Six months ago, when their 12-year-old daughter first experienced terrible abdominal pain, her parents were never even aware of the rare condition their daughter suffered from.
When the teen began menstruating, the menstrual blood began to accumulate in her uterus due to the absence of a vagina.
"She was suffering from a rare congenital developmental anomaly known as Vaginal Atresia, where the vaginal canal is not developed. The canal connects with the uterus to open up for blood to flow out normally. "Such an anomaly can only be noticed when a girl hits puberty. When a girl is menstruating, the blood does not flow out but thickens and accumulates inside the uterus," said her operating surgeon, Dr Sanjay Pandey, Reconstructive Urologist at Kokilaben Dhirubhai Ambani Hospital. The patient underwent a reconstructive surgery four days ago, which will help her have normal periods.
Vaginal Atresia is estimated to occur in 1 in 5000-10,000 women.
For months, the patient's parents took her to various doctors, while their daughter would bawl in pain. It was only five months after the ordeal that a gynaecologist told them of this condition, but was wary to operate on her. The girl's mother also never realised it, as in pre-pubescent age the vaginal opening is very tiny. In the patient's case it was not there at all.
Initially, the pain was mistaken to be due to urinary tract infection, or UTI. Her system was pumped with antibiotic painkillers. Later, her urine test came out to be normal. "We later suspected appendicitis, until that was ruled out, too," said Rakesh Kumar, the patient's father.
"Only after the fifth month, we got a sonography done and got an idea of her issue. Even then, we were under the impression that will be minor procedure, as the gynaecologist explained to us that it could be a minor blockage. But later, they found more complications. The gynaecologist explained that her vaginal canal was missing and the uterus was blocked," said Kumar. An MRI showed a lot of blood had collected near her kidneys and the uterus.
For the corrective surgery, Dr Pandey took the abdomino-perineo approach. A segment of the intestines about 9 - 10 centimeters long was used to create a tube, brought down and attached to the mouth of the uterus. Space was created from between urethra, from where urine passes and rectum, from where the stool passes, to construct a vaginal opening to let the blood flow out.
"Women pass about 80 ml of blood during a monthly cycle in cases of heavy bleeding. Upto half a litre of blood had collected in Sakshi's uterus over six months. "The uterus had swollen. All of that had to be drained out during the surgery," said Dr Pandey.
Sakshi is now recuperating at the hospital. With the reconstructed vagina, she will be able to lead a normal life, said Dr Pandey.
While the tween was diagnosed within six months of her periods, many cases go unnoticed for up to two years due to lack of awareness. "Especially in villages, parents are unaware of congenital anomalies. They come to us after much time has passed, and the patient is unbearable pain," Dr Pandey said. He is aiming at publishing the case in a medical journal this year.
Dr Aparna Hegde, a Delhi-based urogynaecologist says that Vaginal Atresia as an isolated defect or may be a part of a complex of reproductive anomalies. She sees two-three such patients every year. "There are also cases where a woman's uterus and vagina both are missing. In such a case, only cosmetic reconstruction is possible of the vagina so she may at least have sexual activity if she cannot have babies. All these are a part of larger group of Mullerian anomalies."
