2008 Year of Disappointment

Executive Director of PhillyGayCalendar

So it’s 2009. Congratulations if you’ve made it this far in this climate and were still able to celebrate even if the merriment had to be somewhat fabricated. Personally, I felt none of it real or not. The gooey Christmas feelings and the New Year’s Eve elation of festivity were all completely wasted on me.

You see I’ve been sick for the better part of this last year. What’s my ailment? Not general malaise from a democratic election lost for my candidate, but I have a sick vagina and my New Year’s resolution is talk more about it. So here goes.

Telling people that I have a sick vagina sounds far more interesting than the truth. I suffer from endometriosis. If you haven’t heard of it you probably are very lucky or you are male as it is the reportedly most common gynecological non-sexual disease affecting 5.5 million women in North America.

Now, I did nothing to get endometriosis. It’s not my fault. It’s not contagious. Endometriosis is not a sexually transmitted disease. It’s simply the presence of uterine lining in other pelvic organs especially the ovaries, characterized by cyst formations, adhesions and menstrual pains. That’s Webster’s online definition. Seems trivial and if you took a few Midol you’d be fine, right? As my doctor likes to point out, some people have loads of this disease in their snatch and feel nothing; some can have a smidge of this disease and be unable to move their bodies for days at a time.

What does it feel like to me?
It hits you as if you’ve been shanked in prison while you were minding your own business. After you find out you have it, you feel a slow dying vaginal death sentence. There’s anxiety (on top of my already angst-y self) from the fact that you feel like a cruel sniper is watching you in a scope ready to fire at every minute of the day. Movement is painful. Anything you do that stirs the abdomen is painful.

I’ve missed Queer Philadelphia in 2008 so much from this endometriosis sniper disease. It’s kept me from my work and my life in general. I’ve been on steady painkillers for months, which is just a band-aid for the pain and if you’re unlucky you’ll end up with a nice little dependency, which can be treated in an easier fashion than endometriosis it would seem. I’d much prefer a trip to Betty Ford over a crampy sniper any day of the week.

I’ve watched a lot of TV in 2008. The top of my list being, reality TV, which has turned into my own zoo of personal relationships since I suck at being a friend right now because of my unreliable health.

As Susanna Kaysen’s writes in, The Camera My Mother Gave Me, women often lose out on relationships and often endometriosis is a deal breaker for romance itself.

And there is no cure for endometriosis. I guess because it only plagues women, while Flomax is wasted on the male so he can piss more powerfully and also Viagra too because a hard dick will always be more important than my pelvic pain, especially since my pain doesn’t get pierced by the manufactured blue pill erection.

Forty percent of women with endometriosis are unable to have children. It is one of the top three causes of infertility in women.

I’ve been told by countless doctors that there is no cure and that there is no explanation of why women get endometriosis. So I had surgery in December. There are about three ways to treat endometriosis.

You can drug yourself up and walk through life like a zombie is the first option. Many don’t even know what is happening to them and many women don’t even get gynecological exams. They just walk through life thinking they are supposed to feel the pain. My mother was one of these women. She was in constant chronic pain and would never see a doctor. I can recall, as a child, watching her writhe on the bed in pain—I’m now doing the very same thing as an adult. Endometriosis is often inherited. My oldest niece suffers from it, too.

There’s a surgery option which burns away all the endometriosis and removes all cysts. This is what I had done. In addition my left ovary adhered to my intestine due to years of cysts and adhesions. I could be the lucky girl with endometriosis in my intestines, a follow-up appointment I’ll wait to schedule until I’m healed from the first surgery.

I had to have the surgery in New Jersey. The bumpy car rides were painful and I couldn’t drive myself when I had to see the specialist. Out of the five doctors I called in this city, none would see me on short notice if I wasn’t pregnant. I had many fever filled frantic nights at the emergency rooms locally. I had some of the worst treatment in the best rated Philly ERs only to end up getting the best treatment at one of the worst rated.

Two other endometriosis options are Lupron and birth control. I realize it’s completely taboo to speak of the evils of birth control so I’ll refrain, but I’m allergic, so it won’t work for me. (Though years ago I tried it and found that experiencing what life on birth control is like helped me understand more about women in some very odd way.) Lupron is a man made hormone that will drive me into early menopause and cause bone density loss. The other catch? One can only take Lupron for about a year because of its effects.

So I opted for the surgery as I really had no other choice. I waited as long as I could to have the surgery as I exhausted every other option I could possibly find. The only true glimmer of light is natural menopause. Menopause is any endometriosis sufferer’s salvation.

