Hi Folks,
I apologize for not posting in my blog over the last 6 months. There have definitely been more interesting and exciting news coming from a vulva near you and will be back up and posting within the week. Please message me if you have any topics you want me to address or if you wanna chat. vulvodynia.monoblog@gmail.com
Mandy
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).
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:
https://vulvodyniamonoblog.wordpress.com/
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.
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?
Recently a friend sent me this link by a Chicago based writer who features the six most prominent chronic pain conditions women suffer from. Combined they affect 50 million women!!! Read more for yourselves!!
http://wellcommunitychicago.org/articles/trends-news/life-pain-six-part-series-chronic-pain
Below is the stats for my blog highlighting all the search terms people entered and ended up stumbling upon my Vulvodynia Monoblog. Pretty fascinating and a little scary too.
My favorites are: wrinkles in my vagina, caught panty crotch and crotchless granny panti?!!
What are your favorites?
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Please read the email below that I received for the NVA for enrollment in their new treatment registries around the country. I really encourage everyone to participate in this- as many of you know, finding a good and knowledgeable Doctor who treats Vulvodynia is hard to come by. I made a decision to not move to one of these cities on the targeted registry because I could not find a specialist I approved of… Hopefully you all will help pave the way for others…
Email begins from chris@nva.org :
We Need Your Help to Study the Effectiveness of Vulvodynia Treatments
Vulvodynia Treatment Registry to Enroll 400 Women in 2012
Due to a prior lack of research, women with vulvodynia have almost no scientific information to help guide them in making important decisions about their medical treatment. Although medical professionals report utilizing as many as 30 different therapies to manage vulvodynia symptoms, currently, women can only determine treatment effectiveness through a trial-and-error process that can take many months.
Simply put, this is unacceptable and is the reason why NVA funded the National Vulvodynia Treatment Outcomes Registry. Women who participate in this important project are followed at one of eight Registry sites (see below) for one year after initiating vulvodynia treatment. Participation is voluntary, does not include any experimentation and does not change women’s treatment recommendations. In addition to generating vital data on the effectiveness of treatments for different vulvodynia subtypes, collected information will help to identify factors that can predict treatment success and guide the development of large controlled trials of promising therapies. Additionally, we recently expanded the Registry project to include postmenopausal women, since this group is routinely excluded from research studies, as well as the collection of DNA samples, which will be used for genetic analyses.
Over the next 12 months, Investigators from nine states will enroll an additional 400 women in the Registry project. To speak to the Registry’s Research Coordinator Katy Capote about participating at any of the sites, please call 407-303-2721 or send an email to katerina.capote@flhosp.org. To read more about the project, including information on the Registry Investigators, please visit NVA’s web site. Medical professionals interested in obtaining Registry flyers to distribute to their patients should also contact Ms. Capote.
Registry sites are located in:
Arkansas (Little Rock)
California (Los Angeles)
Colorado (Denver)
Florida (Fort Lauderdale – coming soon)
Florida (Orlando)
Maryland (Annapolis)
New York (New York City – coming soon)
Ohio (Akron)
Pennsylvania (Pittsburgh – coming soon)
Washington DC
Email ends.
For most of my life I have reacted to pain in a similar way- I shake it off. Didn’t matter if it was a stubbed toe, to running into a wall or falling down. It never really phased me.
I have taken this thinking into my adult life and often end up with massive bruises that I don’t remember or know the cause of and other clumsy casualties. So, when I started having symptoms of Vulvodynia- it must have been extreme in order for me to feel and acknowledge the pain.
Yesterday, I got my monthly massage (which I started doing 6 months ago). It has been a good way to force myself to destress from work and do something good for myself. Most months I have come out of the session feeling amazing and relaxed. Yesterday, I just felt like an 80-year-old lady.
More than usual my hips and pelvic area were triggered and overwhelmed by overactive nerves and pain. Most of the time I am thinking- rub my back but this time I was thinking- rub my butt. It’s tough to acknowledge this as a 28 year old but the last 2 years of work and doctors galore has taken a major toll on my body. I am exhausted, constantly in pain and often anything I do- my nerves flare up and my body get’s angry.
What I am learning- is that I cannot just walk around shaking off every bruise and bump I have. Some periods of my life will be harder than others and I have to respect and acknowledge that. So here are some helpful things I learned to do:
Yoga stretches: happy baby, cobra and pigeon
Ice packs!
Walks
Crafts and books to take my mind off things
Play with friends!
http://www.nva.org/survey.html
Take a second and fill out this new survey for women with Vulvodynia and coexisting conditions!
When I first started experiencing the symptoms of Vulvodynia I felt defeated, scared, alone, angry and forever independent. Often in my blog I make it look so easy, so funny but it’s more complicated than that.
A year after the symptoms started, I was finally diagnosed and however scary the diagnosis- it was better than not knowing and I could figure out what to do next.
For those first 3 years I was terrified to interact with people, give off any attraction or even consider intimacy possible. I was enraged and violated when people hit on me or overcome with pain and resentment when friends shared their latest conquest.
I have made many choices to deal with the physical and emotional pain that comes with Vulvodynia and I decided a few years ago to write down my feelings about sexuality and chronic pelvic pain (however, I believe there is more to them than Vulvodynia)
My Sexuality is:
My Sexuality is not:
I would like my sexuality to be:
As hard as the battle is on certain days, if someone asked me today how Vulvodynia affects my sexuality- I would say, “It made me face it, it made me acknowledge it and honestly, I feel like I have more connection with it than I did before vulvodynia. It threw it in my face and made me deal”.
I am grateful for this outlook and understanding of how life and sex can still exist with Vulvodynia and I was lucky after the first few years to have a relationship where I was supported and understood. It made me realize- it’s not gone just different and sometimes I almost think better.
To anyone else out there with Vulvodynia reading- some days are better than others, but it’s gonna be o.k.
Vulvodynia Monoblog 