Betrayed by her own body -

[Guest guest]

Chelle wrote: Betrayed by her own bodySept. 2004 - Good Housekeeping Magazine ArticleShe couldn't be intimate with her husband - or have the family she longed for. Veasley's brave struggle to find a cure for a painful problem.by

Collier CoolIn 1994, she had just finished her freshman year at the University of Wisconsin. A bright, pretty girl with a full life, was active in her church and loved to play soccer, volleyball, and basketball. And yet, she often found herself falling into a depression. had been diagnosed with an unusual medical condition - a condition, she worried, that would prevent her from ever having a boyfriend or a husband. The pain had come on suddenly. At her HMO, learned she had vulvodynia, a disorder defined mostly by its symptoms--persistent rawness, stinging, or irritation of the vulva (the skin folds around the vagina).In Chris's case, the pain was so severe, she couldn't use tampons, wear jeans or pantyhose, ride a bike, or even sit comfortably. The cause is unknown, though researchers believe that nerve injury, hypersensitivity to yeast, and genes may play a role. Amazingly, the

nurse-practitioner had been able to identify the problem right away--usually, women have to see doctor after doctor in order to get a diagnosis--but she also told that nothing would help.refused to accept that. She consulted several doctors, and finally one diagnosed a serious vaginal infection, which, if it hadn't caused the vulvodynia, was certainly making it worse. After several months of treatment, including antibiotics and an antidepressant for the pain, she got better ("I could wear jeans again," recalls). But she still had excruciating pain at the vaginal entrance. "Tampons were out, and I practically screamed during gynecological exams," she says. Other treatments-estrogen cream, biofeedback, pelvic exercises, a special diet, vitamins -- offered no relief.But was still -- outgoing, eager to keep trying to find help and to help others. In her sophomore year, she became a

support leader for the National Vulvodynia Association, a patient advocacy group with 3,500 members. She also shared her problem with friends. As it turned out, the classmate she most confided in was a guy--and someone whose background was very different from her own. Melvin Veasley grew up in Detroit's inner city, while came from a middle-class family in Wisconsin. The pair quickly became inseparable--in two years, they went from being friends to becoming "best friends, to falling in love," reports. In love--but uncertain about what kind of future they could have together. After graduating in 1997, the couple moved to Baltimore sot hat could work as a research assistant in the neurology department at the Hopkins University. "I wanted to learn everything I could about vulvodynia and to help advance understanding of it" she says. Melvin, who had interned for a rental-car business in college,

became a manager in the company.By now, the two were deeply attached, and finally, in November 1998, after much prayer, Melvin made a big decision. He hoped that would find a treatment for her condition, he explains, but "even if we never had sexual intercourse, I loved and wanted her to be my wife." They married in July 2000.The couple tried to find ways to make each other happy in bed. But their love life was more frustrating than pleasurable, says Chris. "We couldn't have sex, and I didn't have much desire for other intimate activities, because I was in constant fear they'd be painful." continued to look into every treatment she heard about. But nothing helped her. After her marriage, though, felt desperate enough to consider surgery--a procedure in which a doctor removes the sensitive tissue near the vaginal opening. To it was a last resort. When she was 15,

she'd been in a car accident and had undergone several operations and a very long recovery; she wasn't eager to repeat any part of the experience. Worse, she knew the procedure didn't always work. But her surgeon, P. Marvel, M.D., director of the Center for Pelvic Pain at Greater Baltimore Medical Center, explained that it had helped more than 75 percent of patients with Chris's kind of vulvodynia. "It was the only thing I hadn't tried," she says now, "and it was the only way I'd be able to have a normal life, to have a physical relationship with my husband, to become pregnant and have a family." She had the 90-minute procedure in September 2000, then suffered through weeks of discomfort as the area healed. In October, began working with a sex therapist, who gave her dilators to gradually stretch her vaginal opening. In November, four months after their wedding, she and Melvin were able to make love for the very

