From as early as she can remember, Cindy O’Connor couldn’t control her bladder. She would suddenly feel the urge to pee and couldn’t make it to the bathroom before urine leaked out.
In kindergarten, the Wisconsin resident wet her snow pants, which froze to a ledge as she sat outside of school. In seventh grade, a teacher who thought she was faking the need to go stopped her in the hallway, where, surrounded by classmates, she soaked her jeans. When playing outdoors with friends, she would run to a neighbor’s weeping willow and relieve herself under its wispy branches.
Kids called her “pee-britches,” and her parents scolded her. To reduce the need to urinate, she stopped drinking water, only to develop cramps from constipation.
As an adult, especially after the birth of her son, the problem got worse. She had to abruptly leave work meetings, stop the car frequently on road trips and plan walks around available restrooms. Her regular doctors didn’t suggest any treatment for what they said was an overactive bladder, so she wore absorbent pads and figured she had to live with incontinence.
Other doctors eventually prescribed medications and implanted two devices to try to resolve the issue, but the approaches didn’t help and had side effects. It wasn’t until O’Connor saw another specialist, who ordered a test other doctors hadn’t, that she was diagnosed with a rare condition that is typically caught at a much younger age.
“I wish they would have figured it out years ago,” said O’Connor, now 65. “I wonder what things would have been like to have that normalcy.”
Lifelong struggle
O’Connor’s childhood memories are marked by urinary accidents.
Her parents told her Santa wouldn’t leave gifts if he caught her up at night. Afraid to go to the bathroom, she often wet the bed on Christmas Eve. At the annual carnival in Belleville, the small town south of Madison where she grew up and still lives, she got stuck on a Ferris wheel and couldn’t hold her pee. After accidents at school, she would walk home during recess to change clothes.
“I can’t tell you how many times I heard, ‘Why are you waiting until the last minute?’” O’Connor said.
“’I don’t,’” she would reply.
When the trouble didn’t go away after her teens, she told doctors about it at visits for other complaints, but they didn’t focus on her incontinence. After her son was born when she was 21, she developed endometriosis, which is when tissue similar to the uterine lining grows outside of the uterus. She underwent a hysterectomy a few years later. Her abnormal bladder seemed like a secondary concern.
As she raised her son, helped her husband, Mike, start an insurance business and cared for her father before he died of lung cancer, O’Connor adapted to her uncontrolled peeing. On morning walks, she and Mike would go by the fire station, their church, a park, a laundromat and a bar — all of which had bathrooms open early — so she could dash in when necessary.
But the condition was more than a nuisance. After Mike struggled to pull the car over in time, they stopped taking lengthy road trips. Sometimes the urge to pee was so overwhelming that O’Connor’s whole body would tremble. Unless she calmed herself, an accident was inevitable.
“It was like my bladder was spasming, my heart was racing, my ears were ringing, and my head was pounding,” she said. “Everything just goes haywire. If I stood up right away, I was done.”
Unhelpful treatments
In her late 40s, a change in health insurance led O’Connor to see a new gynecologist. The doctor treated her for incontinence with a medication called Detrol. It didn’t help and made O’Connor’s constipation worse.
The gynecologist surgically placed a mesh sling under her urethra, which can ease some kinds of urinary incontinence. But O’Connor’s bladder was nicked during the procedure, requiring her to use a catheter for 12 days. The sling made it hard for her to urinate, so after three months the doctor cut the device to release its tension.
O’Connor tried oxybutynin, another drug for overactive bladder, but it didn’t help and caused dry eyes and blurry vision. She went to another doctor — a gynecologist with training in urology — who prescribed a drug called Vesicare, which had a similar effect. Physical therapy, with Kegel exercises, wasn’t beneficial.
The urogynecologist implanted a device that acts like a urinary “pacemaker,” using electrical pulses to stimulate nerves that communicate between the bladder and the brain.
The device didn’t lessen O’Connor’s bladder symptoms. Instead, it activated another part of her body. “It made my toes curl,” she said.
A new test
In 2013, nearly four years after her first treatment, she saw another urogynecologist, Sarah McAchran, at UW Health in Madison. McAchran, a urologist with training in gynecology, found two things about O’Connor to be unusual. Her incontinence had persisted since childhood, and she hadn’t responded to numerous treatments. McAchran tried two additional drugs, which were also unsuccessful: Mirabegron, which gave O’Connor headaches, and Gelnique, a topical form of oxybutynin, from which she broke out in a rash.
