‘You never know how strong you are, until being strong is your only choice’ – Bob Marley
There is very little knowledge around Vulvodynia. Pame Clynes, first advocate for this medical condition in Mexico and South America and founder of Peace with Pain, told VAGINA-NOMICS the story of her excruciating pain and how she learned how to live with it.
According to the National Vulvodynia Association, ‘Vulvodynia, or pain in the vulva, is a chronic condition characterized by burning, stinging and stabbing sensations. It has been described as “having acid poured on my skin” and “feeling a constant knife-like pain.” For some, the pain is constant and impacts every aspect of their lives, while others primarily have pain only with pressure or contact, such as during sexual intercourse or prolonged periods sitting’. Although you might have never heard of it, recent studiesexplain that the 16% of women in US suffer from this disease at some point of their lives, with the highest incident of symptoms between the ages of 18 and 25, regardless of race or ethnical background.
Pam spent two years searching for doctors and specialists in Mexico, with no luck: on the opposite, she was told that it was all in her head and there was nothing wrong with her. Things changed while watching an episode of Sex and the City, when Charlotte was diagnosed with Vulvodynia. ‘I remember all four of them laughing’ explains Pam, ‘not taking the matter seriously. And, the worst part was when Carrie asked Charlotte if it hurts, and she said no.’ After a deep research, Pam started to realise that she was ticking all the boxes. ‘I was extremely disappointed on how [the show] addressed a serious medical condition. Not only it hurts like hell, sometimes you can’t even sit down or wear jeans because anything that puts pressure on the vulvar area aggravates the pain’.
To get more answers, she flew to Florida where she met a gynaecologist specialised in vulvology and a team of pain management specialists. She immediately started a treatment but unfortunately, with such little knowledge of the condition, there is no guaranteed result yet and Pam is still struggling with the pain. Many women, the NVA confirms, have also to take antidepressants to deal with depression and anxiety which often accompany Vulvodynia.
Pam opened up about her sex life, describing it as challenging, but not impossible. ‘At the end of the day’, she reveals, ‘one only needs a loving, caring and patient partner. Communication is key’.
‘What I’ve come to realize from this challenging journey is that the more I try to hide it or resist it, the more I try to pretend that I’m ok, the worse it gets. So, that’s why I’m breaking the silence, I’m making peace with the pain. I know the pain is there, I acknowledge it, and I’m letting it go’.
A 2003 study confirms that the 60% of affected women consults three or more doctors before receiving the correct diagnose, while the 40% of women seeking treatment are never accurately diagnosed. Many women are treated for the wrong condition, often resulting in even more pain. Over $10 million have been invested by the NIH in new research of Vulvodynia in recent years, however we are still far from finding the right answers.
To help Pame Clynes to spread the word and raise awareness on Vulvodynia, you can follow her on Instagram under the name of @peacewithpain, visit her website peacewithpain.mx and check her interviews with The Vagina Blog, Buzzfeed and Pink Things Mag.