A total of 14 patients with rectovaginal fistula participated in the study, and the mother of one patient and one treatment staff (master of obstetrics) were interviewed to ensure maximum variability. Most participants had a low educational level, and all were housewives. The most important cause was difficult childbirth and sex (Table 1).
Five general themes and ten sub-themes emerged after investigating interviews (Table 2).
Themes include religious harassment (the sub-theme of being defiled), fail (sub-themes of loss and negative attitudes, disrupted sex (the sub-theme of sexual dissatisfaction), consequence (three sub-themes of sleep disturbance, mental crisis, and isolation), and ultimately panic (three sub-themes of humiliation, secrecy, and fear).
One of the main themes was the religious harassment theme. Study participants had difficulty performing their religious duties due to their illness, so they blamed themselves religiously and were not prepared to perform religious activities.
"... Only since I have no control over my urine, defecation and, gas, my Wuzoo doesn't remain intact for a long time. While I'm praying, I'm always afraid that it breaks my prayer...." (Participant 3).
Or they were afraid of polluting religious sites. "I do not go to the mosque because I am afraid to defile the mosque" (participant 11).
Another important theme was to fail, which included two sub-themes of loss and negative attitude. Study participants often regarded the illness as the loss of everything and saw the future as bleak.
In this regard, one participant said, "To be honest, the disease destroyed my life... let alone lacking control over your urine, defecation, and gas” (Participant 2).
"It’s very bad to be suffering from the filthiest thing. I am very angry in front of my eyes woe betide others and I pray that it will be treated “(Participant 13).
Some participants also regarded the disease as an unpleasant experience and were sometimes desperate. "I have nothing to say but well everything to me was contrary to my dreams and wishes up to this point. Only the first few years of my life were good and financial problems would not allow me to touch happiness at that time, but I wish people did not have all the pain at the same time" (Participant 5).
Another main theme of this study was disrupted sex. Participants were sometimes dissatisfied with their sex, and sometimes escaping it.
"Well, the relationship is a two-way thing, and I must be content with it, but (he) always does its job and doesn't care about anything" (Participant 7).
"Both my husband and I hate sex" (Participant 9).
“In the early course of the disease, as soon as my husband suggested me to have sex, I said that I’m on my period, and have spots, and then I fought with him without planning. Now I have no sex with him once a month" (Participant 14).
Another main theme referred to by participants was panic and fear. Constant humiliation, secrecy, and fear are part of their lives. They always think no to be humiliated and ridiculed, and their name dragged through the mud because of the current situation.
"But my husband mocked me for expelling gas during sleeping a couple of times” (Participant 1).
"I'm so embarrassed to fart, especially my children are boys" (Participant 6).
"What can I say to my family, it's hard for me to explain a bit" (Participant 4).
"I'm not always worried that my daughter or my son will notice this" (Participant 2).
Another main theme of this study was the consequence. The consequence of this complication for patients in this study was isolation, sleep disturbances, and mental crises. Patients often fall asleep later than others, lest they expel gas at bedtime, in addition to being a light sleeper so that I can manage defecation if it happens. The consequences of the disease often made them nervous and were in a state of mental crisis. On the other hand, these patients have cut family relationships and have often been isolated.
"At night, I always let my husband sleep, then I sleep, and I sleep after making sure he has slept" (Participant 1).
"I try to control as far as I can, but I'm not satisfied. I'm tired of every single second of my life" (Participant 12).
"I especially have to stay in the bathroom for a long time and get angry" (Participant 7).
"And I always try to squeeze my legs if I'm standing next to somebody. Interestingly, the pressure continues until it's expelled" (Participant 4).
"I reached the stage between hope and hopelessness" (Participant 1).
"It has a big impact on my commuting. I used to go to the village for a week and stayed at my mom's house, but I don't want to go now, and I feel like I’m in touch less frequently “(Participant 10).
“But I'm scared to be in the public, and that fear has caused me living in a small family facing some difficulty in daily commute" (Participant 8).