Uterus didelphys is rare, according to emedicine, an online medical encyclopedia; estimates vary widely from 1 in 2,000 to 1 in 1 million; some women do not know they have the condition because it never causes problems. But for those who experience unusual pain, which usually begins after menstruation, surgery may be required.
Uterus dydelphys can also cause recurrent miscarriages and, in extremely rare cases, fraternal twins who are delivered hours or even days apart.
Surgery was scheduled for the following morning, a Saturday. “Basically she had two half [-size] uteruses and two cervixes” and vaginal tissue that had trapped the blood, said Samantha Pfeifer, director of the reproductive surgery program at the Hospital of the University of Pennsylvania. An expert in adolescent gynecology, Pfeifer was called in to perform the procedure, along with a surgeon at CHOP.
The months-long blockage had damaged one of Allie’s fallopian tubes, which had to be removed; the accumulated blood had put pressure on other internal organs, which were pressing on her tailbone, causing the worsening pain, diminished appetite and severe constipation.
Pfeifer, an associate professor of medicine at Penn, is one of a handful of surgeons who specialize in treating such cases.
“One of my pet peeves is that doctors don’t tell women with a baby born with one kidney that this could happen and that when she gets her period,” treatment may be required, Pfeifer said. And because many doctors don’t learn about such anomalies in medical school, many don’t know about such a complication.
Instead, “traditionally no one puts two and two together, and these kids are seen repeatedly in the ER for constipation and pain for months — or years.” Many radiologists, she added, are not familiar with the problem. “I’ve seen it diagnosed as ‘fluid in the fallopian tube.’ ”
Recently, Pfeifer said, she operated on a teenage patient from Florida who had been in two hospitals “where no one had ever heard of this.”
In Allie’s case, doctors drained 17 ounces of obstructed fluid and removed the tissue blocking blood flow. Doctors left the uteri intact; surgery to unite them is rarely performed because it is unnecessary and risky.
“It may be a little tricker to get pregnant, and she may need a C-section,” Pfeifer said of Allie, whom she continues to follow, but “she should do fine.”
And she has, both Allie and her mother say. Her pain has vanished, and Allie, who will turn 19 in August, recently finished her freshman year at Bucknell University, where she is majoring in civil engineering.
Recovering from the psychological aftereffects has been a longer process.
Partridge said she told the ER doctor after the cancer scare, “I’m her mother; I should have thought of this.” The doctor, she said, replied, “You shouldn’t; the doctors should have.” Partridge said she remains “aggravated that we went to two specialists about her single kidney and no one said anything about this.”
Allie is eager to put the trauma behind her. “I think I’m definitely stronger because of everything I’ve been through,” she said. “At college, I appreciate being healthy more than other kids do.”
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