Sari Botton | Longreads | April 2017 | 10 minutes (2,500 words)

Illness awareness months are a mixed bag. While they provide an opportunity to call attention to maladies both familiar and little-known, the window for each is woefully limited to one-twelfth of the year. From Alzheimer’s to Zika, there are so many conditions celebrated each month — at least 10 most months, and some months, many more — that it’s easy for any one to get lost in the shuffle. Too often, the commemorations are shallow and silly, and do little in terms of actually raising awareness, or involving people in the kind of hard work necessary to change policy.

And sometimes the conditions with the lowest profiles — the ones that could really use a spotlight shone on them — don’t make it onto the governmental calendars that get the most views.

Such is the case with adenomyosis.

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Never heard of adenomyosis? Allow me to take this moment during its official Awareness Month — April — to enlighten you about this painful affliction, which is similar to endometriosis, and something of a mystery to modern medicine. I know about it because it wreaked havoc on my life for 25 years before a hysterectomy at 43 — an operation I had to fight for, and almost didn’t receive — gave me the relief I needed.

I had never heard of adenomyosis until I was diagnosed with it nine years ago, at 42. And even then, I almost didn’t learn its name.

“You have ‘spongy uterus,’” announced the uterine specialist my gynecologist had referred me to after a fairly routine fertility test — a hysterosalpingogram — had left me screaming in agony. My extreme reaction to having a radioactive dye injected through a tube, into my uterus and fallopian tubes, raised new questions about the painful cramping and murder scene-level menstrual bleeding I’d experienced too many days each month for most of my adult life — problems I’d previously assumed were side-effects of endometriosis, diagnosed by a laparoscopy decades before, at 18.

Spongy uterus?” I asked the specialist. I’d driven over four hours to the Finger Lakes region to be examined by this man. “What’s the medical term?”

“You don’t need to know that,” he replied.

I’d noted that his intake form offered only “Mrs.” and “Miss” as prefixes — no “Ms.” — and found it curious, quaint even. But now it struck me as troubling.

I continued to protest, and still the doctor wouldn’t give me the name of my condition. What he did tell me was that I needed to have a hysterectomy. “Schedule an appointment at the desk on your way out.”

I froze. This was stunning information to receive, especially for a childless 42-year-old who’d only just embarked on the path toward fertility treatment, granted half-heartedly. I had an idea of how I was supposed to respond: I was supposed to be upset. That would have been the normal reaction to learning you need abdominal surgery to remove an organ, one without which your ability to reproduce is essentially obliterated. But I wasn’t normal, and neither was my uterus.

After I got home and the information settled in my mind, I was surprised by my undeniable response: I was ecstatic. Suddenly the clouds of what I’d mistaken for ambivalence about motherhood cleared, and for the first time, I could recognize my own lack of desire for kids. (Fortunately, my husband felt the same way.)

But even more than that, innately I knew what the doctor said to be true. For my entire life, it seemed as if my uterus had been trying to self-eject. I’d tried to explain this to one doctor after another, but most dismissed or minimized my pain, including one treating me for endometriosis. He told me that since I first got my period late, at 18, I just didn’t realize that this is what periods feel like. A person with a penis, who had never personally experienced a period, told me that.

He told me that since I first got my period late, at 18, I just didn’t realize that this is what periods feel like. A person with a penis, who had never personally experienced a period, told me that.

From the time I finally started menstruating, I would writhe in pain for days — sometimes as many as 22 — passing clots the size of my fist, bleeding until I was deeply anemic. I would miss work because of it. I missed time with family, friends, and partners. Sometimes I would actually manage to be physically present — bucking up because doctors told me this is just what periods feel like — but mentally absorbed in my agony. I’ll never forget the Internet date before I met my husband, where I tried to surreptitiously perform Lamaze breathing between bites of Niçoise salad, debating whether to ask my lunch companion to take me to the emergency room.

Each month, in the throes of cramping so painful not even Percocet could alleviate it, as I soaked through box after box of tampons and pads, I would fantasize about having my lemon of a uterus yanked. At last, now I could.

