3 Things I Wish My Doctors Told Me About Endometriosis

I remember the instant I found out trouble was afoot (in my reproductive organs, that is). It was July 2013. I was mid-ultrasound — one that my primary care physician had me schedule to check in on the IUD that had been placed several years before.

Without a concern in the world, I was chatting casually with the technologist when she made a strange face.

“Hmmm,” she said, her eyes glued to the monitor in front of her. “The IUD is fine, but it looks like you have an ovarian cyst.”

My anxiety immediately went into overdrive. Excuse me? A what? Where? I tried to keep calm as she explained she couldn’t tell me much more, and that my doctor would follow up once she had reviewed the results.

A day or two later, my doctor did indeed follow up with a cryptic call, telling me to swing by her office when I was out of work.

“Swing by,” she said, as if we were besties and wanted my opinion on the new sweater she’d bought. Swing by I did, only to find out for sure that what the tech spotted was indeed a cyst. A complex cyst, which appeared to be an endometrioma. I remember being partially relieved. I had been experiencing extreme pain for over a year, and at least now we had outlined the cause.

More so, though, I was worried. Especially because, instead of explaining the various options and years of treatment I was about to endure, my doctor instead opted to peddle the most extreme treatment — the removal of said cyst, along with the ovary it sat on — as the most likely one.

I went home that day and bawled my eyes out. I was 25 at the time. My now-husband and I were still months away from our engagement. What if I couldn’t have kids? Would he even want to propose to me now? Like this? We hadn’t planned on having children for at least five more years. Would we be able to?

What I Wish I’d Known About Endometriosis

In the years since that ultrasound and the doctor appointment that followed, I’ve been diagnosed with endometriosis and undergone a barrage of treatments and medication. As with many endo patients, pain has become my new norm. Over time, I’ve learned how to adjust my life accordingly.

Unfortunately, endometriosis and chronic illness don’t come with an instruction manual. If they did, here are a few things I’d want them to cover:

1. Listen to and obey your body.

I can’t stress just how crucial it is to listen and respond to your body. It’s so much easier said than done. There have been countless times I’ve listened to and ignored the cues from my body telling me to take it easy — like the other Saturday when I scheduled for myself a day and night full of events, only to spend the next three days feeling like I was fighting the flu.

In the end, you’re the one who pays the price when you ignore your body. Don’t guilt trip yourself for making well-being a priority.

2. Build a strong support system.

The unfortunate news is so many people just won’t get it. Friends will take your inability to attend events for unwillingness. Bosses will confuse bad days caused by chronic pain or fatigue for poor performance. Skeptics will assume you’re making it all up.

Lose the naysayers. Chronic illness is tough enough as is. Surrounding yourself with your biggest cheerleaders — friends, family, doctors — makes it easier.

3. Quit it with the comparisons.

This includes but isn’t limited to comparing yourself to friends, to family members, to co-workers, to your partner’s previous significant other, to strangers on the internet, to the lady on the treadmill next to you, to the other dog owner you met in the park last weekend.

The toughest comparison to stop making? The one to your old self.

Endometriosis and chronic illness can be such difficult pills to swallow — particularly the whole “chronic” part. Most doctors don’t really give you a heads up on how it will affect your life. No one tells you how to navigate accordingly.

My best advice? Take it one step at a time.

Follow this journey on Coffee With Kaite.

Lead photo source: Thinkstock Images