They call me Ovary One Kenobi

I’m fucking angry. I’m overcome with grief, then guilt, then, utter sadness. It’s part of the process everyone tells me. You’ve been through so much they all say. I guess. I guess I have been through a lot. Everyone looks at me like a fucking patient. I had a surgery that didn’t go so well, then 48 hours later I had a second surgery to clean up the first. I spent nearly 11 days in the hospital; I have a $140,000 bill to show for it.

I fantasize a lot. I’m sweaty, panting; my heart is a racing, pupils dilated. I’m so ready for this moment. My breath escapes me through slightly parted lips; I suck in the thick air summer air. I feel primal, I feel alive. I’m my most happiest me. I’m competitive again. If perhaps you thought this was the intro to some tawdry sex novel this is much more salacious. This is a story about a girl and yes, a little mention of what’s between her legs. So if that’s enough to keep you reading, I’m fine with that. Perhaps in the end you’ll walk away feeling something else. At least that’s my hope.

This is the first in a series of articles cataloguing my recent diagnosis with Endometriosis and subsequent journey from the belly of despair to something more salient. A lot of what I’ve documented is raw. I wrote down my feelings as they surfaced. There is a clear timeline of events even if the emotions I experienced jumped from grief to anger to questioning and back again to grief. I’ve yet to reach the acceptance phase.

This year was supposed to be “the” year.  Just like thousands upon thousands of triathletes before me I had notions of qualifying for Kona at Ironman Louisville this year. I was close enough to taste it last year at Chattanooga and missed a slot by 12 minutes. I was on fire last year. I won overall female at two XTERRA triathlons and one sprint triathlon. Good things were happening. I’m coached by 2x XTERRA World Champion Lesley Paterson. Together with the help of her sports psychologist husband Simon Marshall, I was gonna get me one of those slots. So it sounds more or less that I’ve written that off. Not quite. For now I’m focusing on the next couple of weeks. Each day I do a little bit more. Eight weeks ago I was pushing my IV pole 40’ to my neighbor’s room and back again.  Now I split my time each day between my road bike and trainer, the treadmill and a step-mill. For someone who has logged 20 marathons, a handful of ultras and three Ironman triathlons, admitting that the most I’ve been able to run so far is 1.2 miles at a snails pace is pretty demoralizing.

At the finish of IMCHOO 2014. PR'd it
finishing in 10:34, close to Kona but close
doesn't cut it!

I want this to be no big deal (even though it’s a really big deal I know).  My husband, in his attempt to make me feel not so bad about not seriously racing Ironman, said this year could just be about fun, no pressure. You know what I kept thinking about? That damn hoodie I bought my dad for his birthday last year. It was a custom IM jobber that said Kristen’s Pops on the back and the IMLOU date on the front, 10.11.15. I thought, “I have to race, my dad has that hoodie. If I don’t its all a lie.”

In the beginning . . .

I’m documenting “my road to recovery,” it just sounds cheesy. I suppose in a month I’ll be better than I am today and I’ll revisit my words, I’ll be reflective, introspective, ponder the meaning behind all of this stinking pile of shit that has befallen me. Whoa, why so negative? It’s where I am today. I’ve been out of the hospital now for almost two weeks. I’m 13lbs lighter (wish it was more), I’m one ovary down, and I have 1’ less small intestine out of 14’, no appendix, and get this, Endometriosis. In addition to all that was removed, the surgeons took a 10cm cyst that had swallowed said ovary. Do you know what 10cm is comparable to? A fucking apple! Jesus H. Christ. Do you know how big the average female ovary is? Its 3 cm . . . chew on that.

The quiet moments before my nightmare began
Jan. 17, 2015. Operation #1. I'm all pre-oped
and stuff!

Endometriosis is a disease in which tissue that normally grows inside the uterus grows outside the uterus. Its main symptoms are pelvic pain and infertility. Nearly half have chronic pelvic pain while in 70% pain occurs during menstruation. Pain with sex is also common. This is bad news for the men who support the women who have been diagnosed with Endo.

