Shattered sex life
Living with fistula for years, and hence continuous leaking of urine and symptoms associated with it, obviously affected women's sex life. Only in rare cases could a woman with fistula continue having sex with her partner. Sexual abstinence was common and was experienced as a major loss:
"...since I got this problem, we have not slept together up to now... and this is the most painful thing" (Jane, 25 year old, lived with fistula for one year).
The pain of being seen as unclean and sexually undesirable was a shared experience:
"...a lot of urine is coming out and my husband will not agree to have sex with me because it is dirty" (Cathy, 35 year old, lived with fistula for 2 years).
The husbands presented the problem more as one of lack of sexual interest on the part of their wives:
"...they (wives) don't like sex because a woman with fistula lives with wounds, therefore she will be in pain most of the time and she will not enjoy it" (Husband, FGD- Mpwapwa).
However, they also reported lack of desire to have sex with their wives:
"Firstly is the discomfort of leaking urine, the smell, and the soaked clothes which burns... yes...burns her genitalia, resulting in her developing wounds. ...again, as a man, trying to have sex with her; on the first day I did not feel well, it was distasteful and unpleasant all the way through" (Husband, FGD-Mpwapwa).
Some women reported that their husbands sometimes had sex with them out of pity:
"....perhaps twice in a month or at times once per week...when he looks at you, he feels sorry, but you never know now whether he has affairs" (Woman, FGD-CCBRT).
Some husbands were worried about their wives becoming pregnant again and therefore decided to abstain totally:
"...if we had sex could not she become pregnant again? For this reason I have never attempted, we are just living until today (laughs) I live with her nicely, she cooks, we eat" (Husband, FGD- Mpwapwa).
Many of the women who still did not have any children wanted to have sex in order to get pregnant:
"...I feel bad. I stopped having sex a long time ago. Perhaps if I was sexually active I could have had another child, now that I don't do it, how can I get a baby?" (Lisa, 43 year old, lived with fistula for 20 years).
Women who already had children had different concerns:
"I am exhausted and tired of washing clothes. If you sleep with your husband, the following morning you have to wash your clothes and those of your husband, and you will cause people to start running away from your husband because of the smell of urine" (Cathy, 35 year old, lived with fistula for 2 years).
Husbands' experience of living in the same room with a woman with an untreated fistula was very unpleasant and trying, and as a result, many could not cope with the situation:
"...frankly for those of us who have lived with those women (quiet moment), it is very tough. You cannot sleep until morning; you will be forced to wake up at night to change beddings" (Husband, FGD- Mpwapwa).
Inability to attend to daily commitments
In addition to the leakage and the pain and discomforts of the wounds, women tended to experience general body weakness, which reduced their capacity to carry out their day-to-day responsibilities. Because of this experience, some women did not have the courage to go back to their homes after they got the fistula:
"...I could not return to my husband because I am unable to carry out my daily duties. I have just been staying at my mother's house. ...I have not been able to work, so if I went to live with my husband that could have caused problems I would not have been able to wash his clothes nor mine. Until now, I only clean my toilet rags. My sister's daughter washes my clothes.
Misunderstandings could have arisen, that is why I did not return" (Asha, 28 year old, lived with fistula for 2 months).
Many women spoke of their inability to carry out domestic chores or earn a living through farming, business, or employment. Some women were not allowed to cook for the family as they were judged as dirty or unclean:
"...I am not cooking, yes, because when I cook, others, including my husband do not eat. They see it as dirt. ... if I prepared food, he (husband) would not eat, thereafter he started to cook food himself" (Lisa, 43 year old, lived with fistula for 20 years).
However, it was clear from the discussion with the husbands that a woman with this problem, in special circumstances, could be allowed by their husbands to cook, particularly if they have children:
"...because of her condition, she cannot farm, but she can cook, and since she has children she has to cook" (Husband, FGD- Mpwapwa).
Consequently, because she could not farm, the work force of the household was reduced:
"...we used to farm together, but now I have to do it alone. She cannot stand for a long time and there must be water around so that she can clean and wash her clothes" (Husband, FGD- Mpwapwa).
The loss of ability to work was seen as a great obstacle to progress:
"...Before, I was able to earn a living on my own. I was working in other people's houses as a maid. For now I cannot work for anybody because I am afraid of staying in peoples houses...I am just afraid... I am afraid of soaking other people's beds" (Miriam, 28 year old, lived with fistula for 10 years).
The feeling of being dirty due to leaking urine and the smell contributed to the women's failure to continue working:
"... I had a petty business stall. I was selling doughnuts, but now I cannot live that kind of life...I cannot sit for long...again, if you prepare doughnuts while you are leaking urine who will buy and eat them?" (Gloria, 32 year old, lived with fistula for 19 years).