Study of Experiences of Women Living With Genital Fistula
Study of Experiences of Women Living With Genital Fistula
The results are presented below in two sections: the socio-demographic characteristics and the women's experiences of living with a genital fistula. Women's experiences are presented according to the four themes that emerged, and we use relevant quotations to illustrate and validate the categories.
A general profile of all the study participants is presented in Table 1 . Altogether, 56 participants between 14 and 60 years old participated in the eight FGDs. The median age for the participants was 26 years with an inter-quartile range of 19 to 38 years. The women had lived with a fistula for a period ranging from one and a half months to 40 years. A total of 32 women (57 %) were divorced/separated, 14 women (25 %) were still married and 10 women (18 %) got the fistula when single and were still not yet married. Of the 56 women, one had a fistula from childhood (congenital ectopic ureter) and the remaining had a fistula following childbirth (obstetric fistula). The group selection was important for the women to freely discuss their experiences. The women generally gave a coherent story regarding their experience with a fistula, irrespective of which group they belonged to; and hence our results are not segregated per group, as the study was not designed to compare intergroup variations.
In the analysis of the lived experiences among women with a fistula, four themes emerged ( Table 3 ). The four themes were: living a physically changed and challenging life, living in social deprivation and isolation, living psychologically stigmatised and depressed and living a marital and sexual life that is no longer joyful. The four themes were inter-related and occasionally overlapping from the way the women described their experiences. Generally, the women's experiences were full of life changes and strategies to cope. The coping responses cut across all four themes and are hence not presented separately.
Living a Physically Changed and Challenging Life. The women's lives generally changed the moment they realised they were leaking urine uncontrollably. They were wet all the time, a challenge they had to cope with by devising ways of passing less urine and avoiding being noticed by those around them. In response to the leakage, women in all FGDs decided to drink less to reduce being constantly wet. However, drinking less made them produce concentrated and smelly urine, which then caused "burns" and sores on the genitals and thighs. All the women padded themselves all the time using locally devised pads that would eventually "burn" them. All the time, the women were pre-occupied with ways to reduce being noticed when they were wet, which was physically challenging as demonstrated in the following quote:
Waking up from sleep, you find urine has spread all over the bed up to the top, to the extent of wetting the hair. Then you feel the burden of changing the beddings to place the dry ones…you fear to drink so that urine does not come much. Then again the urine that comes when you have not taken anything has a very bad smell. FGD 6
Women reported the dire situation of living with constant leakage and, as a consequence, with an offensive urine smell. Physically, the women themselves experienced the bad smell of strong urine and often felt ashamed. However, they also attributed the response from others to the physical effects of urine smell as they always felt like outcasts in the company of other people
Where I pass, they say, "there she is; smelling". Both the young and the old share the same message and keep saying that I smell. Everybody makes my life difficult. I cannot go to church or visit friends or attend to visitors due to the smell… and I fear that I will wet myself in front of people. FGD 3
The physical effects of the bad smell were even worse for those who leaked faeces in addition to urine. They felt the situation of bad smell would drive away anybody they encountered. They often took a much time cleaning themselves to reduce on the smell. One woman who leaked faeces narrated her ordeal in delaying her husband every morning, as she would be in the toilet cleaning herself.
I made it a habit to visit the toilet every morning; if I don't go there, faeces come and I smell bad. I quietly suffered … he [husband] would wait for me every morning when am just in the toilet cleaning myself. Whenever he would ask, I would tell him to go and leave me to come later and he did not know why. FGD 5
It was difficult indeed to conceal the leakage, causing women to change the way they padded themselves. They devised a locally made special pad, which has many layers of cloth plus a plastic sheet to contain the continuous leakage of urine. The participants also had to frequently wash their clothing to avoid the urine smell and the rash around the genitalia and thighs.
The most difficult situation I have passed through is washing; I wash every day like a Nakawere (woman who has just given birth). You have to keep washing to avoid smelling. You can't put on the same cloth twice. Secondly is the rash I get down there as a result of heat and urine. FGD 7
The participants faced the dilemma between wanting to drink much water to reduce the smell but risking massive leakage, and drinking less water to reduce the leakage but risking the increased smell. The continuous leakage of urine, the padding and the concentrated urine burnt their thighs and private parts. This situation made it increasingly difficult to pad themselves because of the burns, and the resulting burns (wounds) often limited their body movements.