As if all of this wasn’t tragic enough, infertility occurs in up to half of people diagnosed.  Obviously I’m referring to women, but in rare cases Endometriosis has actually been found in dudes. Then, there’s the social and psychological effects.  I can attest to the psychological effects. But I wasn’t prepared for was the Tsunami of emotions that are associated with having an ovary removed. I’m a hot mess right now. I actually bawl, howl like a Basset hound . . . over minor things. I’m “that girl” the one that’s on the emotional rollercoaster and my poor husband has front row seats. Less common symptoms include urinary or bowel symptoms. About 25% of women have no symptoms. Up until the giant cyst was discovered on my ovary I was part of this group, no symptoms, I WAS one of the lucky ones. Those days have passed. I’ve read some horror stories about women who couldn’t bare the pain they endured every month and felt there was no way out but to end it through suicide. This is where I get crazy mad. Why isn’t there more research on this disease? Why aren’t there more support groups? For an illness that accounts for the 11^th largest country in the world if all those afflicted were thrown in a giant bowl together, the resources associated with finding a cure and educating women is shoddy.

This is my Warrior Husband Al. He's the best
mothah f*#ckin husband in the whole world!

According to a bunch of doctors with fancy degrees who wear white lab coats, the cause is not entirely clear. Risk factors include having a family history of the condition. Most often the ovaries, fallopian tubes, and tissue around the uterus are affected; however, in rare cases it may also occur in other parts of the body. The areas of endometriosis bleed each month, which results in inflammation and scarring. The growths due to endometriosis are not cancer. Diagnosis is usually based on symptom in combination with medical imaging. Biopsy is the surest method of diagnosis. This is all very medical I know. So do you get this? I mean do you fully understand what this means for a woman who is repeatedly told by doctors that she just has “really bad cramps?” It means that when she finally finds a doc worth his or her salt, she has to undergo a pretty significant procedure before she can be validated or more accurately vindicated amongst those that told her to just take a few ibuprofen. Fuck that; learn to be an advocate for yourself. If your family physician is blowing you off, see a specialist. Your health and wellbeing is YOUR responsibility.

A couple of nuggets here I’d like to point out, infertility, which I’ll come back to. Also, areas of endometriosis bleed each month. Think about this for a moment. The endometrium travels backwards and escapes the confines of the uterus and fallopian tubes and floats out into the great unknown attaching its spider web-like cells to your intestines, diaphragm, bladder, stomach, liver, kidneys, spleen, and in rare cases your brain. Then once a month when “Aunt Flo” comes a knockin’ those pesky Endo cells bleed right along with your mighty Vag. Fucked up isn’t it? This is where the horrible cramping associated with Endo comes from. So all the ibuprofen, heating pads, and ice packs in the world don’t do shit for alleviating the deep aching pain that many women experience. Yes, I mentioned I was part of the 25% of women who don't experience Endo symptoms. Whelp, that ship has sailed. My first period post surgery was brutal. I’m not gonna lie, I was grateful to have had a narcotic pain killer on hand (left over from surgery). I used it . . . often.

This was my little friend. It's actually a drain.
Its tubing was fastened inside of my belly for
the better part of a week.

Ladies many of you are suffering in silence unnecessarily. According to the organization Endo Warriors, It takes on average seven years for a woman to be diagnosed with Endometriosis. Life shouldn’t stop because your lady bits are throwing a temper tantrum. If this experience has taught me anything it’s that there’s the common issues like gas and then there’s the not-so-common like the giant 10cm cyst growing on your ovary. Get checked out!!

