I remember being a pre-teen and experiencing horrible pain “down there” that I really did not know how to describe. That did not matter, however, because I was not going to tell anyone about it—ever! I had never heard anyone else talk about pain “down there” unless they were talking about “those women”—you know, the ones who did “bad things” and did not “take care of themselves”.
Now I was certainly not brought up in a house where talking about “down there” or sex was taboo, but regardless, my lips were sealed—until I was in my forties! Even then, I did not talk about it. Instead, I wrote about it—in my fibroLIFE Daily blog.
Fibro Secret three for me: Vulvodynia
Once again, I was hurting in a place and in a way that I was just not comfortable telling anyone, but I was determined to have some answers, so I turned to the only friend I could share such a secret with: Google. I entered the phrase “vulvar pain”, Google did what Google does, and once again Google showed me that I was not crazy and I was not alone. I was one of the unlucky ones experiencing Vulvodynia.
Excerpt Below From www.mayoclinic.com
Vulvodynia (vul-voe-DIN-e-uh) is chronic pain in the area around the opening of your vagina (vulva) for which there is no identifiable cause. The pain, burning or irritation associated with vulvodynia may make you so uncomfortable that sitting for long periods or having sex becomes unthinkable. The condition can go on for months or years.
If you have vulvodynia, don't let the absence of visible signs or embarrassment about discussing the symptoms keep you from seeking help. Treatment options are available to lessen your pain and discomfort.
The main vulvodynia symptom is pain in your genital area, which can be characterized by:
The pain you experience may be constant or occasional and can last for months or even years, but it can vanish as suddenly as it started. You may feel the pain in your entire vulvar area (generalized), or it may be localized to a certain area, such as the opening of your vagina
I had certainly learned about Vulvodynia in nursing school, but all I can imagine is I had not had any symptoms for a while at that time so I did not put two and two together. In fact, I do not think I ever came across the term again until Google showed me. Also, obviously the symptoms listed could be from other things, such as a Urinary Tract Infection, a Yeast Infection, etc. I had always spoken up when I felt the symptoms fit a UTI, and once I was older, I had sought care also when the symptoms fit a Yeast Infection.
Rarely did I actually have a UTI, however. Nor do I ever recall being diagnosed with and/or treated for an actual Yeast Infection. I do know I was given antibiotics for a UTI several times since obviously “something was going on” in spite of the negative test results. As I got older and had to see the doctor about so many symptoms which, once I was diagnosed, almost always ended up being attributed to my Fibromyalgia, I just dealt with the symptoms myself rather than discuss yet another thing with the doctor.
Vulvodynia, however, is not always as simple as UTI-type symptoms, and at times it certainly was not for me. I would have times, in public, such as when giving a lecture or talking to my mother-in-law, when suddenly I would have a sharp, spasmodic, burning pain just hit me “down there” from out of the blue. Over the years, I have become pretty good at not showing just how much pain I am experiencing, but I have never learned to totally cover this one up. When whoever I was with would see the look on my face and say, “Oh my, are you okay? What happened?” I would sort of smile and laugh it off with something like, “Oh just one of the many odd fibro-spasms I have to live with.” Then I would find an excuse to be by myself to deal with the pain as quickly as possible without being too obvious that the pain was “down there”. That is the kind of day I was having when I finally turned to my friend Google.
In the years since that day, my friend Google and I check out the phrase “Fibromyalgia and Vulvodynia” every so often. Each time, we come across more and more information like the following excerpts:
One of the most painful effects that sometimes happens in women who have fibromyalgia is a disorder known as vulvodynia.
Women with vulvodynia are 2 to 3 times more likely than other women to suffer from other chronic pain conditions, such as IC, IBS, or fibromyalgia, according to results from a meta-analysis of studies pertaining to that issue, published in the July issue of Obstetrics & Gynecology
The examples could go on and on, but you get the picture: More and more, Vulvodynia is being linked with Fibromyalgia. Apparently, more and more women are speaking up about this Fibro Secret of having pain “down there”. I am glad to be one of them, especially if it will help someone else. But for those of you still keeping the secret, I do not want you to feel badly. I wrote about this for the first time probably four years ago. I said the word out loud in a conversation with my husband for the very first time just this week. I understand how hard it can be to share your Fibro Secrets, but I know that if you really need to, you can do it. Sharing an article like this or information from online or a pamphlet might be a good way to start.