You fear to drink because you are going somewhere so that urine does not become much. Then again, the urine that comes out when you have not taken any thing, the smell is very bad. FGD 6
I have been with the condition for two years and life has been very difficult. I use pieces of cloth as pads. The pads burn my private parts and I am full of wounds due to padding myself all day long. These wounds do not allow me to walk properly. I walk like a lame woman. FGD 1
To mitigate the physical effects of leakage and the smell, the women had to look for local remedies. Some women used herbal medication to treat the burns. Some reported that herbs also helped to reduce the leakage of urine. However, most women reported they did not achieve the anticipated benefits and that they continued leaking.
My husband put in a lot of effort in consulting from older women; they told him about some herbal medicine I could use. One woman gave him herbs that I was supposed to sit in and I did. The other herbs were for putting in tea. I had some relief. After 6 months, the leaking lessened. FGD 7
I tried herbal medicine but it failed to heal me. They used to mix the herbs in a small, 5-l plastic container and you take. They were sour but because you want to be ok you continue taking… but the herbs never stopped the leakage. FGD 4
Living in Social Deprivation and Isolation. All the women in the different group discussions felt they were socially isolated. They shared the view that because of their condition, they would either isolate themselves or be isolated by relatives and friends. They attributed the social isolation to the rejection they received from friends, neighbours and relatives as a result of the leakage and the smell, and isolation was a coping mechanism for most of them.
… my friends and my relatives are irritated and they don't want to come to my place anymore. I also don't go to their places because I feel like a burden to them. We both fear each other. The neighbours feel bad when I give food to their children; as a result, they stop their children from coming to my place or playing from there. FGD 7
I do not have friends anymore; even members of my family do not want to associate with me. I cannot talk to anybody for they are pushed off by the smell of urine. I am alone and isolated. FGD 1.
These women were socially excluded, as they could not perform what they perceived as their culturally normal duties, like preparing food. They could not touch anything, for they were considered unclean, and if they did, whatever they touched would be thrown away. This made the women with fistulas feel socially rejected.
Nobody wants to associate with you because of smell. I was denied of everything. I could neither touch on anything nor prepare food for the family. Whenever I prepared food or touched on a cup or plate my senga (paternal aunt) would not eat or take that tea. FGD1
The neighbours feel bad when I give food to their children; as a result, they stop their children from coming to my place or playing from there. FGD 7
Participants shared stories of being rejected and abandoned by relatives upon realising that they were continuously leaking urine. This rejection was across all age groups. Children and close relatives laughed and mocked the women and this worsened the rejection and prompted the women to isolate themselves as a form coping.
Children who do not understand your condition, laugh and sneer at you, they point fingers saying that "look at that woman; she is like a young child; urinating wherever she goes". FGD 7
The women often concealed the fact that they were leaking urine. Women in all groups generally agreed that it helped if they never disclosed their illness to relatives and neighbours. The women said that the rejection worsened as time went by, as initially, the husband hoped the woman would heal. However, majority of participants reported that their husbands abandoned them after realizing that the wife's condition might not heal.
…At first, I didn't tell him what was going on with me; I hid it from him for about 3 months. Whenever I would leave our bed and he realizes that it's wet, he would ask me if I had urinated on the bed, I later told him I had got the problem during childbirth. As soon as I admitted the truth to him, he left me in the house alone without help and got married to another woman… so, when my relatives saw that I may die in the house, they came, picked me and brought me to hospital. FGD 7
The experience of being ostracised by relatives, friends and the community was, according to the participants, too much to bear. The majority of participants reported ridicule, scorn, verbal abuse and non-verbal mockery (kwenyinyala). What seemed to hurt most was the abuse from relatives and parents who voiced that the women with a fistula were a disgrace and deserved to suffer from a fistula.
… my father used to verbally abuse me. Whenever he got drunk, he would start abusing me that am going to die like a dog. He would say that I deserved the problem [fistula] and would command me to leave his house/home saying, "You are a disgrace to this family". FGD 1
Various reasons were given for the choice of self-Isolation among women with a fistula. The women chose to isolate themselves from friends, as they could not afford to sit for a long time and chat and, hence, decided to abandon their former peers and friends.
Friends changed! They are not like how they used to be. For those whom I used to sit and chat with for a long time, it can't happen anymore. This is because; if she overstays, you will leave her there and you hide yourself to change pads and from there, she will say you no longer love her. Therefore, I just hide my problem from most of them and I decided to chuck most of them. FGD 6
The other reason given by the women to isolate themselves from relatives was because relatives had spoken ill of them, and they could not continue with such relationships.
