Wednesday, January 23, 2008

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!

56 comments:

Cate said...

Great post! We should all love and respect our vulvas. And thank you for making the distinction between vagina and vulva clear. I will be sure to use the proper terminology from now on (seriously).

Melissa said...

I agree, even with my OB I am not super-comfortable using the word vulva! We need a Vulva Monologues or something.

I do plan to teach A to use the proper terminology when she's old enough to understand the distinction. For now we are using "girl parts" and "boy parts." I wish there was a clinical term for the whole area--I guess genitals, maybe? It just seemed like a lot to grasp that the outside part is a vulva and the inside part is a vagina when she doesn't even know there is an inside part (yet!). It seems easier for boys somehow, but maybe that's my own cultural hangup.

charmedgirl said...

unfortunately, even through grad school for public health, the only opportunity i ever had to talk about the vulva was in a paper discussing the double standard in circumcision (male vs female). and NO ONE liked it, even the professor.

i also want to point out that even the very successful "vagina monologues" by eve ensler talked about the VULVA the whole time yet never said vulva, only vagina.

i think the whole thing just needs a good marketing-type campaign like, "any part of your va-jay-jay you can SEE is your VULVA!"

Aurelia said...

Thank you for posting this. I've definitely learned something today!

Cass said...

You rock...I guess since I have been your friend forever and there has been such stories as "the forked vulva" story by J, vulva really isn't that difficult for me to say. But I also spend a lot of time hearing stories about parents that tell their little girls they have "cootchy cats" , etc. I think it is important for people, young and old, to know the proper names for their the most important body parts. Thanks for standing up and taking charge for the Vulva...

Tingle said...

I've never minded the word vulva, really. In fact, vagina bothers me more than the word vulva.

But I am self-conscious of my vulva. Whenever I have to get examined down there, no matter by my regular doctor or someone new (and dealing with infertility, there've been a lot of people who have viewed my vulva) I wonder if they are disgusted or think I'm too hairy or too "lippy" or if I look like everyone else.

I have to say I didn't know I should be doing vulvar self-exams for cancer. This is helpful to know.

Thanks for being the champion of the vulva!

Lisa said...

There is someone (or more correctly a group) working on a IGAD (International Gyn Awareness Day), and they recently had a Vulva Awareness Day.

Please check it out

http://www.gain.org.au

Anonymous said...

I know this post is a bit old now, but just wanted to mention that the link you provided to the vulval self-exam on the Vulval Pain Society's website doesn't work any more. However, there's a diagram and instructions here. Otherwise, great post - the more of us speak out about these conditions, the better!

Anonymous said...

Gynaecological Awareness Information Network is a volunteer not for profit organisation raising awareness of gynaecological health in the community.

Every year on 1st April, GAIN Inc. celebrates Vulva Awareness Day. The 2009 event will be a Public Forum on HPV and Cervical Cancer. Venue: FJ Clark Lecture Theatre, QE11 Building, Sir Charles Gairdner Hospital, Nedlands Western Australia. Sat. 28th March 2009. 1pm - 5pm. for more details go to www.gain.org.au or tel:+ 618 (if outside Australia) 08 (Within Australia) 9340 1670

Viva La Vulva

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jc82307 said...

My mother just found out a few weeks ago that she has vulvar cancer. She started her chemo therapy yesterday and so far so good. I just wanted to say that I don't know personally how I would tell someone about having vulvar cancer if I had it but my mom on the other hand felt the same way you did. She doesn't know how to tell people that she has vulvar cancer. She said she would rather tell people she has ovarian, unterine, or cervical cancer then to tell them the truth. I have tried to learn about this since I found out she has it and it is amazing how little information there is about vulvar cancer. I never knew it existed until we found out she had it. I really wanted to find the cancer ribbon for it so that I can get it tattood on me for awareness for her and there isn't even a cancer ribbon for it. I was wondering if you have any information on it that would maybe be helpful? Thanks and great article.

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I would love to know the Color of ribbon for this type of cancer my girlfriend had this cancer and went through treatment for it I want to get this ribbon as a tattoo. To show my support my mother passed of cancer in 1991 at the age of 36 and I support all cancer survivors, may God bless all of you if you could please email me the Colorado I will be very happy to get the tattoo and support everybody my email is enoch08@Yahoo.com thank you so much Bert

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Wow, thanks so much for posting this. In researching what my condition could be I came upon Bartolin's abcess and periclitoral abscess among other things. What really got me was when I read through an old medical journal with case after case of women who had tumors on their clitoris, then had surgery only to die shortly afterward. I'm assuming they let the condition spiral out of control due to embarrassment and/or the doctors were clueless. Thanks for your post, I really appreciate it. We need to be more aware of our bodies.

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