My Experience With Endometriosis: Jokes, Roses, and Scars

My Experience With Endometriosis: Jokes, Roses, and Scars

I will never forget the look in Dr. Levey’s eyes while I described my symptoms. He beamed with mystery-solving satisfaction. I sank with sheer terror. He said, “You likely have Endometriosis. It affects thirty-something women who have not yet had a child. But let’s do a quick exam first.” That “quick exam” involved pressing all around my lady parts (which hurt where he’d predicted) as well as a quick finger up my rear end. I yelped, prompting the doctor to ask if I’m ok, prompting me to say, “Usually someone buys me a drink first.” The joke fell flat in the room with the doctor and nurse. I can’t blame them really since the line between a medical exam and intimacy is a shaky one.

“You’re not going to like what’s next,” he said. “You’ll need surgery so we can take out your appendix, look around with cameras through your stomach, cut pain fibers, and remove any growths that have formed.” Then he said what every “thirty-something” single woman dreads. “You’ll need someone to take care of you while you recover.” Hmmm. Luckily I have supportive parents who agreed to take the trip up from New Orleans to New York plus an amazing boss who let us stay in his swanky pad while he was in Europe.

I felt relief since the mystery of the past 36 months of bladder issues + pain + lethargy + weight gain + bloating + unbuttoning my jeans + billowy old lady clothes + antibiotics was kind of solved. But I also thought, Crap - I now officially have a condition. And it’s a condition that is both incurable and gives me 24/7 PMS. Most people don’t even know what Endometriosis is. Men get uncomfortable. Women are only curious if they think they also have it.  

So what is Endometriosis? Endometriosis is a painful, chronic disease that affects millions of women. It occurs when uterine tissue is found outside the uterus, causing growths or lesions in places like the ovaries, fallopian tubes, outer surface of the uterus, bladder, bowel, vagina, and cervix. Consequences can include pain, infertility, scar tissue, adhesions, and bladder/bowel problems. Every case is different and there is no exact correlation between level of growth and corresponding pain or side effects.

After the dust settled from the news, the next step was setting the surgery date and an innocent little MRI. Or so I thought… When I sat down at my early morning appointment the nurse said, “Has anyone explained what’s about to happen?” Oh God. Here is comes. “We will need to insert MRI gel into your vagina and rectum for the scan. A lot of it.” I took a few deep breaths and thought well this should wake me up and put my purse in a locker and changed into paper shoes and a faded gown.

Of course the doctor who administered the butt gel was extremely good looking. I had to take care of the lady region myself with two large, dull syringes, which yes, felt unnatural to insert up there. Then came Dr. Sexpot with a rather large tube. I rolled over onto my side, held a nurse’s hand, and once again said the only line I could think of - “Usually someone buys me a drink first.” He at least laughed, saying most patients are not so funny about it. Followed by, “Hold on, that was just half, I need to change the bottle.”

It’s hard to accurately describe what I felt next, but let’s just say I was weary to move while lying on the MRI table, afraid MRI gel would lunge out of my body like a bent toothpaste tube. The MRI itself was fine, it just took forever. You have to take shallow breaths so you don’t move too much while listening to a Pandora station on headphones that barely cut through the hum of the machine. The infamous "Shins" station has never been so depressing.

The absolute worst part? The anxiety the day before. Thank you, Brooklyn Botanical Gardens, for calming me down with all your beautiful roses. I stopped and smelled all of them.

The surgery that followed wasn’t too bad. I now know what it feels like to be stabbed in the stomach, which I believe were my first words coming out of anesthesia. I also now know what it feels like to need the assistance of two nurses to get to a hospital bathroom. This gave me unexpected empathy for my late grandmother who in the same scenario once cracked, “No need for gloves - any bugs in me died a long time ago.” She also made jokes at the weirdest times.

For a month I was extremely soar and slept with a pillow underneath my knees. And of course I gained more weight from lying around as well as a short-lived affection for narcotics. My doctor said surgery revealed I was at a level 7 out of 10 in the growth department, and my bladder was the main target. My fertility parts looked normal, but other women aren’t so lucky.

Follow-up doctor visits have been comically epic experiences. The first was an IUD insertion (the leather to bite on was suspiciously missing from the box it came in). The IUD device helps slow down future Endometriosis growth with a side effect of birth control, which is hilarious because it causes months of cramps and bleeding after insertion. And if I can get insurance to pay for it, I can also get Botox injections to alleviate my “pelvic floor spasm.” Fun!

It’s been nearly one year since my surgery. I have five little scars on my stomach. I’ve been working out and keeping my jeans buttoned. Yoga helps manage the pain. Reiki and meditation bring me into the present moment. I treasure the days without symptoms - days I would have taken for granted before. Because that’s what health challenges teach us - to embrace the ordinary, live in the moment (smell those roses!), and never stop making jokes about our lady parts. Because life is funny - no matter how old or scared you are.