When my sister in law visited me in hospital, she found out that I was leaking. She spread the news about my condition that I was leaking urine. I decided to remain alone and cut off all of them. I do not invite them nor visit them so am at home with no friends. FGD 4
Women with a fistula shared that they had lost friends, because no friend would tolerate their toilet habits and thought their friends would feel ashamed to be in their company when in public.
Those who used to go out with me have cut off the relationship because of the condition. When I go out with a friend, and she notices that I go out to the toilet all the time, she changes her minds and the next step is to drop you by giving excuses. They don't want to go with you because they feel ashamed to be with you in public. FGD 6
Leaking urine affected the women's social interactions so much that they preferred to stay alone as a coping response. The women could not participate in activities they were culturally supposed to enjoy, such as entertainment and cooking for visitors for they feared wetting themselves as they participated.
Ever since I got the problem, I felt so bad. All the time you are in fear of not wetting yourself in front of others. You are invited for functions or parties but you cannot attend due to fear and also changing the pads all the time. I became very shy and feared hanging around with my people. Even when I got visitors, I felt I could not prepare them food because I was afraid of their attitudes towards my condition and me. I leave a pool wherever I sit. I therefore avoid gatherings. FGD 5
Another coping response involved avoiding public functions and meetings. Some participants explained that they avoided public functions such as funerals and attending church because of the leakage and smell of urine. Those who attended social and religious functions had to develop some behaviour modifications for example, women avoided standing up or raising their voices when singing.
Life has been very difficult for me. I hate myself and cannot mix with people. I cannot attend any party, social function or even go to church. If I am to go anywhere I have to tie bundles of clothes around me and when they get wet they burn my thighs and private parts. If I am at church and praising, I don't dance and jump because if I do, a lot of urine and faeces will come out. I even sing at a low tone because of the same reason. I would never enjoy the service or anything for I would be preoccupied with how to avoid my outer clothes being wet. FGD 3
Some women demonstrated that urine leakage affected their socioeconomic activities Women affected by a fistula were unable to continue with income-generating activities to support themselves. The main reason stated was that they felt they unprepared to continue working because of pre-occupation with how to cope with effects of leakage. However further showed that social interaction was also at play, as the women felt they would be mocked at work. Those who had a small retail business feared that nobody would buy from them if they tried to take their goods to the market. Additionally, all women felt that no one was willing to employ a woman leaking urine, as demonstrated in the following quotes:
This condition has hindered us from doing our usual work that could give us income to support our selves. …I no longer take my things to the market because I fear people will not buy from me. FGD3
There is no way how you can hide this problem because it's a complicated thing to hide. So whoever gets to know of your condition, he/she can't accept you to work. FGD 6
However, some participants reported having sympathetic relatives who even helped out during this illness and who advised them to seek care.
… after knowing the condition, they [relatives] felt sorry. They even contributed to the fee that was needed to treat me when I went to the hospital. It was very expensive…they mind a lot about my life because whenever they hear any announcement about fistula treatment, they call to inform me. FGD 4
Living Psychologically Stigmatised and Depressed. Though it was difficult to have a sharp divide between social and psychological effects of living with a fistula, women with a fistula demonstrated actions that showed they were stigmatised and often depressed by the condition of leaking urine and or stool. Almost all the participants reported having faced some form of stigma. The stigma manifested itself as feelings that others were irritated by the smell and leakage of urine. The women were constantly worried that others would notice their problems. Stigma was also experienced through the behaviours of others, especially close relatives, towards women with a fistula.
They don't want to get close to me thinking that I am dirty. So I don't feel like going to anyone's place to visit so as not to be an object of contempt. Even when you are at someone's place and you wash your padding clothes, you even fear to hang it for drying. One day, I saw my mother getting irritated about my padding cloth. FGD 7
Women with a fistula lived in a state of distress and fear from the behaviour of relatives and neighbours. The physical effects of leaking urine, the bad smell and sores together with the fear of being noticed in public forced the women to live in a state of psychological distress. The women themselves felt it was not worth being in public. On the other hand, relatives and neighbours distanced themselves from women with a fistula because of the perceived fear that the condition might be contagious.
What I have experienced with my neighbours is that they fear that I could spread the condition to them. Some of them think that it is contagious so where you have sat, no one would want to sit there, especially in my case who stays in a rented room. Neighbours don't even want me to sit on their verandas and they are also cautious and scared of sitting at my place. Even after pouring water you have used outside, no one would want to get in contact with it or jump over it. This makes those of us with the fistula condition feel very bad. FGD 7
The stress of living with a fistula was compounded by worries that there may be no cure for the condition. Furthermore, others confirmed the participants' fears by saying the condition was for life. As a result, some contemplated ending their lives. Most of the women had ever developed suicidal ideations and felt their life was not worthwhile.
