Chapter-I Introduction Background and Rationale of the Study
Pelvic organ prolapse (POP) has been found as widely prevalent health problem among the Nepalese women. Women of all ages including relatively young are having this problem. Several studies have pointed towards the medical causes and severity of the POP on life of women. Consequently, they have recommended for the surgery of uterine prolapse including the removal of the prolapsed uterus, as remedy to this health problem. Considering POP as a significant social and public health problem, the present Nepalese government has also emphasized on the need of its surgical treatment.
Different government and Non-Governmental Organizations (NGOs) have organized their programs for the treatment of POP. As part of that, POP surgeries have been conducted in different parts of Nepal, at various hospitals and sometimes through the mobile POP surgery clinics. They have been conducted even in the remote areas of the country; often deprived of other basic health facilities and services. As a severe medical problem, this issue has been acquiring increasing attention from different actors. Thus the number of women having POP surgery is accelerating these days.
Among the few preceding researches conducted to evaluate the consequences of POP surgery on those operated women, an evaluation study conducted by the team of medical doctors (Schaaf, Dongol and Harmsen 2007) has pointed towards and opened up the room for further follow up explorations. Their concern and warning was that the older women with POP surgery may transfer the more heavy work and thus aggravation of a prolapse, to their daughter(s)-in-law, the next generation of women. Such findings and reflections of medical doctors involved in POP surgery has demanded the in-depth qualitative enquiry on the socio-cultural context of POP particularly focusing on the intra-household dynamics and the factors affecting its emergence and maintenance.
As a public health problem, POP has attracted immense attention from the professionals from bio-medical field. In addition, it is also a social and cultural problem and accordingly it is intertwined with different dimensions of social life of the affected woman i.e. the patient. The impacts of POP surgery could only be comprehended and thus it can be evaluated only when its consequences are explored and analyzed holistically and basically from the perspective of the patients. This study has shouldered this promise and extracted their own views about their lived experiences. Findings of this research will ultimately help to the medical professionals involved in women's health and POP surgery, the (health) policy makers and future researchers interested in the issues related with women's health.
Objectives of the Study
POP surgery has widely been taken as the ultimate solution of this public health problem. In Nepal, these women are rarely followed up to know the impact of POP surgery on different aspects of their life. Even the effectiveness of the POP surgery has not been reviewed holistically and thus carefully. In addition to focusing on its curative aspect i.e. the surgery, it has become essential to cautiously look at the impact and consequences of POP surgery.
The impact study was conducted to carefully explore and answer the following specific objectives:
1. To find out the effectiveness of POP surgery; 2. To probe the lived experience of the operated women on their bodily
transformation for negotiating and in the construction of self and subjectivity;
3. To explore and analyze the impact and consequences of POP surgery.
Chapter-II Research Design and Methods 2.1 Research Design and Strategy
This is a micro level ethnographic study which emphasizes to engage with the others and to explore, understand and describe their ideas, belief and practices in their local context. This study analyzes the consequences of a surgery to the life situation of women who had undergone this surgery. Likewise, it also focused on how these individuals have experienced and perceived such alterations in their life. It is a qualitative research in which the researchers had dug out the layers of meanings behind the experiences of these women and their significant others. Thus the study was of both the exploratory and descriptive in nature. It dealt on the emerging situations and their consequences on their lives.
This study depends basically upon the primary qualitative information generated through the anthropological (research) field work. To comprehend consequences of POP surgery, in-depth and holistic information about it was extracted through qualitative medical anthropological study. The research team was comprised of a medical anthropologist as a researcher and two local female anthropologists as field researchers. Later on, based on the experiences from a field site, another male researcher was added to conduct research especially among the male family members and relatives of the operated women. The research team extracted information from women of heterogeneous group based on their age, economic status, geographical location, 'success' and 'failure' of the surgery. Information acquired from the archived records of Dhulikhel hospital has assisted crucially to know about the basic information and potential respondents.
Initially, the researchers were introduced to the setting and often with the potential informants by the staff of the local ORCs. In the following days, the researchers themselves, without accompanying the staff of the local ORCs, visited the patients. They met all the women at their home and have had conversations with them. Sometimes, when a patient did not have time she asked the researchers to come to her in the evening or in the following day. Despite being busy in the rice cultivation season, they make their time to talk to the researchers. Nevertheless, the researchers have realized that it was quite expensive for the patients and their relatives to make time to provide information to the researchers. The researchers talked to few men at the tea shops whereas the conversations with most of the others were held at their respective home.
2.2 Selection of the Sites and Informants
This study comprises of qualitative ethnographic study in two dimensions; hospital ethnography and ethnography in the community. At the hospital and its ORCs, the researchers talked with the doctors involved in the POP surgery, with some patients who have come for follow up visits or for the re-prolapse surgery and also with few relatives of these patients. In addition some information was generated through the observation of doctor-patient interaction both at the hospital and at its ORCs. The interviews lasted, on an average, about 90 minutes.
The research in the community was conducted among the women who have had POP surgery at Dhulikhel Hospital mostly in their natural setting at their home and locality. In addition, information was sought also from their family members, relatives and medical doctors and health personnel (Annex-1 contains detail information on the persons interviewed.). The field research was conducted in Chhatre Deurali Village Development Committee (VDC) and Jeevanpur VDC in Dhading District and Khanalthok VDC in Kabhre District. This research was conducted during June and July 2009.
2.3 Techniques of Information Generation
For the generation of information, the research team paid adequate attention to the diversity of the cases. In addition to tape-recording, field notes was the part of information collection during observation and interview process. All the interviews, except the one in which case health personnel assisted in interpreting the questions to a patient, were conducted in Nepali and later on the researchers themselves translated them in English. The researchers used key informant interviews, observation and in-depth interviews techniques to generate information. Application of various techniques has helped a lot to have comprehensive and holistic information.
2.3.1 Key Informant Interviews
Medical doctors from abroad and Nepal, and health personnel involved at the ORCs were the key informants of the research. Their reflections on the issue proved to be useful also to grasp the extents of the problem and thus provided valuable insights for the overall research.
2.3.2 Observation
The researchers did observation both at the native community setting and hospital setting. In the community, they observed different socio-cultural practices, dimensions of gender relations, their social interactions with ‘significant others’ and other crucial aspects of their everyday life including their general physical condition.
At the hospital setting the team leader did observation of health service delivery, interaction between the health seekers (patients and their accompanying relatives) and health service providers, and some crucial aspects of diagnosis vis-à-vis consultation process. The evaluation team leader had been allowed to enter into the POP consulting room At Dhulikhel Hospital. While the doctors were talking to the patients he sat at the corner of the consulting room. While the doctors were observing the patients' uterus, for the privacy of the patient, he was staying behind the curtain or outside the consulting room, not to violate the privacy of the patients.
2.3.3 In-depth Interviews
In-depth unstructured interviews/conversations were employed to acquire information about their views on most aspects of the research questions. Unstructured interview have been applied considering its strength of ‘minimum control over informant’s response, to get informants to open up and let them express themselves in their own terms and at their own pace.
Through informal conversations, the layers of their opinions, attitude and lived experience regarding POP surgery and its consequences were dug out. For that, the members of the research team visited the native village and home of the women with POP surgery. While conducting in-depth interviews the researchers tried to ensure that no one in the family was present there and interfering during the conversation and violating her privacy. Some of the women themselves took the researcher aside from the house to be sure that no one in the house could hear her.
In-depth interviews were conducted in a way that the women would not feel hesitation to talk about their problem, experience, and more over about their selves. The researchers tried to make them feel comfortable in talking to them. For that, the interviews were held not in a formal way but as a conversation. During the conversation, not only the researchers were asking the questions to the patients but the patients were also posing their questions with the researchers. Sometimes the patients were asking about the disease itself, many other times they were asking about the women at the researcher’s home and so on. Both way conversations has enabled them to open up more and express their situation as they have lived and experienced in a way they want to portray.
2.4 Analysis of Data
Information generated by the researchers has initially been translated and compiled by them individually. The researchers handed over their research draft to the team leader. The team leader scrutinized, thematically classified and analyzed the information collated by him and by the researchers. Themes were identified from the researcher's report, from the information generated by him and the issues raised/encountered during the consultations with the medical professionals and in light with the objectives of the study.
2.5 Ethical Considerations
For this research, two ethical considerations have been identified as most important. As anthropologists are always concerned about the confidentiality of the research subjects regardless of their social situations, this study being dealing on sensitive matter of women’s life has demanded precaution from the researcher. Disclosure of their identity could be counter productive to their social situation. Therefore, for confidentiality pseudonyms (Bernard, 1995) have been used whenever someone has to be quoted or only to be referred on sensitive issues.
Likewise, informed consent of the patient has been sought before conducting the interviews. The researchers took utmost care during the process of interview and no interview begun without obtaining their consent. Not to affect their intra-household relation because of our presence, though the researchers approached different family members with the same questions, they never disclosed any member’s opinion and ideas to other members.
