Hindsight is 20/20, and now that Simone Erdner looks back at the medical mystery that consumed two years of her life, she can see why her body was rebelling against everything she tried to do to help it.
But when she was in the middle of it all, it was difficult for her to see how she was ever going to feel better. Fortunately, she connected with the right people—the caregivers at UW Health’s Renal Autotransplant Program in Madison, Wisconsin. “I felt taken care of there,” said Simone, who lives in Evergreen, Colorado. “I felt validated.”
Simone first began experiencing unusual vaginal discharge in late 2022. She sought help from her doctors, but they told her she was just having menstruation issues and needed to learn to live with it. After a diagnostic laparoscopy, Simone learned her left ovary, fallopian tube and uterus were inflamed, and she had a cyst on her ovary. Eventually, she was diagnosed with advanced endometriosis.
Frustrated by the substandard care she was receiving from her gynecologist, Simone found another gynecologist, who performed a hysterectomy and removed Simone’s uterus and left ovary, as well as the endometriosis. “I woke up from that surgery feeling amazing,” Simone said. “I got two good months after that.”
But after a few months, Simone began suffering from left flank pain, an irritated bladder, major back problems, pelvic pain and problems in her left leg. Her new gynecologist had just heard an interventional radiologist speak about a condition called May-Thurner syndrome, and she thought he might have answers for Simone.
In July 2024, the interventional radiologist diagnosed Simone with both May-Thurner syndrome—a condition in which the right iliac artery crosses over and compresses the left iliac vein—and nutcracker syndrome, a vascular condition in which the left renal vein is compressed, leading to sometimes extreme left flank pain. “When they diagnosed me with nutcracker, I remember just crying immediately,” said Simone. “They told me the two most successful options for treatment were either losing the kidney or relocating it.”
After learning that the best treatment for May-Thurner syndrome was to get a stent to relieve the compression, Simone underwent that surgery in August 2024. It helped with many of her symptoms, but two weeks later, the nutcracker syndrome pain returned. Simone’s hospital in Colorado had suspended its nutcracker treatment program at the time, so it referred her to UW Health.
Simone met with several different doctors at UW Health, underwent a venogram (a test that let the doctor see the veins in her legs), and learned that she would be a good candidate for a renal autotransplant. A renal autotransplant is a procedure in which the surgeon removes a patient’s left kidney and replaces it elsewhere in her body. Simone had her surgery in December 2024.
Afterward, she said, she and her caregivers at UW Health realized all her health problems were related to each other. “Once we connected the dots,” she said, “we realized my reproductive system was the host for the reflux blood from my left renal system. When we took the host away in a hysterectomy, that blood had to go somewhere else. I started creating collateral veins in other places, which led to compression. I lost my uterus and left ovary, when what I really needed was a kidney autotransplant.”
After so much pain for so long, Simone has finally found relief. As she says, “I’m back to regularly scheduled programming. I’m sleeping through the night, and my body is regenerating like it’s supposed to.”
And Simone is grateful for the care she received from the RAP Program team and the caregivers who helped her recover in the hospital. “It was smooth,” she said. “I felt taken care of. I felt validated. My experience was wonderful—even down to finance.”