Dealing With Endometriosis

endometriosis personal story
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The first time I looked into Bea’s eyes, I had to close my own. Just for a second. Just to catch my breath. Her bright blue eyes sparkled like the sea. Her smile could melt polar ice caps. And yet, she was not, nor would she ever be, mine.

Not everyone knows what endometriosis is. Hopefully, more and more women won’t have to. Endometriosis is a cluster of cells that color outside the lines. Endometrial cells are supposed to stay inside the uterus. But when a person has endometriosis, these special cells get creative and grow outside the uterus. This unfortunate uterine circumstance can make it feel like a person’s insides are being ripped apart daily, especially during a period. Things throb. People pass out. Endometriosis is a nasty beast.

Another malevolent gift from endometriosis is women with the diagnosis cannot get pregnant. The cure for endometriosis though? Getting pregnant!  

I was officially diagnosed when I was twenty-two years old. Looking back, I should have been diagnosed way before. My first period arrived in fifth grade during a track meet. My mom sat in the middle of the stands cheering. As I reached the second of ten hurdles in the 100-meter race, I saw it—a rusty river running down my right leg. From there on out, I was the penthouse for endometriosis.

“Your uterus is like a pink and purple striped zebra,” the first OBGYN told me. “I’ve never seen this, and I don’t know what to do with it.”

At 18 years-old, I was given birth control; the Nuva Ring, which worked quite well as far as pain management goes. I didn’t have a period for two years. But then, on June 9, 2011, I got a gnarly wave of consecutive periods. Hit after hit, my uterus felt like the worker in a WWE wrestling match—defenseless against the narrative.

My second OBGYN asked for a genetic history. Turns out, my mom and grandmother have some form of endometriosis.

“Tell me about your symptoms,” she’d asked.

So I told her about the track meet when I was twelve years old and how painful my periods had always been. I told her about passing out in the halls in high school and how my mom who was a teacher there had scooped me off the floor to take me home to hot rice pads and baths. I told her about my soccer career in college and how my periods made me miss multiple games.

“It seemed pretty obvious something wasn’t normal down there,” she said.

“We didn’t really talk about it,” I said.

She ordered an ultrasound and said she’d found dark spots. Cervical cancer, she’d said.

So I sought a second opinion.

“That’s not cancer, love,” my third OB-GYN told me during a second ultrasound a few days later. “Those dark spots are water, probably from cysts that ruptured. Have you felt a pressure down there, perhaps intense pain in the last week?”

I told her yes, that I was almost always in pain. I told her I’d been bleeding for twenty-three days. I told her about the birth control and the two years of skipping periods. I told her about passing out in high school and rearranging my schedule in college around periods.

By this time, I’d memorized my symptoms in alphabetical order:

Bloating, cramps that felt like knives, headaches that turned into migraines, nausea a third of the month, throwing up if I ate or smelled anything my stomach couldn’t handle, tiredness every two weeks ….

“I’m sorry to hear that,” she said.

“I have cups in my drawers at work in case I throw up,” I said for emphasis.

“That’s terrible,” she replied.

Two weeks later, she shot a copper IUD up there to repel scar tissue. When my tissue grew around the IUD two months later, she took it out and recommended a fellow doctor in her practice to tend to me from there on out. But I was frustrated. I didn’t make another appointment. I guess I believed no one could help me.

I passed out in a CVS a year later. I was in the ibuprofen aisle about to buy some because my pain was unbearable, and I’d run out the night before. I woke up to an emergency responder over me, checking my pulse.

“Are you alright?” He asked.

“I have endometriosis,” I said.

“My wife has that,” he said. “You really need to see a doctor if it’s this bad.”

Then they loaded me in the ambulance and dropped me off at the emergency room. That would be my first of three visits to the ER in six months. Many of the ER doctors mentioned a hysterectomy or thermal balloon endometrial ablation, an operation that uses a special balloon filled with hot water to remove the lining of a uterus. Others recommended looking into ablations that would suit my needs and bringing that research to my OB-GYN.

Eventually, I had an entire Chrome folder in my bookmarks bar dedicated to endometrial ablations. None of them sounded appealing but neither did living with endometriosis.

There was radiofrequency ablation where a probe is inserted into my uterus to send radiofrequency energy into the lining. Supposedly, the energy and heat destroy the endometrial cells. There’s freezing and several types of heating ablations, all terrifying to read about. Microwave ablation, microwave-anything, really, sounded even worse.