…People were saying that the condition could never be treated, so I will have to die with it. I started fearing to live with the problem the rest of my life. They said that I would never be o.k. So if am wise, I should just get a rope to hang and kill myself! I was going to do it but my mother stopped me. FGD 8
A Marital and Sexual Life That Is No Longer Joyful. Most of the women felt their marital and sexual lives were no longer joyful. Others felt they had lost their marital and sexual rights altogether. Their bodies had changed, and they were no longer like other women, because they missed the happiness they formerly enjoyed. Their sex lives had changed. Many described their sex lives to have been negatively impacted because of the excess fluid, which was detestable to both the women and their partners. All the participants agreed that sex was a major challenge. It was no longer as it used to be, and there were many difficulties to overcome when having sex.
When it reaches time to play sex, he tells you do this, and you have to first put there the cloth to dry urine, then you lay a polythene cover and by the time you start, urine is much again. This makes him lose the erection and a feeling comes that may be its urine that made him lose the erection. He just forces himself to do it but deep inside, he is not enjoying and even myself, I do not enjoy due to fear that when you increase on the speed, urine will come in large quantity so you do it slowly. In fact, you do not make him happy like how you used to do before the problem. FGD 5
Participants described the feeling of a changed vagina. Some participants reported that their partners felt that sex was different now compared to the period before the development of the fistula. In addition, some partners told their wives that sex with them was different from sex with women without a fistula. Furthermore, participants felt physically widened, and as a consequence, their appetite for sex had decreased.
I hate myself because, when am cleaning myself, … I feel I widened … I feel pain in the vagina so this reduces my appetite for sex. When I squat to urinate, it becomes worse and air just blows into me. Even the man I got, at first he did not know but afterwards, he came and asked me, what is the problem? As you are different [sexually] from other women! FGD 8
Some partners were unable to tolerate having a wife with a fistula and separated from their wives. Alternately, those couples that stayed together often had separate beds and only came together for sex.
… My first husband chased me away and I got myself another one I am having today, but we have separate beds. I feel bad to see that I do not feel the warmth of a man and the man also does not feel mine. FGD 5
Participants said their right to sex was denied, because their partners, as a strategy to cope with the changed sexual experience, looked for other "normal" women and left their wives with fistulas sexually starved. Even when the women tried other men, the fluid was too much and unpleasant, and the men did not return.
Yes, he continued with sex, but he was unstable. He preferred going to his "normal" wife than being with me who leaked a lot of fluid during intercourse. I got a few other friends but the intercourse was still messy due to the release of a lot of fluids and they moved on. FGD 7
On the other hand, some participants were forced into sex even when they had pain, a situation that they interpreted as rape.
When he is badly off he insists on having sex and after forcing you, you get wounds all over the place. In fact, penetration is painful. It's actually rape because; there is no feeling at all but for him, he insists on having it done. FGD 6
The few participants who still wanted to have sex were challenged by the fact that husbands divorced them to marry other wives. Women reported that in this setting, men are culturally the initiators of sex. Therefore, the women felt that being divorced and yet being unable to initiate new sexual relationships was a violation of their sexual rights. The women thought a fistula had stood in their way, even when they still had a desire for sex.
Our rights were violated. We don't play sex; not because we lack feelings; … this condition [fistula] made our husbands- the custodians of sex, leave us for other women. Men no longer want to socialize with us and ask for love [sex] because of our condition …yet sometimes we have feelings for sex. FGD 2
Most of the participants had completely abstained from sex. Others assumed that almost all women with a fistula were not having sex. The participants feared being talked about if sex did not go right and, hence, decided to avoid it altogether.
… I get men who come and request me for marriage, while others want sex, but I know my problem. You fear that you might play sex with that man and he goes out and talks about you, so I decided to leave everything. FGD 4
Most participants decided to continue life without sex after facing sexual challenges. Others often stayed away from their partners to avoid abuse and neglect. Separation or divorce was very common among the participants. Most reported that either they left their abusive partners or their partners just abandoned them or sent them away.