If only it had been that simple. Unfortunately, my struggle to learn the name of my condition from a dismissive, condescending doctor was just the beginning of my fight for the care I needed. Fortunately, dealing with that guy prepared me for the battles ahead. It also helped me overcome any residual reticence about talking frankly with male doctors about my “female problems” and my junk.

* * *

When I returned home from the uterine specialist’s office (pre-smartphone) I googled “spongy uterus” and learned it was an old, outmoded term for adenomyosis. My research described a condition in which the glandular lining of the uterus, programmed for cramping and bleeding, infiltrates the organ’s muscular layers and causes the uterus to spasm and hemorrhage excessively and erratically.

Each year, more and more women are diagnosed with it. According to Dr. Erika Schwartz, in practice in New York City, about 200,000 cases are diagnosed annually in the United States. But that figure likely doesn’t reflect the true number of cases, because many women go undiagnosed. There’s a lot modern medicine still doesn’t understand about adenomyosis. Often it can only be confirmed once the uterus has been removed and analyzed. Symptoms resemble those associated with endometriosis — in which the uterine lining travels and deposits itself outside the uterus, then cramps and bleeds on its own.

Sometimes, as in my case, it’s concurrent with endometriosis, and that keeps doctors from looking further into a patient’s complaints. It’s not clear why it’s mostly found in women over 40 — whether that’s when it appears, or just when sufferers become symptomatic. It’s also not clear whether the condition is present at birth, or something that develops later because of certain factors.

I was happy to know there was a name for what I had been living with, a growing body of knowledge — and a cure. I wanted that cure, but not from that dismissive, paternalistic jerk. Unwilling to ever return to his office, I had my gynecologist refer me to some others. I hedged my bets and chose the one married to a women’s studies professor, who used terms like “informed consent.” That doctor gave me the same diagnosis, although with the benefit of grown-up words. He explained what adenomyosis was, how it was both similar to and different from endometriosis.

He said only a hysterectomy would relieve the agony I typically lived with for up to 15 days a month. This time, when I heard that stunning bit of information, I didn’t freeze. I was completely on board.

It was only when the possibility was taken off the table that I realized just how very much I wanted the operation. A few days after seeing my surgeon, I learned my insurance company wouldn’t pay for the hysterectomy until I first tried six months of injections of a hormone blocker called Lupron to see if that alleviated my pain and hemorrhaging. Instantly I burst into tears, not only because every cell in my body affirmed my surgeon’s wisdom in calling for the removal of my uterus, but also because I knew people who’d been through the hell that is Lupron therapy, and I didn’t want to suffer through that.

By blocking the body’s estrogen production, Lupron halts the menstrual cycle — along with the attendant cramping and bleeding. That might sound like a logical solution, but essentially it’s putting your body into sudden menopause, the side-effects of which can be horrific: deep depression, weight gain, acne, and facial hair growth. I had already spent so many years attempting to treat my endometriosis with a variety of awful hormone therapies — double doses of birth control pills; progesterone-based “mini” birth control pills and similar drugs like Provera and Danocrine — none of which truly helped, and all of which yielded horrible side-effects.

While I was praying for surgery, well-meaning new agey people around me were appalled that I was pursuing such a drastic measure, and aggressively tried to persuade me to take a more natural approach to resolving my long, painful periods. But I’d already tried just about everything under the hippie sun: macrobiotic vegan diets, non-estrogenic diets, uterine massage, acupuncture, castor oil packs, supplements, dry brushing, a cleanse prescribed by a naturopath, eschewing parabens. You name it, I had tried it. I was tired, and I was done.

The biggest lesson in the whole experience — more important even than being schooled about adenomyosis — has been realizing how important it is for women to take charge of their own health care, to not be afraid to question and stand up to doctors. Even the more woke ones.

I urged my doctor to plead my case with the insurance company. I didn’t rest until a few days later when he called to say he’d persuaded them to change their tune.

* * *

My battle still wasn’t over, though. Now, I had to plead with my more woke surgeon to let me keep my ovaries. As a gynecological oncologist accustomed to treating cancer patients, he thought performing an oophorectomy while he was already operating was a good precaution. But my research indicated it was likely unnecessary, not to mention another route to the very sudden menopause I’d been trying to avoid by foregoing Lupron therapy. What’s more, it could be possibly life-shortening.

