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Look into the eyes of a woman with vulvodynia and you'll see your mother, your daughter, your sister, your friend. Every day, millions of women of all ages and races worldwide are dealing with this mysterious condition that causes chronic vulvar pain. Sadly, to date, there is no definitive cure.
Look closer into the eyes of a woman with vulvodynia and you'll also see the shining rays of hope. Hope that there will one day be a cure that will end her suffering and allow her to resume a normal life again, pain free.
We're honored to present the following stories of courageous women with vulvodynia who have chosen to manage their pain, instead of allowing their pain to manage them. As you read their stories, we hope you'll see someone you love reflected in each one and do your best to help us find a cure.
Renee
Connecticut
Friend
"A doctor can make a REAL difference by going the extra mile!"
Imagine the devastation of being a twenty-two year old woman who's never had a pleasurable experience with sexual intercourse, and uses words such as "excruciatingly painful" and "virtually impossible" to describe such encounters. Imagine not being able to share the most intimate expression of love with your husband the way you'd always hoped. Meet Renee, a young woman, just out of college, beginning her married life, with vulvar vestibulitis syndrome.
Renee first began having symptoms in college, two years ago, and relied on her university health center for help. She was tested for all kinds of infections, including HIV and syphilis, which was embarrassing and confusing. After various treatments with no improvement in her condition, she found a local gynecologist, who diagnosed her right away after an exam. She subsequently referred Renee to a specialist and took the time to research vulvodynia and educate Renee. Through the compassion, care and support of these two physicians, Renee now has a definitive diagnosis and can move forward with treatment options.
One thing that Renee hopes for someday:
"Certainly pain free intercourse with my husband is my highest priority, but I'd also like to ride my bike again which I used to love doing regularly."
Jane
Wisconsin
Daughter
"I give vulvodynia one corner of my life, but not the whole!"
Ten years ago while on a business trip, Jane unexpectedly developed a bright, red rash that extended down her thighs. She thought a little hydrocortisone cream from the drugstore would clear the rash up in a matter of days. Little did she know, this was her introduction to vulvodynia and a journey that would initially take her to eight doctors in seven months, searching for a diagnosis.
"The hardest thing was to approach my condition rationally because I needed doctors to take me seriously. What I really wanted to do was SCREAM or CRY out of frustration and utter desperation. Vulvodynia impacts every aspect of a woman's life, robbing her and her family. The isolation you feel is devastating. I have worked very hard to give vulvodynia only a corner of my life. I acknowledge it, but I don't let it take over! I rely heavily on the support group for sympathy and am eternally grateful to my doctor who has worked tirelessly and patiently to help me find solutions. He has cared , and listened to me. We are partners in my care."
One thing that Jane hopes for someday:
"At this point, I can't imagine my life without vulvodynia. I have come such a long way and feel terrific much of the time. That said, I am not pain free by any means. I am thankful that I can lead a full and active life, even with vulvodynia. In my wildest dreams, I would just like to wake up one morning and not have vulvodynia be the first thing that pops into my head!"
Marjorie
Virginia
Mother
"This may sound like a crazy disease, but it is very real."
When Marjorie was in her mid-twenties, she started experiencing a constant burning sensation and was treated for a yeast infection, but the symptoms continued. Her pain intensified and over the course of the next 8 years, she saw just as many doctors, who were not able to give her a correct diagnosis. Her job as a busy telecommunications executive put her in a high-pressure work environment, where she would be forced to try and "tough it out" during the day so that she could do her job. After work, she was barely able to walk to her car, and would have to spend the rest of the evening on her back to get relief from her intense pain.
"Before my diagnosis and treatment, this disease made me irritable because I was always in pain. Dealing with chronic pain on a regular basis can be absolutely draining. I was ashamed and often felt awkward discussing my condition with my family because I thought they believed I was crazy. Often times, I felt I actually might be because no one could tell me what was causing this horrible pain."
One thing that Marjorie hopes for someday:
"My greatest hope is that medicine/research will advance quickly so my 2 young daughters will not ever suffer with this condition as I did."
Donna
Ohio
Sister
"I find strength and hope by helping others."
Eighteen years ago, in her early twenties, Donna had her first experience with vulvodynia during intercourse, which always resulted in an intense burning pain. For the next fifteen years, Donna saw a number of doctors who could give her no definitive answers and were often impatient when the symptoms didn't go away. "I was so ashamed because none of my friends were experiencing anything like I was. I felt like such a freak when I just wanted to be normal."
Three years ago, in her late thirties, Donna's pain became constant, including a strong burning sensation and intense pain to the touch. Sitting became excruciating, wearing pants and undergarments was very painful and the thought of intercourse was not even an option. "The constant pain gradually wore me down and I actually thought of suicide. This condition made me question my value as a woman and I saw no end in sight to the pain. I wasn't sure I wanted to live if I had to deal with this for the rest of my life."
A chance conversation with a friend, who was also a vulvodynia sufferer but had not shared her condition with Donna, literally changed her life. "My friend's bravery to share something so personal was such a gift because it led me to a knowledgeable doctor, who finally gave me a definitive diagnosis of vulvodynia, a treatment plan, and hope."
"Finding a doctor who could tell me what was wrong with me was one of the most powerful experiences of my life because I knew I wasn't crazy and my pain was REAL. From that moment forward, I decided to share my story with others as often as I could because I wanted to give other women the same gift my friend gave me. I subsequently became involved with the NVA as the Support Contact for my area and it has been incredibly rewarding! I find great strength by helping other women!"
One thing that Donna hopes for someday:
"This may sound like a simple thing, but I'd just like to get dressed in the morning and not agonize over my choice of an outfit because of the pain it will cause me later in the day."
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