Despite living in diverse political, economic and sociocultural contexts, women who experience obstetric fistula (OF) often tell similar stories. Many have encountered extremely poor quality of care, been stigmatized by their families and communities and struggled with rehabilitation and reintegration following OF surgery. However, many women’s stories also illustrate their resilience and hope for the future.
Poor quality of care, disrespect and abuse
“In the health center in my village, I felt like the nurse used a sharp object, but before using that object the nurses hit me…. There were two nurses who hit me, they pushed on my stomach to apply pressure so that the baby would come out. When the trained midwife arrived, it was too late; she asked who made a hole in the bladder, and the nurses said they did. Everything was bad, nothing went well.” [Democratic Republic of the Congo]
“Some put cloths into my mouth; others tightened my legs, while others pinched me, as they were telling me I must push. In the end, I was exhausted, and foam started coming out of my mouth. There was no progress; the baby was stuck in the pelvis, when I raised my legs the baby could easily be seen. It was stuck between my legs. After many hours my legs became numb and I could not walk.” [Tanzania]
“The nurses checked me. They advised that I might not have a normal delivery; that it would be by operation… but the doctor was not at the hospital. They tried to reach him but I had to wait another 24 hours before the doctor came to do the operation.” [Uganda]
Pain and suffering
“Full of pain, can’t eat as usual, becoming too thin, spending most of the time lying on a bed and crawling in the house like a child and being dependent on people for simple things, like eating, drinking, and dressing.” [Ethiopia]
“I used to sell cooked rice, but my condition has compelled me to stop. My sales started dwindling as the news of my urine incontinence spread, until one day I failed to make any sale and lost my capital. Since then, I lost my job.” [Ghana]
“[Before the fistula he] used to support me but not always. He was not [financially] stable. He did not stick to one person so I found that it was dangerous to me. After finding that I am leaking he started to go here and there so I decided to move away from him.” [Tanzania]
“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.” [Uganda]
“ …… I don’t even know the reason why I am surviving because I have lost my child and my husband cannot have sex with me I feel so worthless and sometimes I become so down to the extent that I feel like taking my life….” [Zimbabwe]
“I cannot go out into the community. I cannot walk about. I have to wear a pad all the time. I sleep in a separate bed from my husband. My husband does not complain. I don’t feel comfortable having sex. I refuse my husband some times.” [Eritrea]
“Because of the stench that follows the leakage, I spend most of the time cleaning in order to avoid embarrassment. However, no matter how much I clean myself, I still smell. Sometimes some people start to hold their nose when I get close to them, whilst others would openly remark that you are spoiling the air. This embarrassing situation usually makes me sick and worried.” [Ghana]
“They start pointing fingers at the woman living with fistula saying, That one! She has a terminal illness; she has AIDS, that is why she leaks urine nonstop.” [Kenya]
“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.” [Uganda]
“I never thought of myself before. It was always my family, my husband or some of my friends. Now life gave me big lesson and I don’t want to think about anybody else. I feel that I have become self-centered, but it is necessary to survive and become happy.” [Ethiopia]
“The quality of life has been restored back to the way I was in my teens before I developed fistula. Now I can be with my friends without any problem. I don’t have to put on a lot of stuff so that they do not know that I am leaking. The way I used to live before fistula is the way I am living now.” [Malawi]
Interventions to prevent and treat OF must address the range of challenges faced by women with the condition and overcome delays related to access, utilization and quality. Programs rooted in the principles of respectful maternity care and those that employ community-based strategies are particularly well-positioned to reduce the global burden of OF and help the women who are living with the condition.
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Read more stories from women around the world who have lived with obstetric fistula.
Learn about International Day to End Obstetric Fistula.