first time."How can I describe it?" says. She was nervous. But to her amazement, there was almost no discomfort. "It was like beginning our relationship all over again." As for Melvin, "I was extremely happy," he says simply.By Christmas, the couple had more to celebrate: was pregnant. Daughter Grace was born in September 2001. "And as if that wasn't enough," says "my symptoms disappeared completely after I gave birth."But she hasn't given up the cause. "As long as I've known " says Melvin, "she has been trying to help others." She is now director of the research and programs for the National Vuvlodynia Association. "It's not just a job for me," explains. "It's a calling. I want to share my experiences with women who are going through the same thing." The Veasleys, who moved to Providence, Rhode Island, in 2003, when Melvin

was promoted to a new position, hope to have another child in a year or two. Their lives, they feel are blessed. "Let me tell you about an e-mail Melvin just sent from work," says Chris. "He wrote that he was thinking about Grace and me --and he was smiling." Vulvodynia: how to find helpAlthough millions of women suffer from this puzzling disorder, until recently, there were few serious studies on it. Not surprisingly, general OB-GYNs and family doctors often fail to recognize the problem, mistakenly diagnosing a yeast infection. At worst, doctors may tell patients the pain is in their head. And about 40 percent of women with vulvodynia don't seek medical attention at all, because they think there's is something "weird" about their symptoms or aren't aware there are treatments that

might help. Finding the right therapy is a matter of trial and error, involving various medications (including topical anesthetics, estrogen, corticosteroids, antidepressants) and treatments (such as physical therapy, biofeedback, surgery). Specialists say that a diet low in the chemical oxalate may help (oxalates are found in certain fruits and vegetables).For more information, contact the National Vulvodynia Association at or www.nva.org, or write to P.O. Box 4491, Silver Spring, MD 20914. The group offers the latest research and can also recommend a knowledgeable OB-GYN in your area.

[Guest guest]

Chelle,

Thanks! I read the article and I also found a fiction book on Amazon

called " The Camera My Mother Gave Me " that I'm going to read. I've

had vestibulitis for at least 10 years and I've slowly become more

interested in relationship and social issues than in medical ones. My

current boyfriend has stuck with my for 5 1/2 years and I met a

fellow online the other day who has been with his girlfriend (who has

vestibulitis) for 7 years. I just think there should be some support

and encouragement out there for these guys.

-

Betrayed by her own body

> Sept. 2004 - Good Housekeeping Magazine Article

>

> She couldn't be intimate with her husband - or have the family she

longed for. Veasley's brave struggle to find a cure for a

painful problem.

> by Collier Cool

>

> In 1994, she had just finished her freshman year at the University

of Wisconsin. A bright, pretty girl with a full life,

was active in her church and loved to play soccer, volleyball, and

basketball. And yet, she often found herself falling into a

depression. had been diagnosed with an unusual medical

condition - a condition, she worried, that would prevent her from

ever having a boyfriend or a husband.

>

> The pain had come on suddenly. At her HMO, learned she had

vulvodynia, a disorder defined mostly by its symptoms--persistent

rawness, stinging, or irritation of the vulva (the skin folds around

the vagina).

>

> In Chris's case, the pain was so severe, she couldn't use tampons,

wear jeans or pantyhose, ride a bike, or even sit comfortably. The

cause is unknown, though researchers believe that nerve injury,

hypersensitivity to yeast, and genes may play a role. Amazingly, the

nurse-practitioner had been able to identify the problem right away--

usually, women have to see doctor after doctor in order to get a

diagnosis--but she also told that nothing would help.

>

> refused to accept that. She consulted several doctors, and

finally one diagnosed a serious vaginal infection, which, if it

hadn't caused the vulvodynia, was certainly making it worse. After

several months of treatment, including antibiotics and an

antidepressant for the pain, she got better ( " I could wear jeans

again, " recalls). But she still had excruciating pain at the

vaginal entrance. " Tampons were out, and I practically screamed

during gynecological exams, " she says.

>

> Other treatments-estrogen cream, biofeedback, pelvic exercises, a

special diet, vitamins -- offered no relief.

>

> But was still -- outgoing, eager to keep trying to find

help and to help others. In her sophomore year, she became a support

leader for the National Vulvodynia Association, a patient advocacy

group with 3,500 members. She also shared her problem with friends.