Chapter-III Pelvic Organ Prolapse: Conceptualization and Pervasiveness 3.1 Conceptualization of the Disease
This section deals basically on how the pelvic organ prolapse has been understood by the women considering the ailments they have experienced and its consequences in their life and in their family members. In exploring its meaning it also highlights on the social root of diseases and thus vulnerability of the women to the disease and how has it come to be considered as a disease. Likewise, it also deals on the attitude of the society towards POP and the patients with POP disease.
3.1.1 The Gendered and Feminization of the Disease
Most of the men and women from the study area believe that women are more vulnerable to disease than men. For that they have found social practices, beliefs and social structure as responsible. In addition, most of the women, including the POP patients, think that the nature of female body and their physical structure is weaker than men which inherently acquire some diseases.
The bodily cycles of the women have often been portrayed as the source of disease. Some women believe that disease is formed within the body. Both the men and women from the study site believe that menstruation is one of the main causes that make women weaker than men. They think that regular outflow of blood during the menstruation from the body weakens them. Likewise, during menstruation, women’s body becomes lose and it creates problem if one has to carry loads during this time. Others do not consider menstruation itself as a problem rather only the over bleeding during the menstruation.
Pregnancy and giving birth of a child are presented as an inevitable source of health problem. Moreover, these women are not satisfied with the idea and practices that they never get credit for that. Sita Baskota regards this as a cheating by the god to the women. Considering this some women think that naturally women are weak and acquire many diseases. Parbati Adhikari has witnessed that many women are visiting every hospital and that is the strong evidence for her that women are prone to many diseases. However, her daughter-in-law does not agree with her that all the women are weak rather some women are weaker than men.
However, some women are also aware that even a woman who didn’t give birth to baby often becomes sick. If giving birth is mainly responsible for the emergence of diseases, they opine, women who are not giving birth ever should be always healthy. But there is a woman in her village who didn’t give birth to a baby but she never finds her well.
Some of the women opined that that men are fool because they try to have many children, so women get troubles. Hence because of the foolishness of men women face difficulties. When they are trying not to have many children, again, the use of contraceptives also creates health problems to them. Moreover, increasing their physical and mental burden, sometimes women are also beaten by their husband and which also makes them physically weak. Blaming the men, few women opined that women do not have diseases by birth but they acquire it from their male partners/husbands.
Women are vulnerable to diseases because of insufficient health care and work burden and lack of sufficient rest and food in pregnancy, delivery and even in menstruation. These all show, as a young woman from Kabhre argues that women are weaker than men not because god made them weak but because society compelled them to be so.
In contrast to larger folks, some of the women think that male and female body are same and that is why both of them suffer from similar kinds of diseases. Even male becomes sick, they also have flesh. Some women may not have health problem and some men also may have health problem. Uma feels that men only have common disease like fever and dysentery because they do not have any work burden like women.
Some men are not sure about why women only have specific disease and their body is weak. Shanti Bharati agrees with such men that men cannot know about women’s problem. She adds women are destined to have such miserable life. Nirmala Roka wonders why women are of such type that they have to live passing through and bearing Dukha (miseries) and various diseases. Sometimes she asks herself that what a right/privilege is it that "all" the Dukha are for/come to women and not for men?
Local health personnel have found some women specific disease like uterus cancer, uterus prolapse, breast cancer white discharge, waist ache, Pelvic Inflammatory Disease (PID) and POP. And the causes of women specific diseases are to give birth at home, to fetch water from faraway, unsafe sexual practice of husbands, lack of cleanliness, and involvement in heavy works immediate after child delivery. Female health personnel think that women are vulnerable to many diseases especially in the hilly regions due to lack of access to health care services and heavy works. Likewise, lack of idea/knowledge to make them healthy is also equally responsible for that. So far as she knows, POP suffers only the women of village not of the city.
Nevertheless, some elder women are optimistic about the upcoming days that the time has changed drastically favouring the women. They think, in those days, they did not take care of their body. Learning from their miserable experience, they have been taking care of their daughter-in-laws during her pregnancy and delivery and advising them to take care of their body.
3.1.2 Consideration of POP as a Disease As Dr. Mary has observed, a beautifully covered uterus (of an 87 years old woman) was not an abnormal for her over the last sixty years. She stresses, who the hell is to tell that this is not "normal"? Or, is it a form of variations in the body (situation)? What is normal and proper body and what is abnormal body? With operation, may be one can bring her into her home without a prolapse but may be with some mental or many other problems. She wonders on the question that why at this point in her life, after sixty years of prolapse, she thinks that it is a problem? Who made her think that prolapse is a problem and now she wants to remove it with its "beautiful" coverage? In an absence of the coverage, she would not have been there to "know" prolapse of a uterus as a problem (otherwise she would have died earlier!). Dr. Mary is sure that she was not suffering but asking something. Nevertheless, she wonders about what was she asking and why?
Prolapse of pelvic organ have been found as prevalent over the years and probably from the beginning of the human history. In the study area, some of the women reported to have this situation over 30 years. Most of the women have had this problem immediate after the first child birth. In contrary to that, it has been regarded as a disease, only recently. Although, we could not found the exact date from when this has been considered as a disease.
Once they experienced the problem, somehow, they have communicated this situation with their close female relatives like mother and mother-in-law. They have been replied that prolapse after the child birth is a natural phenomenon. It also denotes that, over the generations women have understood the uterus prolapse as “natural” and inherently related with the child birth. Similarly, for something to be problematic and considered as a disease in the study area, it has to be able to affect them adversely and keep them away from their routine works. As the women were able to pursue their works as usual with this disease, they did not regard it as an illness.
How Nirmala Roka got to know this situation during the training; portrayed by the doctors as a health problem-a disease, represents the general scenario in the locality:
I have been to income generation training. In addition to training on income generation, we were also told about the women health. We were shown the body part of a woman through picture and also told that if women didn’t get care at the time of delivery, they might have POP problem. Till that date I have not known about the POP even though I have been suffering from the very problem. When I saw the picture, I came to know that I have POP. Moreover, I became aware that one can loose her life if she hides this disease.
It can be inferred through their information that they do not have much problem at the initial stage of prolapse and often such minor pain is naturalized by their senior female relatives as inevitable consequence of child birth. Confirming their hearings and assumptions, most of the time it gradually used to go into its own place during the next pregnancy. This has also convinced them that it is not a health problem rather an emerging situation after the child birth. So, at the earlier stages of the POP women do not consider it as a health problem.
Availability of free operation of the POP and consequently operation by many women has also expanded the knowledge of people and specially women on POP. It has become a matter of chat among the women. So, they got information from their relatives and friends. Fear of consequent dangerous disease like cancer and fear of death had also compelled them to consult the doctor. Sometimes, the rumor that during the death the life breathe (Sas) goes from the prolapsed uterus, has also forced them to consult the doctor and cure the disease.
Most of the women in the study area have POP. Some of the men and women from Khanalthok opine that around 90% women have POP in their village. Ability to tolerate the problem due to the strength at the young age, some elder women opine, was the reason behind not considering it as a health problem. Nevertheless, none of them were of the idea that they would expect same thing from their daughter and daughter-in-law.
Seventy years old Hari Maya BK from Kabhre knew about the POP only when the literate people from the city made it public in the locality. She adds, “unless they tell us, she wonders, how we can know about the (problem and its) treatment”. As Hari Maya opines and Dr. Mary wonders from the case of an 87 year old lady, POP has been portrayed and constructed as a disease in the recent past. Some of the patients have opined (and experienced) that there is no traditional method of treatment for the POP (for traditional methods see Chapter 5.1). Their claim denotes that POP is not a disease which traditionally has been regarded as a disease.
3.1.3 Meaning
The Nepali term commonly used for this disease is “Ang khasne”, meaning the prolapse of an organ. People regard it as a hidden disease (Lukuwa Rog). Women feel shy because this disease happens in sexual organ and it has not to be exposed. The women with POP operation have understood and experienced it differently. The affected women consider it as a serious and dangerous disease which can turn into cancer and cause the death. In contrast to general disease which can be cured easily, it is difficult to cure this one. Whereas, husband of some of the patients do think this as a serious problem because their wife cannot perform household work properly.
Most of the people from Dapcha area of Kabhre have been referring POP as a common disease to women. These people include patient themselves, their family members and relatives. Januka Sigdel thinks that women have POP not because they have weak body but because of her birth-time. This could make her body vulnerable to diseases like POP. To substantiate her argument she says that even women who have not done heavy works are also having this problem. She also agrees that almost 90% women have this problem.
Dr. Mary has found that the nature of the POP problem in the Netherlands some forty years ago was almost similar like the ones currently prevailing in Nepal. This makes her consider this disease in evolutionary sequence. However, in the Netherlands the prolapse problem was not discussed 40 years ago as it is these days. But the degree of prolapse in the Netherlands had never been as severe as it prevails in Nepal. Moreover, she was also
surprised with the variation in POP problems. She is not sure about how Nepalese doctors are handling POP problems as they are different than the ones found in the West. Therefore, she thinks that, as Nepali doctors are familiar with the wishes and fears of Nepali patients, they have to think about Nepali solutions for the Nepali prolapse problems. Life in western countries is different so western solutions may be not the good ones.
