just in my head). After
the female gynecologist examined me she told what I have is something
called vulvodynia and vaginimus and that many women suffer from it. Finally
someone validated my very real pain that had ruined my sex life. It was
actually a relief that what I had has a name. The treatment she perscribed
is a combination of antidepressants to decrease pain and vaginal dilators
to retrain the muscles which has brought me some relief but although the
pain has decreased, the pain and the fear is still there. I wish the medical
community would take this condition more seriously and would work towards
a cure. Thanks so much for letting me tell my story and letting me know
that I am not alone.
Amanda 02/28/2001 I have been suffering with
this condition (on & off) since the fall of 1996, about 6 months after
I got herpes. The herpes itself hardly bothers me physically, but it seems
like ever since then I have had one gyn problem after another...yeast
infections, bacterial vaginosis, HPV (abnormal paps, cervical dysplasia),
bladder problems (urinary tract infections, pelvic floor dysfunction,
insterstitial cystitis)...and of course vulvadynia. I'm sure it's related
to the herpes in some way, but I can't prove it.I'm 35 years old. Once
I turned 30, everything went downhill, healthwise.I haven't had sex in
almost 2 years. Most of the time I can't wear jeans, and sitting down
is uncomfortable. Ever month when I get my period it gets worse. I can't
wear tampons because of the pain, and every time I use pads I get a bacterial
infection. What to do, what to do?My current doctor (a dermatologist/vulva
specialist) put me on Vagifem, an estrogen suppository. It does help somewhat,
but not nearly enough.Lauren, you have done a wonderful job with this
website! I hope some more research gets done.
Karen Stevenson 02/28/2001 I have been suffering for
several years but now things are worse. I wonder if it is hormonal, my
age is 43. Also, after our last timw of having sex myhusband now has symptoms
of redness, swelling, and rash. I have been tested for every type of infection
and been on diflucan, flagyl, and monistat every four weeks of 2000. Nothing
seems to help. Now thathe is having symptoms too I think it is hopeless.
Patricia L. Livelsberger 02/27/2001 I have been taking amitriptyline
for 4 years. I still have flareups occasionally. I worry that my daughters
will get this horrible condition. I pray everyday for a cure.
Emily 02/24/2001 Like the rest of you, I need
a cure... in the meantine, does anyone know a vulvar vestibulitis expert
in the Kansas City area?
Marie Mersereau 02/23/2001 It would be wonderful if someone
in the medical community took this debilitating condition seriously. We
need serious research and the word needs to get out that there are so
many of us suffering in silence and that the medical community is so inept
at helping to find a cure.This condition should not have to continue to
make life so unbearable for so many.Marie
Stacey 02/22/2001 I have had vulvodynia for
about 7 year's. At first I thought it was just me,and I chose to ignore
it. I thought it would eventually go away. I am other wise a very healthy
32 year old women. This problem is so painful, embarrasing, frustrating,
and I can't believe there is nothing to make it go away!, Nothing I have
tried help's. I really hope someone in the medical field will take this
seriously, and do something to help women.
Martha 02/21/2001 Any help with dealing with
this problem is appreciated.
Mary Zanardi 02/21/2001 How sad is it, that once
again the female population has a malady male physicians cannot empathize
with and thus have little desire to treat. Let us use our respective voices
to unite and demand research and understanding for this disease that causes
so much emotional, psychological and physical pain.
Kylie 02/19/2001 I am only 22 years old, and
for the past 5 years I have suffered from vaginal pain. Like others I
have been told numerous times there is nothing wrong with me. Sex with
my very patient and loving boyfriend is impossible. My patience is running
out. I cannot live like this. We need to find a cure.
JB 02/12/2001 I have Lichen Sclerosus vaginally
and on my upper body. I thought it was vaginal dryness when it first began
8 1/2 yrs ago. It became so painful as time went on though, without any
relief.I finally found relief using Clobetasol and Estrace creams after
getting a vaginal biopsy. I still have severe vaginal atrophy. I live
with it that is all, as they say 'there is no cure'.
Judy from Michigan I developed severe vulvar
pain when I reached puberty 28 years ago. I have had terrible experiences
with doctors who didn't believe me, family members who told me to stop
complaining, and boyfriends who thought I was making the whole thing up.
I the past few years, I have found sympathetic doctors. I now have some
relief of my symptoms through a combination of oral calcium citrate and
topical cromalyn sodium cream and lidocaine ointment. However, the relief
is still not enough to have a normal sex life, and I am now close to 40
and may never be able to be a mother. This site is a great idea. It's
time for doctors to stop ignoring our pain!
Jennifer Mason This is a very serious problem
that I have been dealing with for 2 years now and something needs to be
done about it.
Liz I have had this horrible problem for over 6 years now and have yet to find a suitable doctor or answer to the pain and itching I am experiencing on a daily basis. There needs to be more research and more doctors that take this seriously... without the medical community focusing on this as a "real" problem"... more and more of us will feel like our lives are not worth living.
shelley I think you have a great site.