Another ongoing option is acupuncture. Going to my local acupuncturist helps control my pain levels, but my disease had to be taken to modern medicine as the situation became direr.

I haven’t been able to play tennis in over a month or train at all for that matter. When I did try to exercise I did horribly. I couldn’t fully concentrate or focus on the ball at all. I couldn’t move quickly. The pain was worse after any physical exertion and there was always so much blood. Now I’m all spaghetti arms and feel so feeble from being inactive. Each doctor’s visit obligatory scale weigh-in shows another five pounds lost and my smallest belts are not doing their jobs. Digestion hurts so my appetite is scarce. If I’m not exercising, I’m not sleeping well. If I’m not sleeping, I’m more anxious and am awake to feel the pain and lament. It’s a circle compounded by vast disappointment.

I am on the mend now, my doctor says. My surgery scars still have not healed and I’m still benched tennis-wise. But I’ll be returning to work soon. I’m able to walk my dog at least a few times a day.

In a study in 2006, Isobel Knight, from Bowen Works, found that in an age range of 19-42 in 28 women with endometriosis 67% of the women missed work with frequency because of pain-related symptoms of their disease.

Besides the pain and all that comes with it, it’s also humiliating to have to talk about this stuff. Can you imagine telling your friends or your job your cunt is sick? The mortifying constant painful gyno exams? I’d put up the before and after pictures here of my ovaries from the surgery if I could stand to look at them.

My girlfriend was able to look at them and she told me how black and sickly my left ovary was before surgery and how pink and lovely it was after.

My girlfriend who has been an incredibly loving supportive saint during all of this with her complete devotion to the betterment of my vagina makes me weepy daily. From pulling the glue from my suture marks to making me countless cups of tea that I just want to smell and not even drink, she has been wonderful.

It was horrible circumstances for the two of us, but I was thankful for the almost three weeks she took off work to stay by my side. Though I was recovering from surgery it was still really nice to spend all that time with her and I’d like to thank her here for being such an understanding nurturing person.

Thanks to her, friends with warm wishes, a fostering work environment and PlayStation 3, I’ve been able to rest and heal.

But I have missed so much! I’ve missed the Sugartown Sara Sherr events, really protesting at the Prop 8 rally, Roller Derby, countless concerts (Cold War Kids, Matthew Sweet, James at the Troc!!!). I’ve missed friends, birthday parties and general holiday cheer. I rang the New Year in with my PJs on.

But I do wish you all a heartfelt Happy New Year. Take stock in your health! And I will be taking up Philly’s gayness again in its entire splendor very soon! The reality is, though, that all my burned out endometriosis will come forth again and the sniper will have a loaded gun once more. So if you see me and I’m looking at rooftops and acting squirrelly, it’s just my cunt. Read up about endometriosis.

My 2008 list:

  • Disappointment of the year: Politics, close second to my health.
  • Movie of the year: Tru Loved (keep in mind I haven’t seen Milk yet)
  • Best book read: This year I read two books by Andrea Seigel. I liked To Feel Stuff so much I wrote her an email months ago and we’ve been email buddies every since. Save for that I’ve been exploring feminist literature that I previously have not been familiar with, for instance the first black female sci fi writer Octavia Butler, so nothing published in 2008 particularly struck my fancy. (Though I’m obsessed with Picador Shots.)

  • The image “http://cdbaby.name/c/s/cstourists.jpg” cannot be displayed, because it contains errors.Best Video Games: Little Big Planet, Geon, Rock Band 2 or War Hawk.

  • Television: I like to watch Real Housewives of Orange County and think of them as Drag Queens. Sara Sherr told me to do this with Desperate Housewives, but it can apply to any situation where women behave in a fashion that sets the movement back. I’m also quite fond of Knight Rider and though the new 90210 is OK, Soap Opera Network is my friend airing the original show so often I rarely miss it. I enjoy the Cambell Brown a great deal as well.

  • Music of 2008: Still obsessed with Brit Pop I heard that The Courteeners might open for Morrissey this tour, so I’ve been listening to that. I’ve also grown quite fond of Vampire Weekend and did I mention that Santogold went to the school I work for? And I love that TV on the Radio funk song, “Golden Age.” Save for that, speaking locally, Chris Schutz and The Tourists released a record, Gemini, a few months ago. Any time I needed a CD to listen to I popped it in. “I Know that Shit Ain’t Right,” echoes in my ears. The CD is crisp and clad with back up singer vocals and really tight music. It sounds like anything you’d hear of substance on XPN, but frankly it’s too cool for XPN.

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