Very exciting! The NVA is looking for positive testimonials from women with Vulvodynia!!

The email reads:

 The NVA is looking for women who’d like to share their stories in future issues of our printed newsletter, NVA News. There are many different types of vulvodynia and no one treatment(s) works equally well for all women. As such, rather than detailing the specifics of the treatment(s) received, we wish to focus more generally on how receiving vulvodynia treatment has impacted women’s health and quality of life. Our goal in sharing these testimonials is to provide hope and encouragement to women during their treatment process.  

 

Please limit your response (max of 750 words) to one or more of the following topics.  

 

How has your journey in receiving treatment for vulvodynia improved your physical and emotional health, your overall quality of life and/or relationships with your partner, family members and friends?

 

What have you learned (in general and about yourself) through this process?

 

If your vulvar pain is not completely resolved with treatment, what coping mechanisms do you utilize to remain hopeful?

 

Are there any unexpected positives that you’ve gleaned through your journey?

 

Based on your experiences, what helpful/hopeful advice would you give to a woman who is newly diagnosed with vulvodynia and starting a treatment regimen?

 

Please send your submission to Cristina Shea by e-mail (cshea@nva.org).

 

In your email, please state how you would like to be identified in the newsletter (e.g., anonymous, full name, first name and last initial only). 

 

If you are willing to have your picture printed along with your story, please attach a high-quality photo of yourself to the e-mail.   

 

End email.

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Here is my submission:

Based on your experiences, what helpful/hopeful advice would you give to a woman who is newly diagnosed with vulvodynia and starting a treatment regimen?

In May of 2007 I started experiencing vulvar pain. For the next year I struggled with the itchy, burny feeling and the fear of the unknown. In May of 2008, I was finally diagnosed. What a relief! As scary as Vulvodynia can seem, not knowing was worse.

 I have tried multiple treatments, concoctions and procedures. I often feel like the expert in Vulvodynia and I have remained hopeful for many reasons. Below are just a few:

• I have the best doctors in the country at the Drexel Sexual and Pelvic Health Institute in Philadelphia. They not only treat my vulva, they treat my soul. They encourage me; they find excitement in healing women and take the time to discuss my care plan in great detail. Plus- they have sign’s everywhere that say- “women after 50 can have sex!” I am not anywhere close to 50 but honestly- you’ve gotta love the passion.
• I write a blog titled, Vulvodynia Monoblog, for other women out there like me. I get to educate my friends and peers and poke fun of the craziness of our condition.

https://vulvodyniamonoblog.wordpress.com/

• Talk, talk and talk! As hard as this part may seem, it makes all the difference. There is no shame in our condition and there are good people out there.
• If you feel burned by a current or past partner because of your condition- please know- many of us have experienced this, but there are just as many good ones out there. Take control when you are ready and set some boundaries. A good boundary I have established with past partners is, “don’t make me be the only one who initiates sex, however, if I say no today please respect that and try again tomorrow.”
• Find the silly in all your treatments and laugh as much as you can. I have had Botox injections in my pelvic floor muscles, injections in my vulva, cream after cream and with every new treatment- I find pride in how much I can endure and the crazy lengths I go to. I am often characterized as the silliest patient. I frequently ask my doctors questions like, “if you are going to give me amitriptyline cream, does that mean my vulva is gonna get fat?”  (note, amitriptyline is an infamous weight gain drug)
• Grab your crotch in public as much as you need. If it burns and itches, scratch it, or wear awesome pants and skirts with big pockets!
• Take care of yourself and listen to your body. It’s ok to take time to cope with the diagnosis. It’s ok to take a break from dating- or not! It’s ok to cry, to find a support group, to feel like your life is over, to feel lonely, to mourn your sexuality and to eventually find your own way of accepting.

 

It has taken me quite a few years to find the humor and acceptance of my condition and in some ways, it has made me a much better woman. We are often taught to put others first at our own expense as women, to not assert our needs, to cower in the corners- this was my chance to defy that upbringing. My change to take control, to respect my body, to be proud of my body and to find my sexuality and like I said, I am definitely a much better woman for it.

Please fill out this questionnaire if you are a woman with Vulvodynia! It’s painless and confidential!!

Hi Vulvodynia Friends,

Please take a second to fill out the questionnaire below to help my friend with her research and paper about women with Vulvodynia. Too many of us have this condition for people not to know. It is painless (no pun intended) and confidential. Just take a few minutes in the next 3-5 days and email her the answers directly.

hooper.meghan@gmail.com

Thx,

Mandy

Women with Vulvodynia Ethnography:  Preliminary Questions

Meghan Hooper, April 2, 2012

 

I am taking an anthropology course called Stigma, which goes into Irving Goffman’s stigma theory and various stigmatized groups in popular culture.  For a final project we are required to write an ethnography of the stigmatized group of our choice.  I have chosen to do my project on women with Vulvodynia because I would like to delve deep into what it must feel like to have an illness not widely acknowledged, or accepted for that matter, by society.  I know of Vulvodynia and the many challenges that those diagnosed with it face from my dear friend, Mandy.  Should you choose to participate, your privacy will remain an utmost priority and the information you provide will only be used to hopefully enlighten others on Vulvodynia and therefore reduce the stigma attached to such an illness.  I will be grateful for any information you would like to share.

 

Many thanks, Meghan

 

Thank you in advance for taking the time to answer these questions! 

1. How many years have you been suffering from Vulvodynia?

2. How many years did you suffer from symptoms prior to getting diagnosed?

3. If you were misdiagnosed, what are some examples of false diagnoses that were given?

4. In what ways has having Vulvodynia most profoundly affected your life?

5. In what ways has having Vulvodynia affected your personal relationships (i.e. partners, friends, family, colleagues)?

6. Have you been able to conduct sexual relationships?

7. What does it feel like to suffer from an illness considered a “medical mystery”, one that very few people have ever heard of?

8. Have you been able to find adequate support?  If so, who and/or what entities do you consider a part of your support network?

9. Have you been able to effectively communicate with others regarding Vulvodynia so that they might understand and empathize with what you are going through?

10.  What have you found most frustrating in regards to people not understanding what you are going through?

11. What are your most common symptoms and how persistent are they (i.e. do they tend to be intermittent or cyclical or do they not go away at all)? Do you experience pain daily or only during intercourse?

12. What treatments have you tried to alleviate your symptoms?

13. What treatments have you found to actually help with symptoms?

14. Are there any other illnesses you suffer from that you connect to Vulvodynia?

15. Please list any adjectives that might describe how you feel on a day to day basis that you would attribute to Vulvodynia.

15. Do you feel that progress is being made in the U.S. to further understand and treat Vulvodynia?

16. Have you felt stigmatized by society or those in your inner circle because of having Vulvodynia?

17. How would you define your sexuality before and after having Vulvodynia?

18. Did you experience symptoms with your first sexual experience or later on? How did this have a bearing on your emotional state at the time and at present?