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May 28, 2023

I Knew There Was Something Wrong With My Body — But Doctors Wouldn't Listen to Me

"I will never again wonder if it's 'all in my head.'" I perched on the edge of the exam table, looking at him in disbelief. I'd dragged myself to the ER that February evening in 2016 with a shooting

"I will never again wonder if it's 'all in my head.'"

I perched on the edge of the exam table, looking at him in disbelief. I'd dragged myself to the ER that February evening in 2016 with a shooting pain on my right side, which had started that morning. Later in the day, I began to bleed; I went through a thick pad and a super tampon every 40 minutes, even though I didn't have my period.

"What kind of flu makes you bleed?" I asked the doctor, a general practitioner who said there was no ob-gyn available. "You might have a hormonal imbalance that can cause bleeding, but I doubt it's anything serious," the doctor said. "I suggest you see your gynecologist tomorrow." With that, he sent me home.

I felt helpless, but he seemed so sure it was nothing. Even though it didn't feel right to me, I didn't want him to think I was a hypochondriac, and I didn't want to make a scene. So I left the hospital frustrated — and scared. Then I stayed up late, googling everything, trying not to panic.

The next morning, I called in late to my job as a reporter, and I went to my ob-gyn. As soon as she walked in, tears began to roll down my face as I described how much pain I was in. I was so relieved that I would learn what was going on.

But I didn't. After a quick sonogram, she told me she didn't see anything. My urine sample ruled out kidney stones. "It's probably just a virus," she said. She too mentioned a possible hormonal imbalance, but she didn't seem that concerned about my pain. I got the sense she thought I was being overly dramatic. "I know my body, and something is wrong," I told her. "Well, I don't see anything," she repeated. I left in tears.

When I was still bleeding the next day, a friend insisted I see a reproductive health specialist. This time, my concerns weren't blown off; she saw a mass on my uterus. I was upset, but at the same time relieved that it wasn't all in my head and that I would soon be getting answers. She told me that she had to perform surgery to see what the mass was. "I'd like to do a blood test to check your egg reserves first," she added. If she suspected endometriosis, she didn't say so. I would later learn that reduced egg reserve can be a sign of the disease.

A couple of days later, she called me at home. She sounded hesitant, which made me nervous. I jumped up to grab a pen. "The blood test showed that you have the eggs of a 45-year-old woman," she said quietly.

My knees buckled, and I collapsed onto my chaise. I was only 33! My boyfriend, Rob, and I were planning to get married and have children. I'd always wanted to be a mother. This meant I might not be able to have kids. "How do I get my eggs back?" I asked.

"You don't," she answered. She went on to say I might be able to get pregnant through IVF, but first things first: I seemed to have aggressive endometriosis. There was no simple test: I needed surgery to diagnose it and, if it was there, remove it. I scribbled everything down while she explained: Endometriosis is when the tissue that lines the inside of your uterus grows outside it and can adhere to other organs — no one knows exactly why. The disease can also compromise your eggs. I couldn't wrap my mind around it all. I just wanted the pain to stop.

I met with another specialist and then had surgery a month later. What they found was worse than anyone had expected: Endometrial tissue had infiltrated my bladder and my ovaries, and my uterus was covered with it — that explained the pain. In retrospect, I'd had signs for years, things I just thought were normal for me: I'd pee 10 times a night, and I had periods that lasted more than a week.

Until then, I had only thought of endometriosis as a cause of painful periods and fertility problems, which is how most women experience it. I had no idea that, in some cases, it can be a debilitating disease that destroys your organs. I learned that there is no cure, and how frequently it comes back depends on how aggressive it is. While most cases aren't as severe as mine, around 10% to 20% of women have endometriosis, which can block the fallopian tubes, prevent an embryo from implanting in the uterus and interfere with fertility in other ways. The doctors had saved my uterus this time, but I knew next time I might not be so lucky. In severe cases, a hysterectomy may be called for.

My doctor told me I had two choices. I could manage the pain and bleeding —  endometrial tissue growth is spurred by estrogen, and hormonal birth control would block the hormone, which could help the symptoms. Or I could have an egg retrieval in hopes of getting pregnant through IVF.

So I went through two egg retrievals, in which doctors hyperstimulated my ovaries with fertility drugs and extracted the eggs. I also had physical therapy to retrain my pelvic muscles;  the endo had been pulling my organs out of alignment. I had moments of discomfort, but thought I'd kicked this thing. I felt optimistic.

But 14 months later,  it felt like a hot serrated knife was in my side. My doctors thought there was almost no chance of it being endometrial tissue growth so soon after my surgery, so when they told me it must be a muscle spasm, I went with that. I was partly in denial — I didn't want to believe it was happening again. If I gave voice to it, that would make it real.

So again, I gritted my teeth and tolerated the pain. I'm ambitious, and I work in a competitive environment; I didn't want to appear vulnerable, so I kept up a strong façade during the day and went home to cry it out at night. One day it was so bad that when my desk started rocking, I thought there was construction going on. It took me a moment to realize I was the one shaking.

By mid-May, I was bleeding again, so I saw a different surgeon. "The only way to know what's going on is to open you up," he said. "I don't know if you want to do that." There was a real chance that it was just muscle spasms.

I told him I needed to think. Recovery took weeks, and I didn't want to be the girl who cried wolf. But a few days later, on the way to my parents' house, I started convulsing. Rob took me straight to the hospital, where they prepped me for surgery the next day.

I woke up in a recovery room more than five hours later. They'd removed my appendix because it had been covered in endometrial tissue; my uterus had been fused to my abdominal wall and my ovary stuck to my uterus. I'd had tissue on parts of my intestines and my bladder. I was terrified that this was going to keep happening! I was mad at my body — and at myself for not having trusted my feelings.

I was in the hospital for four days. While I was there, I was told my window of fertility was only six months; another attack was likely, and they didn't know if they could save my uterus next time.

During my monthlong recovery, I thought a lot about how much pain and frustration I had experienced. My doctor this time was an older man, and he had made endometriosis his life's work. He told me stories about doctors who didn't recognize the symptoms and about women who didn't feel heard. "I'm giving you the flag," he told me. "Carry it and get the word out."

That's why you're reading this. Endometriosis, like other "plumbing" issues, can be hard to talk about — it's uncomfortable to explain to your boss as a reason you've missed work. But women need to speak up; we know our bodies. Doctors need to be better able to recognize the signs, and women deserve to know there are treatments that can help with both pain and fertility.

I'm realistic and optimistic about my future. If I have concerns or fears now, I don't bottle them up — I will never again wonder if something is all in my head. I am doing IVF to try to get pregnant. I don't know whether it will work, but I do know that I have the strength to get through anything. I'll be fine no matter what.

This story is originally appeared in the March 2018 issue of Good Housekeeping.

UPDATE 5/21/19: After several rounds of IVF, Diana was able to get pregnant and gave birth to baby Alexander in August 2018. She's also hard at work, along with the Endometriosis Foundation of America, to help pass a bill in New York State that would enable girls to learn about endometriosis in school.

"This bill could save our daughters and their daughters years of suffering by giving them the tools to recognize when something is going wrong within their body," says Diana. "By knowing the symptoms, it empowers them to speak up rather than thinking that periods are supposed to be painful. Pain is not normal. Knowledge is power." Diana points out that had she known about endometriosis at 17, her condition would have been managed a lot earlier, saving pain, time and money. The bill is scheduled to be voted upon in June 2019.

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