It was late spring in 2013 when I frog-kicked in a Maine lake and felt a nauseating tear through the front of my right hip. As I froze in the water and then struggled to climb back onto the dock, I shrugged off my concerns, thinking it was just another sports injury.
But in the week that followed, no amount of painkillers, ice or massaging could ease what I wanted to believe was a temporary strain. Back home in New York City, the pain consolidated into a small spot at the front of my hip that sent a neuralgic burning into my belly, lower back and the outside of my leg.
Often it was bearable, and I could run or do yoga and convince myself that I was fine. The worst days I spent on my back, writhing and mystified: I wanted to seek help, but the pain’s origin felt illusive, the problem not quite mechanical, and I feared the doctors would fail, as I had, to name it.
After a year, I had no choice. My active life had disintegrated, my sleep was fitful, my mind was unravelling. At scarcely 30, I felt ancient.
But doctors’ visits through the autumn of 2014 into mid-2015 were as unproductive as I had feared. At a reputable medical group, the nurse practitioner who first examined me suggested stress. “Breathing helps” with pain, she advised.
An osteopath at the same practice ruled out back problems with an MRI scan. With no diagnosis after 12 sessions of soft-tissue adjustments, miscalculated steroid shots and excruciating needling, she prescribed physical therapy that I was in no condition to complete. “We’re learning this together,” she shrugged when I pressed her for answers.
Over the course of eight months, I turned to various specialists: A gynaecologist removed a dermoid cyst from my ovary; a sports doctor injected steroids into an inflamed bursa in my right hip; a top orthopaedic surgeon repaired a labral tear in that same hip, landing me on crutches for nearly a month. All three doctors were optimistic that their treatment would end the pain, but then it would flare again and I would feel guilty, as if I were to blame for resisting perfectly good treatment.
Then came the breakthrough: During a marathon research session, I found a 2011 newspaper article on hidden hernias — tiny tears in the abdominal wall that are excruciatingly painful, but often go undiagnosed because they do not present with the bulge that typically defines a hernia — and immediately recognised my own condition.
Nine of every 10 groin, or inguinal, hernia repair cases involve men. He typically presents with a tear in his abdominal wall large enough to allow fat or intestine to squeeze into the underlying inguinal canal, causing the telltale hernia bulge under the skin.
The hernia scenario of a man and a bulge is so textbook that many doctors are prepared to find little else. Most hold the common belief that few women get hernias, which is statistically true for now. But until more doctors are trained to consider and find hidden hernias — which are thought to be overwhelmingly more likely in women and often are not reliably taught in medical school — it’s impossible to approximate the true rate of hernia occurrence in the female population. Meanwhile, reports suggest that of the 12 to 20 per cent of women who suffer from chronic pelvic pain, not even half discover its source. Once the usual diagnostic options for pelvic pain are exhausted, a doctor who is not informed about hidden hernias in women might overlook the diagnosis in favour of prescribing other measures, such as pain management or psychological treatment.
Hidden hernias in women are so underconsidered in lieu of psychological problems that even the Mayo Clinic — ranked by some as the No. 1 hospital in the United States for gynaecology — does not include hernias of any kind on its women’s pelvic pain page, though it does reference “psychological factors.” On the other hand, Mayo’s pelvic pain page for both women and men includes hernias but not psychological factors. Asked about this recently, Kelley Luckstein, a spokeswoman for the Mayo Clinic, said her institution would review the matter to “clear up any inconsistencies that exist between the two pages.”
Given all this, it’s unsurprising that a woman with a hidden hernia could, as I did, spend years seeking a diagnosis for her pain. As her resources and stamina dwindle, she’s increasingly in danger of giving up on finding a cure — and that’s before she sees a hernia surgeon, who may not even believe in hidden hernias.
The first surgeon I visited was sceptical. He thought he detected a weakness in my abdominal wall but didn’t order an MRI, which is the next step for confirming a hidden hernia in a woman. “Come back at the end of the summer,” he said. “I’ll muck around in there and see what I can find.” I took his word choice as his way of saying he didn’t want the job.
