Her internist had advised her to “eat better.” After a rheumatologist found nothing wrong, he told her he didn’t want to see her again.
But in July 2018, a radiologist reviewing Bland’s latest CT scan spotted two problems that had apparently gone unrecognized. Her rocky road to effective treatment would consume another year.
“I think about my pain every morning when I wake up,” Bland said recently, sounding surprised by its absence. “I can’t even put into words how different it is.”
Bland’s digestive system had long been finicky. At 18, she was diagnosed with irritable bowel syndrome, a catchall diagnosis that includes diarrhea and bloating. But the pain in her lower abdomen that developed in 2012, two years after her first child was born, was different. It alternated between a heavy ache and a sensation so sharp Bland worried she might have appendicitis. Normally she didn’t pay a lot of attention to pain: She had a high threshold and had twice given birth without painkillers.
Her internist ordered an abdominal CT scan, which was found to be normal. The pain then disappeared. By 2014, a year after her second child was born, it began to recur every month and last anywhere from a few days to a week. When maximum doses of over-the-counter pain relievers didn’t help, Bland headed to an urgent care center or ER where doctors repeatedly found no explanation.
In March 2017 Bland consulted her internist. The doctor was curt. She said that “all women have abdominal pain,” Bland recalled, then prescribed a drug to treat acid reflux. When Bland protested that her pain wasn’t reflux, the doctor advised her to “eat better” before walking out.
Next she consulted the nurse-midwife who had delivered her first child. She recommended an endometrial ablation, a procedure usually performed to treat excessively heavy periods, which the nurse said had helped some women with severe abdominal pain. Bland scheduled the procedure, then canceled it fearing it might prove ineffective.
In November she returned to the rheumatologist she had been seeing for possible lupus, an autoimmune disease that causes inflammation and pain. She took her husband, Jeff, to the appointment to attest to her fatigue. Bland also fervently hoped testing would reveal an underactive thyroid, which can cause lethargy; both parents and her sister had been treated for thyroid disorders.
When the rheumatologist told Bland she had neither lupus nor a sluggish thyroid, she began to cry.
“He looked at me and said, ‘You realize you are crying because your bloodwork is normal?’ ” she recalled. “I knew how crazy I looked, but I couldn’t handle another negative test.”
After refusing his offer of antidepressants, the doctor told her he would no longer see her unless there was a change in her medical history.
The episodes had begun to occur more frequently, and Bland’s family life was suffering. “Every birthday, Mother’s Day and Christmas my husband would ask what I want and I would break down crying and say, ‘I just want to sleep, that’s it! I want to sleep for 24 hours!’ ”
During a game of charades, her young son portrayed a character who walked hunched over and took tiny steps. After a volley of wrong guesses, the 7-year-old excitedly blurted out, “You, Mom!” Bland remembers fighting back tears. “I just felt so awful. That’s how my children saw me.”
In 2018, a new and supportive internist sent her for a colonoscopy and ordered tests for celiac disease, a common autoimmune disorder caused by eating gluten, and H pylori, the bacteria that causes ulcers. All were normal. At that point, Bland said, she began to question her sanity.
“Did I need attention from other people? Was I actually lazy? I started to really wonder if I was what everyone else thought I was: a hypochondriac, an awful person who doesn’t play with her kids.”
In July 2018, after the pain moved to her back, Bland wondered if she might have a kidney stone. Her internist ordered a urinalysis that detected blood in her urine. The doctor then ordered a CT scan of her abdomen and pelvis. Although Bland had undergone the same scan in the past, this one would turn out to be life-changing.
‘Sign me up!’
The scan revealed that Bland appeared to have two sometimes interrelated conditions: pelvic congestion syndrome and the less common nutcracker syndrome. Pelvic congestion syndrome often occurs during or after pregnancy, when varicose veins develop around the ovaries. These veins become engorged, resulting in the pooling of blood that can cause significant pain.
Pelvic congestion can indicate the presence of nutcracker syndrome, which occurs when the left renal vein that carries blood purified by the left kidney becomes compressed, obstructing blood flow. Sometimes nutcracker syndrome, which can also affect men, causes no symptoms. But in other cases it can lead to a poorly understood disorder first described more than 50 years ago called loin pain hematuria syndrome, which can result in blood in the urine and severe abdominal pain.
