Hysterectomies in Hebbalagere village: Vulnerability, misconceptions and medical avarice
Hebbalagere is a village of 500-odd households about an hour’s bus ride from Chitradurga, on the road to Shimoga. There were recent reports of a spate of hysterectomies largely among the Koracha (Schedule caste) community in the village.
A discussion was held with about 15 women in the Koracha keri /hatti of the village and they were also interviewed individually to understand the issue in greater depth in terms of the reasons and the context in which women had undergone the surgeries. Whatever medical records women had were reviewed to understand the medical diagnosis, the place of surgery, tests conducted prior to the surgery and advice given at discharge. Most of the women contacted were engaged in agricultural labor, housework or making cane/ bamboo baskets, the latter being the traditional occupation of the community. Some of them have small land holdings of about 1- 2 acres.
When asked the reason for a sudden spurt in hysterectomies in their village, one woman whose mother in law had died more than 10 years ago of cancer of the uterus explained how her mother in law’s suffering had created a lot of fear among the women in extended family and the community. By contrast another woman who had similar problems but underwent hysterectomy had gotten better which constructed hysterectomy as a kind of “cure” for RH problems in women’s minds:
“Four years after menopause she started bleeding and started having bili muttu. After a month of treatment in Holalkere we went to birur GH to see Dr. Dayanand. He said it was cancer. He said it can’t be operated or melted using current and said she will live for 6 months. We did a lot… went to temples, did naati aushadi.. we even went to Kidwai also… But she passed away. After my mother in law died another woman who had similar problems went and got her uterus removed. She got well and completely recovered. So everyone felt that this operation was a solution”. 40 year old woman
The fear of cancer was echoed by many women during interviews:
“Doctors say bilimuttu can cause cancer. I was very scared. So I decided to go for this operation. My SIL has also got it done”. 28 year old woman
In addition some women also said that hysterectomy freed them from the hassle of managing menstruation every month:
Women also find it difficult to wash their batte every month and all the problems it brings. So they are happy if something can be done to avoid it.
Apart from this fear and wanting to “just do away with menstruation”, women had started associating hysterectomy with looking good and healthy which seemed to be adding to the “demand” for hysterectomy especially among younger women.
She felt that women who had undergone hysterectomy were all clean… that they all looked good after the operation. I remember… it was immediately after my operation that she started complaining of stomach ache. She actually just wanted the operation.
They also feel that the women who have undergone the operation gain weight and they start looking good (chennagi aagi bittoule).
They want to be free like men.
“Demand” created out of ignorance seemed to be capitalized on by the medical fraternity who seem to be asking women to bring in more “cases”:
“Through _________ (one of the women in the village who has undergone hysterectomy) some 15 women have got undergone the operation. ‘How come you have not brought any case for operation?’, the doctor asks me”
All except one woman had undergone hysterectomy in Birur General Hospital, by one particular doctor. Women said that this doctor did not himself do the surgery but would stand at their head during the surgery and keep them engaged in conversations while the actual surgery was done by a younger doctor. They were not sure if this doctor was a government employee or a private doctor. What was striking was that women had no information about their condition, its underlying causes, the modes of treatment and ways to prevent it. In fact there had been no attempt by staff in Birur hospital to clarify women’s misconceptions and dissuade women who did not need it from undergoing it. This was not surprising when the women described their experience in birur GH:
“Doctor does not even touch and examine. He first just sends for scanning. The minute you go in, he asks you to go to the opposite scanning centre. He does not say why or what the problem is. After the scanning he says “you need operation…otherwise you will get cancer”. After scanning you have to do blood test, urine test and heart test.
In fact the staff behavior and the treatment they meted out to women was insulting and humiliating:
You can’t have any clothes on during the operation. There is no screen.. nothing. They make you lie down. Before the operation, you have to strip off all your clothes and go completely naked. Then they ask you to go to the operation theater which is across like a corridor. The OT is full of men- doctors and attenders. Women nurses are there. But they are not helpful or supportive. If we try to cover ourselves with a sheet, they shout: hey! Dint I say remove all your clothes? Drop that thing!” It is so humiliating. How can you look at those people in the face?
Women reported paying to the doctor on average Rs. 5000, ranging from Rs. 2000 to Rs.10000. This was excluding other costs related to medicine or blood. Payment to the doctor was non-negotiable and was strictly enforced:
The doctor is ok. He and the nurses give good care after the operation. They attend to you if you complain of pain or discomfort. He does not take money directly. He asks you to hand it over to the nurse. But if he says 5000 you have to hand in that amount. He does not take even a rupee also less.
Without paying there was no way women could get out. And the staff in the hospital had devised ingenuous and violent ways of ensuring women paid the illicit amount due to them:
Earlier they used put the urine pipe for three days and then remove it. Do you know what they do now? They do not remove it till the time you pay. Sometimes women are alone on their own. I was wearing a nightie and dragging that pipe along in front of everyone. It is horrible and hurts a lot. When I asked the sister to remove it she said she will not remove it till I pay. She said people just run away without paying. I went to the doctor to request him. He just turned away and pretended he didn’t see me or hear me.