Occurrence and performance of the disease are different in different contexts, e.g. the prolapsed uterus of an 87 years old woman for the last sixty years has been covered by a thin layer. In the patient’s situation of inability to do anything from her side, nature has done something "beautiful" that could have done, otherwise it could have broken or infected. A nice coverage has been made on the prolapsed uterus. This makes Dr. Mary think that "disease is not always a disease that need treatment."
3.2 The Ailment
Most of the patients who have been operated for their POP problems, were operated at the third or fourth stage of the prolapse (Marahatta and Shah 2003; Schaaf et al.2007). Before operation, they have experienced the problem in different ways. Some of them had experienced uterus coming out from its original place up to the entrance of the vagina and sometimes even beyond that. None of the patients told about the stages of the POP nor do they seem to have known the disease in this way. Rather they have experienced and lived in it differently with the pain in different parts of their body.
Sometimes they have noticed constantly coming out of uterus during the whole day. Others have prolapse problem once in from one to two weeks. It complicates the defecation/urination and often comes out during that time. Most of the patients have experienced low back pain, stomach ache, back pain, pain during menstruation, discharge of white substance, and inflammation inside the stomach. They have experienced that such pain increases over the years. When they have coughing and common cold it used to come out completely. The outcame part of the uterus was just like dry stone. Some of them had experienced itching at and around vagina. All of them have experienced dirtiness due to regular discharge of white fluid. One of the patients had experienced difficulty in walking as if one of her leg had become shorter. Another patient felt throat pain after POP. Every time her throat used to become dry and she felt thirsty.
3.3 Vulnerability to Prolapse
Most of the patients and their significant others have found some risk factors as responsible for the emergence of POP. Though the research was not meant to explore risk factors (for the risk factors of POP in Nepal see Bodner 2007). Some social, intra-household politico-economic situations, bodily situation, geographical and economic
factors have been found as responsible for the occurrence of the disease. Some of them are contributing together for the occurrence.
Somehow, the risk factors identified (or reiterated) by the women are also mentioned in the official discourses on factors of POP. However, these discourses do not "prescribe" any realistic solution in their socio-economic context. The normalcy of the women's everyday life has been presented as inevitable factors of the disease. Compellingly, this will make them feel that they are vulnerable to POP "naturally" in their context. In this way, vulnerability has been naturalized not only by the patients but also from the side of biomedicine.
3.3.1 Early and Unequal Marriage
Most of the elder whom we interviewed were married at the childhood. They were married in their 6-14 years of age. Several social and cultural factors were responsible for the girl child marriage (for detail see Thapa, 1996) in Nepal. In addition, they were also compelled to have unequal marriage; in which the husband is excessively elder than the wife. Some 15 to 30 years of age gap had been found. Such practice had affected their life adversely1.
They had first child at the young age like, 15 to 17. It has been found that many women had POP after their first child birth. Parbati Adhikari, married when she was 9 to a 27 years old man as his second wife, argues that at those days it was very common to have early and unequal marriage. As a representative to the common elder women, she thinks POP is the women specific disease which suffered women because of child marriage and early age delivery. What wonders her at present is that although there is no practice of child marriage and giving birth to many children but again women become sick and also suffered from POP. This shows that early marriage, early pregnancy and delivery were their compulsion.
3.3.2 Sexuality
Unequal marriage had have compelled them to indulge in unwanted sexual relations with their husband. As a matter of secrecy, they could not share such problems with anyone. Forced sexual relation (jabarjasti aune) by the husband used to be a common practice in the locality. As Parvati (name changed) mentioned, her husband is another reason of her disease (uterus prolapsed) because he used to force her for sexual intercourse after 25 days of delivery. Referring to the dominating male sexuality, she says, she could not do anything as a woman. On top of that, her physical condition was also too weak to avoid him.
Similarly, lack of knowledge of the couple about when they have to resume sexual relation after the child birth have been found by the informants as another reason causing
1 Child marriage and unequal marriage of such huge gap has drastically reduced these days with the legal back-up.
the prolapse. Rama (name changed) said that she had sexual intercourse after 15- 20 days of delivery. For that she does not blame her husband but regrets on the immaturity, ignorance and sexual impulse of both the couple.
3.3.3 Vulnerable Bodily Situation
These women have found that their body is not always in the equally strong situation. During certain periods their body becomes weaker than in any other time. Menstruation period (four days), pregnancy and post-natal period have been named as significant periods in which their body becomes weak. Jeevan K. Sigdel opines that after giving birth women body becomes a bit loose, so, support to the uterus doesn’t remain in same position. Due to this, uterus comes out if any little imbalance is happened. They have found that all these stages naturally come into their life and thus may invite POP. In addition, the elder women have found that though it came out, it didn’t do much harm when they were young and strong. Their strength dominated the disease. Later on, along with the increasing age, the strength also declined and it started to dominate their body.
Physical structure of the house, demanding family situation, non-understanding family members and steeply geographical terrain collectively are causing them to have POP disease in such conditions. From their miserable experience, these women are aware of such vulnerable bodily times and have realized the need for proper care during those times. So they suggest their daughters, daughters-in-law and other young females to be careful and to take care of their body during such time.
3.3.4 Excessive Number of Child Birth
These patients have found excessive number of child birth as one of the factors propelling the POP. In subsistence based agrarian society because of the economic importance of children, they were having many children till the women could give birth. Such practice was also supported by the cultural idea that one has to accept the children no matter how many the god wants to give them (Vagawan Le Diye Jati Hat Thapne). Son preference and excessive rate of infant mortality were also responsible for the high rate of child birth during the earlier days. Six to eight children were common among the women above fifty years of age.
For various reasons these days couples do not want to have many children. They do not want to adopt permanent means of family planning, besides other reasons, thinking that it will weaken the body. So they opt to have temporary means of contraceptive. In stead of using substances like condom and pills, not to make the intercourse disturbing, they chose Depo-Provera injection. As Thuli Shrestha who kept this for fourteen years opines that, it is the reason for her POP problem.
3.3.5 Familial Situation
As a part and process of patriarchal marriage, women have to leave their natal home and go to live with their husband’s family. Some of the women say that the problem begins
for the women from this point onwards. Not only have they had to leave their parents but they also have to give up their privileges which they were enjoying at the natal home.
Most of the women have been living in joint family along with their mother-in-laws and/or daughter-in-laws. Their relationships with the in-laws are often not harmonious. Many elder women and some young women have mentioned this as a factor causing their uterus prolapse. This contributes in many ways like increasing the work burden, lack of nutritional food, lack of care even in time of dire need and psychosocial pressure. From their narration it is obvious that POP emerges as a bodily manifestation of her social, cultural and economic burden.
Some of the women have presented that among the in-laws, for them, it is difficult to tolerate and stay together with women. They are also claiming that women are the greater enemy of women. To get relief from that some of the women have opted for separation from the joint family. As Maili Aryal says, she is happy after the separation. In contrary to Maili’s argument, some women are saying that they could not get proper care during the pregnancy and post natal period because they were in the nuclear family and the husband had to go for work as she could not go out. They were missing the care; mother-in-law or other females would have provided had they been in the nuclear family.
Likewise, few women are having problem even with their husband, even though they were not living with their in-laws. Pyari Shrestha (name changed) is frustrated with life and do not want to live. She thinks death would be better than living in such situation. She does not have father-in-law and mother-in-law but her husband scolds her for not working even if she is weak. She can not do anything other than weeping. He scolds daily but more after drinking alcohol.
3.3.6 Pregnancy, Delivery and Post-Delivery Care
Health personnel at Chhatre ORC think that lack of pregnancy care is the prime reason for POP. Most of the pregnant women from both the areas complained about the heavy work and lack of support during the pregnancy. In addition, most of them gave birth to their child at their home with the support of the unskilled traditional birth attendants (TBA) or with the support of mother-in-law and/or other women from the locality. Maili Aryal, a representative of common women in the locality, gave birth to all children at home and says:
During each delivery, I got heavy bleeding. The first daughter is the only one born soon after two days delivery pain; all others were born after seven days delivery pain. Instead of taking to hospital, my family members (mother and brother in law) used to leave me at the mouth of death.
Timing of delivery also has become a significant factor causing POP. As subsistence agriculturalists usually village women do not have much time for rest during the whole year. However, they are busier in the rainy season for cultivating rice and in the harvesting season. And when birth takes place during cultivation or harvesting season
women will have little opportunity to get adequate rest. Durga Khakurel‘s story could represent the situation of some of the women-
Always I gave birth at cultivation season or some peak hour of agriculture so I had to work after 112 days of delivery. After 11 days, I had to prepare food for 18 members, feed own baby, clean home, wash clothes, give water to cattle, wash all the dishes etc. made me weak.
