As she thinks back to her 20s and 30s, Angie Sorensen can see now that she suffered from a major health problem.
She would visit the emergency room once or twice a year with all the symptoms of a kidney stone, but the doctors would order computed tomography (CT) scans and not find anything. They told her she must have passed the kidney stone, sent her home, and then she would recover.
Angie now knows, at age 42, that all those supposed “kidney stones” were actually symptoms of loin pain hematuria syndrome (LPHS), a rare pain syndrome that is characterized by unexplained flank pain and blood in the urine. Over the last three years, it took her longer and longer to recover from these painful incidents, and her pain became a more permanent part of her life.
She had undergone a partial hysterectomy in 2012 as a treatment for endometriosis, and in 2018, doctors removed her right ovary as well. Still, she said, “My kidney felt just too big for its place. It felt like it was being squeezed.”
Angie, who lives in Ulen, MN, sought help at a local pain clinic, and that was where she first heard about LPHS. After Googling the condition, she found many women who had sought treatment at the UW Health Renal Autotransplant Program, but she didn’t feel quite ready for the treatment they had undergone. Doctors had removed their kidney and ureter and replaced it elsewhere in their abdomen, thus eliminating the pain.
“I called UW Health during the summer of 2020, hoping to find a doctor who could help me take care of my pain for a while,” she said. “The staff members were amazing to me and said I would probably be a candidate for renal autotransplant surgery, but at that point, I didn’t feel like I was ready for that.”
She continued seeking help at other medical centers closer to home, but when she mentioned the renal autotransplant to those doctors, they told her it was too extreme of an option, and she was better off just living with the pain. She found one doctor who offered to treat her by installing a pain pump in her body, but to do that, she would need to eliminate her pain medications for two weeks.
Going off pain medications completely was unthinkable to Angie, so she was back at UW Health in summer 2022, talking with transplant surgeon Dr. David Foley and his team. “I sat in a room talking with them, and it was the first time I felt like a person in a really long time,” she said. “Dr. Foley was so compassionate and understanding, and he really felt this surgery would be right for me.”
Angie’s renal autotransplant was on Oct. 1. While she is still recovering from the surgery, she can already tell her flank pain is gone. “I remember waking up right after the surgery and thinking, my kidney doesn’t hurt,” she said.
Now, she says, she’s looking forward to going places and seeing things with her husband and three children. “My world feels so much brighter now,” she said. “This isn’t just life-changing for me—it’s life-changing for my kids, my husband, everybody.”