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Anyone who’s had a urinary tract infection knows how pesky and painful they can be, especially for those of us who’ve experienced recurrent UTIs.
But what if your recurrent UTIs weren’t UTIs at all, but something much scarier?
That’s what happened to Lanie Bayliss, a woman who, “after years of suffering kidney infections and intermittent UTIs as a young woman,” thought her bout with lower-back pain at age 28 was just another UTI. But after two misdiagnoses and unrelenting pain, Bayliss knew she was dealing with more than just a bladder infection.
Bayliss was soon diagnosed with a borderline ovarian tumor, which is a non-invasive epithelial tumor, according to Elena Ratner, MD, MBA, a board-certified gynecologic oncologist and professor in the Department of Obstetrics, Gynecology, and Reproductive Sciences at Yale University School of Medicine. This particular type of tumor, epithelial, means that it develops in the tissue surrounding the ovaries. “[Borderline ovarian tumors] typically have a good prognosis, with a high rate of survival,” says Dr. Ratner. She also points out that borderline ovarian tumors “usually do not need chemotherapy.”
To learn more about Bayliss' multiple misdiagnoses and why she eventually needed surgery to treat her borderline ovarian tumor, read her story below:
When a UTI isn’t a UTI
Initially diagnosed with a urinary tract infection and ordered to take antibiotics, drink water, and “take it easy,” Bayliss ended up in the emergency room just a few weeks later, "in absolute agony.”
Once again, Bayliss was diagnosed with yet another UTI and sent home. But with her lower-back pain refusing to subside, Bayliss couldn’t ignore her body any longer. She made an appointment with a female doctor, and, to hear her describe it, this was one of the smartest medical decisions she made: “I had only seen male doctors and medical staff [before], and I felt I wasn’t being seen or heard,” Bayliss tells Rescripted. “I will always be thankful to [this female doctor]. She listened to what I was saying and validated how I was feeling. I’d hate to think how long it would have taken to get answers if I hadn’t seen her.”
This female physician examined Bayliss' abdomen after listening to her symptoms and then referred her for an ultrasound. After the ultrasound, Bayliss was quickly referred for an MRI and subsequently a CT scan.
As it turns out, there was a “mass” on Bayliss' left ovary, but the only way to know for certain what was going on was for Bayliss to undergo surgery. This is because a borderline ovarian tumor diagnosis can only be made by microscopic assessment after surgery, which includes removal of either the mass alone or the affected ovary and fallopian tube.
Treating a borderline ovarian tumor
What had begun as a rushed UTI diagnosis now had Bayliss reassessing her entire future, and facing the prospect of not being able to have children: “I was suddenly worried about my future fertility,” she says. “I had so many questions, and I felt overwhelmed with the possibilities of what this mass could be. I felt my world crumble around me in the time leading up to the operation.”
Considering Bayliss hoped to get pregnant someday, the very idea of surgery on her reproductive organs was an understandably frightening thought, despite its necessity: “The primary treatment [of borderline ovarian tumors] is surgical removal of the tumor,” confirms Dr. Ratner. Since some of these tumors can recur, Dr. Ratner says the “key is to take it out completely surgically.” She also says, "long-term follow-up with periodic imaging may be recommended to monitor for recurrence.”
To the credit of Bayliss' medical care team, they promised her that they would do their best to preserve her ovaries/reproductive organs. “I was kept informed at every stage of the process and never felt like a question I asked was redundant or stupid,” Bayliss says. Her fertility fears were a valid concern and should always be addressed with your healthcare team. If fertility preservation is a priority, then you may want to discuss conservative treatment options, such as non-invasive/non-surgical procedures that can help preserve an unaffected ovary as well.
In October 2017, Bayliss had a serous tumor – a type of borderline ovarian tumor – removed along with her left ovary. Although Dr. Ratner says borderline ovarian tumors “are generally slow-growing,” they “frequently can get to be very large.” In Bayliss' case, hers had “grown to the size of a large orange and was infused with my ovary.” As Bayliss tells Rescripted, one of the reasons why her left ovary had to be removed as well was because her medical team “couldn’t tell what part was tumor and what part was ovary.”
You are your best medical advocate
Bayliss' surgery was a success, and for nearly all borderline ovarian tumors, surgery is the only required treatment. Despite her worries that she wouldn’t be able to get pregnant and deliver a healthy baby, Bayliss did just that a few years later.
But her experience is yet another example of how being your own medical advocate is imperative. Who knows what would’ve happened to Bayliss if she hadn’t found that compassionate female doctor who actually listened to her concerns? Would she just have been plied with more antibiotics and dismissed with another UTI? “I was angry with the men in the medical industry that made me feel like I had to shout to be heard,” she tells Rescripted.
But she shouldn’t have to shout to be heard, and neither should anyone else.
Unfortunately, when it comes to borderline ovarian tumors, there is “no way to prevent this type of tumor,” says Dr. Ratner. And as for how Bayliss was twice misdiagnosed in the first place? Dr. Ratner does acknowledge that sometimes the tumor “can press on the bladder and be misinterpreted as a UTI,” so “good communication with the doctor to explain what [the patient] feels” is imperative. She also recommends that patients notice if they’re experiencing any new symptoms, like bloating, or bowel and bladder issues. That level of vigilance can help ensure they receive the correct diagnosis.
The bottom line is that patients must advocate for themselves in any medical setting, whether it’s a fast-paced emergency department or the doctor’s office. It could mean the difference between sickness and health.
Sarene Leeds holds an M.S. in Professional Writing from NYU, and is a seasoned journalist, having written and reported on subjects ranging from TV and pop culture to health, wellness, and parenting over the course of her career. Her work has appeared in Rolling Stone, The Wall Street Journal, Vulture, SheKnows, and numerous other outlets. A staunch mental health advocate, Sarene also hosts the podcast “Emotional Abuse Is Real.” Subscribe to her Substack, the Critical Communicator, and follow her on Instagram, BlueSky, or Threads.