With Rare Disease, Mumbai Girl is One in 23 Lakh
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12 May 2010
By Jyoti Shelar
The parents of a 16–year–old girl were taken aback when doctors at Nanavati Hospital told them that their daughter will have to undergo hysterectomy due to her rare congenital disorder –an undeveloped vaginal tract and uterus with no opening. Scared, they decided to abandon the operative procedures.Pooja Shinde’s (name changed) lower abdomen was swollen like that of a pregnant woman due to the accumulation of menstrual blood in her ball–like uterus. With Pooja’s pain increasing, the Shindes finally consulted Dr Uddhav Raj, a gynaecological endoscopic and pelvic oncosurgeon. Raj operated on Pooja last month using a specially devised needle.
“We inserted the needle in her uterus to suck out the accumulated blood,” said Raj adding that they collected two litres of menstrual blood. This enabled Pooja to get back to normal life and appear for her CET exams.
“Pooja’s condition is very rare. It is found in one out of 23 lakh women,” said Raj. Pooja was suffering from congenital cervical and vaginal agenesis –a condition where there is a functional uterus, ovaries and fallopian tubes, but due to the absence of cervix (mouth of the uterus) and vaginal tract, the menstrual blood gets accumulated in the uterus.
“Since she turned 12, Pooja started complaining of severe abdominal pain every month. We ignored the problem until the abdomen was swollen,” said Pooja’s mother.
According to the Shindes, their daughter was admitted to Nanavati Hospital twice. They failed to remove the accumulated blood and suggested hysterectomy. That is when they started looking for a second opinion.
But the worst is not over for Pooja. She will soon undergo an Utero–cervico vaginoplasty –a whole reconstruction of the genital organs, a complicated and rare surgery.
“The surgery will mainly involve cutting the uterus to create an opening and then connecting it to the vagina,” said Raj. The surgery may lead to excessive bleeding, which may force the surgeons to go for hysterectomy. “Also, there are chances that the opening of the uterus joins back.”
Dr Rakesh Sinha, consultant gynaecological endoscopic surgeon and managing director, Beams, said, “It will be a good case to see if the surgery is successful.”
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