I feel I cannot be loved again. …In my mind I ask myself who will come to me and say that I love you when I am in such a condition. I lost hope of getting another partner in life. FGD 1
Results
The results are presented below in two sections: the socio-demographic characteristics and the women's experiences of living with a genital fistula. Women's experiences are presented according to the four themes that emerged, and we use relevant quotations to illustrate and validate the categories.
Socio-demographic Characteristics
A general profile of all the study participants is presented in Table 1 . Altogether, 56 participants between 14 and 60 years old participated in the eight FGDs. The median age for the participants was 26 years with an inter-quartile range of 19 to 38 years. The women had lived with a fistula for a period ranging from one and a half months to 40 years. A total of 32 women (57 %) were divorced/separated, 14 women (25 %) were still married and 10 women (18 %) got the fistula when single and were still not yet married. Of the 56 women, one had a fistula from childhood (congenital ectopic ureter) and the remaining had a fistula following childbirth (obstetric fistula). The group selection was important for the women to freely discuss their experiences. The women generally gave a coherent story regarding their experience with a fistula, irrespective of which group they belonged to; and hence our results are not segregated per group, as the study was not designed to compare intergroup variations.
Experiences of Living With a Genital Fistula
In the analysis of the lived experiences among women with a fistula, four themes emerged ( Table 3 ). The four themes were: living a physically changed and challenging life, living in social deprivation and isolation, living psychologically stigmatised and depressed and living a marital and sexual life that is no longer joyful. The four themes were inter-related and occasionally overlapping from the way the women described their experiences. Generally, the women's experiences were full of life changes and strategies to cope. The coping responses cut across all four themes and are hence not presented separately.
Living a Physically Changed and Challenging Life. The women's lives generally changed the moment they realised they were leaking urine uncontrollably. They were wet all the time, a challenge they had to cope with by devising ways of passing less urine and avoiding being noticed by those around them. In response to the leakage, women in all FGDs decided to drink less to reduce being constantly wet. However, drinking less made them produce concentrated and smelly urine, which then caused "burns" and sores on the genitals and thighs. All the women padded themselves all the time using locally devised pads that would eventually "burn" them. All the time, the women were pre-occupied with ways to reduce being noticed when they were wet, which was physically challenging as demonstrated in the following quote:
Waking up from sleep, you find urine has spread all over the bed up to the top, to the extent of wetting the hair. Then you feel the burden of changing the beddings to place the dry ones…you fear to drink so that urine does not come much. Then again the urine that comes when you have not taken anything has a very bad smell. FGD 6
Women reported the dire situation of living with constant leakage and, as a consequence, with an offensive urine smell. Physically, the women themselves experienced the bad smell of strong urine and often felt ashamed. However, they also attributed the response from others to the physical effects of urine smell as they always felt like outcasts in the company of other people
Where I pass, they say, "there she is; smelling". Both the young and the old share the same message and keep saying that I smell. Everybody makes my life difficult. I cannot go to church or visit friends or attend to visitors due to the smell… and I fear that I will wet myself in front of people. FGD 3
The physical effects of the bad smell were even worse for those who leaked faeces in addition to urine. They felt the situation of bad smell would drive away anybody they encountered. They often took a much time cleaning themselves to reduce on the smell. One woman who leaked faeces narrated her ordeal in delaying her husband every morning, as she would be in the toilet cleaning herself.
I made it a habit to visit the toilet every morning; if I don't go there, faeces come and I smell bad. I quietly suffered … he [husband] would wait for me every morning when am just in the toilet cleaning myself. Whenever he would ask, I would tell him to go and leave me to come later and he did not know why. FGD 5
It was difficult indeed to conceal the leakage, causing women to change the way they padded themselves. They devised a locally made special pad, which has many layers of cloth plus a plastic sheet to contain the continuous leakage of urine. The participants also had to frequently wash their clothing to avoid the urine smell and the rash around the genitalia and thighs.
The most difficult situation I have passed through is washing; I wash every day like a Nakawere (woman who has just given birth). You have to keep washing to avoid smelling. You can't put on the same cloth twice. Secondly is the rash I get down there as a result of heat and urine. FGD 7
The participants faced the dilemma between wanting to drink much water to reduce the smell but risking massive leakage, and drinking less water to reduce the leakage but risking the increased smell. The continuous leakage of urine, the padding and the concentrated urine burnt their thighs and private parts. This situation made it increasingly difficult to pad themselves because of the burns, and the resulting burns (wounds) often limited their body movements.
