Vulvodynia is a cause both near and dear to me as a sufferer for the past 5 years. You might be wondering, “What is vulvodynia?”. I wanted to share with you information on vulvodynia and how it has affected my life. This isn’t easy for me at all, but I feel like it’s something I need to do. If it helps even just one person, it will be worth it. I am tired of suffering in silence.
This week, I will posting info on vulvodynia including what it is, treatments, vulvodynia causes and I will be sharing my story. It’s going to be an emotional week for me and I hope that I can shed some light on this terrible condition that affects millions of women worldwide. Most doctors are clueless…I speak from experience here.
What is Vulvodynia
So what is vulvodynia? It’s defined by the NVA (National Vulvodynia Association) as “chronic vulvar pain without an unidentifiable cause”. Some women feel it only in one area on their vulva while others feel it in multiple areas. For me personally, my pain “moves” on a daily basis. It can be in one spot one day and then another the next.
The symptoms vary as well. For instance sufferers can experience sensations of:
- Stabbing or Knife Like Pains
- Shooting pains
- And many, many more
I have experienced all of these. The burning to me is the worst. It’s unbearable. Some women describe it like acid being poured on the skin. I know too well what they mean. Pain can be constant or intermittent. I have had pain every day since it began for me on December 11, 2005. Some days are bad where its constant and strong all day and other days I may only feel a twinge here and there. Those are the “good days”.
There’s actually two types of vulvodynia: Vulvar Vestibulitis Syndrome (VVS) and Generalized Vulvodynia (GV). They can co-exist together. I have both of them.
VVS is pain on the vestibule, the area surrounding the opening of the vagina. It occurs during or after pressure/touch is applied to the vestibule like with sexual intercourse, tampon insertion, a gynecologic examination, prolonged sitting and/or wearing fitted pants.
GV is pain that occurs spontaneously and is relatively constant, but there can be some periods of symptom relief. This means the pain occurs for no darn reason at all. For me, I have begun to notice triggers like stress, sitting too long, hormones, etc. Some women experience pain in a specific area while others experience pain in multiple areas. I feel pain everywhere from the labia, clitoris (the worst pain ever!), perineum, and even my inner thighs. This is a condition I wouldn’t wish on anyone.
It affects women of all age groups and races. According to an NIH-funded Harvard study, almost 16% of US women suffer from vulvodynia at some point during their lives, with more than 90% reporting ongoing pain for many years. Approximately six million women currently suffer from vulvodynia. Staggering numbers isn’t it? You would think that there would be more help for women like me, but sadly there isn’t. I can’t wait to share my story with all of you.
2018 update: I’m still dealing with vulvodynia on a daily basis. I refer to it as pelvic pain so people can better understand what region of the body I’m talking about. I’m finding more people have at least of heard of it now. There are support groups on Facebook and I’ve seen several articles in large publications talking about vulvodynia. I even found a pelvic floor physiotherapist who is in my town and I’ve been seeing her weekly.
Read the rest of my vulvodynia posts.
Have you heard of vulvodynia before?