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December 8, 2020

Doctors dismissed her stomach pain for 6 years. Then, a CT scan changed everything.

Daily Briefing
    Editor's note: This popular story from the Daily Briefing's archives was republished on Mar. 8, 2022.

    Between 2012 and 2018, Olivia Bland experienced crippling stomach pain without a clear cause. After seeing a number of doctors—many of whom dismissed her pain, with one saying he wouldn't treat her any longer—a CT scan finally provided an answer, Sandra Boodman writes for the Washington Post.

    Here are 5 key tactics to attract and retain transplant patients

    Crippling stomach pain—and dismissive doctors

    Bland's stomach pain began in 2012, two years after the birth of her first child. The pain was located in her lower abdomen, and it would switch between a heavy ache and a sharp pain. Initially, Bland was concerned she had appendicitis, Boodman writes.

    Bland also had a low-grade fever that typically decreased in the afternoon, as well as fatigue so severe, Bland said she "could chug two cups of coffee at 9:30 p.m. and be sound asleep by 10"—only to sleep for 10 hours and wake up still feeling exhausted, according to Boodman.

    Bland visited an internist for the pain, and the internist ordered an abdominal CT scan. The scan came back normal. Then, Bland's pain went away.

    However, Bland's pain reemerged in 2014, a year after the birth of her second child. Bland started having the pain every month, and it the pain would last from a few days to a week, Boodman write.

    In March 2017, Bland returned to her internist, who told her that "all women have abdominal pain," Bland said. The internist prescribed Bland a drug for treating acid reflux. When Bland said her pain wasn't related to reflux, the doctor told Bland to "eat better," and then left.

    Bland then sought care from the nurse-midwife who had delivered Bland's first child. The nurse-midwife recommended that Bland undergo an endometrial ablation, which is a procedure typically used to treat excessively heavy periods, Boodman writes. The nurse-midwife said the procedure had helped some women who experienced severe abdominal pain. Bland scheduled the procedure, but she ultimately canceled it, fearing it might not be effective.

    In November 2017, Bland returned to a rheumatologist she had been seeing for the possibility of lupus, hoping that a test might reveal she had an underactive thyroid—a condition that can cause fatigue—as Bland's family has a history of thyroid disorders. But the tests came back normal, and Bland started to cry, Boodman reports.

    "[The rheumatologist] looked at me and said, 'You realize you are crying because your bloodwork is normal?'" Bland said. "I knew how crazy I looked, but I couldn't handle another negative test."

    The rheumatologist offered to prescribe Bland antidepressants, which she refused. The doctor then told Bland that he wouldn't see her again unless there was a change in her medical history, Boodman reports.

    At that point, Bland's stomach pain was occurring more frequently—to the point that it was affecting Bland's family life. "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!'" Bland said.

    In 2018, Bland went to see a new internist who ordered a colonoscopy and tests for celiac disease, as well as H pylori, a bacteria that causes ulcers. All the tests came back normal.

    At that point, Boodman reports, Bland said she started questioning her sanity.

    "Did I need attention from other people? Was I actually lazy?" she said. "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."

    A CT scan finally provides answers

    Bland then began feeling pain in her back, which led her to wonder if she had a kidney stone in July 2018. In response, her internist ordered a urinalysis and a CT scan of Bland's abdomen and pelvis.

    The urinalysis found blood in Bland's urine, and the CT scan finally unveiled the cause of Bland's pain: she had two conditions, pelvic congestion syndrome and nutcracker syndrome.

    Pelvic congestion syndrome occurs when varicose veins develop around the ovaries, and it typically emerges during or after pregnancy, Boodman reports. The veins become engorged, which causes blood to pool. That pooling can lead to severe pain.

    Nutcracker syndrome occurs when the left renal, which transports purified blood from the left kidney, becomes compressed, which restricts blood flow, Boodman reports. Sometimes, pelvic congestion can indicate the presence of nutcracker syndrome, according to Boodman.

    In some cases, nutcracker syndrome results in no symptoms, Boodman reports. But in other cases, it can cause what's known as loin pain hematuria syndrome, which can cause significant abdominal pain and blood in the urine, according to Boodman.

    Difficulty finding the right treatment

    Bland's internist referred her to a gynecologist for treatment, but Boodman reports that the gynecologist didn't know how to treat Bland's condition.

    Bland then sought advice from the interventional radiologist who diagnosed her condition. The interventional radiologist recommended an embolization, which would involve placing coils in Bland's ovarian veins to prevent pooling. However, her cautioned that the embolization might make Bland's nutcracker syndrome worse, and he noted that he had only performed embolizations in the brain.

    Initially, Bland was prepared to go through with the procedure, anyway. But after reading a warning about the procedure that was posted in an online support group for patients with nutcracker syndrome, Bland canceled the surgery.

    Eventually, Bland online came across a woman who had undergone kidney autotransplant surgery to treat pain related to nutcracker syndrome or loin pain hematuria. That lead Bland to eventually discover Hans Sollinger, of the University of Wisconsin at Madison, who was a "pioneering transplant surgeon" and had worked to develop kidney autotransplant surgery, Boodman reports. Sollinger had retired, but he put Bland in contact with Robert Redfield, a transplant surgeon who had worked with Sollinger.

    After dealing with issues related to her insurance coverage, Bland in May 2019 underwent a pre-op test for kidney autotransplant surgery, which involves removing an affected kidney and ureter and moving it to the other side of the body, Boodman reports. Bland passed the pre-op test, and Redfield informed her that she was a candidate for the procedure.

    Redfield performed the seven-hour transplant in July 2019. After the surgery was completed, Bland spent six days in the hospital and 11 days at a nearby residence for transplant patients. In total, it took Bland nine months to fully recover from the surgery, but her symptoms haven't returned since, Boodman reports.

    "I cannot put into words how grateful to Dr. Redfield and his team I am," Bland said. "They saved me" (Boodman, Washington Post, 10/24).

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