You fear to drink because you are going somewhere so that urine does not become much. Then again, the urine that comes out when you have not taken any thing, the smell is very bad. FGD 6
I have been with the condition for two years and life has been very difficult. I use pieces of cloth as pads. The pads burn my private parts and I am full of wounds due to padding myself all day long. These wounds do not allow me to walk properly. I walk like a lame woman. FGD 1
To mitigate the physical effects of leakage and the smell, the women had to look for local remedies. Some women used herbal medication to treat the burns. Some reported that herbs also helped to reduce the leakage of urine. However, most women reported they did not achieve the anticipated benefits and that they continued leaking.
My husband put in a lot of effort in consulting from older women; they told him about some herbal medicine I could use. One woman gave him herbs that I was supposed to sit in and I did. The other herbs were for putting in tea. I had some relief. After 6 months, the leaking lessened. FGD 7
I tried herbal medicine but it failed to heal me. They used to mix the herbs in a small, 5-l plastic container and you take. They were sour but because you want to be ok you continue taking… but the herbs never stopped the leakage. FGD 4
Living in Social Deprivation and Isolation. All the women in the different group discussions felt they were socially isolated. They shared the view that because of their condition, they would either isolate themselves or be isolated by relatives and friends. They attributed the social isolation to the rejection they received from friends, neighbours and relatives as a result of the leakage and the smell, and isolation was a coping mechanism for most of them.
… my friends and my relatives are irritated and they don't want to come to my place anymore. I also don't go to their places because I feel like a burden to them. We both fear each other. The neighbours feel bad when I give food to their children; as a result, they stop their children from coming to my place or playing from there. FGD 7
I do not have friends anymore; even members of my family do not want to associate with me. I cannot talk to anybody for they are pushed off by the smell of urine. I am alone and isolated. FGD 1.
These women were socially excluded, as they could not perform what they perceived as their culturally normal duties, like preparing food. They could not touch anything, for they were considered unclean, and if they did, whatever they touched would be thrown away. This made the women with fistulas feel socially rejected.
Nobody wants to associate with you because of smell. I was denied of everything. I could neither touch on anything nor prepare food for the family. Whenever I prepared food or touched on a cup or plate my senga (paternal aunt) would not eat or take that tea. FGD1
The neighbours feel bad when I give food to their children; as a result, they stop their children from coming to my place or playing from there. FGD 7
Participants shared stories of being rejected and abandoned by relatives upon realising that they were continuously leaking urine. This rejection was across all age groups. Children and close relatives laughed and mocked the women and this worsened the rejection and prompted the women to isolate themselves as a form coping.
Children who do not understand your condition, laugh and sneer at you, they point fingers saying that "look at that woman; she is like a young child; urinating wherever she goes". FGD 7
The women often concealed the fact that they were leaking urine. Women in all groups generally agreed that it helped if they never disclosed their illness to relatives and neighbours. The women said that the rejection worsened as time went by, as initially, the husband hoped the woman would heal. However, majority of participants reported that their husbands abandoned them after realizing that the wife's condition might not heal.
…At first, I didn't tell him what was going on with me; I hid it from him for about 3 months. Whenever I would leave our bed and he realizes that it's wet, he would ask me if I had urinated on the bed, I later told him I had got the problem during childbirth. As soon as I admitted the truth to him, he left me in the house alone without help and got married to another woman… so, when my relatives saw that I may die in the house, they came, picked me and brought me to hospital. FGD 7
The experience of being ostracised by relatives, friends and the community was, according to the participants, too much to bear. The majority of participants reported ridicule, scorn, verbal abuse and non-verbal mockery (kwenyinyala). What seemed to hurt most was the abuse from relatives and parents who voiced that the women with a fistula were a disgrace and deserved to suffer from a fistula.
… my father used to verbally abuse me. Whenever he got drunk, he would start abusing me that am going to die like a dog. He would say that I deserved the problem [fistula] and would command me to leave his house/home saying, "You are a disgrace to this family". FGD 1
Various reasons were given for the choice of self-Isolation among women with a fistula. The women chose to isolate themselves from friends, as they could not afford to sit for a long time and chat and, hence, decided to abandon their former peers and friends.
Friends changed! They are not like how they used to be. For those whom I used to sit and chat with for a long time, it can't happen anymore. This is because; if she overstays, you will leave her there and you hide yourself to change pads and from there, she will say you no longer love her. Therefore, I just hide my problem from most of them and I decided to chuck most of them. FGD 6
The other reason given by the women to isolate themselves from relatives was because relatives had spoken ill of them, and they could not continue with such relationships.
