Participants

Of the 100 patients sent invitations, 15 patients declined participation, mainly by returning an “opt out” sheet, without providing a reason.

Ultimately, data saturation was judged to have been achieved after 22 interviews. The sample was comprised of 12 females and 10 males (Table 2). Ten had CESI and 12 had CESR. Participants’ average age was 46 years (range 31–61, standard deviation [SD] 9.21). The mean number of operations the participants had was 1 (range 1–4, SD 0.8), whilst average time since having the operation was 62 months (range 4–122, SD 38.1).

Table 2 Demographics and clinical details of participants and interview details.

Interviews had a mean length of 45 min (range 27–72, SD 12.3). Most (n = 18) took place at the patient’s home or workplace. The remainder occurred by phone (1), by video conferencing (1) or in person at the centre (2). For 20 interviews, only the patient was present. For the remaining 2, the patient was, at their request, accompanied by a spouse/partner.

Themes

The raw data from the transcripts was coded and then placed into domain summaries. Domain summaries were higher order groupings that collectively summarised what the similar outcomes were describing. Table 3 shows the domain summaries and the ideas for provisional themes, which led to the development of the 4 final themes.

Table 3 Domain summaries, ideas and themes.

This study is reported in line with COREQ (Supplementary Appendix 1) and the Springer Nature reporting reproducibility checklist was completed (Supplementary Appendix 2).

Theme 1: Varying priorities of physical health

Patients had varying levels of prioritisation depending on the severity of their condition. Generally, CESI patients felt bladder and bowel outcomes had the most impact whilst for CESR patients it was mobility issues and pain control.

“My bladder and everything to do with my ‘plumbing’ would be number one… I would still be able to look after myself pretty much and take medication for the leg pain, but the thought of losing all that and being dependent on other people that would be like a nightmare”

(Participant 22: M, 50, CESI, time since initial operation 1 y 6 m)

“If you can get the pain under control then you can deal with everything else. Pain, mobility, bladder and bowel yes, they’re the ones that are the most important in that order … I would much rather have a colostomy bag and retain the ability to move around, walk, interact socially and work”

(Participant 14: M, 47, CESR, time since initial operation 4 m)

Patients with bladder dysfunction reported a range of changes including urinary frequency, urinary retention, overflow incontinence, and an inability to feel when they passed urine. CESR patients who continued to experience bladder and bowel difficulties reported frustration, embarrassment, and negative effects on their intimate relationships. The main issue causing loss of physical sexual intimacy and emotional distancing between partners over time for male participants was with the inability to achieve or maintain an erection. For women, the issue was due to numbness in the saddle area.

Fatigue was commonly reported by participants and how the “effort” of doing an activity was greater than before. To recover extended periods of sleep and rest were required. This led to greater or complete assistance from family and friends with household duties.

Back pain was intense for many CES patients and described as “exhausting,” “over-rode everything,” “suicide pain,” “back was like a rusty hinge,” and like “sticking a knife in your back.” Significant back pain and stiffness “like someone had opened my back and poured lead in there” after the onset of CES could limit them standing upright, walking, and sleeping. It also impacted on home and workplace activities.

Theme 2: A fragmented healthcare service

Many patients in the study reported a time delay between their initial symptoms and undergoing imaging (e.g. MRI) to diagnose their CES. Many recalled making multiple trips to care providers before imaging was organised and receiving their diagnosis. They reported frustration and a perception that there is a lack of awareness amongst healthcare professionals (HCPs) regarding CES.

“There are an awful lot of points there where it (CES) should have been picked up. If I had ended up like some people, I would have probably taken that route (legal action) because I do genuinely feel that this syndrome (CES) is not taken seriously”

(M, 49, CESI, 6y2m, participant 2)

Surgery was reported by most patients to relieve or reduce the severe leg pain but medical follow up was described as unsatisfactory by almost all participants. They reported receiving conflicting or incorrect information regarding CES. They described anxiety over what they could and could not do physically.

“There wasn’t a real follow up from the hospital other than the three-month questionnaire… but what I still don’t know is it going to get worse, am I doing the right thing by walking … am I pushing it to the limit, is that ok. Should I be resting?… I still don’t know if I am doing the right thing or not”

(M, 50, CESI, 1y6m, participant 22)

Theme 3: The process of adjustment

Reduced mobility due to back and leg pain was the most common reason to be unable to continue employment. Some patients had returned to work with appropriate adaptations made for them, but most employers were described as not making adaptations and instead often recommending early retirement for medical reasons.

Generally, patients who returned to work with supportive staff valued the routine despite the difficulties. In all cases where patients were unemployed, they missed their jobs as they had derived significant satisfaction from their role.

“Previously I had been very active … so not being able to work and do something that you enjoy … that’s what put me in this place of isolation and depression because it is suddenly so much activity to nothing at all”

(F, 57, CESI, 2y6m, participant 5)

The informal caring support from family and friends was described as more consistent and reliable than that received from the formal health service. Primarily, the patient’s partners played a significant role in caring for them in the short term after the operation to longer term care like housework and exercise. There was a lack of experience of formal support groups amongst most participants.

Generally, participants described that if there was any recovery with their bladder or bowel function that it had occurred within 2 to 3 months of the operation. Back and leg pain caused by CES were the most obvious features to patients hence when this resolved after the operation it was a great relief to them.

Theme 4: Anticipatory anxiety and diminished self-worth

A substantial proportion of CES patients reported being worried about their prognosis, physical health and future employment. They attributed this to not being clear on the cause of their condition, what to do after the operation, including what physical activities were safe. Some felt the process of hospital admission, diagnosis, surgery, and discharge within a short space of time was “like a trauma”, impacting them, psychologically.

“It just worries me as I get older am I going to end up in a wheelchair because I’m in that much pain … and I’m thinking job wise how long have I got left in this job?”

(F, 42, CESR, 7y2m, participant 19)

“I’m very grateful that I can walk, and I have the sensations back but I feel a little bit like a time bomb that another part of the disc could go at any point”

(F, 31, CESI, 8y4m, participant 8)

Isolation was described by many. They attributed this to a variety of factors ranging from a lack of access to effective and regular health care support and that some HCPs were perceived as often being dismissive of the challenges they were undergoing. Bladder and bowel dysfunction contributed to the feelings of ‘aloneness’ due to the fear of having “accidents”. The physical difficulty of having sex in some instances made patients feel more distant from their partners, with relationships ending in some instances.

Low mood, and to a lesser extent suicidal ideation, was reported by a few participants. They said they had struggled to cope at work due to the back and leg pain and reduced mobility and some had their jobs terminated prematurely. Two participants reported that psychological distress culminated in them attempting suicide as they were dealing with the consequences of CES and significant personal events at the same time.

Generally, people with CES realise there low public awareness regarding the condition. CESI participants are aware of the range of more severe outcomes that they may have experienced and were grateful they did not.

“The residual nerve damage is always there and the way I look at it it’s a small price to pay for what I believe other people have suffered a lot worse than what I have.”

(M, 50, CESI, 1y6m, participant 22)

There was interest and determination amongst many patients to pursue exercise, but they had anxiety over the long-term effects. Those who are reassured by HCPs try to do core building exercises like pilates, swimming and walking.