Thirty-six women who met the inclusion criteria participated in this study. The mean age of participants was 49 years (range 42 to 58 years). Amongst the participants, 12 had a low educational level, 12 had a middle educational level, and 12 had a high educational level. The place of residence included rural area (n = 20) and urban area (n = 16). Seven participants had PFD symptoms before surgery. Half of the participants developed PFD symptoms after surgery. Twenty-eight participants were in the acute postoperative period within 3 months of surgery, whilst eight were in the postoperative follow-up period for over 3 months after surgery (Table 2). Four themes were formed from the interview texts: (1) serious lack of knowledge, (2) heavy psychological burden, (3) different coping strategies and (4) great eagerness to obtain mutiparty support on PFD rehabilitation care (Table 3).
Table of Contents
Serious lack of knowledge
The first theme consisted of two categories: ‘limited knowledge of PFD’ and ‘limited knowledge of pelvic floor rehabilitation care’.
Limited knowledge of PFD
Limited knowledge of PFD was reflected amongst most participants, regardless of whether she was in the acute or follow-up postoperative period. Most participants said that they were unaware of PFD: ‘I don't know what this pelvic floor disorder means, I don't understand’ (P14, postoperative period within 3 months, lived with PFD before and after surgery). However, after learning the symptoms of PFD, some of the participants suggested that their advanced age and childbirth might have caused the disease: ‘The symptoms were normal. You know…so big surgery… It (nocturia) is not a disease. It needs to be slowly recovered. Do not need to see doctor for it’ (P22, postoperative period over 3 months, lived with PFD after surgery). However, they were unsure if PFD was related to their radical hysterectomy: ‘I think a good doctor and very accurate surgery will not cause problems in patient’s pelvic floor function at all. I don't know whether previous surgery will cause this problem to women. I have never seen it before’ (P6, postoperative period within 3 months, lived without PFD after surgery).
Limited knowledge of pelvic floor rehabilitation care
With regard to dealing with PFD, the participants did not know how to perform rehabilitation care, although some women recognised the efficacy of this treatment: ‘When I stand up, I feel that something in my abdomen will fall out, which should be related to the operation. I think the pelvic floor rehabilitation care may improve the situation, but I have no idea what I can do for it’ (P23, postoperative period within 3 months, lived with PFD after surgery). Some of them even questioned its efficacy: ‘After this operation, my pelvic floor function was affected. The most obvious symptom is constipation. …I think pelvic floor function rehabilitation seems to be a psychological comfort. No actual effect. This organ has already been cut off, so physiological change cannot be changed’ (P15, postoperative period over 3 months, lived with PFD after surgery). Several women said that they would not seek pelvic floor function rehabilitation care if they did not have symptoms of PFD: ‘Vaginal delivery may cause the symptoms of PFD, like sexual dysfunction and urinary incontinence. However, if I do not have symptoms of PFD, I will not consider pelvic floor rehabilitation care unless I have such symptoms’ (P9, postoperative period within 3 months, lived without PFD after surgery). Therefore, the participants were unaware of the importance of early rehabilitation care after surgery.
Heavy psychological burden
The second theme was further categorised into ‘fear and worry’, ‘shame and self-contempt’ and ‘guilt and self-blame’.
Fear and worry
For the participants in the acute postoperative period, they felt more fear and were afraid. Some of them felt fear after experiencing PFD symptoms and were worried that they will no longer have a normal life: ‘I fear, I fear that the urine cannot be closed…After I walk a little bit, urine can go itself. The smell…is bad (silence). My life is broken’ (P21, postoperative period within 3 months, lived with PFD after surgery). Under the threat of malignant tumours, some women were afraid to obtain unfavourable information regarding their disease: ‘I do not want to ask anything (doctors)…Knowing too much will hurt me even more’ (P10, postoperative period within 3 months, lived without PFD after surgery). Moreover, they were worried about their PFD symptoms worsening: ‘Of course, I am anxious. I am worried day and night that something will fall out of my body. And I always feel empty in my lower abdominal. This feeling kept me cannot fall sleep all night.’ (P7, postoperative period within 3 months, lived with PFD after surgery).
Shame and self-contempt
As the postoperative time increased, the participants gradually paid attention to the distress caused by PFD. Stigma surrounding the problem of PFD contributed to participants feeling shame: ‘It (PFD) is a terrible thing. I will feel ashamed if I say it (silence). People will say something bad if they know it…’ (P31, postoperative period over 3 months, lived with PFD after surgery). Moreover, they felt self-contempt because they lost their uterus, which meant that they lost their femininity, and they considered that they were no longer a full female: ‘The psychological burden is very heavy, and I am self-contemptuous that I do not be like a whole woman after the operation (silent), just like what they say’ (P2, postoperative period over 3 months, lived without PFD after surgery).
