Heartache

White halls.
White doors.
White walls.
White floors.

“That rhymes,” I tell myself.

Anything to stop me from thinking about where I am.

I stare at the mysterious beige stain on the corner of one of the grey, speckled ceiling tiles. Is it a water stain? Mould? It’s an interesting pattern.

“Sorry?” I say to the man beside me.
“Do you have any children?” he asks again.
“No”.

Tap, tap, tap goes the keys on the smudged keyboard, the machine booping and beeping each time he takes a picture.

“And why has your doctor ordered this test?” he asks, adjusting the ultrasound transducer, smooshing the cold gel around my abdomen.

“To rule out any tumors or cysts that could be causing my symptoms before we consider a hysterectomy,” I tell him, continuing to stare at the ceiling.

Just breathe. In. Out.

I never pictured myself in this room for this reason, at 26 years old, with no children. Sure, I’ve had abdominal ultrasounds before. And yeah, during them, I got a little pang inside my heart that I wasn’t there to see a little person growing inside of me. But that was always okay, because I could be there for that later.

But there will be no ‘later’ after a hysterectomy.
This isn’t a pang, not this time. This is heartache.

“Sorry?” I say again.
“Do you usually have problems with dehydration?” the man asks again.
“Oh…yes,” I reply.
I’m not up to explaining.

Their instructions were to drink 1L of water an hour before my appointment, and not to pee afterwards. I went to the toilet when I got up at 8am, had breakfast, drank some water. Kept drinking water throughout the morning. Went to bed, and had a sleep. Woke up, had a shower. At 12.15pm, I measured out my requisite litre, and drank it.

But at 1.40pm, when the technician started the ultrasound, he discovered my bladder was empty. Yes, I had drunk the whole litre of water. Yes, I’d drunk it over an hour ago. No, I hadn’t been to the toilet since 8am that morning.

He was kind, and patient. He’d try again in another hour, he assured me. Until then, keep drinking water and walking around. I walked around a local store, because it was air conditioned, and kept drinking. At 2.40pm, another litre later, we tried again.

“Perfect!” he beamed at me, as he checked the images on the screen. “I’ve got a clear view of everything now!”
“That’s great,” I tried to beam back.
But I didn’t want to be there.

“Great news!” he said, fifteen minutes later. “Everything looks great – no cysts or tumors. And both your kidneys are where they are supposed to be.”
“Wonderful,” I say, my smile a little strained.

But no cyst or tumor means the problem is likely adenomyosis.
Endometriosis is when a woman grows the lining of her uterus in places outside of the uterus. Each month, when the lining on the inside of the uterus sheds, all that lining outside the uterus also tears away. It’s painful, and can create scar tissue and problems with infertility.

I’ve already had surgery to check for endometriosis. My gynecologist and I were 99% sure I had it. My Mum had suffered from it, and I had textbook symptoms. But when they looked inside my uterus…nothing. I didn’t have it. I let it go, and went home.

Adenomyosis is endometriosis’ big bad cousin. It’s where the lining of the uterus grows inside the muscle of the uterus. Each month, it swells and tears, trying to shed, but having nowhere to go, because it’s trapped inside the muscle. It’s excruciatingly painful.

Unfortunately, there’s no test or surgery to diagnose adenomyosis. Since it’s inside the muscle, it can only be diagnosed after a hysterectomy, when they cut your uterus up and look at it under a microscope.

There are treatments, both for endometriosis and adenomyosis. A combination of hormonal and anti-inflammatory medications. Hysterectomy is an extreme, absolutely last option. Unfortunately, because of my genetic clotting disorder (unrelated to Dysautonomia), I can’t have any hormonal medications. And because of my sensitive, messed up digestive system (Dysautonomia gets the credit for that), I can’t have anti-inflammatory medications.

I’m losing more than a week of every month to excruciating pain. Before I menstruate, during menstruation, recovering from menstruation… having a small break… then starting again. It’s been slowly getting worse. Five years after my check for endometriosis, I’m back in my gynecologist’s office. I can’t put it off anymore.

He was gentle, and kind. He asked a lot of questions, and we went over all my test results, ruling other things out. Eventually, he sadly explained adenomyosis to me, and agreed to do a hysterectomy whenever I’m ready.

I’m not ready.
I won’t concede defeat just yet.

I’m not well enough to grow a child inside my body, right at this moment. I’m not even well enough to look after a baby if one magically appeared on my doorstep! But I haven’t given up hope that, one day, I might be well enough. So I’ll keep looking for other causes for my worsening uterine symptoms. Infection. Imbalance of good and bad bacteria. Something?

But, deep down inside, there’s a struggle going on. One side says that I might be putting up with this pain, this loss of quality of life, for a ‘one day’ that turns out to be ‘never’. The other side whispers that it would put up with any number of such painful days for the chance to one day hold my child in my arms.

xx S.