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Moving beyond incontinence

This is one of the stories from the September 2012 issue of International News. Julia Irani is a Master’s student in International Health at the University of Bergen’s Centre for International Health in Norway. As part of her Master’s thesis, she conducted a qualitative study (September – November 2011) on the experiences during reintegration of women treated for obstetric fistulae in Tanzania.

Use the table below to access other stories in this issue.

Editorial In their own words: 12 stories of vesicovaginal fistulae
The problem of obstetric fistula: a personal view Provision of fistula services and programmes
Update on the FIGO/RCOG and partners competency-based fistula training manual The problem of continuing urinary incontinence after obestetric vesicovaginal surgery
Creating a balanced narrative about women living with fistulae Vesicovaginal fistulae in Nepal
Vesicovaginal fistula repairs at Aberdeen Women’s Centre in Sierra Leone Vesicovaginal fistulae in Bangladesh
Vesicovaginal fistula repairs in Tanzania transportMYpatient: overcoming the barrier of transport costs
Obstetric fistula surgery in Uganda Journal club

  

The study was carried out in collaboration with Women’s Dignity, Comprehensive Community Based Rehabilitation in Tanzania and Muhimbili University of Health and Allied Sciences with assistance from several hospitals in Tanzania. In-depth interviews were conducted with a total of 36 women who had undergone fistula treatment at least 6 months previously. This was done at women’s homes in rural settings across three regions: Dodoma, Mwanza and Mbeya. A focus group discussion with these women was also conducted in Singida. In this article, Julia narrates the stories of a few women to convey some of the findings from her study. (NB All names have been changed for confidentiality, and the women have given informed consent for the photos used.)

Reintegration of patients with fistulae deals with a very selective group of women. These are frequently poor women, both young and old. Women who survived childbirth. Women who, more often than not, bore the loss of a child. Women who suffered from incontinence. Women who heard about treatment. Women who found themselves at a hospital that could repair fistulae. Women who returned home, after treatment. In some ways, you can think of them as the fortunate ones.

The question is how long did they have to wait before getting treatment? We interviewed Grace 10 months after she was treated. Grace got married around 16 years of age. She got pregnant but miscarried because her husband came home drunk one day and started beating her. She lost her daughter. Not long afterwards, she conceived again and went to her mother’s house for delivery. ‘When labour pain started, I was afraid they would think I was lying, so I did not disclose … on the second day, I told my mother’ and that was when she was taken to the hospital. She delivered her second daughter, but she had died as well. When she returned home with a fistula, her husband abandoned her. She moved in with her mother. Some years later, her parents died. We asked her who she lived with now, and she said ‘I live alone and my God is the second one’. She explained that she did not go to church because of fear of leaking. We asked her if she ever considered remarrying and she said ‘aah who wants to marry a woman leaking urine?’ More than 55 years passed before she was finally treated for the fistula. She is now about 75 years old. When we asked her how she felt after treatment, she said ‘I felt ok … I rested for one day only ... but on the second and third day I saw urine leaking’. She did not want to get treated again; she said it was not as bad as before, she now only leaks slightly when she is asleep. To make ends meet, Grace collects rocks, carries them home and breaks them into smaller pebbles, fills these into a sack, and sells it to construction workers for approximately 30 pence/sack whenever there is a demand for it. Mostly, she is dependent on her sister’s grandchildren to provide her with food.

Breaking rocks into pebbles to sell as construction material

Breaking rocks into pebbles to sell as construction material

Eva had a different story. We interviewed Eva 14 months after she was treated for a fistula. She suffered a fistula after her first pregnancy at the age of 18. She started labour in the dispensary and on the third day she was taken to the hospital, where she delivered a dead baby. She noticed she was leaking, and so a catheter was inserted and she was sent home. She stayed with the catheter for 2 months, before she was referred to a hospital for fistula repair. She is completely cured, and is now 6 months pregnant. She said she was happy with her husband and hoped to have ten children.
 
There is currently no follow-up of fistula patients in Tanzania, and fistula surgeons explained that they could only hope that the women were doing well after treatment. The experience during reintegration is influenced by the time and success of treatment. About one-third of the women we interviewed said they were not completely dry after treatment. They either still had a fistula or some stress incontinence. Successful reintegration, however, goes beyond the physical condition of incontinence. Societal factors and support networks play an important role as well.

When Flora returned home after treatment, her mother-in-law put pressure on her to sleep with her husband. She refused and returned to her mother. When we asked her about remarrying, she said ‘if a man approaches me, I will refuse. I will tell him that I don’t want to be destroyed any more’. Flora’s mother helped her through the process of acquiring treatment, because of which they are now left poorer than before. She said ‘The cultivation season passed, my mother did not cultivate, so currently we do not have food, we are buying food’. She added ‘I dream to have money then my mind can settle’. Another respondent, Stella, who is now cured and has a supportive husband, talked about their plans before her fistula. ‘… After selling this harvest, some would be for food and with the remaining we wanted to buy iron sheets (for the roof of their house) … but when I got the problem, that money was used to send me to witchdoctor’s ... that witchdoctor required a lot of money ... one goat and 20 000 shillings (£8)’. They were now struggling to recover the assets lost in acquiring health care.

For a woman in Tanzania, the ability to bear a child is tightly connected with self-worth. The women who already had children often did not want more, but those who did not really felt the loss. When we asked Gloria, who had gone through three marriages with a fistula and several miscarriages, what pained her the most, she said ‘only having no child. It hurts me so much. If I had a child, I would not feel the pain as much’. She added ‘I am not worried about becoming pregnant even if I get fistula, provided I have a child, I will not care.’ Some women conceived children even with fistulae, some of whom were outside of wedlock.

Fistulae impact the physical, social, economical and psychological life of women in Tanzania and all these aspects need to be accounted for when assessing successful reintegration. It is also important to realise how difficult it is to carry out home follow-up visits for these women. There were days when we drove on unpaved, bumpy roads for eight hours, searching for one woman. Some villages were not accessible by car and we had to hike for hours. Understanding the environmental context that these women come from gives perspective on the inaccessibility to emergency obstetric care and why the women that we interviewed are, in fact, the fortunate ones. Awareness is increasing and women are getting treatment sooner. I believe there is hope, a hope to move beyond incontinence.

Julia Irani, Master’s student in International Health, University of Bergen’s Centre for International Health, Norway