This is such an important submission by Pame Clynes about vulvodynia. Vulvodynia is chronic vulvar pain without an identifiable cause. The location, constancy and severity of the pain vary among sufferers. Some women experience pain in only one area of the vulva, while others experience pain in multiple areas. The most commonly reported symptom is burning, but women’s descriptions of the pain vary. One woman reported her pain felt like “acid being poured on my skin,” while another described it as “constant knife-like pain.”
This is Pam\’s story of how she suffers from an excruciating chronic pain in her vagina:
You never know how strong you are, until being strong is your only choice. Wonderful quote by the greatest Bob Marley, and words of wisdom which resonate with me and with my pain.
It all started 5 years ago when I began with awful symptoms of an unexplained chronic pain/burn inside my vagina. At first I thought it was a yeast infection, but after several studies
that indicated there was no bacteria or anything that suggested a normal infection, I began to worry deeply. At one point, a very well-known gynecologist in Mexico City (my hometown), told me that it was all in my head and that there was nothing wrong with me. Ok, so now I’m going crazy?, I said.
After two years searching for doctors and specialists in Mexico, after spending all this energy, time and money, I gave up completely. Pretty much hating everything and everyone in my life. I swear to god that if one more person told me if I’ve tried alternative medicine or essential oils, I was going to hunt them down. It’s really a no brainer, of course I’ve tried EVERYTHING!
One day I was watching an episode of Sex and The City where I heard for the first time the term Vulvodynia. Basically, in that episode Charlotte was “diagnosed” with it, and she mentioned about it at brunch with the girls. I remember all four of them laughing, not taking the matter seriously. And, the worst part was when Carrie asked Charlotte if it hurts, and she said no. I have nothing against the show, in fact I’m a huge fan, but I was extremely disappointed on how they 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.
When I googled about Vulvodynia and started a profound research, it was like seeing the light at the end of the tunnel. So, what is it exactly? To put it in simple words its vulvar chronic pain with no known cause. Everything made sense, and it was such a relief to know that I wasn’t crazy and that there are in fact doctors who knew about it, specialists that are investigating on how to find better and new treatments. However, these special people were not in Mexico at the time. Luckily I was able to go to Florida and meet with incredible physicians. A gynecologist specialized in vulvology and a team of pain management specialists as well. I started my treatment immediately with hope and positive vibes, even though from the beginning they told me that there are no guarantees. Not every treatment works the same, every woman is different, every body functions different. It might not work at all for some women. In my case some worked and some didn’t. It’s been 5 years and I’m still struggling with the pain, sometimes it gets better and some days I can’t even get out of bed.
What keeps me going is the fact that I have more information now, and the fact that there are many women suffering from this as well. I’m not alone. I’m still seeing the doctors in Miami and I found a gynecologist in Monterrey, Mexico. I also work with an acupuncturist, and I’ve tried physiotherapy. There are certain tricks and home made hacks that help me at rough times, like using coconut oil as a personal lubricant. Hot or cold patches help to soothed the area and keep your mind of the pain. Essential oils work sometimes, magnesium for muscle spams is the best and eating an irritant free diet is very helpful. Breaking up with sugar is something to really think about.
Sex can be challenging, I’m not going to lie, but it’s not impossible. At the end of the day, one only needs a loving, caring and patient partner. Communication is key. If there is one thing that I’ve learned is that NO is NO. We all know that there are other ways to give and receive pleasure. Like I said above, organic coconut oil is the best lubricant.
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.
I can proudly say that I’m the first advocate for Vulvodynia in Mexico and Southamerica. I started an Instagram account to raise awareness, to let people know that this is real and a lot of girls and women are battling with it. I invite you to follow my story through @peacewithpain, a safe platform that aims to support other women, even if they only need to speak up and be heard.
Important things to know about Vulvodynia
1. It could happen to any woman, at any age
2. There’s no surefire cure for it
3. It is NOT a sexually transmitted disease
4. One of the main possible causes includes nerve injury
5. A gynecologist is not the only specialist that can treat Vulvodynia. Neurologists, pain
management specialists and physical therapist can also help.
6. The symptoms include burning, stinging, rawness and throbbing inside the vagina. Most of us
describe it as acid being poured in our vaginas. Ouch, right?
7. You are not alone!