“Why don’t you ask some of the women in there,” he said, pointing to the chemo room across from his office, “if they would have settled for surgical menopause if it meant they could have prevented ovarian cancer. I’ll bet you every one of them would have had their ovaries out before, if they could have.”

The chemo room was a terrifying feature of my visits to this surgeon. It was a big open space, filled with puffy lounge chairs not too unlike the ones they have for pedicures at nail salons. Metal racks beside the chairs suspended bags of chemicals, which were hooked up to the lounging, exhausted women via I.V. The women wore wigs or kerchiefs on their balding heads. Some took those off, because of hot flashes. Walking by the chemo room was like being in a dream sequence from Six Feet Under, a visit to the living dead, a cautionary tale my doctor had art directed expressly for my edification.

But still I was determined to keep my ovaries. On my next visit, I marched into the doctor’s office armed with studies about the potential harm in elective oophorectomy, and unwilling to back down. He told me that even with my ovaries left in place, the hysterectomy would likely bring on the more gentle approach of peri-menopause a few years earlier than usual. I was fine with that. We struck a deal.

“When I go in,” he warned me, “if there’s so much as one funny looking cell on either of your ovaries, I can’t in good conscience leave them. But if I find that they’re clear, they’re all yours.” Thus informed, I gave my consent.

* * *

A Da Vinci surgical robot (AP Photo/Keith Srakocic)

As excited as I was to part with my defective uterus, I was terrified of going under the knife — or more precisely, a series of them, wielded by a robot. Mine was to be a Da Vinci® Robotic Hysterectomy, performed laparoscopically through four small abdominal incisions, by a robot that the doctor manipulates remotely from behind a computer console.

But on the day of the operation, I was reminded of why I needed to go through with it. That morning coincided with day three of my cycle — historically one of the bloodiest, crampiest days. As I lay on a gurney in the pre-op room, my uterus got busy violently wringing itself out for the last time, an unambiguous sign of just how crucial the surgery was.

That was August 31, 2009, and I’ve never looked back. When I awakened in the recovery room, I groggily asked the doctor, “Where are my fucking ovaries?”

“In there,” he said, pointing to my pelvis.

I healed pretty quickly, and have enjoyed sweet relief ever since.

Just a few months later, I experienced my first hot flashes. Peri-menopause was upon me. But it was okay, and nothing like the extreme changes associated with sudden full-on surgical menopause that I’d read about, and women I know had complained of. I could live with this.

* * *

I’ve since met a few people who didn’t have quite as positive an experience as I did. A few weeks after my surgery, a friend introduced me to her seventysomething mother-in-law who’d had the same operation, performed by the same surgeon. She listened as I gushed about my experience, and then laid this on me, completely deadpan: “My vagina fell. And I developed three hernias.” Things I had no idea I even need to worry about. (And luckily haven’t experienced eight years hence.)

I thought maybe the difference in our ages had been a factor, and maybe it had. But then I met a woman in her thirties who’d had her bladder damaged during the procedure, and had to have her urinary tract re-routed to an ostomy bag for three months while it healed.

In any case, my own experience might not have been nearly so positive if I hadn’t self-advocated every step of the way. Things might not have gone so well. And if I needed the surgery now, when I have a $5,000 deductible that I didn’t have in 2009, or if I would need it next year, once the Affordable Care Act is surely dismantled, I probably couldn’t afford it.

I feel incredibly lucky that I had the surgery, and that it was so successful. It was also incredibly eye-opening. The biggest lesson in the whole experience — more important even than being schooled about adenomyosis — has been realizing how important it is for women to take charge of their own health care, to not be afraid to question and stand up to doctors. Even the more woke ones.

Suggested reading and links:

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Sari Botton is an editor at Longreads and editor of the anthologies Goodbye to All That: Writers on Loving & Leaving NY and Never Can Say Goodbye: Writers on Their Unshakable Love for NY.

Editor: Krista Stevens