Just Because You Can't See My Endometriosis Doesn't Mean It's Not There
Standing in front of the antique mirror at our swanky bed and breakfast during a weekend getaway, I scanned my stomach in the yellow-haze of lighting.
I looked at least four to five months pregnant (I wasn't). The three glasses of red wine at dinner couldn't even change how I felt about what I saw in the mirror.
Bloated. Like 10 water balloons somehow got trapped in my abdomen, pressing down on all of my bowels. Like someone had hooked up an air pump to my belly button, and kept pumping – inflating air into my stomach.
I hung halfway out the doorway with my lacy bra on, to break the news to my husband.
"I can't. Look at my stomach. It's like there's a bowling ball in there."
He didn't hide his disappointment. He took a deep breath, and sighed.
And as much as I wanted to have amazing, uninhibited, long over-due sex with my husband, it wasn't going to happen. I felt huge, uncomfortable, and I was terrified that the wrong sex position would immediately throw me into howling pain.
When you suffer from endometriosis, the pain doesn't only hit you when you have your period or during PMS (although those times are often the most painful). It can hit you any time – and it can knock you to your knees. Or make you hostage to a bed. Or keep you stagnant on top of a toilet seat, totally unable to move.
I've suffered from endometriosis since I was a teenager. Back then, I thought every woman experienced the same kind of pain I did. In my early twenties, doctors discovered a large cyst on my ovaries during an internal sonogram. The cyst was stubborn, and it wasn't going away. The doctors were concerned, so they scheduled my first laparoscopic surgery to remove the cyst. It was during that surgery that doctors discovered endometriosis, and diagnosed it as Stage IV – "extensive."
Stage IV endometriosis means I had large, deep lesions on my reproductive organs, and there were adhesions outside of my uterus. During surgery, the lesions and adhesions were removed. But, it's not a permanent fix or cure-all. Endometriosis grows back. The cells eventually come back. The excruciating pain comes back.
When we're suffering in pain, it's not just "bad cramps." It's your worst case of bad cramps, amplified by a million-gazillion. 800 milligrams of Ibuprofen, Midol, or Tylenol don't even begin to cut it.
Most people don't get it. They think endometriosis sufferers are just weak. That they can't handle pain. That they should be used to it by now.
I don't think my husband fully grasped the magnitude of my pain and suffering until my gynecologist showed him the pictures of my insides after my first laparoscopic surgery (which, by the way, is the only way to diagnose and remove endometriosis.
For him to see the transparent amount of scar tissue and adhesions that had taken over my reproductive organs was eye-opening. But, that's what makes endometriosis so hard – you can't see the destruction it causes from the outside.
My husband has been going through the doctors, the tests and the surgeries with me for over 10 years. He gets it now. He's held my hand in many recovery rooms. He's covered for me with our kids when I can't get out of bed for two days. He's seen more bloat and blood than any person should have to. He understands that sex can't happen when I'm puffed out like a pregnant lady. He understands that sometimes, there's an underlying fear that having sex will hurt me.
The rest of the world is slowly starting to recognize the disease, too. Lena Dunham, the creator of the hit-show Girls recently announced that she was taking a career hiatus to deal with an endometriosis rough patch. While she's famous (and rich), and probably can take time out of work for a bit to recover, the rest of us aren't so lucky.
We still have to go to our jobs to make money to live and feed our families. We have to care for our kids, even when we can barely stand upright to make breakfast. Some endometriosis sufferers don't have insurance, which means they can't get the surgery they need. Some people don't have paid leave at their jobs, which means they can't even take the time off. And so we go on. We go on living with this horrible, chronic illness that invades our bodies. It impacts our jobs, our loved ones, our hobbies, our psyches, and our sex lives.
Treatment options are scant and mostly really hard on the body. Birth control taken continuously, meaning no sugar pills during your period, can really make your hormones haywire. Other medicines can be horrific.
I accept my reality. I have to. I've had two surgeries in the past 10 years, but they haven't helped much. I take supplements and lead a healthy lifestyle (for the most part, because wine). So, I choose to live unmedicated and in pain.
For me and for my kids, I have to accept that this is my "normal." And because I'm married, it has to be my husband's "normal," too. Did either of us picture it this way? No. We thought we'd be having hanging-from-the-chandeliers sex on the regular. Thankfully, though, there are other ways to be intimate. And we've learned to embrace them.
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