The Vulvar Underground

Okay, I've teased you long enough, and the payoff probably isn't going to be so great. But I have a few things to say about vulvas, so here goes.

If you are a devoted reader of my blog, you may remember this post, where I posted my sorry list of ailments over the years, most of them down under. Other than the loss of my daughter, by far the worst, most psychologically damaging health issue I've had is the "periclitoral abscess." Yep, an abscess right next to my clitoris. This ailment, which arose for no apparent reason, introduced me to the mysterious world of the vulva, a world with all sorts of different parts, all with their own Latin names. I could (and maybe will, for therapeutic purposes) write entire posts about the multiple traumas that went along with the abscess, many at the hands of medical "professionals." But the purpose of this post is different, and that is, to talk about the general shame involved in vulvar disorders and, indeed, in just saying the word "vulva."

For years, I had to see a doctor regularly for this issue, which wasn't so bad because he was actually a vulvo-vaginal specialist, and he was in his 60s, so one knew that he was pretty unflappable, so to speak. He also had fingers like tree trunks, but that's beside the point. During this time I would also have to go see general practitioners for the regular stuff, and was battling infertility so I was also seeing a rotating crop of four REs. Since I was either on medication or having surgery or both for the vulvar abscess, I would have to tell them about it, and the word "vulva" seemed to stick in my throat every time (that sounds kinda dirty, doesn't it?) Moreover, it also seemed to kind of embarrass even the regular doctors. Is it just me, or do people have trouble with the word "vulva"?

During the worst of it, I was googling for whatever information I could find on this, partly for knowledge and partly because I just wanted to know that I wasn't the only freak out there who was dealing with this. I didn't find much about women with my particular issue, but I did end up reading several sites that dealt with women's personal experiences with vulvar cancer. One night, as I was reading about the shame so many other women had about this particular kind of cancer, I just became incredibly angry that we feel so embarrassed and alone whenever anything is wrong with this part of our bodies. I am angry that just saying the word "vulva" makes most women giggle with embarrassment or look completely mortified. I'm angry that this part of our body is not given the respect it deserves.

There are, in fact, women who don't even really know what the vulva is. To be clear, it is the mons pubis (the soft, cushiony part where your pubic hair starts), the labia majora (outer lips), labia minora (inner lips), the clitoris, and the opening to the vagina. Here's a good link with a diagram and also instructions on how to do a self-exam for cancer.

It irritates me to no end when I hear people refer to this part of the body as "the vagina." The vagina is completely separate and different from the vulva, but I think people are just more comfortable saying the word "vagina." The vulva is not the vagina's ugly stepsister--it is a world unto its own! It's not right to reduce our sex organs to the just the part that gives men the most pleasure. Especially when the organ that generally gives us the most pleasure doesn't even have a uniform pronunciation.

It seems that for some reason, referring to the vulva is difficult for women (and men). When it comes to sex, that can cause all kinds of problems, from simple miscommunication to anorgasmia. When it comes to health, it can mean that women may not pay much attention to what's going on "down there" and/or postpone seeing a doctor if there is something wrong. And that can kill you!

Fifty years ago, breasts were treated in much the same way. It took some brave women like Betty Ford to "come out" about breast cancer and some purposeful advocacy to get to the point where breast cancer can be discussed openly (here's a good link on the history of breast cancer advocacy). Now, as we know, it's kind of America's sweetheart of cancer awareness (which involves a whole other set of complicated issues). I wish the same thing would happen for the poor old neglected vulva. Can you imagine a "Vulvar Cancer Awareness Month," complete with it's own little ribbon (what color? Red?) Or a famous woman coming out and saying "I have vulvar cancer, and I had my clitoris and labia removed to save my life?"Or seeing special reports on the six o'clock news featuring a little graphic of a woman feeling up her vulva for lumps (her hand strategically placed over her clitoris, of course)?

And let's not even get started on research efforts that might find other ways to cure vulvar cancer, treatments that could eliminate the horrific "standard of care" which is usually hacking off the clitoris, labia, and everything else in the area (although unfortunately, this is still the primary treatment for many cancers, including breast). I know that breast cancer is many times more common than vulvar cancer, but I still wish that women didn't feel ashamed of either one. I imagine that some men (by that I mean the ones who think about stuff other than Guitar Hero and sports and all the stupid shit men usually spend their time thinking about) feel similarly about the testicular cancer/penile cancer double standard...but I have to pick my battles and since I don't have testicles or a penis, the vulva issue takes top billing for me.

So that's how I feel about vulvas. I've never really known what to do with these thoughts, so writing this post felt really great. I know I'm not the person to take up the mantle of vulvar cancer rights, but in my own small ways I try to enlighten at least a few people here and there by sharing my story when it seems appropriate, by trying not to feel or seem embarrassed by saying the word or relating my medical history, and now, by writing this for you all. I'd love to hear what you have to say about it!