My husband was worried. He’d been to the hospital every time, often missing work or an entire Saturday morning holding my hand as doctors guessed, patted my arm, and told me they were sorry. He challenged my stubbornness.

“We need to figure this out,” he said. So I made an appointment with my latest OB-GYN’s peer in the same practice, the one recommended to me a year ago.

“Hey, Josie,” the fourth OB-GYN said. “I asked for all the files from your previous OB-GYNs. You’ve been through quite a lot.”

I think I was crying because she handed me a box of tissues.

“It’s OK, sweetie,” she said. “What would you like us to do?”

I asked if she could make the periods stop.

“You know, I have the same thing you do,” she said. “Here’s how I stop it.” She reminded me of the Nuva Ring and how I could use it to skip periods. The look of defeat on my face prompted her to keep going.

“I know it’s not a solution,” she said. “Birth control is just a Band-Aid. And your body will get used to it. I know that. But since it’s been awhile, let’s give the Nuva Ring one more try along with an anti-inflammatory diet.”

I perked up; that was new. That didn’t sound like burning or freezing or pulling the whole uterus out.

“Anti-inflammatory diet?” I whispered.

“Yes,” she said. “See, doctors don’t know why endometriosis forms. We think it might occur in development when you’re a baby. It’s why we ask women for their genetic history. But abnormal growth like yours only shows up in puberty when hormones start developing in the uterine lining. Hence, we like to recommend hormone treatments.”  

She went on to say that since my body and hers are more advanced in adapting to hormone treatments, we need to seek alternatives such as eating foods that lower inflammation and estrogen in our bodies.

“It’s a natural approach,” she said. “Foods like meats filled with hormones, dairy, sugar, caffeine, and carbs like potatoes and breads cause inflammation. Alcohol and soy are also not good for women with endometriosis because of their estrogenic effects.”

This was the first time I’d heard of a diet change that could halt the effects of endometriosis. As a collegiate athlete, I’d kept my body fat low. However, I did enjoy hamburgers. And I loved sweets, especially chocolate milk with my Oreos.

“Let’s try it,” I said. “What do I eat?”

She handed me a list. On it were dark leafy greens like kale and spinach, salmon, broccoli, soymilk, avocados, beans, walnuts, almonds, cashews, chia and flax seeds, tofu, carrots, oranges, blueberries, strawberries, beets, apples, onions, and more.

“Will this work?” I asked. She had said our bodies were alike in this way.

“Well, it does work for me so let’s see what it does for you, OK?” Then she reached out and held my hand. “You’re doing a great job already just by being here.”

I wanted to believe her.

Three months later at the check-up, I reported to my OB-GYN that there had been no periods or endometrial pain in 90 days. I told her how great it felt to finally be normal. My OB-GYN felt around my waist and told me I had abs. I shared how I’d been able to train for races and to work-out again.

“I’ve got my life back,” I said. “I work regular hours without having to work from home. I have dressed up for dates with my husband without worrying about leaks. My pockets no longer rattled with ibuprofen pills. It’s been an amazing three months.”

“And how’s the diet been?” she asked.

“I’ve really stuck with it,” I told her. “I feel great!”

She nodded.

“Now I want to suggest something but please let me know how you feel about it, ok?” she said. “What do you think about a month off the diet?”

She wanted to test if what was helping was the birth control or the diet. So I went off the anti-inflammatory diet but stayed on the Nuva Ring. And after that first month, my period came back like a toxic ex. I was in pain emotionally, feeling all the feelings, and physically, praying for the pain to stop.

After thirty days, I reported this news back to my OBGYN, and we agreed I’d go back on the diet. Though it’s not a permanent solution, it is what we are doing now. It is what is working now, and I feel great about the more natural approach to this serious problem.

Currently, I am twenty-seven-years old. And I have to admit I am reminded of my body’s abnormalcy when my friends have babies—and having babies they are! While it’s a joy and an honor to walk alongside them in their journeys, some which have been difficult, it’s also moments where I’m tempted to body-shame myself, where guilt of my inability to get pregnant can sink me.

It’s moments where I hold Bea, my friend’s beautiful baby, and want to cry. Thankfully, my husband is the epitome of encouragement, patience, kindness, and love. With tenderness, he touches my waist and tells me that we are family, that he’s just glad I am alive and feeling better day by day.

Who knows what the next few years will bring?

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