The second surgeon who examined me — a senior hernia specialist at one of New York’s best hospitals — maintained that hernias must be palpable. When he couldn’t feel one, he informed me that “the search for the source of pelvic pain in women is often fruitless.” I countered with facts about hidden hernias I’d found in studies after reading the initial news article on the condition. He rebuffed me with a blank stare. “You can be as articulate as you want about your problem,” he said, “but you’re wrong.”
As a last resort, I called Shirin Towfigh, a women’s hernia specialist in Los Angeles who had been featured in the article I had found. She suggested I see Brian Jacob, one of New York’s top general surgeons. “He’s what I call a believer,” Towfigh would later tell me.
I made an appointment with Jacob and went to see him at his office on the defensive, armed with hidden-hernia studies and a litany of past grievances.
Jacob listened to my whole story without interrupting. Then he examined me and ordered up an MRI of my pelvis. If it was negative, which can happen with tiny hernias, he would still scope my pelvic floor with a camera and laparoscopically repair any hernias he found. “We’re going to fix you,” he said. And I believed him; he was the first doctor who had known how to connect my symptoms.
To Jacob’s ears, my story sounded familiar: persistent pain in the same spot, a tour of doctors’ offices, superfluous surgeries, clueless specialists, a faceoff with my own sanity. And like other hidden-hernia patients, I had already eliminated my back, hip and pelvis as the cause.
The odds were on my side. Towfigh says that of the 70 per cent of women who see her without a referral from another doctor, “a good 90 per cent of them are right” about having a hidden hernia.
I was abroad on assignment when my smartphone lit up with an email from Jacob confirming that my MRI had shown a tiny hernia near the pain site. I looked at all the people standing around and chatting with friends in the main square of the little town where I was staying and allowed myself to imagine how it might feel to stand like that and chat with friends, pain-free. “I never thought I’d be so happy to have a hernia!” I typed in reply.
Hernia surgery isn’t a sure thing, however, and I had two major risk factors for chronic post-surgical pain, according to studies: being young in comparison to the average hernia patient and having been in pain for years. Even without risk factors, studies have shown that up to one-third of all groin hernia repairs lead to chronic pain, mostly because of nerve damage caused by poor surgical technique when implanting the mesh used to patch the tear, or poor choice of mesh.
The type of surgery also matters, studies have found: laparoscopic hernia repair is more advisable than the traditional open repair for women with suspected hidden hernias, because the pelvic floor can be explored bilaterally during a single surgery, revealing whether there are multiple hernias in need of repair, and more easily detecting the smallest hernias.
In the end, Jacob didn’t find any other hernias beyond the one tiny blip that appeared on my MRI. But he fixed it, just as he had promised. After a few loopy hours in recovery, I walked the six miles home from the hospital without the slightest urge to hail a cab, hoping it didn’t count as the exercise Jacob had forbidden for four to six weeks. For the first time in more than three years, I was finally certain that I had been cured.
I later discovered that my case was far from extended or extreme. Towfigh recalls a woman who had been in pain for 21 years before someone diagnosed a hernia. Her grown son couldn’t remember having seen his mother walk without a limp.
With all the technology available to find and treat hidden hernias — which are just smaller, equally boring versions of bulging hernias — it’s hard to believe they continue to elude diagnosis.
Another patient told me her gynaecologist had removed her ovary, hoping it would end her pain: The loss only hastened her impending menopause.
While a woman with a hidden hernia usually can be quickly cured once the problem is detected and treated, a lasting wound is opened when her reality is denied by trusted medical experts who are uninformed about how a condition as common as a hernia might present in a woman’s body. I have little doubt that if I were a man, the issue would have been identified and dealt with much more quickly.
Even now, my chest tightens at the thought of who I might have become had I accepted my pain-induced limitations instead of insisting on an answer.
“You’re so lucky you are the way you are,” a friend said when it was all over. “If it had been me, I would have been in pain for the rest of my life.”
–Washington Post
