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Table 3 Living with genital fistula- illustration of codes, categories and themes

From: “I am alone and isolated”: a qualitative study of experiences of women living with genital fistula in Uganda

Codes Categories Themes
Waking up from sleep… urine has spread to all the bed up to the top, to the extent of wetting the hair. Too much urine: Occupied with avoiding wet outer clothes Living a physically changed and challenging life
I wash daily like a ‘Nakawere’ (woman with a new-born)
I use many pieces of cloth as pads.
Wounds do not allow me to walk properly. I walk like a lame woman Burnt by strong urine or pad: living with genital sores and rashes
The pads burn my private parts and I am full of wounds due to padding myself all day long.
Urine that comes when you have not drunk has a very bad smell Urine too smelly to bear
Use herbs for wounds and smell but did not work
Friends changed, they are not like how they used to be. Socially Rejected Living in social deprivation and isolation
My siblings shunned me and could not even enter my bedroom
They don’t want to get close to me thinking that I am dirty. This makes those of us with the fistula condition feel very bad
Ashamed of visiting friends
I quietly suffered Socially Isolated
I cannot attend to visitors due to smell
When others are beginning to be happy, the urine starts dribbling
Other people do not want to come near me, they say I smell bad
Neighbours feel bad when I feed their children, I therefore, keep away
My father used to verbally abuse me (… die like a dog, you deserved the problem, you are a disgrace to family).
I also don’t go to their places because I feel like a burden
Whoever gets to know of your condition, he/she can’t accept you to work
She is like a child, she urinates wherever she goes Perceived stigma (from friends and relatives) Living Psychologically stigmatized and Depressed
You even fear to hang it (padding cloth) for drying
Fistula feared contagious, wherever I sit nobody else would sit there.
I saw my mother getting irritated by my padding cloth
They mock me, spit at me, laugh at me, and do not talk to me.
They even stopped their children to come closer to me.
They stop their children from coming to my place and also playing from there in order to stop me from giving them edibles
People around do hate me. Enacted stigma (from self)
Everybody makes my life difficult.
I hated myself and reached an extent of wanting to kill myself Depressed
Fear wetting self in front of other people. Feel misery and have no peace
I am widened, feel pain in the vagina, and different from other women Changed body A marital and sexual life no longer joyful
He left me and got married to another woman Abandoned by husband
I lost my marriage
He (husband) told me that he can’t stay with me
Too much cleaning to have sex Sex no longer normal
I am never in mood for sex.
So this reduces my appetite for sex
He does not enjoy my company (sexual intimacy) Sexually denied and rights violated
Living under one roof but different bed/room
Not producing again
He forced me to have sex, actually he raped me