When my sister in law visited me in hospital, she found out that I was leaking. She spread the news about my condition that I was leaking urine. I decided to remain alone and cut off all of them. I do not invite them nor visit them so am at home with no friends. FGD 4
Women with a fistula shared that they had lost friends, because no friend would tolerate their toilet habits and thought their friends would feel ashamed to be in their company when in public.
Those who used to go out with me have cut off the relationship because of the condition. When I go out with a friend, and she notices that I go out to the toilet all the time, she changes her minds and the next step is to drop you by giving excuses. They don't want to go with you because they feel ashamed to be with you in public. FGD 6
Leaking urine affected the women's social interactions so much that they preferred to stay alone as a coping response. The women could not participate in activities they were culturally supposed to enjoy, such as entertainment and cooking for visitors for they feared wetting themselves as they participated.
Ever since I got the problem, I felt so bad. All the time you are in fear of not wetting yourself in front of others. You are invited for functions or parties but you cannot attend due to fear and also changing the pads all the time. I became very shy and feared hanging around with my people. Even when I got visitors, I felt I could not prepare them food because I was afraid of their attitudes towards my condition and me. I leave a pool wherever I sit. I therefore avoid gatherings. FGD 5
Another coping response involved avoiding public functions and meetings. Some participants explained that they avoided public functions such as funerals and attending church because of the leakage and smell of urine. Those who attended social and religious functions had to develop some behaviour modifications for example, women avoided standing up or raising their voices when singing.
Life has been very difficult for me. I hate myself and cannot mix with people. I cannot attend any party, social function or even go to church. If I am to go anywhere I have to tie bundles of clothes around me and when they get wet they burn my thighs and private parts. If I am at church and praising, I don't dance and jump because if I do, a lot of urine and faeces will come out. I even sing at a low tone because of the same reason. I would never enjoy the service or anything for I would be preoccupied with how to avoid my outer clothes being wet. FGD 3
Some women demonstrated that urine leakage affected their socioeconomic activities Women affected by a fistula were unable to continue with income-generating activities to support themselves. The main reason stated was that they felt they unprepared to continue working because of pre-occupation with how to cope with effects of leakage. However further showed that social interaction was also at play, as the women felt they would be mocked at work. Those who had a small retail business feared that nobody would buy from them if they tried to take their goods to the market. Additionally, all women felt that no one was willing to employ a woman leaking urine, as demonstrated in the following quotes:
This condition has hindered us from doing our usual work that could give us income to support our selves. …I no longer take my things to the market because I fear people will not buy from me. FGD3
There is no way how you can hide this problem because it's a complicated thing to hide. So whoever gets to know of your condition, he/she can't accept you to work. FGD 6
However, some participants reported having sympathetic relatives who even helped out during this illness and who advised them to seek care.
… after knowing the condition, they [relatives] felt sorry. They even contributed to the fee that was needed to treat me when I went to the hospital. It was very expensive…they mind a lot about my life because whenever they hear any announcement about fistula treatment, they call to inform me. FGD 4
Living Psychologically Stigmatised and Depressed. Though it was difficult to have a sharp divide between social and psychological effects of living with a fistula, women with a fistula demonstrated actions that showed they were stigmatised and often depressed by the condition of leaking urine and or stool. Almost all the participants reported having faced some form of stigma. The stigma manifested itself as feelings that others were irritated by the smell and leakage of urine. The women were constantly worried that others would notice their problems. Stigma was also experienced through the behaviours of others, especially close relatives, towards women with a fistula.
They don't want to get close to me thinking that I am dirty. So I don't feel like going to anyone's place to visit so as not to be an object of contempt. Even when you are at someone's place and you wash your padding clothes, you even fear to hang it for drying. One day, I saw my mother getting irritated about my padding cloth. FGD 7
Women with a fistula lived in a state of distress and fear from the behaviour of relatives and neighbours. The physical effects of leaking urine, the bad smell and sores together with the fear of being noticed in public forced the women to live in a state of psychological distress. The women themselves felt it was not worth being in public. On the other hand, relatives and neighbours distanced themselves from women with a fistula because of the perceived fear that the condition might be contagious.
What I have experienced with my neighbours is that they fear that I could spread the condition to them. Some of them think that it is contagious so where you have sat, no one would want to sit there, especially in my case who stays in a rented room. Neighbours don't even want me to sit on their verandas and they are also cautious and scared of sitting at my place. Even after pouring water you have used outside, no one would want to get in contact with it or jump over it. This makes those of us with the fistula condition feel very bad. FGD 7
The stress of living with a fistula was compounded by worries that there may be no cure for the condition. Furthermore, others confirmed the participants' fears by saying the condition was for life. As a result, some contemplated ending their lives. Most of the women had ever developed suicidal ideations and felt their life was not worthwhile.