I do hope that one day they can find a cure for this bothersome problem,
or at least know what causes this!!!!!!!
Suzy K. I have had vulvodynia & pudendal
neuralgia for 3 years. I have had my vulva lasered, 3 nerve blocks, been
on steroids, anti-inflammatories, anti-depressants, creams, Neurontin,
anti-histamines, pain pills, etc. The only thing that helped was the Neurontin,
which later quit helping(despite upping my doses). I take daily Aveeno
baths, which are soothing. This is such a frustrating thing to live with.
I have constant itching and pain, sometimes burning.
Christi (NYC) Just wanted to add my support!
My story is much like everyone elses - lots of doctors, lots of treatments,
finally a diagnosis and no cure yet. Not being able to have a normal sex
life is so difficult to deal with and I think people who don't suffer
from this cannot even come close to imagining what we are going through!!
And let alone sex - just the daily discomfort and sometimes serious pain
we endure everyday definitely wears us down physically and mentally.Stay
strong!
Susan p 01/29/2001 I am a 40 year old divorced woman who is plagued by this disorder called vulvodynia. My sexuality and mental well being are affected by this disease. I am searching for an answer and want a cure so that I can live a healthy normal life. My pain is constant and there is no relief. Fear and pain are what I deal with on a daily basis. Please help me and the rest of the women that have this disease.Susan POregon, USA
Laura Uthe 01/23/2001 Columbia, Missouri, USA
Joyce J. 01/17/2001 I am a sufferer also for 5
years. judy rubin 01/17/2001 Research must be expanded
and funded to alleviate the distress of hundreds of thousands of women
who are suffering from this debilitating condition.
Heather 01/16/2001 I had a yeast infection about
8 months ago, and ever since then sex has been too painful except on rare
occasions. It is causing problems with my boyfriend, who is anxious to
help but he really can't do anything, and as a 22 year old male he's kind
of into sex! I went to the gyno at least 3 times (to 2 different doctors),
told them my symptoms, told them that their exams hurt, and they just
brushed it off. One of them told me that the pain would improve as I got
older. The other told me that I was probably tense from anticipating the
pain and to rub A&D ointment on it. Neither of which helped, of course.
I figured out what I had by looking online. Now I have to go back to the
doctor and bring printouts of web pages describing my symptoms and see
if she believes me this time.
Kim Kordela 01/12/2001 Lauren K. -- Thank you sooo
much for what you are doing for us. Your efforts are truly appreciated.
When I was diagnosed with VVS just a week or two ago, (after suffering
for a year), I was relieved just to know what the heck was wrong with
me. I thought they could give me some medication, it would go away, and
that would be it. Boy -- WAS I WRONG. Research needs to be done. There
are so many of us suffering physically and emotionally from this condition.
Not being able to have normal sexual relations with my husband is devastating.
Isn't there a female Dr. out there that has this horrible condition/disease
that will stand up, and help push for a cure? We are tired of being brushed
off to the side and ignored by our gyn's. Thanks again and best of luck
to all my fellow sufferers. P.S. I'm looking for a specialist in Maryland,
any suggestions?
Mary Ann Lowry 01/11/2001 Thanks for this great web site. I also wanted to let you know that we have a vulvodynia support group in the greater Los Angeles area. If you are interested in becoming involved contact Mary Ann by E-Mail: mdlowry@dock.net.My vulvodynia was related to severe muscular spasms in the pelvic floor region. Through a treatment called prolotherapy along with pelvic floor rehab physical therapy I have almost completely recovered. Anyone interested in learning more can feel free to contact me. Mary Ann VP Support Group Leader
Pam Caster 01/10/2001 Please give us your help and
support. This is an extremely debilitating and frustrating disease, and
research must be done to help the hundred of thousands of women who are
suffering.
Rebecca D. 01/07/2001 My vestibulitis started after
removal of a cervical polyp. Soon after the surgery I developed a "yeast"
infection which I couldn't get rid of for 3 months. I was given Terazol,
Diflucan, Flagyl, Zithromax and Cleocin in efforts to solve my infection.
I was finally diagnosed with vestibulitis after switching gynecologists.
The new gyn. knew what it was, but not how to treat it. I then found a
Dr. in Washington D.C. (4 hours from where I live in NJ) who I had to
pay out of pocket. He put me on amytriptyline for 1 month. I was much
better, however after going off the drug my symptoms returned and I took
it for another month. He told me if I wasn't better I would need to be
seen by him again. So I am debating going back to him or finding s/o closer.