Likewise, unsafe home delivery has been regarded as another risk factor for the POP. A female community health volunteer (FCHV) from Kabhre thinks that home delivery becomes more complicated when the women take support of traditional methods for the assistance of delivery. They put hair inside the mouth of a woman thinking that she feels vomiting which will create stress in her stomach leading to easier birth. If it does not work, they ask the women to hang on the rope so as to have stress in the stomach and deliver baby by force. She has found that both of these methods are very dangerous and they are the main reason of POP. In line with her argument, one of the community members thinks that high prevalence of POP is found among the women in Khanalthok, Kabhre who gave first child birth before 2045 B.S when there was no access to health care service at the locality.
3.3.7 Smoking
Smoking has been reported as one of the main causes behind the POP problem. Although many women do not want to disclose their smoking habit, however, they have revealed that they do smoke. Despite keeping on smoking, sometimes they do deny that they smoke. This shows that these women are aware of the consequences of the smoking. So, it is not the problem of lack of awareness/knowledge rather a matter of behaviour and practice. Coughing emerging from the smoking has been reported as a risk factor behind fallen uterus. In addition, the prevalence of cough and chest problem also hinders further medication including barring her operation.
3.3.8 Under-nutrition
Many women are relating their POP with the lack of nutritional food in different stages of their life and mainly during the crucial periods when they are thought to have become weaker such as during the pregnancy, child birth and illness time. Some of them even did not get enough meal. Women from poor family were suffering from under nutrition and inadequate food. The discriminatory social practice of compelling the women to eat after all male members at the end had also deprived them from adequate food. They were not allowed to eat before any male members. For daughter-in-laws, it was just beyond imagination. Sainli Tamang thinks that inadequate food is the culprit behind her two miscarriages as well. Besides, some women think that those women who are living in large family will not get enough foods.
2 Till eleven day, culturally, they are prohibited to go outside the home and field. Only after the naming ceremony of the child and purification of mother and child on the eleventh day, they can go out freely.
Lack of sufficient water in the locality has also deprived them from the nutritive food. They even do not have sufficient drinking water. Declining their nutritional intake, crisis of water has caused the local people to consume less green vegetables. For the last few years, they have experienced that rain is not falling on time and there is no source of water in the village. They have to walk for almost an hour to fetch a vessel (approx. 15-20 liter.) of drinking water.
3.3.9 Work Burden
All of the women, regardless of their age, told that the main cause behind occurrence of the POP disease is work burden. They had done heavy works all the time in their life. They did all the works, considered as light works, inside the house from cooking to cleaning. They had to fetch water both for the human and for the domesticated animal. They also had to do heavy works outside the home in the field and farm. Carrying heavy load creates the problem excessively. Unable to avoid work burden, some of them used to cry when they were alone.
Many of them did not have rest even during the pregnancy and delivery time. Some of them have started working immediate after the child birth. Women from poor family did not have any one to support them as others have to go for wage laboring instead of supporting her. Some women from the joint/large family also suffered because of the pressure from their in-laws and husbands for the works. Many women have opined the “they have been equated with works.” Their existence has been considered as for the works. Without works there is no need of her. If she could not work then the family members threat her that her husband would marry another woman. She would be compelled to work in many ways. Some women had experienced work burden at the joint family whereas others had experienced even in the nuclear family. Others have experienced it in both kinds of family in different stages of their life.
Milan Lopchan, an in-charge of the ORC at Dapcha and a health assistant (HA) by training, thinks that prevalence of POP disease in Khanalthok area could be high while looking at the visiting patients from the area. He has found that women of 20-27 years are also having POP disease. Khanalthok is located at the top of the steeply land. This is a dry area with limited source of drinking water. As usual elsewhere in rural Nepal, women have to fetch water from the water taps. They have to be in queue for 3-4 hours to fetch a Gagri3 of water. Several vessels of water are required for the people and for the domesticated animals.
There are many works that only has to be done by women in Nepalese society like, cooking, cleaning, bringing water (it does not matter how far is it), take care of children and husband, grinding cereals. These are considered as the women specific works and it has rooted into the culture. In addition to these women specific jobs, she also has to do other various agrarian works in the field. Combined together these work burdens become the cause behind the POP. Some men also admit that they did not try to reduce the work
3 Usually a metallic vessel used to fetch and store (drinking) water.
burden of their wife during pregnancy and delivery due to the fact that it was shameful to take care of his wife in front of his parents. Had he worked for her, people would have called him “Joitingre” (henpecked).
As subsistence agriculturalists, people have to labor hard. However, the degree of hardship is different for male and females. There is a gendered work load. In addition to pursuing their works, women had also to pay attention that her works is visible to others/husband who can see that she is doing works. It does not mean that men do not work at all. Men also work in the field and at home. They are also found enjoying leisure and playing cards commonly in the area. Whereas, women have little or no time for leisure and rest. Representing her life experience, a woman from Chhatre concludes that women are only for suffering and men are for relaxation.
The burden of work varies across the locality. It is still heavy in Chhatre than in comparison to Jeevanpur. Availability of infrastructural facility especially that of the road transportation, have reduced their burden of carrying of heavy loads. Newly opened business opportunity have also reduces their work burden as they can work at home/restaurant in stead of working in the field. Likewise, increasing educational attainments of the men/women have made them aware of the problem and take care of their body. Some times young children, especially daughters, are advising them how remain healthy in addition to helping their mothers in their works.
Nevertheless, these days, situation has been gradually changing. Some men (both the husbands and son) have begun to help their wife/mother in their works and provided adequate rest when they are in need of it. Vairam Thapa proudly says how he and his kids cared far his wife in her post operation days-“We cared for her for two months, we did not ask her to do anything except cooking food. My son used to fetch water and I used to give her meat and other nutritious food on time to time.” He feels that the surgery was necessary to his wife and it has changed nothing to her relationship with his family. Some of the sons who have been away to work abroad are found telling their mother to take care of his wife in her pregnancy and post-natal period. Dub Kumari Khanal from Khanalthok has also found that these days men have become understandable. They have realized that women are weaker than them and help them even by doing everything.
3.3.10 Poor Economic Situation
Most of the women from the area have linked emergence, exacerbation and maintenance of POP with their poor economic situation. Work burden and lack of adequate and nutritive food had been directly linked with the poverty. Poverty has caused to weaken their body. For a long time, before the availability of free operation facility, they have been barred to have proper and on time treatment. Many women have returned from the hospitals without having operation as they could not afford to pay the potential cost. Poverty had caused them to carry the disease for several years.
3.4 Inheritance of the POP?
Several women have told that some of their close relatives also have POP. These relatives include their mother, daughter, mother-in-law, daughter-in-law, and sister-in-law. Some of these women are from the same village whereas others reside in the distant locations. Few young women are afraid of that they might be entrapped in the vicious circle of the disease and next will be their turn to have POP.
Elder women often said that they have learnt from the experience of their disease and attempted their best to avoid to their youngsters. They have been advising their daughters and daughter-in-laws to be careful with the risk factors and consult the doctors on time in case they are affected by the disease. As they are living in different places/households, they can do little to their daughters. They could do much to their daughter-in-laws. Some of the daughter-in-laws are still complaining that they are not getting adequate support from their mother-in-laws. It seems that conflict between the mother and daughter in law has also been the factor to handover the POP from generation to generation.
The far and wide spread of POP denotes that in stead of some local variations, there could be some general factors and situations causing it. So, only the mother-in-laws are not to be blamed for this. Likewise, some mothers-in-law are advising and taking proper care of their daughters-in-law. As Gita Bhetwal appreciates her mother-in-law that the latter is asking her to take adequate rest and proper care of her body. Despite her mother-in-law’s good wishes Gita has to fetch water, bring grass and help her for household work. Nevertheless, she knows that in comparison to her mother and mother in law she has not to do heavy works. In contrast to earlier time when their mother and mother-in-law were suffered, she can tell her mother in law if anything she cannot do.
3.5 Attitude towards and Hiding/Disclosing/Talking about the
Most of the patients, when they knew that they have some problem in their uterus, did not tell about their problem to anyone. As a problem in sensitive sexual organ, they did not share anything rather tolerated it. Talking about sex and sexual organ and thus the disease related with them are highly stigmatized in Nepalese society. As Foucault (Foucault quoted in Rabinow 1984) opines, sex has been repressed in the locality; talking about the matters associated with sex and sexual organs are looked upon. Therefore, any normal human being would not talk about this. Some women did not share about their problems even to their husbands. Some of them still believe that their husband died without knowing the fact that their wife has had POP disease.
Some of the women did not tell about their problem thinking that sharing about the problem is not going to reduce their problem rather only people know about their situation. Durga Khakurel had previous experience that her husband did not take her to
the hospital when her baby died in the womb. So, she did not tell him about this disease as well for 18 years until she knew about the availability of free operation.
Women also have fear of isolation with their friend if the disease is exposed. Most of the patients said that they always used to hesitate to live among their friend because of bad smell. People even used to regard those types of women as dirty and do not accept food from her. Exposing the disease was thus associated with the loss of prestige. People used to give derogative nick name to the women having such problem. So, when they could not tolerate the problem or could not hide the consequences like bleeding, then they pretended having other common disease like fever or headache which are not looked upon and thus not shameful.