Guilt and self-blame
Furthermore, a few participants narrated that their family had spent a lot of money for their treatment. Despite the intervention, they did not fully recover and remained sick because PFD appeared after the operation. Hence, they felt guilty and blamed themselves: ‘After cost so much money on the disease, I would feel guilty if I am always a sick person after I go back home (silent). … I don't want my family to be worried about me too much’ (P13, postoperative period within 3 months, lived without PFD after surgery). Several women apologised to their husbands for the shattered sex life, which limited their ability to fulfil marital roles: ‘Tell you the truth… I did the operation and now I have the disease (PFD) again…At this point, I'm sorry for him (husband), I can only let him do whatever he wants’ (P4, postoperative period over 3 months, lived with PFD after surgery).
Different coping strategies
The third theme presented two completely different coping strategies from participants to deal with PFD: one was ‘positive coping strategy’; the other was ‘passive coping strategy’.
Positive coping strategy
Most women with PFD were being positive. They described that they adjusted their mentality: ‘At the same time of treatment, I also adjust my mentality, should not be pessimistic. Even when facing a very serious matter, we must be optimistic and accept it’ (P12, postoperative period within 3 months, lived with PFD after surgery). Moreover, they actively sought information regarding this condition, actively treated the disease and focused on their recovery. As one woman said, ‘First found it out from internet how to deal with it. Then, I went to the hospital for help…’ (P11, postoperative period within 3 months, lived with PFD after surgery). Another woman pointed out, ‘I am doing whatever the doctor says. I rest more, exercise properly, and eat more for nutrition’ (P23, postoperative period within 3 months, lived with PFD after surgery).
Passive coping strategy
However, one woman did not seek treatment and merely accepted her situation as ‘destiny’: ‘I think… Everyone has everyone's fate. It is destined, can't be changed… Look at me, my pelvis always feels a little pain and constipation occurs frequently, but I think it's nothing…It is better to let nature take its course instead of fighting against the fate… Accept the arrangements of fate’ (P25, postoperative period over 3 months, lived with PFD after surgery). Some women only went to see a doctor when their symptoms started to affect their lives: ‘Well, if it doesn't affect my normal life and work, I usually don't go to the hospital, unless the symptoms of PFD are very serious’ (P29, postoperative period within 3 months, lived with PFD before surgery). One woman completely stopped seeking help because of her advanced age: ‘My life is definitely getting worse because of the symptom (frequent urination) …I didn’t see doctor. Life is getting worse day by day if you are old. It doesn't matter’ (P1, postoperative period over 3 months, lived with PFD after surgery).
Great eagerness to receive multiparty support on PFD rehabilitation care
The fourth theme was great eagerness to obtain multiparty support for PFD rehabilitation care, which included ‘family support’, ‘professional support’ and ‘social support’.
Hope for receiving support from family members
All women hoped for understanding from their family members: ‘My family refused to pay the cost (silence)…They do not understand my suffering…’ (P18, postoperative period within 3 months, lived with PFD after surgery). Although the participants gradually recovered with time, their energy was inevitably affected, and they hoped that family members could take some of their workload: ‘I have a shop…I still don’t have energy now… I have to work in my shop as soon as I am discharged from hospital. I need my family help me…’ (P13, postoperative period within 3 months, lived without PFD after surgery). They also hoped to obtain decision support from their husbands in seeking rehabilitation and treatment: ‘I do not know whether my husband permit me see doctor or not. I will come if my husband let me come’ (P30, postoperative period within 3 months, lived without PFD after surgery).
Hope for receiving support from professionals
Most of the participants indicated that professional support was necessary. They hoped that health-care staff could provide professional knowledge, skill support and care for them: ‘My friends and I never heard about it (PFD)… Doctor and nurse teach me how to exercise. I want to know more from them. I do want that they can teach me more and guide me more’ (P6, postoperative period within 3 months, lived without PFD after surgery). Moreover, they stated that they would adhere to the health-care staff’s suggestions: ‘Leaking urine makes me feel embarrassed. I don’t dare to talk about it to others…Doctors and nurses are professionals. I especially hope that they can understand me and care me. I will at least relieve some of my anxiety’ (P16, postoperative period within 3 months, lived with PFD after surgery).
Hope for receiving support from society
The participants also hoped to receive social support. One woman said that lack of money was a reason for her delay in seeking treatment, so she wanted to receive financial support from the government: ‘The cost of rehabilitation is too much for me… How can I still have money to go to the hospital for it, unless government gives me financial support’ (P4, postoperative period over 3 months, lived with PFD after surgery). They believed that poor awareness of PFD in society played an important role when they sought support from society and even from family members: ‘Although I often read popular medical magazines, I was blank in this field before the doctor told me about the knowledge of pelvic floor dysfunction. I do think it is not known well by people in society. How can we get understanding and support from people around and society?’ (P26, postoperative period within 3 months, lived without PFD after surgery).