He does seem very knowledgeable about this so if anyone needs a good Dr.,
his name is Stanley Marinoff, Center for Vulvovaginal Disorders, Suite
100, 3 Washington Circle NW Washington, DC 20037. You may have to pay
out of your pocket, though, and the tests can be expensive! I am also
upset that most gynecologists do not know anything about this disease
and may actually be doing harm by prescribing all the antibiotics, yeast
treatments,etc. Thanks for this site!! Lets keep working for a solution!!
Gerri M. 01/04/2001 Been a sufferer for 4 years.
Itches quiet a lot. Especially at nite. If anyone has any answers or remedies
I certainly would appreciate it Also would like to find some sufferors
in Virginia....Gerri
Gerri M. 01/04/2001 Been a sufferer for 4 years.
Itches quiet a lot. Especially at nite. If anyone has any answers or remedies
I certainly would appreciate it....Gerri
Annie 12/28/2000 I was just diagnosed yesterday with vestibulitis - at first, I was relieved to finally know what's been wrong with me, but I am growing more and more concerned as I read about all of the pain that so many women are experiencing. I have a normal life until I experience flare-ups, which have been (mistakenly?) treated in the past with Monistat, Diflucan, Metro-Gel, and Flagyl, depending on whether yeast or bacterial infections were discovered. My OBGYN finally tired of my constant emergency appointments and referred me to another OBGYN who specializes in Infectious Diseases. He first diagnosed me with chronic yeast infections, and now we are beginning the progression of options that are available for VV. The many options seem to all come from very different theories about the problem - why can't more research be conducted to help the many women whose lives are disrupted by pain? Please help! Surely it would even be profitable to invest in such research if 15% of women need treatment! Debi 12/28/2000 I cannot believe that I have found the answer to over 15 years of suffering, questioning, visiting doctors and searching! I am 40 years old and have 2 children. I have complained to dermatologists, ObGyns, family doctors, (even asked my kids pediatricians!) beyond counting, and each one referred me to a different field of medicine, never admitting that I had anything that was worth treating. I can't begin to describe the attitude with which i was treated! The itching is impossible to live with, and in case anyone questions my meaning there, i mean I didnt want to LIVE anymore. The pain and burning brings tears to my eyes at times. Nothing worked, no one listened and I gave up hope years ago of ever having a normal life again. THANK YOU SO MUCH for giving me the courage to go out there again and get treatment! I will do whatever I can to reach out to other women and the medical world to get this info out!
Susan 12/19/2000 Vestibulitis has disrupted
my life in every way for four years. It took two years to obtain a diagnosis
since most gynecologists have no famliarity with this condition. I am
struggling each day. More research is needed to uncover the underlying
answers leading to a cure. Thanks Lauren for an excellent web site and
for having the courage to advocate that many women are suffering with
this devastating condition.
Maria Chiappone nyc 12/14/2000 As I sit here suffering since
this morning with no releif from this nightmare that entered my life,caused
changes in my life,changed my happy go lucky attitude to one of depression
and unhappiness, and yes.. suffering that itch, clob is no friend of mine,,
doesn't work anymore, xanax is sort of a friend, lets me sleep, gets me
out of my daymare,there has to be something else besides this, I ask only
ONE OF YOU from the medical community to hear our plea,, find a cure,
do more research, and to those friends I have found with the same suffering...
I thank god that at least we have each other, because nobody understands
better..hoping for a cure, for the answer..Mariaps... sorry ladies if
I seem rude I'm only venting....
Michelle L. Buchholz 12/09/2000 I just can't believe there
are others like me. I was diagnosed 8 years ago and not because of my
doctor but because I was persistent and just happened to read an article
that described treatment. He let me try it for 3 months because he was
not convinced. In 3 months on Elavil I felt like a new person. I am just
so happy to have found a source of information on this subject. Why doesn't
anyone ever want to talk about this? Why doesn't anyone want to confirm
it's existance?
Ruth Curry, USA 12/08/2000 As a 19 year old who has had
vv for almost 2 years, I completely support this call to action. The fact
that so many women, many of them young women like myself who have never
had the priveledge of a 'normal' sex life, suffer is unconscionable and
requires immediate attention from the medical community.
Sandra Van Oyen12/07/2000 I'm going on seven months now with this upsetting condition. It is frustrating to see Gyne.'s who are clueless and keep wanting to treat "infections" with medications that don't cure, only cause more symptoms. I developed pain and redness in my vulva after an eleven day course of Keflex. I've found out since the the dose was twice the standard for minor infections. I regret the day I took the anti-biotics, but I have learned since that time to be VERY careful about what I put in my body. No longer will I trust a doctor's prescription without researching it on the Internet first. I hope to find a qualified, caring specialist who is able to properly diagnose me. We need more success stories!!! Sandee Linda A Garisto 12/01/2000 This is all new to me, since September of this year. If I hadn't found a health upddate on the news last night, I wouldn't even know what this torture was called. I found this website today, and I so glad I found it; at least now I know I'm not losing my mind. Please, let's find help for all those who are suffering.Linda |