Associated shame had compelled them not to tell anyone about their problem. Some woman thought that she is the only one who had this problem and for which she felt shame. Finally when they knew that many women had such disease and often others also hide it. Often they knew about the prevalence of the disease among the other women from the health centre. Some elder women felt comfortable to expose their disease at the ORC, when they saw that even younger women are having such kind of disease. Their argument shows that knowledge of commonality of the disease to other women makes it less burdensome and less stigmatized. This reflects that these women do not want to be considered as “the others” having distinct and uncommon health problem.
Some women have exposed their disease when they knew that it is curable. They would not have told this to any one had they realized/felt that it is an incurable disease. They tried to protect themselves from being public about their situation. It seems they also sought the protection, which I think is the main goal of medication. But they sought differently; not letting their image down in the family and in the society.
Some women have heard that they could die during the process of an operation of a sensitive organ like uterus. Despite such rumor, considering their present situations not better than the death itself, some of them dared and went for the operation challenging the rumor that operation of uterus kills the patient.
Most of the patients were unwilling to show their sensitive body parts to the doctor; feeling guilty regarding it as a sinful act. One of the patients also shared this feeling with the doctors. The doctors tried to convince her that it will not be sinful in case of the treatment. The notion of hesitation to consult the doctor seems to have at least two dimension-social and cultural/religious. At social level, they feel shy to show their sensitive body parts to others. Whereas, at the religious-cultural level they believe to acquire sin by showing their sexual/reproductive body parts to Parapurusha, the other ('s) man (husband). The emerging medical technology has also contributed gradually to decline religious practices and ideas. Women have chosen medical chore to recover health. On the other hand, crossing the Hindu religious boundary of not showing their inner and sexual/reproductive organs, they have been showing to other males. Through this practice, they seem to have been challenging religious beliefs/ideas which may have long run consequences.
In contrary to their presumption that people will look upon them due to this kind of disease, when they shared, some people were of the opinion that they should have told it earlier and it was very dangerous to hide the disease. They advised her to have operation. Then they realized they were wrong not telling the problem to others. Therefore, in addition to “enacted stigma” (Scrambler & Hopkins 1986; Jacoby 1994) which
prohibited them from participating in many spheres of public life, the wide prevalence of “felt stigma” (ibid.) was also found among the patients.
Some incidents have played a great role in which their disease have been exposed to their family members, relatives and friends and they were compelled to tell what really had happened to them. Sunita Bhetwal’s story portrays how certain incidents have played critical role to expose their illness-
Once she was preparing meal for wages labourers in big volume. She got bleeding but she kept on doing the work ignoring it. When her seat soaked with blood, then she went out with the seat; to hide the problem. But her son saw it. She didn’t see him and also he didn’t tell her anything on the spot. A health personnel was his friend and he told it to him. Then, the health personnel came to her and requested her to go for the treatment.
The incident that make Moti Kumari’s POP problem public is quite different than that of Shubhadra Bhetwal. Once she was bathing and her daughters in law saw some drops of blood. They considered it as her menstrual blood in such an old age. Sometimes women share their problem when their situation is wrongly understood as another and often as “bigger” problem. In Moti’s case when her daughters in law saw some drops of blood from her body at the age of 70+ she was surprised considering it as a menstrual blood. As menstruation denotes compatibility for pregnancy and thus sexually active it became more shameful and thus problematic for her. So, she told her actual problem to protect her from another serious problem.
Some of the women have found that telling about the disease to their husband have helped them a lot. After knowing her illness, her husband gave up beating Hari Maya B.K. Some of the women have chosen their friends to tell about the disease at first whereas other have chosen their mother-in-law, husband, mother, daughter/son and daughter-in-law.
These days the situation has changed and people do not backbite and humiliate others for having POP. With the changing situation, women have begun to share about their problem/disease and have begun to consult the doctors for treatment. Many women think that this has happened because of education. Maili Aryal thinks that the situation is changing at least partly. Her opinion is similar to the experience of Milan Lopchan that when women visit the ORC for POP diagnosis they want it in absence of other women from their locality.
3.6 Impact of the Disease
This disease have affected the patients and their significant others, especially family members in different ways. As an ill person they are affected and as a social being their illness and emerging bodily situation had affected their family members.
3.6.1 To the Patient
All of the patients have experienced difficulties in pursuing everyday and routine household and outside work. They cannot stay away from doing their agricultural works. Despite their physical incapability, they have to take care of the children and other family members, they have to do agricultural works and they have to involve in societal and ritual activities in their surroundings. If the patient would not found some one to support her, she will have to carry on the works as earlier and this makes her vulnerable to re-prolapse. In contrary, they find themselves in difficulty simply to walk. While walking, the prolapsed uterus has to be pushed inside frequently by hand.
Sometimes they have wound at the outer/fallen part of the uterus emerging by the friction with the clothes. They also could not eat full stomach. If eaten full stomach, they have found that the uterus comes out completely. Gradually they loose the appetite because of the fear of prolapse. They are getting thinner because of the disease that they can not eat adequately. It was also creating difficulty in toileting and especially during the urination.
The regular discharge of the white substance made them change the undergarments regularly within few minutes of interval. Despite that, it used to have strong smell causing them problem to sit with others whether at home or at work. Govinda Tamang have experienced that his wife could not go any relative’s home as a guest because her uterus used to come out along with bleeding. In every 10 or 15 days, his wife had to change her Sari in every five minutes because of bleeding and white discharge. He thinks POP is a disease which neither lets to go to relative’s home nor to work.
Most of the women have experienced pain during the sexual intercourse. Some of them shared this with their husband. Most of those who shared with the husband have found their husband understanding and abstaining from the sexual intercourse whereas others have told that their husband is not understanding and thus want it whatever might happen to her. Other women with the higher stage of prolapse have been avoided by their husbands.
Husband of most of the elder women with prolapsed uterus had married another woman. They think their prolapse problem is responsible for that. When a husband marries with another woman, women found themselves deprived in many familial and social opportunities. They would found themselves in multiple troubles. They are either denied to share property or they have to loose the property significantly. After marrying younger women, the husband often lives with the new wife. So, the elder wife has to do all the household work and take care of the children. When they have severe prolapse problem,
so, a woman often fear that her husband might marry with another woman. Considering their sexual incapability, it troubles them constantly.
In view of the severity of the problem to his wife, Shiva Humagain thinks that it affects only the patient not to others (but only in negligible degree). Often they have to listen to complains from others about their inactivity. With all these consequences, they have to live in stress and tension. Because of her severe problem and suffering, many women prayed with the god not have a girl child. Their family members think that all forms of pain and grief have come to suffer them.
3.6.2 To the Family Members
Pelvic Organ Prolapse in a woman has wide range of repercussions to all the members in the household. As they are physically incapable, someone has to carry on her work load additionally if she cannot pursue this. She had to be taken care by them. The family had to spend some significant amount of time and money for her. Some of the patients have found that their children have to curtail their studies to support in the household works.
As they cannot work, often they have quarrel with their family members especially with the person who does the works in stead of the patient. This has caused quarrels often among the mother-in-laws and daughter-in-laws. Sometimes it exacerbates the conflict between other family members also when they have contrasting opinion about the rest and care needed to her. Durga Khakurel had to separate with her elder son and his wife after a month of her surgery because her daughter-in-law did not want to see her as “sleeping”.
Chapter-IV Managing and Curing the Disease 4.1 Preliminary Attempts to Manage the Problem
When they found that they have had the prolapse problem, initially, most of the women tried to manage it in their own way in the prevailing social, cultural, economic and health delivery context. They have adopted both the curative and protective measures. When they found themselves as unable to cure the disease, then they have attempted to cope with the consequences/severity of the disease.
Over the years they have been hiding the disease as a proper way in the context of widely prevailing stigma. They were hiding, not exposing, not talking about the disease. They have tried to silence the disease as much as they can. With silencing they have denied the existence of the disease. All of the women tried their best to Khapnu (tolerate/bear) the pain. With bearing the problem, they also denied it as a major health problem rather a physical inconvenience. Till now, they were managing their everyday works, even though it was not easy to conduct. However, as they were accomplishing their tasks, they believed that usually it was not noticed by the others. While hiding, the main problem they faced was the inconvenience in walking/carrying load and in sitting. So they lagged behind others while working together pretending as feeling weakness. When one projects one’s body as a weak, then she gets relief at least temporarily from usual expectation on the job she is doing or on the job she is supposed to pursue.
When they are alone, some of them used to weep if they got severe pain. They think that weeping helps to express pain within oneself. When they could not tolerate the problem or could not hide the consequences like bleeding, as Sani Vetawal portrayed, then they
pretended having other common disease like fever or headache which are not looked upon and thus not shameful. With the projection of body in common ailment, without exposing their Lukuwa Rog they found the way to have rest.
Once the disease is known, usually to the few people among the family members, they tried with some local and herbal medications. Although some women think that there is no traditional method of treatment for the POP. Pointing to the some aspects of traditional healing, Santamaya Tamang opines “we have disease inside our body and what's the use of praying outside and scarifying chickens and egg.” nevertheless, they have been adopting different techniques which they think relieves the pain only not the cure of the disease. Some of them massaged the stomach and out coming part of the uterus with hot oil to relieve the pain and make it easier to go inside into its own place. Others have increased the intake of nutritious food, both available at home and bought from the market. While working in a group or alone or sitting/walking with other women
most of the women pushed it inside by the Sari she was wearing. This gave them temporary relief and often it also helped them not to expose the disease to the others.