As it turned out, the classmate she most confided in was a guy--and

someone whose background was very different from her own. Melvin

Veasley grew up in Detroit's inner city, while came from a

middle-class family in Wisconsin. The pair quickly became

inseparable--in two years, they went from being friends to

becoming " best friends, to falling in love, " reports.

>

> In love--but uncertain about what kind of future they could have

together. After graduating in 1997, the couple moved to Baltimore

sot hat could work as a research assistant in the neurology

department at the Hopkins University. " I wanted to learn

everything I could about vulvodynia and to help advance understanding

of it " she says. Melvin, who had interned for a rental-car business

in college, became a manager in the company.

>

> By now, the two were deeply attached, and finally, in November

1998, after much prayer, Melvin made a big decision. He hoped that

would find a treatment for her condition, he explains,

but " even if we never had sexual intercourse, I loved and

wanted her to be my wife. " They married in July 2000.

>

> The couple tried to find ways to make each other happy in bed. But

their love life was more frustrating than pleasurable, says

Chris. " We couldn't have sex, and I didn't have much desire for

other intimate activities, because I was in constant fear they'd be

painful. " continued to look into every treatment she heard

about. But nothing helped her.

>

> After her marriage, though, felt desperate enough to consider

surgery--a procedure in which a doctor removes the sensitive tissue

near the vaginal opening. To it was a last resort. When she

was 15, she'd been in a car accident and had undergone several

operations and a very long recovery; she wasn't eager to repeat any

part of the experience. Worse, she knew the procedure didn't always

work. But her surgeon, P. Marvel, M.D., director of the

Center for Pelvic Pain at Greater Baltimore Medical Center, explained

that it had helped more than 75 percent of patients with Chris's kind

of vulvodynia. " It was the only thing I hadn't tried, " she says

now, " and it was the only way I'd be able to have a normal life, to

have a physical relationship with my husband, to become pregnant and

have a family. "

>

> She had the 90-minute procedure in September 2000, then suffered

through weeks of discomfort as the area healed. In October, Chris

began working with a sex therapist, who gave her dilators to

gradually stretch her vaginal opening. In November, four months

after their wedding, she and Melvin were able to make love for the

very first time.

>

> " How can I describe it? " says. She was nervous. But to her

amazement, there was almost no discomfort. " It was like beginning

our relationship all over again. "

>

> As for Melvin, " I was extremely happy, " he says simply.

>

> By Christmas, the couple had more to celebrate: was

pregnant. Daughter Grace was born in September 2001. " And as if

that wasn't enough, " says " my symptoms disappeared completely

after I gave birth. "

>

> But she hasn't given up the cause. " As long as I've known "

says Melvin, " she has been trying to help others. " She is now

director of the research and programs for the National Vuvlodynia

Association. " It's not just a job for me, " explains. " It's a

calling. I want to share my experiences with women who are going

through the same thing. "

>

> The Veasleys, who moved to Providence, Rhode Island, in 2003, when

Melvin was promoted to a new position, hope to have another child in

a year or two. Their lives, they feel are blessed. " Let me tell you

about an e-mail Melvin just sent from work, " says Chris. " He wrote

that he was thinking about Grace and me --and he was smiling. "

>

>

>

> Vulvodynia: how to find help

>

> Although millions of women suffer from this puzzling disorder,

until recently, there were few serious studies on it. Not

surprisingly, general OB-GYNs and family doctors often fail to

recognize the problem, mistakenly diagnosing a yeast infection. At

worst, doctors may tell patients the pain is in their head. And

about 40 percent of women with vulvodynia don't seek medical

attention at all, because they think there's is something " weird "

about their symptoms or aren't aware there are treatments that might

help.

>

> Finding the right therapy is a matter of trial and error, involving

various medications (including topical anesthetics, estrogen,

corticosteroids, antidepressants) and treatments (such as physical

therapy, biofeedback, surgery). Specialists say that a diet low in

the chemical oxalate may help (oxalates are found in certain fruits

and vegetables).

>

> For more information, contact the National Vulvodynia Association

at or www.nva.org, or write to P.O. Box 4491, Silver

Spring, MD 20914. The group offers the latest research and can also

recommend a knowledgeable OB-GYN in your area.

>