McAchran conducted urodynamic tests, in which catheters, electrodes and fluids measure bladder capacity, pressure and flow. O’Connor’s results were unusual. “She had a very early first sensation to void,” McAchran said. “Her contractions got progressively stronger and were all associated with leakage.”
Using a flexible tube mounted with a camera, McAchran inspected O’Connor’s bladder and saw some trabeculations, or thickening of the wall, which suggests the bladder was contracting too much. “It can be a sign that the bladder has had to work harder than it should to try to get urine out,” McAchran said.
Suspecting an underlying nervous system condition, McAchran ordered a spinal MRI. The scan revealed that the tip of O’Connor’s spinal cord was low and that a band of tissue between the tip and her tailbone appeared abnormal, indicating a condition called a tethered spinal cord. In the disorder, the spinal cord attaches to the spinal canal instead of flowing freely. Body movement causes the spinal cord to stretch too much, which can interfere with signals between the brain and the bladder.
The condition can be caused by scar tissue from surgery but is often present at birth, when it is associated with spina bifida occulta, a mild version of a birth defect that can cause serious disabilities. O’Connor almost certainly was born with her tethered cord; many children who have it are diagnosed at a young age. But in a middle-aged woman, “you have to think about it to diagnose it,” McAchran said. “There’s so many other, more common … reasons for a woman to have incontinence that you would focus on those first.”
When she heard the diagnosis, O’Connor was ecstatic. She finally had a response to the ridicule she had endured.
“’See, I told you that it’s not my fault; I don’t wait too long,’” O’Connor said she told those close to her. “Nobody would listen to me all those years. That was so frustrating.”
Finding comfort
Despite getting the diagnosis, a remedy did not come easily. When O’Connor was 53, a neurosurgeon cut the band of abnormal tissue connected to her spinal cord to release the cord, confirming during the procedure that the cord had been tethered. The operation, when performed at a young age, can prevent bladder and neurological problems.
The surgery relieved O’Connor’s lower back pain, another symptom of her tethered cord, but it didn’t significantly improve her incontinence. That is because the procedure can’t reverse damage already done, said the neurosurgeon, Bermans Iskandar, of UW Health, who normally operates on children.
“If you wait 50 years, there’s no way you’re going to bring back a bladder that has been damaged over the years,” Iskandar said. “The main reason for the surgery is to prevent additional problems in the future.”
McAchran turned to Botox, injecting purified botulinum toxin through O’Connor’s urethra into her bladder to relax the muscle and reduce contractions. At first, the treatment decreased accidents, even though it made it harder for O’Connor to urinate and sometimes required her to use disposable catheters. But the benefit of the injections, given nine times over more than two years, diminished. “The spasms came back just as hard,” O’Connor said.
The last option was surgery to increase the size of her bladder. It would require her to use a disposable catheter every time she went to the bathroom, regularly flush her urethra and bladder with saline solution, and urinate on schedule, every five or six hours, for the rest of her life. She worried about how she would do those things as she got older.
But on a trip with Mike to Door County, Wisconsin’s version of Cape Cod, she had an accident at a restaurant. As their retirement years approached, she wanted to travel without worrying so much about her bladder.
She decided to have the operation. In October 2018, during the five-hour procedure, McAchran and another surgeon used a piece of O’Connor’s bowel to more than double the size of her bladder, increasing its capacity to store urine more than threefold.
Since then, O’Connor has had only one accident, when she exceeded her scheduled urination time while watching a parade in New Orleans. She has acclimated to using catheters in her daily routine. “It’s natural, it’s normal,” she said.
For much of her life, she struggled with low self-esteem, sensing that people were laughing at her because of her condition. “It wasn’t a death sentence, but it sure wasn’t fun,” she said.
Now, after retiring in September as office manager for Mike, she is embracing a more unencumbered life. She went with Mike to Europe two years ago, took a trip to Nashville last summer with her son and is regularly playing with her granddaughter, who is nearly 2. She and Mike plan to fly to California and drive back along Route 66.
“Mike has always wanted to do that,” she said. “It is something that has never crossed my mind as possible until now.”
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