Those women who already had POP have been taking precaution to their younger women in different ways considering the risk factors of the POP they have realized. They have been trying to reduce the risks and helping their daughters/daughters-in-law to take much rest and to eat sufficient and nutritious food in the time of pregnancy and delivery. Continuing the local practices, some mothers-in-laws are sending their daughters-in-law to their natal home for rest after her child birth.
4.2 Seeking Biomedical Treatment
With the failure of all of the efforts at home/locality, they consulted the doctors/medical professionals. Usually they return with some medicines for the treatment of the part of the problem which they portrayed to the health professionals. Sometimes they simply went to the pharmacists and bought/bring the medicines as he advised them. Some of them kept the ring at the initial stages of the prolapse from different hospitals in Dhulikhel and Kathmandu. Some of the patients have kept the ring for more than a decade. They have mixed experience of the outcome of insertion of ring; some of them have been relieved by it whereas others have found increasing problem like itching and bleeding.
When other medications could not heal the problem most of the patients and their family members have felt helplessness. In the mean time, they came to know about the availability of (free) operation of the POP. They knew about this from different sources. Some women came to know during their visits in local health centers for medical consultations for other disease. The way Dhulikhel Hospital disseminates the information facilitates the patients to know about the availability of treatment facilities.
Dhulikhel Hospital has been conducting free health camps in its different out reach clinics (ORCs). To inform people, information is spread through different channels. Health workers inform the visiting patients. Posters informing about the camps are pasted at the sides of the local bus. Local people from the vicinity of the ORCs inform their potential needy relatives/family members. The camps are held for different diseases including POP, general medical problems, eye and dental problems. The selection criteria of the patients for the POP surgery they have adopted includes first come first basis with due consideration to the severity of the case and their economic status.
4.3 Access to Treatment/Surgery
Many women are not having opportunity to go for the surgery even though they have heard about the availability of the treatment/operation at (Dhulikhel) Hospital. Some of the young women were complaining that their husband did not allow them to go for the treatment thinking that ultimately they have to do operation which will incapacitate them
sexually and make them unable to conceive. A lady from Chhatre-1 was complaining against her husband that he did not allow her to have uterus operation at the young age. But this time, she is coming to the ORC to show to Dr. Mary. In contrary to the existing beliefs and practices, many young women also came to seek medical support with a foreign doctor. The status of a foreign doctor has also helped them to come to the ORC.
Husband of some of the woman confess that they could not send their wife to the hospital because of their weak financial situation. Many women agree with their husband that they know and they have experienced their poor economic situation. However, considering the financial situation and allocation of resources of the household in different sectors, it seems that most of the time it is not only the lack of money rather a matter of priority. As many women had not told their husband exactly about their health problem, so their husband are not willing to spend for the potential disease which even had not barred their wife to pursue their everyday works. Some women think that the prevailing opportunity of their husband to get married with other women also makes them vulnerable to disease and keeps them away from the proper care.
These women and their family members have tried their best to arrange for the treatment/surgery. Usually the cost of surgery is huge considering their poor economic situation. To compensate their lower financial capital and thus weak affordability, they often try to manage it at free or at reduced cost using their networking, a social capital.
These women have realized that had they not been vocal/spoken, there would not have been any possibility of operation/treatment. So, they have learnt from the disease how to accomplish what they want. Hari Khadka’s narration about how the POP operation has become free in the locality also depicts the village women’s increasing participation in the public life, showing concern for the public matters, claiming their rights, and above all increased confidence and looking for the opportunities even in the adverse situation. This case also denotes that to get remedies for "feminine" problems, women themselves are raising their voice into the public arena:
During one uterus check up camp, mother of Madan Khadka4 from her locality informed the doctors and hospital personnel that they have been getting free medication/operation for eye and teeth. Presenting this as evidence, she asked why not for their (prolapsed uterus) problem? Hari Khadka thinks after then, the camp came and they went for free operation.
4.4 Remembrances of the Surgery Procedure
All the women who have had POP surgery are not sure about the exact procedure of the operation nor do they think that they have to know this. Nevertheless, they have had some kind of understanding and perception about the surgery vis-à-vis its impact on their
4 Usually in rural areas people do not recognize women by her name but by her kid's name and/or by her husband's name.
life and body. Some of them who were afraid of operation, after the operation felt that finally they are alive and nothing will going to happen then.
With the effect of anesthetic process, many women felt unconscious before the commencement of the surgery and they do not know anything about it. Some women could not become fully unconscious. These women heard sound of the scissor cutting their body. Most of the women told that they did not feel pain during the operation. Hari saw how they have cut her body. She saw that the doctors cut some pieces of her flesh and cleaned the wound. Namrakumari Shrestha knows that as she used to take strong syringe for her knee problem, she could not become unconscious.
Few women have felt pain during the operation. Shanti Bharati felt unconscious initially, later on, she felt shock up to her heart (mutuma jhadka lagyo) that they pulled her uterus forcefully and that shock is still in her heart. Before the surgery she did not have any problem except the POP but now a days she has lots of disease like, asthma, gastric, headache, dryness of her mouth, vomiting, dizziness, sleeplessness and pains in joint. She doubts about the surgery that whether all diseases have come to her because of her uterus surgery.
The medical doctors involved in the surgery procedure also have some interesting remembrance in relation to the POP surgery. For some reasons, they may like different procedure of POP surgery in contrary to the official decision of the one to adapt for. Then they create their agency of lying and tell the seniors that they have been following the very procedure. The operating doctor think that though they have been adopting little old fashioned technique but this one is apt in the given case. But the operating doctor could not convince their seniors rather opted the different way.
4.5 Doctor-Patient Interaction and Embedded Power Relations
With limited opportunity to observe the doctor-patient interaction, still some remarkable information have been derived during the research. While having conversation in Nepali, the use of the word to address the interacting party denotes their comparative status and level of power. While talking to a patient, a Nepali doctor was usually addressing the patient, senior to the doctor as the age is concerned, as Timi. This address was labeling the patient as a junior. The obvious factor behind the hierarchy is the level of knowledge; one is doctor who possesses modern sophisticated knowledge about the disease and how to remain healthy and the other is the patient, the ignorant one who has to go to the former to take care of her. Sometimes, this kind of address might make the patients feel uncomfortable and can consequently affect the overall diagnosis and treatment procedure.
Sometimes patients are complaining that doctors do not inform them about what exactly had happened to them. Most of the time patients have felt sorry while they were not clearly getting any response about the name of the disease they have been affected with. Often they feel neglected when the doctors do not listen what they were trying to say
rather ask series of questions from their side only. This one way kind of communication has often upset the patients and sometimes they feel that the diagnosis has not become complete. Such impression constantly bothers patients that whether the diagnosis was proper and complete, whether the treatment they have been offered were apt or not and so on.
Sometimes the patients were also found as exercising their power over the doctors and medical professionals. The regime of modern scientific bio-medical knowledge which provides power to the medical doctors sometimes gives the way for the patients to exercise their power over the medical doctors. The women with prolapse uterus for the first time of their consultation and especially of operation were almost submissive to the doctors. When the operation could not heal their problem or sometimes exacerbated their physical ailments some of the women have asked the doctors to do their operation in a way so that it will not re-prolapse again. Their asking, as they were portraying, was a sort of questioning not only to the medical persons/doctors directly involved in the operation procedure but also to the whole biomedical domain in general.
4.6 Co-morbidity
Most of the patients have perceived that POP could be a risk factor for co-morbidity. Likewise, they have lived through and experienced that with the incomplete or unsuccessful treatment, and sometimes even with the successful treatment, some other diseases do emerge through POP. These patients and sometimes the doctors involved in the operation and/or overseeing the operation have also found the prevalence of co-morbidity with POP, before and after the surgery.
Many women told the researchers that they were still having some physical ailments even after the surgery. For instance, though exceptionally with many diseases with her alone, but what Shanti reported (for detail see 5.4) are also had been mentioned by other patients as well which included- asthma, gastric, feeling of dizzy, pain in joints, and sleeplessness. Nevertheless, they were not making the uterus removal surgery responsible but were in doubt whether it was the cause of these diseases or not. Whereas, inflammation during the urination have often been regarded as the direct consequence of the surgery.
Ram Kumri Khanal and many other women have heard that some POP patients died because their disease turned into the uterus cancer. As a chronic disease and which had been considered as non-curable the most dangerous disease, people are very much afraid of cancer. Therefore, Ram Kumari went to check-up her problem. In this way, the fear of propelling co-morbidity often had forced them for medical consultation.