FrankenBelly. Not lucky enough to get
Laproscopy. The vertical incision is from
surgery #2 aka ABSCESS

I want to circle back to the infertility issue I mentioned earlier. A close friend of mine recently asked me about having kids specifically whether or not I can have kids post operation. The topic is really moot, my husband and I made the decision several years ago to not have them and sealed the deal with a vasectomy. Irony is a real kick in the balls though because now after being diagnosed with Endo, I’m again on the pill. Birth control pills are often prescribed to women diagnosed with Endo to help reduce the risk of it returning. But it's not a cure!!! There is NO CURE!!! So, can I have kids, not sure? Do I want kids? Nope. I have two stepsons and I love them dearly. But . . . motherhood takes a very special type of woman. I am not she. I struggle with the maternal instinct. Frankly, I struggle with any outward display of affection. I try. So do I mourn the loss of my ovary, as the possibility of ever conceiving one of my own is probably gone? Not in the least.  Like me or not, I’m honest in my stance on motherhood. Having children and raising them to be wonderful beings is the noblest of callings.  I rank it up there with fighting for your country. I’ve just never wanted to do it.

More feelings . . .

“In the blink of an eye.” Whoever came up with that phrase must have had the rug pulled out from under them. That’s pretty much what happened to me. Sidelined, out of the game, benched for who knows how long. I’m not sure what decisions to make? Scared that if I make decisions based on how my body feels right now in this moment they’ll be the wrong ones. I can’t trust my body to give me the answers I’m seeking. I’m now nine weeks post op and I’m on the fence about pain I have down there. It’s hard to tell, did I push one of my workouts too hard and pull something or is this pain a cyst on my remaining ovary or worse yet, is this pain the Endo? It hasn’t always been this way, like I said in the blink of an eye it’s all taken away from you.

My first run back. It wasn't fast or very long, but you have
to start somewhere, even if its the bottom.

There’s always going to be someone hurt more badly than I’m hurt right now. That’s what my husband says. He didn’t say it to make me feel guilty for feeling depressed about my current situation, quite the contrary. He said it to let me know that it’s totally okay to feel bad, sad, blue whatever. He wanted me to know that embracing the feelings I’m feeling right now will make me appreciate my struggle. He’s one in a million; he’s my cheerleader. I’d like to think I would be as patient with him as he’s been with me. But I can’t say for sure I would be. I’m not him. He holds me when I cry, which I do a lot. He makes me food, cleans up after me, changes the sheets when I wake up drenched in sweat, kisses my forehead and doesn’t ask for much in return except for patience within myself. Those are the good days. The bad days we argue. I ask him why is this happening to me and he doesn’t have an answer. Here’s where it gets real. My hormones are half of what they were before my surgery. My one ovary must compensate for the missing ovary. So my emotions are all over the place and my sex drive is nowhere to be found. I wanna preface this with the fact that I wasn’t a horny teenager before surgery. So adios remaining sex drive, she’s left the building. This coupled with the stresses of surgery, recovery, and the perceived loss of identity has placed a huge strain on my marriage. This is reality of Endometriosis. At the time of publication I’m still not sure who to address this. It’s a sensitive area. Do I talk to someone? It might have actually come to this. I love my husband madly, deeply and forever. I want to be able to share the intimate moments with him again. Life can be humorless and cruel.

Happiness isn't always clean. 

So how do you take the first step back? It’s hard, in fact some days it’s seems insurmountable. It’s like I’m at the base of a giant pile of sand. I take a step up, my feet sink, and the sand from beneath me tumbles down the pile like a tiny avalanche. I take another step up the hill, this time I use my hands to gain a little elevation. I’m grasping at things but the things I’m grabbing just slip between my fingers. It takes so much effort just to go forward a few feet. I can see the top of the giant pile of sand but I don’t know if I’ll ever get there.  My recuperation is for the most part taking a linear progression. Meaning most days I wake up are better than the day preceding it. What I can’t reason with is the Endometriosis. It may or may not be lurking inside of me ready to wrap its spidery poison around my insides. The countdown recycles every 28 days.

I have to apologize to the reader this isn’t me, this brooding teenage-like outlook. I’m mostly a positive and happy person. Blame it on the one ovary, blame it on the surgery, blame it on the shit weather we’ve been having so far this year. Blame it on whatever the fuck you want but it’s not me. I’m trying here. I’m trying to see the silver lining in this entire shit sandwich; I’m failing, failing to see the plan.