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Betrayed by her own body - magazine article (Christin Veasley's story)

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The surgery had was a

Vestibulectomy. It is done for a condition called Vestibulitis. This surgery

can be very successful - I think the success rate is around 80%. Also the

surgery she had done was performed in 2000 and talks about weeks of a painful

recovery. This is no longer true - it is a simple surgery, with invisible

stitches and only a few days that are slightly uncomfortable. This type of

treatment has come a long way since 2000.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of Chelle

Sent: Tuesday, May 06, 2008 2:24 PM

To: VulvarDisorders

Subject: Betrayed by her own body - magazine article (Christin

Veasley's story)

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, 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, " Chris

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.

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No problem, nne, glad you found it helpful! ~Chellemillburytimes wrote: Chelle – thank you for posting this – it is such a great story that I posted it on the pudendal site. nne

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