4.7 Re-prolapse: Unfortunate but Inevitable
Significant number of the patients did not have a first successful surgery and they “needed” and did the next surgery. Several factors have been found as responsible for the
failure of the previous surgery, which includes-social, economic, familial, lack of knowledge and so on. The following story of Damo Rani not only presents her situation but also partly represents many others who are having re-prolapse:
Damo Rani is from a village in five hours of distance from DH. She is 60 years old. She cannot speak in Nepali but understands in Nepali. She was accompanied by her 75 years old husband. Two of his wives died earlier immediate after the birth of their respective kids. Damo Rani is his third wife.She had POP problem since the last 25-26 years. Her husband told that she had POP problem even before marrying with him. Damo Rani had a POP surgery six months ago at Scheer Memorial Hospital, Banepa. She got re-prolapse three months ago. She does not have any complications for urination. She sometimes has sexual intercourse with her husband and feels little pain at that time. Immediately after the operation, she begun to fetch water and thinks this has caused the re-prolapse. Everyday, Damo Rani has to go few times to fetch water. It takes her about an hour to go down to the water tap. Earlier her husband told that only the old couple is living in the home. Later on, during the course of interaction, it was revealed that he does not live with Damo Rani at the same house rather lives with his son from earlier wife. She lives alone next to his house. She has to do everything on her own. She will have to continue the same kinds of works after returning the home. Damo Rani and her husband emphasized for the non-surgical treatment, either to put ring or to have some medicine. A doctor tried to comfort them that this time it is a minor operation. In stead, she advised to sell the land at the top of the hill and move to the lower land permanently. Damo Rani's husband thinks its impossible.
The case of Lalita from Budeu exposes some additional dimensions of the re-prolapse and how the patients want to represent their illness in a particular way-
Lalita had a POP surgery eleven years ago. She was not aware of the need of post-operative rest and considers it as the cause of re-prolapse. In contrary to that, later on she was saying that no one was there to support her works in the family, so she has to do all the works. Among her four kids, at that time, she was living in the village with a 12 years old son and younger daughter and her first son and first daughter were staying in Kathmandu.
She has been blaming the lack of awareness about the need of post surgery care and rest as the cause of re-prolapse. Later on she revealed that it was inevitable for her to avoid the heavy works even if she would have known this. It seems how innocent, unaware, illiterate these women seem to be they have been creating the discourse and shifting the responsibility for her re-prolapse from their side to the other side. It is because, if she would say that she could not manage to have rest, it would have implied and thus exposed any or some of her situations such as poverty, absence of familial support, unwillingness of the family members to take care of her. To conceal her family secrets,
she was blaming the "lack of awareness" of the rest. That means it was neither her nor her family's fault rather it was the fault of the operating doctors who did not tell her about the need of the rest
How Bhagabati Rijal presented her experience of re-prolapse and the factors she had found as responsible for it denote further new dimensions of the re-prolapse-
Along with three other women from her village, Durga had a POP surgery. Others are well and have no further ailment, whereas, after six months she again have a prolapse. She thinks it is because her operation was held in advance of some medical preparation. She wanted to have her operation earlier at the same time with her neighbors as there is no one to care of her after the departure of family members/relatives of her neighbors. Also due that, she left the hospital during the post-operative phase without having adequate rest. On top of that, she blames the lack of proper skills of the surgeon who have operated her. She feels sorry that she was not operated by Dr. Bandana. All of her neighbors were operated by Dr. Bandana and they have no problem at all. When she was advised to have re-operation, Durga told that this time she wanted to do with Dr. Mary.
The common understanding about the POP surgery is that during this process whole uterus is removed completely. Some women have been questioned with surprise by their husband and family members for having resurgence of the POP that how come it can grow like a plant once it is removed. So, some patients opted to remove the uterus completely during the second time.
For some women, in their particular kind of social, economic, technological, occupational, and geographical context, re-prolapse seems to be inevitable. The very risk factors responsible for the occurrence of prolapse vis-à-vis the operation procedure, sometimes, makes the problem complicated and increases the chances for re-occurrence. Women from the poor household and those not getting familial support have been found as much vulnerable for the re-occurrence of the problem.
Chapter-V Effectiveness, Impact and Consequences of the Surgery 5.1 Positive Outcomes of the Surgery
Relief from the physical ailment and impairment have been presented as the positive outcome of the surgery. Their pain went a way or reduced significantly. They do not have urinary incontinence. Now they can eat full stomach and thus have gained weight and have become healthy. Their body pain had gone. In contrary to the earlier heaviness of the body in pre-surgery phase now they have found that their body has become light. With the recovery, they feel that they are getting rid of carrying heavy load.
Many of them are satisfied with the operation and very happy for her bodily transformation that they feel easy. They had been able to resume their household and other works. As much as they can, almost all of them are taking precaution with the risk factors and are pursuing light works like carrying light loads of grass, fodder, manure etc. Similarly all of the women with successful surgery pointed out that the surgery has brought back happiness not only into them but also in the whole family. Now the family members do not scold them nor do they get angry unnecessarily. Some of them had felt that they are having the strength as it was when they were young. They were happy that now they do not feel pain during the intercourse. With the recovery of their sexual strength, their husbands are also happy and their relationships, once degraded, had improved.
With the removal/decrease in their physical ailment and absence of white discharge and bad smell, now they can participate in any societal events/functions without hesitation. They can sit easily in front of others. Their hesitation and humiliation had gone away. Considering this some of the patients regretted on their past miserable life and felt sorry that they did not go for the operation earlier.
Some patients with partial recovery still had some doubts but were optimistic with the outcome of the surgery. Some women have felt weakness and think it could be natural that some parts of their body have been cut and removed. They are hopeful that time will heal that over the years. They are confident that as it was already removed it will not come out again. In line with them, Hari Maya BK thinks that at least the surgery had reduced the fear that she had for the death. She thinks Dhulikhel hospital had been like a god to her. In a similar tone, a lady who has had the follow-up visit at Chhatre ORC told the researcher that Dr. Bandana had been a goddess to her who saved her life through the surgery. One of the patients whose disease had accidentally been known to her son and thus got the chance to get operated, now feels that it was due to grace of the god that her
problem was known to her son. And beyond her imagination, now she got relief from her two decades long ailment.
5.2 What makes an Operation Successful?
All informants including the medical doctors were sure that for an operation to be a successful, skilled doctors and surgery team is a must. Many patients opined that a good hospital is another pre-requisite. They think that Dhulikhel Hospital fulfills this criteria and it offers sound environment for the recovery process. Only one woman with re-prolapse case went elsewhere looking for a good hospital whereas many women have come to DH considering it as a renowned for quality health service.
Likewise, time/season of the operation has been reported as another crucial factor for the on time recovery of the operation. These women think that winter season is the best one for doing operation. During this season, the wound will not be infected and they will get well soon. Usually, if they can they postpone the operation and do it in the winter.
Supportive, understanding and cooperative family members which ensures their post-surgery care including the proper provision of adequate nutritious food, rest and counseling, readiness to go for further medication and treatment if needed have been highly admired as crucial prerequisite for the recovery and non-recurrence of the problem. As the patient has to leave the hospital and stay at the home during the vulnerable post-surgery phase, the familial support had been found as crucial. All women who have complete recovery appreciated the support they get from their family members. Patients also expect visit and concern from their family members and close relative’s when they are in the hospital.
Husband’s cooperation was not only limited in carrying out the household works but also on counseling/sympathizing her and not forcing her until six weeks of operation, for the sexual intercourse. Husband, mother-in-law, daughter-in-law and children provided them support and compensated their works. Many women with successful operation acquired such support at least for two months. Sometimes married daughter also returned to their natal home to support her mother when such support was expected by their mother. Nutritious food and sun bath as has been reported by the patients, also played crucial role for the recovery of their health. Parbati Adhikari, despite being a Brahmin, in contrary to the local cultural practices and ideas ate chicken as additional nutritional supply.
Appreciations from the senior visiting doctors from DH have also helped them to comply with the medication. Many women often admirably reported how their confidence level was increased for the recovery of the operation. Jeevan Kumari Sigdel went for follow up and the doctor appreciated her improvement process that “you are all right and there is nothing wrong (remaining).” It also denotes that besides experiencing betterment and comfort, the assurance from the health personnel also confirms that they have become healthy. The operating doctors have also realized that in stead of earlier (or
conventional?) practice of “leaving” the patients after having surgery. Now, they have been doing regular follow-up of surgery patients. Currently, they regularly visit for follow-up at ORCs.
5.3 Adverse Impacts of Operation
The women who complained about the failure of the surgery mentioned that the surgery had not been able to heal their problem. Their physical impairment and health situation could not improve. They mentioned the continuation of all or most of the problems they used to have before surgery (for the details of pre-surgery problems see 4.2). Most of the women also mentioned some excessive diseases resulted as co-morbidity and consequent-morbidity in the post-operative phase (see 5.6). Besides, some of them have experienced the pain and infection of the wound. They could not fold their legs. All these physical ailments combined together, sometimes adversely affect their psycho-social health.
