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A mysterious pain syndrome pushed her almost to the breaking point, but Megan wouldn't stop fighting until she got answers
For months, a "good" day for Megan Duffy meant one that didn’t end with her curled up on the bathroom floor.
She had fallen into a cycle that came to feel achingly familiar. She would develop what she described as symptoms of a urinary tract infection: burning, urgency, a heaviness in her abdomen, cramping. She would go to urgent care, submit a urine sample, and leave with a prescription for antibiotics.
Sometimes she felt better for a few days while taking the medication, but her symptoms would inevitably return and she'd be right back on the floor, with a heating pad covering whatever part of her body hurt the most.
"I feel exhausted, I don’t want to be awake right now," she remembers thinking. "I just want this to be over. I just want someone to, like, take all of my reproductive organs and toss 'em."
Curiously, the urine cultures from her many doctors' visits never grew any bacteria.
Megan's life was in transition while all this was happening. She had just finished her PhD, in Neuroscience, and survived a grueling dissertation defense. In a few months she would be relocating from Michigan to Washington, D.C. to start her "dream job" at the National Institutes of Health.
She was prone to stress, and put tremendous pressure on herself to succeed. She also had a history of anxiety and depression and had been in therapy and on medication for both. A high-achiever by nature, she was a daily presence at the gym and regularly competed in Tough Mudder races.
"You just want to go to sleep, because that's the only time you don't feel anything."
Initially, she thought what she was experiencing was at least partially the result of intense stress. The waxing and waning of her symptoms did roughly correlate, at times, with periods of high anxiety. She remembers feeling miserable just before a post-doc interview in Philadelphia, and again leading up to her dissertation defense. Both times, the symptoms subsided somewhat after the event, once she allowed herself to relax. But they never fully went away, and they started to take a toll.
"You completely check out," she recalled, looking back on what was then still a mystery illness. "You're so tired all the time, one from depression and anxiety fighting each other, and then you have all this physical stuff on top of it that is just sucking the life out of you."
"You just want to go to sleep, because that's the only time you don’t feel anything."
Megan's mother, concerned about her daughter’s well-being, came to stay with her and provide support. Megan remembers waking up every day and checking in with herself. "Oh, I feel kind of normal," she would think for the first five to 10 minutes of her morning. She'd start to feel optimistic: "Maybe today's the day." But then the heaviness, fatigue and dull, persistent pain would return, and she would withdraw back into herself, regretting ever having woken up.
"My mom would try to get me to go out, go for a walk," Megan recalls, but she was reluctant. "I was scared to go anywhere where I did not have a bathroom accessible to me within a few minutes." She became a "total hermit," she said.
She continued going back and forth to different clinics, mainly primary and urgent care. Her urine cultures continued coming back negative. One doctor suggested she might have interstitial cystitis, a chronic inflammatory condition of the bladder which causes pain and can be difficult to treat.
Convinced that this was the most probable diagnosis, Megan's head started spinning. She read that coffee can exacerbate the symptoms, so she resolved to eliminate it from her diet. In fact—a scientist through and through—she started considering the pH of everything she put in her body, and whether its acidity or alkalinity might further upset her constitution.
"I felt like I was legitimately losing my mind," she said.
She was referred to a urologist. They did a bladder ultrasound. At that point, desperate for answers, Megan hoped it would come back abnormal. It didn't.
"It was infuriating," she said. "I think I would have rather had a raging UTI."
The nature of her syndrome changed: It felt less like a UTI, and more like someone was stabbing her in the belly.
Unfortunately, Megan couldn't put her life on hold while she awaited a diagnosis. Her new job was starting soon; she would just have to tough it out. The stakes were high at NIH, or at least it felt that way. She would be starting again at the bottom of the totem pole, and she was eager to prove her worth to the organization, which she had long held in high regard.
The start of her new job coincided with a sharp uptick in her symptoms ("That's when shit hit the fan," as Megan recalls). The nature of her syndrome changed as well: pain was now the predominant symptom. It felt less like a UTI, and more like someone was stabbing her in the belly. It was "unbearable," she said, like "having really bad period cramps every day," both during and in between her menses.
She found herself unable to fully concentrate on her work. "Half my brain was somewhere else," she said, drawn away by the storm raging inside her body. She was determined to impress at her new job, but she was not able to operate anywhere near her full potential. And she was loath to take any sick days, worried it might hurt her reputation as an industrious employee and team player.
"I was really just going through the motions," she recalled. "I would get up, I'd be in tears on the Metro on the way in, then put on a face all day, then feel relief when I got home."
She was having panic attacks during the day and spending many nights on the cold bathroom floor. She started seeing a new primary care doctor, who put her back on an antidepressant.
Things couldn't go on this way for long, Megan thought. She wouldn't last a year in her current condition.
It started to feel like she was being "gaslit," Megan said.
As the months passed in her continuing search for answers, Megan began to suspect that she might be the only one genuinely interested in getting to the bottom of her medical issues. She sensed that the providers she was seeing—not all, but some—were starting to take her less seriously. It felt, she said, like she was being "gaslit."
While a firm diagnosis remained elusive, her symptoms were repeatedly misattributed to her underlying anxiety, or dismissed altogether. Megan saw it for what it was: in essence, she was being labeled a hysterical patient.
"I get where people are hesitant to disclose that they have anxiety or depression" to their doctors, Megan said. "Because for some people, I might as well be holding a sign up that says 'Don’t take me seriously.'"
The providers' attitude, Megan said, was "you're a woman, you've come in repeatedly with pelvic pain and UTI symptoms, nothing is wrong. Just go home and take some ibuprofen and calm your stress down."
