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Elyse Hausner, age 53, New City, New YorkElyse has suffered with a condition called neurogenic bladder since childhood. "My bladder spasms and misfires. It has a mind of its own," says Elyse. "This is a not a disease that people can see. But it affects your quality of life in a way that people don't realize. When you have neurogenic bladder, in your mind, there's always a risk of public humiliation. There are times when you feel like you don't want to leave your house."
Elyse has had numerous sacral implant surgeries over the past several years to control her neurogenic bladder. But those implants are no longer effective. Her physician in New York referred her to Dr. Kenneth Peters at Beaumont because she believed that his work with the pudendal implant might be the answer to once again getting her bladder under control.
"My goal is to spend a day like anyone else does. Maybe go on a hike, then sit through a movie and dinner, or spend a day on the beach," she says.
"Working full time, as a kindergarten teacher, despite, or in spite of my condition, has been amongst my greatest sources of joy, and what gets me out of bed on really hard days. I am hoping that this new surgery enables me to continue doing my job for quite a while longer."
Kathy (Kat) Medina Nino, age 41, Milwaukee, WisconsinKat was diagnosed in 2010 with pudendal nerve neuralgia after experiencing chronic pelvic pain due to endometriosis and polycystic ovarian disease beginning at the age of 18.
"I have pain throughout my entire pelvis. I wake up with pain. I go to bed with pain. I am always in pain." she says.
Kat has been at the mercy of her constant pain since going on medical leave from her career in advertising two years ago when the pain became so severe that she had to lie down most of the time. "I've lost a great part of my life due to pain - no longer able to do things that most people take for granted and the impact of which many do not understand."
After many doctors, numerous pudendal nerve blocks and enduring both pelvic floor and physical therapy, she continued to look for answers. Eventually Kat learned about Dr. Kenneth Peters at Beaumont Hospital from online research and the glowing recommendation of a current patient of his that she met in Milwaukee.
Kat longs to return to her career in advertising, reconnecting with friends/family and hopes to be able to attain her goal of forming a nonprofit organization committed to helping others through greater awareness of pelvic pain conditions.
McKenna Fromm, age 18, Great Falls, MontanaMcKenna's life changed for the worse on a high school basketball trip 2-1/2 years ago when she called her Mom, Dee-Dee, saying she had excruciating bladder pain. After seeing a pediatrician, a gynecologist and a urologist, she was diagnosed with interstitial cystitis. She tried various medications, had a urodynamic study and trigger point injections to ease her pain. "I was doing all these treatments, but getting worse," she says.
She had a sacral neuromodulation procedure that helped for short time. But then a new type of pain emerged that was a severe burning and aching - like being stabbed with a knife. The cause of her pain was diagnosed as pudendal neuralgia.
"I can't stand, can't sit, can't wear pants. I want to be in a fetal position all the time," she says.
McKenna pushed through her pain to graduate from Charles M. Russell High School in 2013 at the top of her class.
She's attending community college now, but hopes to join her sister as a pharmacy student at the University of Montana in Missoula. She was referred to Dr. Peters at Beaumont by a physician in Montana.
Jon Rivers, age 65, San Diego, CaliforniaA native of Australia, Jon began experiencing "consistent, persistent pain" in her pelvic floor following the birth of her daughter 41 years ago. "I feel like I am in an acid bath … with a burning baseball in my buttock area," she explains.
Her quality of life went downhill. Jon went from being an active person - who swam, walked her dogs, biked and ballroom danced with her husband Ray - to someone who could not move. The pain became so unbearable "it stopped my life," she says.
She's learned to cope by taking strong pain medications, and never going anywhere without ice packs and a tennis ball in a sock to sit on.
"One doctor told me I just have to live with the pain," says Jon, who tried acupuncture and epidural blocks for relief.
Jon was referred to Dr. Peters by her doctor in California and her "pain pal," who came to see Dr. Peters and found relief. "I gave him a hug from her first thing when I met him," she says.
"When you lose all the activities you love doing, you start to doubt yourself," says Jon. "I don't want to stay on drugs. That's not a way to live your life."
Jon and her husband of 30 years, Ray, a ballroom dancing coach, used to dance and do shows together. But the thought of dancing now is unbearable for Jon.
"I want to dance with Ray again. It would be so precious," she says.
Kathryn Lang, age 47, Bellevue, NebraskaKathryn Lang's interstitial cystitis symptoms came on all at once in 2006. A former hospital administrator, it robbed her of her career and her life.
"This is not just about going to the bathroom a few times more a day. It also affects your bowels and your central nervous system." she says. "Every nerve ending in my body constantly fires which affects every muscle throughout my entire body, creating unbearable pain that goes on all day, all night. I have not slept more than 20 minutes at a time in years."
Kathryn has had multiple surgeries, procedures and botox injections in addition to physical therapy and pain management. She's seen dozens of doctors of various specialties.
"I am on some very strong medications that when they are in your system, you cannot drive. So you become very isolated. Little by little, this disease kills you. You just don't die," says Kathryn. "Early on, the doctors I visited brushed off my symptoms or told me I just had to deal with the pain / disease. My family had trouble understanding my situation, further deepening my feelings of isolation. "
Her doctor started calling around the country to see what else could be done before doing a surgery to remove her bladder and urethra. Her doctor had done his residency at Beaumont and trained with Dr. Peters years ago.
"I'm here because I have tried every medical treatment that was available in the city of Omaha by a very well-skilled and trained urologic surgeon … and Dr. Peters and Beaumont Hospital is my last hope," explains Kathryn.
"If this procedure works, I will be more grateful than you can imagine. My hope is that I can make it an hour without having to use the restroom. My hope is that I can sit and have a conversation and not think about where the bathroom is for 5 minutes, or I can get into a car and visit my brother, his wife and my three nephews who live 20 minutes away in Omaha without having to stop multiple times."