“I was like ‘This is the best news I’ve ever had,’ ” Bland recalled. After six years she finally had an answer — and it wasn’t that she was crazy.
Her internist referred her to a gynecologist who didn’t know how to treat her. She then consulted the interventional radiologist who made the diagnosis. He proposed an embolization, a procedure that involves placing coils in ovarian veins to prevent blood from pooling. But he cautioned that the procedure might worsen her nutcracker symptoms.
Bland was initially undeterred. “If you told me I needed to cut my pinkie off right now and I would be pain free I would do it!” she remembers telling him. “Sign me up!”
But soon after scheduling the procedure, she had second thoughts. Her family was opposed, and the radiologist told her he had only done embolizations in the brain. After reading an explicit warning on the website of a support group for nutcracker patients, she canceled the procedure.
Online she encountered women who had undergone kidney autotransplant surgery to treat the pain caused by nutcracker or loin pain hematuria. A major operation, autotransplant involves removing the affected kidney and ureter, the tube that carries urine from the kidney to the bladder, and relocating it to the other side. The operation does not carry the risk of organ rejection and is reserved for patients who have exhausted less invasive options, including anesthetic infusions.
One name kept recurring: pioneering transplant surgeon Hans Sollinger of the University of Wisconsin at Madison.
In September 2018 Bland contacted Sollinger, who has since retired and is now a professor emeritus. After an interview with UW’s transplant coordinator and a review of her records, Bland was told she would need to undergo a prerequisite test Sollinger and his colleagues had developed to determine which patients might benefit from a transplant.
The test involves the injection of a local anesthetic into the ureter. Patients who remain pain-free for at least 12 hours are deemed transplant candidates. Loin pain hematuria syndrome, Sollinger said in an email, is believed to originate in the ureter where repeated spasms cause pain he likened to “continually passing a kidney stone.”
Bland called three surgeons in New Mexico, all of whom refused to perform the test. But she faced an even bigger obstacle: Her insurance did not cover out-of-state treatment. And her supportive husband was opposed, worried that she was rushing into surgery based on unsubstantiated information on Facebook.
A month later the couple spoke by phone with one of Sollinger’s proteges, transplant surgeon Robert Redfield III. (Redfield recently became surgical director of the Living Donor Kidney Transplant Program at the University of Pennsylvania.)
“We asked him numerous questions,” Bland said, “and then he asked to speak to my husband. He told him ‘Please don’t give up on her and don’t give up on your marriage. We can help her.’ ”
“That was a big game changer,” she said. During open enrollment a few months later, Bland’s husband switched their insurance to a plan that covered treatment out of state.
Redfield said he often speaks with the spouses of potential transplant patients whose marriages and other relationships are strained. “It’s not uncommon for patients to have a significant psychological impact because of what has gone on,” he said. Bland’s pain “was certainly having a significant impact on her quality of life.”
In the past four years, Redfield said, the Wisconsin team has evaluated about 200 patients and performed autotransplants on about 80. “We’ve probably helped 80 percent of our patients get near to complete resolution of their pain,” he said.
Some had been reliant on narcotics. Among them was a teenager who was receiving a continuous Dilaudid drip. After transplant her pain disappeared, along with her need for opioids, Redfield said.
“The question is, can a transplant improve their quality of life? Does the risk-benefit ratio justify it?” he asked, adding that uncertainties about loin pain hematuria syndrome abound because of the paucity of research. “There’s still a lot more we need to learn about the pathophysiology.”
In May 2019, Bland flew to Madison to undergo the pre-op test. Her pain vanished for more than 24 hours; the following day, her 36th birthday, Redfield told her she was a transplant candidate.
“It was the best birthday present I ever had,” she recalled. Her insurance company initially refused to cover the surgery but reversed course after UW Health appealed.
The two months before Bland’s July 2019 surgery were nearly unbearable. She said she was unable to function 80 percent of the time and worried that “Dr. Redfield would call me and tell me he didn’t think I was a candidate” after all.
Her seven-hour surgery performed by Redfield was followed by six days in the hospital and 11 days in a nearby residence for transplant patients. Complete recovery took about nine months. Bland’s abdominal pain, exhaustion and fever disappeared and have not recurred.
“I cannot put into words how grateful to Dr. Redfield and his team I am,” Bland said. “They saved me.”