Some women have experienced more weaknesses and declining strength. Sometimes they regret for doing operation. Shanti Kadel expected that after removing her uterus out everything will be all right. But now the situation has become more problematic. Then she consulted another doctor (Dr. Bhola Rijal) at another hospital. Jeevan Kumari Sigdel currently has two major problems. Every day after 3 pm urine inflammation starts. It goes on increasing and many times she was not able to eat her meal at night because of this. She can’t speak when this problem becomes severe in the evening/night. So, she has to sleep without meal. Another problem she has is constant pain at the place from where injection was given, though it pains regularly it becomes higher at the time of coughing.
In several cases, disharmony has emerged among the family members regarding the time and care required for the operated women, whether she was a mother or a daughter in law. Disharmonious relationship has been found both as the cause and effect of the failed operation (for this as a cause see 4.1). As consequence of late or no recovery and their inability to resume even light works, as Shanti Bharati’s husband opines, they sometimes have misunderstanding and quarrel because there is nobody to work in the family. He thinks such minor quarrel is common to every home but it does not affect their relationship in the long run. Parbati Adhikari have had regular quarrel with her daughter-in-law and the latter complains her for not working in the post operation period and asks her to go with her son who is working in the gulf. Now she feels that she should have done operation earlier. Had she done it earlier, she would not have to stay being sick like this, she could get strength and energy. She did operation at the old age, her disease became stronger than her and she couldn’t get energy now.
Increasing expenses and constant ailment irritates other family members. That sometimes becomes a source of dispute. Some patients opined that had they been recovered they would not have to fight with family members. Likewise, inability of the patient to work also has a financial repercussion which ultimately complicates their relationships. Most of the patients whose operation could not relieved them from the ailment regret on doing
operation. Some of them thought that they should have taken medicines in stead of doing operation. Had they taken medicine it would not have injured their body.
Lack of post operative care and rest have been found as the key factors of failed operation and thus creating adverse impacts on the patients and their family members. Most of the times, although people were very much aware of the need of post operative care and rest, they could not manage to have it because of their poor economic situation. The inevitability and pervasiveness of risk factors had barred improvement in their health.
Essentializing Surgery: Medicalization of the Problem
The language health personnel use and information they provide and the stock of knowledge patients and their significant others have accumulated denotes that treatment of the POP in the study area had been equalized with the operation. Likewise, looking for the unilateral medical solution of this socially constructed problem denotes that POP has been medicalized. Sharing her experience, Krishna Pyari Shreshta had tried to inform her daughter and daughter-in-law about the POP. She suggests them to have surgery on time. She further adds, “operation is needed in women life otherwise the POP damages inside, it may increase to cancer”. With her failed operation, what Shanti Bharati said also proved that how people equalize treatment with the operation that she would advise for operation if any of her family members will have such problem. For her nothing is important than body. And to protect the body operation is necessary. Many other patients who did not go for consult because of the POP problem for a long time also regretted that they did not go for operation (not the treatment) on time and thus had suffered from the disease.
In addition to equalizing treatment with the operation, essentialization of the surgery had also been found deeply rooted in the mind of people. A conversation between the doctor and a patient which I was observing clearly points to this. I heard the Dr. saying to Maya Subedi that it is not necessary to remove her uterus as little part of it has only come out. Listening to her the patient replies-"Earlier it used to come out more”. Later on I came to know from the doctor that by claiming this she was trying to create the discourse that her problem was severe and thus requires operation. This also indicates the medicalization of the problem.
Local health workers at the health centers serve people at the beginning and create long lasting impressions and beliefs. Actually they are the keys for people to be familiar with the biomedical regime. So, how they characterize the disease, its causes and potential remedies would construct far reaching consequences. A local health personnel at an ORC characterizes POP as a chronic disease for women because it will cause very discomfort for them and the only treatment for it is operation.
The language doctors are using while communicating with the patients sometimes have been creating the discourse that operation is inevitable; eventually the patients have to go
for it. When Jeevan Sigdel came to know that her daughter-in-law has pop problem then she encouraged her to go to an ORC to consult the doctor from DH. They have understood the doctor’s advice as “the time for the operation has not come yet”. This implies that she has to wait till her turn comes for the operation. This kind of saying creates the discourses that operation is inevitable for the cure. It means, it does not say that she can be cured without having operation or it emphasizes that she needs to have operation for the complete recovery.
While talking to a highly admired gynecologist at DH, the doctor mentioned that these days it has been realized that they have to focus more on prevention rather than on cure (of the POP) including the operation. That doctor’s saying also reveals that essentialization of operation and medicalization of the disease had been deep rooted in the mind of senior doctors as well. Though the senior doctors at the hospital have realized these days that they have to focus on preventive care instead of curative aspect, the local health personnel still seem to be inclined for the medicalized solution of the problem. This denotes the communication across the hierarchy of the medical professionals.
A medical doctor from abroad knows about the mobile medical camps held in different parts of rural Nepal meant for diagnosing POP problem and offering treatments; she feels sorry about the way they were conducted. She has experienced, observed and felt that Nepalese gynecologists are removing the uterus and think that this is the ultimate solution. She thinks either techniques or technologies involved are may be insufficient and there is no follow up at all. She has an impression that Nepalese doctors are not paying adequate attention to the “informed consent” of the patients that these doctors do not want to know patient’s view regarding whether they want to have (POP) surgery or not. She is aware that people might take her remarks as arrogant Western ones. Although the strength of this argument could be declined by questioning whether biomedicine has universally generalized norms and practices or it can be localized in different parts of the world as per their local context.
Nevertheless, she has realized that it is a very difficult task to give them objective alternatives. She thinks in stead of focusing on their "medical pathologies", attempts have to be made to offer them choices considering them as individual. To offer the patient realistic choice, the doctors have to know her situation, her way of living, what she likes and prefers and above all what is important to her. She is sure that the doctors cannot take a medical problem alone out of her context.
The very medical doctor from abroad think that the woman's will at present to remove the prolapsed uterus is her "constructed need" and it is not her "felt need". She thinks such needs might have been construed because of the health awareness programs launched in the area. If operated, it will harm her "normal" way of living. (It is normal because she has been living like this over the last several years.) In the case of operation, for instance, it will be a disturbance on the delicate balance of that 87 years old fragile woman's living. She is clear in her mind that Nepalese women are also have the rights to know what is going on around the world. The people responsible to oversee their health, she thinks, has to pay attention to whether the operation will make them happy or not. She thinks,
instead of making them "aware” in a particular way only, they have to be offered choices.
5.5 Construction of Self and Identity
In the rampant “presence” of the POP and living with this disease for some years, women have had inculcated certain perspectives to look at their individual self and the social self and identity of women in general. Therefore, construction of self and identity has been highly influenced by the disease and the situatedness of their self as a woman in particular social, political, economic, cultural and medico-technological context.
Socialized through particular cultural ideology, all of the patients were hesitant to show their sexual organs to other males. Some of the patients felt guilty with themselves as people looking at her, her body parts and touching them. An old lady felt that for such a long time she stayed hiding the problem and regrettably in this old age she had to show her body. Had she assumed this, she would not have gone there.
Most of the elder women feel sorry on being women. They think women’s life is not good as that of men’s. They have experienced that women’s life is full of grief. They think that misery is indistinguishable from their identity. Women have to live through various miseries and diseases. While projecting women in a particular way they have been referring to the fact that they have to conceive baby and give birth. They sum up their saying that it is better not be born as a daughter in the earth. Feminine task of conceiving the baby and giving birth to them and the difficulties associated with them have worsened their life. While saying so, some of the women opine that though they know that the world (sansar) cannot run without women but they would not have been a woman had they been given a choice. Considering their whole life situation as miserable and thus knowing one as vulnerable to many diseases including the POP, they seem to have inculcated such perspectives. Though the life situation in general in the study area is not in comfortable, but the situation of women is far more adverse than that of men. Observing the privileges of men in the women suppressive patriarchal society, some of them opined that had they been lucky they would have born as a man.
Realizing the oppressive societal structure against them, they have inculcated some ideology which helps them to cope with the situation. Women have been comparing themselves with the earth. So, they think to be a woman one has to be bearing and tolerant to the pressures and oppressions which will come into her life. On top of that, Nirmaya BK opines, she has to rely on others and she has to go to others’ home. They get physical and verbal violence and torture from these “others” (referring to the family of the husband). There is no certainty and in their life ways. Neither can they predict nor can they choose to have particular way of life. They have to be submissive to, adds Sani Maya Lama, whatever comes in to their life. In contrary to such argumentation, some women think that it is not bad to be a woman only when she can have adequate property.
Most of the women have characterized their uterus as a “bundle of diseases”. With its removal operation, they are happy. They experienced their body as light through its removal. Many of them felt as if they got rid of the heavy load. All of the women who already have adequate number of kids, opted for the removal of the uterus. With the surgery some of them have felt that they were able to have next life. They think it is incomparably better than the previous one. Although most of the women have regarded the process of conceiving and giving birth as a root cause of problem, however, they are also emphasizing that one has to have POP surgery only after having two-three kids. Hari Khadka had found her in new self and thus had highly regarded her bodily transformation. Referring to the getting rid of dirt, she thinks that with her new self, now she can live amidst her friends and other people.
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