Endometriosis almost cost me a kidney

The nurse started my IV line. I felt a too-familiar pinch in my arm then a taste of salt from the saline flush.

I could not believe I was back in the hospital emergency room, about to be rushed into surgery. But there I was, one evening last month. Doubled over, I hobbled to the wheelchair that was waiting to take me into what would be another extensive surgery-my third in less than three years.

“I hate endometriosis," I mumbled.

What is endometriosis, exactly?

Endometriosis is an illness in which endometrial tissue (similar to the kind that lines the uterus) grows outside of the uterus, in other areas of the body. It can cause severe pelvic pain, excruciating periods, infertility, bowel and urinary disorders, pain during intercourse, nausea and vomiting, among other terrible symptoms.

It was extreme abdominal pain that made me drag myself to the hospital that night in May. Over four hours later, I woke up in the recovery room. My body was shivering from the anesthesia and trauma of the surgery, which, like the last two operations, was to excise endometrial tissue from my organs.

"What did they find?" I asked the nurse, when I could speak.

"The doctors will let you know what happened," she replied.

I knew she wasn’t allowed to give me that kind of information, but I was worried. Did they need to remove my ovaries? My uterus? Some women, like the actress and director Lena Dunham, opt for a hysterectomy, in hopes that it’ll alleviate their pain. You never know how rampant the spread of endometrial tissue is until they open you up to look.

"Your right side was like cement," my surgeon said

In the early morning hours, the doctors came in. I learned that this time, my endometriosis could have cost me my kidney.

“Your right side was like cement from the endometriosis-your organs were fused together, and your ureters were completely trapped and closed off,” the surgeon told me (the ureter is a tube that carries urine from the kidney to the bladder.) “If you had not come for surgery soon, you most likely would have gone into renal failure.”

I was shocked. “I could have lost my kidney from endo?” I said.

The surgeon nodded. The look of concern on her face made me swallow hard. She added that I also had a very large endometrioma on my left ovary-an endometrioma is a cyst filled with endometrial tissue. If that had gone untreated, I might have lost an ovary, too.

Doctors dismissed my symptoms at first

Before I was diagnosed in March 2016, I knew of endometriosis. But until I had my first dramatic hospital visit in 2016 I had no idea how bad it could get. Loss of kidney function is just one example of how endometriosis can rob a woman of her quality of life: A 2012 study estimated that out of 100,000 women with who had endometriosis on their ureters, between a quarter and half of them would lose their kidney function,

More than 830,000 (more than 11%) of Australian women suffer from endometriosis at some point in their life with the disease often starting in teenagers.

When my symptoms-most obviously a stabbing pain in my side, heavy bleeding and a low-grade fever-became impossible to ignore, I had no idea what was wrong with me. Most women don’t, and it seemed that the doctors didn’t, either: I saw several who dismissed my symptoms as no big deal.

Finally, a few days later, a specialist mentioned the word endometriosis, and referred me for surgery. When I awoke, I the doctors told me that I was infertile, which is often a side effect of endometriosis. I was absolutely devastated. I was only 33, and had always planned on being a mother, but I had the eggs of a 45-year-old woman. I raced to undergo three egg retrievals, to rescue any eggs that may still be viable.

Luckily, I was still able to get pregnant

I thought the first surgery would be my last, but endometriosis attacked my body again. I underwent a second surgery in June 2017 to remove more tissue from my ovaries, bladder, uterus, and had my appendix taken out-the appendix is another breeding ground for endometriosis. The doctors told me that I had a small window to get pregnant before the disease was likely to overrun my insides again.

I went into now-or-never mode to try and get pregnant, having several rounds of in vitro fertilisation as soon as I was healed. I was lucky: I had my son Alexander in August 2018.

The thing about endometriosis is that you might have it for years and not even know it, either because you had minor symptoms, or because you never realised the symptoms you had were from endo.

I always had bad painful, heavy, irregular periods. Sometimes I would bleed for 15 days, get a quick break and start bleeding again for the remainder of the month. I thought that was normal. It was not. Other symptoms women typically overlook are urinary issues, constipation, and pain with intercourse.

In fact, it takes an average of a decade before a woman is diagnosed with the disease, and in that time-aside from having to deal with sometimes crippling symptoms-a woman can lose her fertility.

I cannot tell you how badly I wish my younger self had known about the signs of endometriosis, so I might have gotten a proper diagnosis and treatment sooner. I don’t know for certain that it would have changed my path, but at least I would have known that what was happening to my body was not normal.

I'm doing ok now. I had my miracle baby. Thank goodness. But wow, the struggle.

Please share this story far and wide, so your friends and loved ones know more about this debilitating disease. I want to spare other women what I went through-ten years is too long to be in misdiagnosed, misunderstood pain. We all deserve the right to our healthiest, happiest, most productive lives.