"Some doctors see that as something to default to when something's wrong and they can't figure out what it is," she said.
One experience in particular crystallized this notion.
Once it became apparent that her condition couldn't be written off as recurrent UTIs, Megan was referred to a gynecologist, where she underwent a pelvic ultrasound. It revealed a cyst in one of her ovaries. However, cysts are common, most do not cause symptoms, and they can come and go with a woman's menstrual cycle. The gynecologist, not convinced that this was the source of Megan's pain, ordered a repeat ultrasound a month later. The cyst was gone. Once again, for Megan, this result provided not reassurance but rather more agonizing uncertainty—another question left unanswered.
Megan prides herself on being tough, but this was a breaking point for her. She remembers sitting in the doctor's office and being told the result of the ultrasound. The doctor summarized the extensive—and largely negative—workup that had been done to date, and offered her own analysis: "I think you may just need better stress coping strategies."
That, Megan said, was "the straw that broke the camel's back."
"I immediately got really hot. I don’t know if it was because of rage." Feeling overwhelmed, and emotionally drained, she closed her eyes and put her head down on the doctor's desk. She needed a minute to tune out the world around her.
A nurse, thinking she had passed out, stuck smelling salts under her nose. The doctor left the room to give Megan time to compose herself. "I left the office in a total, absolute defeated rage," Megan said.
As many patients do when they're not getting satisfactory answers from their doctors, Megan turned to the internet and started doing her own research. She "Googled till the cows came home," she said. She found countless forums and support groups for women with chronic pelvic pain. She read stories about people who, like her, had been back and forth to various specialists, coming up empty-handed each time, and in the meantime living through debilitating symptoms. Many had gone years, even decades, without a diagnosis.
Through her searches, Megan started connecting the dots. Her symptoms seemed to align almost perfectly with a condition which had not been proposed or explored by the various professionals she had seen. Each time she read more, her mind circled back to a single diagnosis: Endometriosis.
Endometriosis is a disease in which tissue that resembles the lining of the uterus—the endometrium—implants in parts of the pelvis outside the uterus, such as the ovaries and fallopian tubes. Like the endometrium, this tissue responds to the hormone fluctuations of menstruation by expanding and bleeding, which can cause pain.
"If I wrote down all the symptoms that I'd been experiencing for a year," Megan said, "and you look at the endometriosis symptoms list, they're identical."
In some cases, endometriosis can be diagnosed by clinical history and imaging, but the best and most definitive way is by direct biopsy, which requires surgery. Thus, the barrier to diagnosis is high, and the disease remains widely undetected. Treatment typically involves either hormone therapy to interrupt the signaling pathways that feed endometriosis implants—a temporary fix—or removal of implants by a surgeon. Success rates vary, even with surgery, because the painful lesions can return and multiply at any time.
Megan found a gynecology practice near her that specialized in pelvic disorders. She scheduled an appointment. To her relief, after reporting what she'd been going through the past year, the doctor agreed that endometriosis was a possible, even probable, explanation. She recommended a laparoscopy for diagnosis, and, if lesions were found, to excise them.
Megan's wedding was approaching in a few months, so she scheduled the surgery for several days after her honeymoon. Some of her wedding photos clearly display her "endo belly," a bloated, distended abdomen. "There are times where I look three or four months pregnant," she remembers.
She was apprehensive about surgery. But what worried her even more was the prospect of another normal result. "What if," she thought, "I have this done and they don't find anything?"
"I could get an answer, or it could just be another, 'Hey, we have no idea,'" Megan said. "That was what I was most scared of."
Women commonly go years before they're told what they have, and many more remain undiagnosed their whole lives.
Her surgery day arrived. Her most vivid memory was from afterwards, in the recovery room. She woke up, and there was the gynecologist. Her brain, still foggy from anesthesia, instantly snapped to attention at hearing the words: "You definitely have endometriosis."
Megan broke down crying. She was overcome with relief, and a sense of vindication. It didn't bother her that she had just been diagnosed with a condition with no definitive cure, that could relapse spontaneously and without warning. "I was so happy just to be able to put a name to it," she said. "Just having the name was I think even more powerful than them actually removing it."
"It's so screwed up that I'm happy to have this thing that could have lifelong implications. But I'm not insane. I'm not insane."
Her recovery from surgery was brisk, and her symptoms all but disappeared. So, too, did her mental health challenges. "My anxiety is pretty much non-existent," she said. She was finally able to hit her stride at work and is thriving there.
Despite what she had to endure, Megan considers herself one of the lucky ones. All told, her time to diagnosis of endometriosis was relatively short—women commonly go years before they're told what they have, and many more remain undiagnosed their whole lives.
Megan credits her access to high-quality health care, as well as her own self-advocacy, as reasons why her story was able to end happily. Had she not demanded answers, and pushed as hard as she did, and took on much of the heavy lifting herself, the outcome could have been dramatically different.
"It took six or seven months for me to even come across the word 'endometriosis,' and I did that on my own," she said. "Had I not gotten diagnosed when I did, I have no idea where I'd be right now. I don't think I could've continued to function."
Megan remains active on social media, sharing her experience with endometriosis and offering support and guidance to others who are going through struggles similar to hers. Her primary message is aimed at those who may feel uneasy about confrontation: Don't hesitate to challenge your providers if you're not getting the care you need. And secondly: It gets better, once you find help.
It feels good, she says, to be able to use her story to show other women that there is light at the end of the tunnel.
"It was hell for a year," she said. "I don’t want anybody else to have to hurt like that."