…People were saying that the condition could never be treated, so I will have to die with it. I started fearing to live with the problem the rest of my life. They said that I would never be o.k. So if am wise, I should just get a rope to hang and kill myself! I was going to do it but my mother stopped me. FGD 8
A Marital and Sexual Life That Is No Longer Joyful. Most of the women felt their marital and sexual lives were no longer joyful. Others felt they had lost their marital and sexual rights altogether. Their bodies had changed, and they were no longer like other women, because they missed the happiness they formerly enjoyed. Their sex lives had changed. Many described their sex lives to have been negatively impacted because of the excess fluid, which was detestable to both the women and their partners. All the participants agreed that sex was a major challenge. It was no longer as it used to be, and there were many difficulties to overcome when having sex.
When it reaches time to play sex, he tells you do this, and you have to first put there the cloth to dry urine, then you lay a polythene cover and by the time you start, urine is much again. This makes him lose the erection and a feeling comes that may be its urine that made him lose the erection. He just forces himself to do it but deep inside, he is not enjoying and even myself, I do not enjoy due to fear that when you increase on the speed, urine will come in large quantity so you do it slowly. In fact, you do not make him happy like how you used to do before the problem. FGD 5
Participants described the feeling of a changed vagina. Some participants reported that their partners felt that sex was different now compared to the period before the development of the fistula. In addition, some partners told their wives that sex with them was different from sex with women without a fistula. Furthermore, participants felt physically widened, and as a consequence, their appetite for sex had decreased.
I hate myself because, when am cleaning myself, … I feel I widened … I feel pain in the vagina so this reduces my appetite for sex. When I squat to urinate, it becomes worse and air just blows into me. Even the man I got, at first he did not know but afterwards, he came and asked me, what is the problem? As you are different [sexually] from other women! FGD 8
Some partners were unable to tolerate having a wife with a fistula and separated from their wives. Alternately, those couples that stayed together often had separate beds and only came together for sex.
… My first husband chased me away and I got myself another one I am having today, but we have separate beds. I feel bad to see that I do not feel the warmth of a man and the man also does not feel mine. FGD 5
Participants said their right to sex was denied, because their partners, as a strategy to cope with the changed sexual experience, looked for other "normal" women and left their wives with fistulas sexually starved. Even when the women tried other men, the fluid was too much and unpleasant, and the men did not return.
Yes, he continued with sex, but he was unstable. He preferred going to his "normal" wife than being with me who leaked a lot of fluid during intercourse. I got a few other friends but the intercourse was still messy due to the release of a lot of fluids and they moved on. FGD 7
On the other hand, some participants were forced into sex even when they had pain, a situation that they interpreted as rape.
When he is badly off he insists on having sex and after forcing you, you get wounds all over the place. In fact, penetration is painful. It's actually rape because; there is no feeling at all but for him, he insists on having it done. FGD 6
The few participants who still wanted to have sex were challenged by the fact that husbands divorced them to marry other wives. Women reported that in this setting, men are culturally the initiators of sex. Therefore, the women felt that being divorced and yet being unable to initiate new sexual relationships was a violation of their sexual rights. The women thought a fistula had stood in their way, even when they still had a desire for sex.
Our rights were violated. We don't play sex; not because we lack feelings; … this condition [fistula] made our husbands- the custodians of sex, leave us for other women. Men no longer want to socialize with us and ask for love [sex] because of our condition …yet sometimes we have feelings for sex. FGD 2
Most of the participants had completely abstained from sex. Others assumed that almost all women with a fistula were not having sex. The participants feared being talked about if sex did not go right and, hence, decided to avoid it altogether.
… I get men who come and request me for marriage, while others want sex, but I know my problem. You fear that you might play sex with that man and he goes out and talks about you, so I decided to leave everything. FGD 4
Most participants decided to continue life without sex after facing sexual challenges. Others often stayed away from their partners to avoid abuse and neglect. Separation or divorce was very common among the participants. Most reported that either they left their abusive partners or their partners just abandoned them or sent them away.
I feel I cannot be loved again. …In my mind I ask myself who will come to me and say that I love you when I am in such a condition. I lost hope of getting another partner in life. FGD 1
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