Losing control of one’s bladder or bowels is a humiliating experience at any age. But Shari Henry Stetson, 61, had to endure another indignity: no one seemed to believe her.
“When my doctor wouldn’t refer me to the specialist that I knew could help with my problem, I had to become my own advocate,” said Shari.
Shari never let embarrassment stop her from asking for the care she needed and deserved. After years of frustration, her persistence paid off. Shari is in charge of her own body again thanks to the compassionate care of two Ascension Illinois specialists in urogynecology, female pelvic medicine and reconstructive surgery based in the Hoffman Estates area: Fareesa Khan, MD and Marko Jachtorowycz, MD.
Urogynecologists are doctors for female incontinence
Shari’s first bout of urinary and fecal incontinence happened, violently and without warning, in 2019. She was cleaning student dormitories for a university in central Illinois during the summer months.
Shari is blunt about what happened to her: “No woman should have to [redacted] their pants on the job in a civil service position. You have no idea what it’s like having to find an empty bathroom and then dispose of your soiled linens because you can’t leave the job without getting written up.”
These bouts of incontinence soon became a daily occurrence for Shari. She did her best to plan around it. She tried medication and pelvic floor exercises. She used the restroom before leaving the house, wore protective liners and kept a change of clothes handy. But no matter where Shari was — at work, out walking, shopping for groceries — it kept happening.
Shari was not as alone as she felt during the worst of it.
“According to the National Institutes of Health, approximately 44.6% of women experience urinary incontinence at some point in their life,” said Dr. Jachtorowycz. “And approximately one in twelve experiences fecal incontinence. The likelihood increases with age.”
Shari at least had one advantage over many women in her situation. She knew from personal experience that there was a type of doctor who could help her. Shari still remembered the name of the urogynecologist who repaired her prolapsed uterus after she’d had her third child in 2005.
“Urogynecology is a female-focused medical specialty that combines gynecology, urology and reconstructive surgery,” said Dr. Khan.
This combination of expertise helps treat certain medical problems more efficiently.
“Incontinence falls into a sort of no man’s land between urology, gynecology and gastroenterology,” said Dr. Jachtorowycz. “Urogynecology offers a single point of care for female incontinence, as well as common pelvic issues such as when an internal organ slips down into the vagina after childbirth.”
After numerous difficulties getting a referral for a urogynecologist covered by her insurance, Shari finally met Dr. Khan. When she found out that Dr. Khan used to work with the doctor who’d repaired her uterus, she broke out in tears.
“I knew I was where I was supposed to be.”
Sacral neuromodulation for urinary and fecal incontinence
Together, Shari and Dr. Khan considered treatment options, which included peripheral nerve stimulation and BOTOX injections. Shari chose sacral neuromodulation.
A sacral neuromodulator is a medical device the size of a flash drive connected with wires to the S-4 sacral nerve, which is located above your tailbone. These nerves tell your body when it’s time to go to the bathroom. If your brain is sending the wrong signal to your bowels and bladder (as was the case with Shari), the medical device blocks the signal. Though sacral neuromodulation was designed to treat overactive bladder, the U.S. Food and Drug Administration determined that it could safely treat fecal incontinence, too.
It helped that Shari was already implanted with a similar device from the same manufacturer, a neuromodulator that alleviated her chronic back pain.
“I called the manufacturer and asked, ‘do these come in stereo?’” remembered Dr. Jachtorowycz. The manufacturer confirmed that the two devices could be used together safely.
In early June 2023, Shari’s brother drove her the two hours to Ascension Saint Alexius in Hoffman Estates for the first of her procedure’s two phases. As she lay on her stomach, Dr. Jachtorowycz and his team numbed the skin over her spine and then guided two test wires to Shari’s sacral nerves with an X-ray.
Although this can be a straightforward step, the curve in Shari’s spine had altered the position of her sacral nerves, so the team needed multiple attempts before they got the wires in the correct spot. Shari reported that this part of the procedure was painful for her, but she knew when they found the right spot.
“I sat up and yelled ‘Bingo!’”, Shari recalled, laughing. “All the nurses had tears running down their faces, we were all laughing so hard.”
The results were worth the discomfort — Shari’s incontinence vanished, immediately and almost completely.
“Typically, we select a frequency and amplitude as our starting point, then adjust as needed after a seven-day test period,” said Dr. Jachtorowycz. “In Shari’s case, we got really lucky because the very first combination we chose worked.”
Shari went home the same day she received her temporary device. After a successful test week, she returned to get it swapped out for the permanent version, which was implanted under the skin of her upper buttock.
The permanent device allows Shari to change its stimulation level as needed via phone app or the sleek remote control by her bedside. Shari will periodically need to have the device’s settings adjusted to keep it effective, but Dr. Jachtorowycz and his team will try to do it over the phone to spare her the two-hour drive.
No woman has to live with incontinence
Now that her urinary and fecal incontinence is under control, Shari wants to keep other women from going through the humiliation and stress that she did. So far, Shari has gotten the word out to several of her female coworkers, and recommended Drs. Khan and Jachtorowycz to them.
“There are women out there who just don’t know what’s wrong with them,” said Shari.
Dr. Khan wishes more women were like Shari.
“The biggest barrier to treatment for incontinence is that many patients feel too embarrassed to bring it up with their doctor,” Dr. Khan said. “If you are a woman experiencing incontinence, don’t gloss over it or underplay it. Tell your doctor that it is a problem for you and that you are open to seeing a specialist about it.”
“Know your body,” Shari urged. “Toot your horn and don’t stop tooting. Don’t give up.”