A lifelong struggle with incontinence

Cindy O'Connor, now 65, struggled with incontinence her whole life. For years, she would suddenly feel the urge to pee but couldn't make it to the bathroom in time before urine leaked out, often leading to embarrassing accidents during her childhood.

"I can't tell you how many times I heard, 'Why are you waiting until the last minute?'" O'Connor said, which would lead her to reply, "I don't."

As an adult, her bladder issues worsened, especially after her son was born. She often had to abruptly leave work meetings, stop the car frequently on road trips, and plan walks around where restrooms were available.

Initially, O'Connor's regular doctors just told her that she had an overactive bladder and didn't suggest any potential treatments. However, the condition continued negatively impacting O'Connor's life. After an accident in the car, she and her family no longer went on lengthy road trips.

"It was like my bladder was spasming, my heart was racing, my ears were ringing, and my head was pounding," O'Connor said. "Everything just goes haywire. If I stood up right away, I was done."

In her late 40s, O'Connor met with a new gynecologist who treated her incontinence with a medication called Detrol and then later a surgical procedure to place a mesh sling under her urethra. However, neither treatment worked.

Other medications, such as oxybutynin and Vesicare, also had no impact. Physical therapy, including Kegel exercises, also didn't help. Another urogynecologist implanted a device that acted like a urinary "pacemaker" to stimulate nerves that communicate between the bladder and brain, but all it did was make O'Connor's toes curl.

A new test finally reveals the cause

In 2013, almost four years after she first started treatment for her incontinence, O'Connor met with another urogynecologist named Sarah McAchran at UW Health in Madison, Wisconsin.

When McAchran met with O'Connor, she found two things to be unusual: O'Connor dealt with incontinence since childhood, and numerous treatments had no effect on her bladder issues. After trying two additional drugs, which were also ineffective, McAchran conducted urodynamic tests to measure O'Connor's bladder capacity, pressure, and flow.

According to McAchran, O'Connor's results on these tests were unusual. "She had a very early first sensation to void," McAchran said. "Her contractions got progressively stronger and were all associated with leakage."

After inspecting O'Connor's bladder with a flexible tube mounted with a camera, McAchan saw some trabeculations, or thickening of the wall, which indicate that her bladder was contracting too much. This led McAchran to suspect that O'Connor's bladder issues might be due to an underlying nervous system condition, and she ordered a spinal MRI.

A difficult journey to lasting relief

After receiving her diagnosis, O'Connor was ecstatic and felt like she finally had a response to the ridicule she had experienced because of her condition over the years.

"'See, I told you that it's not my fault; I don't wait too long,'" O'Connor said she told people close to her. "Nobody would listen to me all those years. That was so frustrating."

However, even with a diagnosis, finding an effective treatment was still difficult.

When O'Connor was 53, a neurosurgeon cut the band of abnormal tissue connected to her spinal cord, releasing it. When this operation is performed at a young age, it can prevent bladder and neurological problems. However, the surgery cannot reverse damage that has already been done, which meant that O'Connor's incontinence did not significantly improve.

"If you wait 50 years, there's no way you're going to bring back a bladder that has been damaged over the years," said Bermans Iskandar, a neurosurgeon from UW Health who performed the surgery on O'Connor. "The main reason for the surgery is to prevent additional problems in the future."

Later, McAchran tried injecting Botox into O'Connor's bladder to help relax the muscle and reduce contractions. Although the Botox treatment decreased O'Connor's bladder accidents, it also made it harder for her to urinate and sometimes required her to use disposable catheters. Then, after two years and nine injections, her symptoms worsened again.

Finally, O'Connor was given the option of having surgery to increase the size of her bladder. Even though her bladder would be larger, she would also have to use a disposable catheter every time she went to the bathroom, regularly flush her urethra and bladder with saline solution, and urinate every five or six hours for the rest of her life.

Although O'Connor worried about how she would handle all the requirements as she got older, she ultimately decided to undergo the surgery. In October 2018, McAchran and another surgeon used a piece of O'Connor's bowel to more than double the size of her bladder, which increased its capacity to store urine over threefold.

Since the surgery, O'Connor has only had one accident, when she went over her scheduled urination time while watching a parade in New Orleans. She has also become accustomed to using catheters in her daily routine. "It's natural, it's normal," she said.

She has also been able to travel more since she no longer has to worry about having unexpected bladder accidents. Two years ago, she traveled to Europe with her husband Mike and last summer took a trip to Nashville with her son. She and her husband also plan to fly to California and drive back home along Route 66.

"Mike has always wanted to do that," O'Connor said. "It is something that has never crossed my mind as possible until now."