Predictably enough, women had taken loan on baddi at 5% interest from local money lenders. One of them said the family had pawned their two- acre land.
Two women who had undergone the surgery because they felt “something was sticking out” complained that they continued to feel it. “If that was the uterus sticking out then, what is coming out now?” asked one worried woman. “What have they removed? Or have they removed anything at all?” wondered the other.
Two more women reported serious post-operative complications. One of them said she had developed Jaundice after the surgery and she was so serious that the doctor thought she will not survive. She was referred to Davangere hospital where she was admitted for nearly three weeks after which she got better. She spent nearly 50000 there.
“My mother and sister had to go without food for two days because we had no money. Then my sister borrowed money to return to the village to take a loan for paying the hospital. When I went to the birur hospital the other day, the nurse was so happy to see me. She called the doctor on his mobile. He spoke to me and said, “I thought you had died”.
Another is a 26 year old woman whose hb was 9.6 when she underwent hysterectomy in March 2013. She had been having symptoms of white discharge and abdominal pain for about two months when she along with her sister in law decided they wanted to undergo the surgery. They both went to Birur GH just for a check but ended up getting admitted and undergoing the surgery soon after. She had to be given “a bottle” of blood. After the surgery she started passing urine without her knowledge. “I am constantly passing urine. I don’t even know how it happens. Now I have burning sensation also. I am tired all the time and my back hurts. We went to Davangere. They did a scan. They said there is no problem. They have given some medicines”, says a visibly anemic tired woman.
The ages of women who had undergone hysterectomy ranged from 26 years to 40 years. The total number of children ranged from 2 to 6. Three women reported deaths of children immediately after birth. Women reported that early marriage and consequently early child-bearing was common in the community. They reported reproductive health problems such as foul smelling white discharge, white discharge that was curdy, “passing white discharge like urine”, “excessive” bleeding during menstruation, lower abdominal pain for a duration ranging from 2 months to 5 years prior to undergoing hysterectomy. Two women reported that they felt something was “sticking out” and two women said they were told they had “gedde”.
12 out of 15 women had brought their IP cards from Birur hospital. The diagnosis on 6 cards was entered as Chronic cervicitis, on two as PID, two others had bulky uterus. The remaining two cards did not have any diagnosis. Three women were anemic with hb levels of 9.6, 9.8 and 9.8gm%. Of the three anemic women one had a rare blood group of O-ve. The woman was told that they didn’t have any reserves of her blood group and yet went ahead with the surgery. Other tests included RBS, HbsAg, VDRL and in some cases HIV. These tests in all women were recorded as negative. In 12 of the 14 IP cards it was indicated that the women had undergone “TAH”. In the remaining two, it was mentioned as “TAH and appendectomy”. All women were given advice about “antibiotics, analgesic, haemotonics” and in some cases “high protein diet”.
Hebbalagere women’s experiences reveal violations at different levels of different kinds:
1. If there were several women reporting severe RH problems from a particular geographical area for over five years why didn’t the local PHC, the CHC or the Birur GH where many women sought care take immediate cognizance of it and undertake urgent measures to prevent and control it?
2. Most of the symptoms reported by the women are associated with STI. However none of the women’s partners had undergone any treatment. The RCH program is among the oldest PH programs in the country with substantial resources for treatment of RTI /STI including partner treatment. Yet the government health staff chose to turn a blind eye and wait until it reached unacceptable proportions.
3. The women had no information about the various symptoms they were suffering from, their causes or ways to prevent them. Routine outreach activity and interactions with women in monthly village health camps by ANMs and doctors would have revealed these problems and helped to take preventive corrective action. This is an illustration of how the government is willfully ignoring preventive/promotive aspects of primary health care to push vulnerable women into ill health, debt and destitution.
4. The doctor in Birur GH has been clearly misusing his position and exploiting women by instilling fear, misguiding them to undergo hysterectomies some of which are medically unwarranted. He has been extracting hefty bribes through inhuman methods. He has also tried to build nexus with the women of the community to trap other women into undergoing unwarranted hysterectomies.
5. There have also been instances of gross medical negligence as the post operative complications among women have pointed out: urine incontinence in one woman and severe jaundice in another.
6. The doctor in Birur GH has also undertaken surgery even when the women were anemic, which is a clear contraindication for a surgery where high levels of blood loss is expected. And one of the anemic women was O-ve of which there were no reserves in case of an emergency. These are two clear violations of any surgical protocol which have fatal consequences.
7. The Birur GH staff have humiliated women and violated their bodily integrity by asking them to walk naked across to the OT in the presence of male doctors and staff which also goes against medical code of conduct and ethics.