Jon Rivers’ life started to change drastically in her mid-40s.
She noticed she was frequently having to urinate to the point where she was waking up three times a night.
Then the pain started.
“Life was governed by pain and piddling,” Rivers said during an Oct. 8 press conference at Beaumont Hospital.
She described it as a searing pain that went from her buttocks down the length of her leg.
When the 65-year-old San Diego woman went to bed or when she went out to restaurants, Rivers would have to sit on ice packs to help dull the pain.
The ballroom dancing that her and her husband, Ray, had enjoyed doing became impossible.
“The pain is so searing that you can’t — you just can’t — cope with it,” she said.
Essentially, her pudendal nerve — the nerve that controls much of the pelvic region — was inexplicably being overstimulated. The couple went from doctor to doctor, all telling her that she had better get used to the pain because they could not find a long-term solution.
It wasn’t until she found a doctor that referred her to Dr. Kenneth Peters, the director of the Women’s Urology Center at Beaumont, that she found relief from the pain.
Rivers was one of five women from five different states to come to Beaumont Sept. 24 to undergo a procedure called pudendal neuromodulation that the hospital says is attracting patients from not only across the country, but from across the world.
Essentially, a tiny electrode is attached to the pudendal nerve in the pelvis.
Peters, who pioneered the procedure after several research studies starting back in 2004, described the neuromodulation as a pacemaker for the pelvic nerve.
“When a heart signal goes bad, you put a pacemaker in to control it,” Peters said. “This is the same thing for the bladder. When those nerves aren’t functioning, we’re putting a pacemaker in to override the abnormal signals.”
Since 2004, knowledge on the procedure has spread.
“It’s the same nerve that controls the bladder and bowels,” Peters said. “So with one procedure, we can improve all these different symptoms.”
The hospital says it has treated patients from 26 states and four countries this year, but to have five patients from five states treated in one day was unusual, according to Peters.
In addition to Rivers, the women came from Nebraska, New York, Wisconsin and Montana and ranged in age from 18 to 65.
The five patients were back in Royal Oak last week to have the electrode permanently implanted after a two-week trial and spoke to the press about their experiences.
McKenna Fromm, 18 and from Montana, said she first experienced bladder issues two and half a years ago when she was on a high school basketball trip.
She was diagnosed several times and even underwent a couple different procedures, but the pain worsened, forcing her to quit basketball and several other student activities. Despite it, she graduated from high school at the top of her class.
It wasn’t until the summer that she was diagnosed with pudendal neuralgia and was recommended to Peters for the electrode treatment. While the surgery dates prevented her from attending the university she wanted to attend this fall, Fromm doesn’t regret the decision.
“I’m so glad that I made that choice because I could have been much, much worse,” Fromm said.
Donna Carrico, a nurse practitioner from the hospital’s Women’s Urology Center, said most insurances will cover the procedure.
“All of these women were covered by insurance,” Carrico said. “We do have some patients who come from other countries, and they are a cash-pay situation."
Peters said that patients will know within a week or two if they’ll respond positively to the treatment. So far, he has had an 85 percent success rate with the procedure.
With the positive results, Peters is trying to spread the word to other physicians around the world about pudendal neuromodulation. The hospital has hosted three separate continuing education courses on the subject, Peters said.
As for Jon and Ray Rivers, the day after the electrode was permanently implanted, the couple took the opportunity to dance inside the hospital together for the first time in more than a decade.
“The pain that I suffered (Ray) suffered with me, because he couldn’t take it away,” Rivers said.
Those looking to schedule a consultation at the Women’s Urology Center can call (248) 898-0898.
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