Normalisation.

Giving birth is often considered a physically traumatic event in itself, and a period of healing is expected for all women. This appears to have led to confusion, for women and healthcare professionals, as to whether symptoms were a ‘normal’ result of labour and birth which would improve with time, or something that required healthcare input. Participants reported how they normalised what they were experiencing and attributed their symptoms to expected outcomes of childbirth.

Yeah so, what happened with me was that during childbirth I had, I think it was the third degree tear I had during childbirth. And in the days and weeks that followed, I was still in a lot of pain but I just assumed I’ve just had a baby, that’s why, and I thought no other mums are complaining about it, so I should just be getting on with it as well (P32, post-natal, 35–44).

Many women talked about how healthcare professionals often gave the impression that their symptoms were a normal consequence of labour.

I felt that GP had no appreciation of what’s happened, no disrespect to GP. Uh, but I think they had no appreciation and when I had my six week check, it was very general questions. They’re very general, and even when I’ve addressed things like that, they didn’t do anything with it in a way. They just said it’s pretty normal, it’s pretty standard. You know it’s only six weeks, but then I wasn’t offered anything beyond that. Sometimes I feel like, within the six weeks, everyone can tell you that whatever happens to your body, it’s normal, because everything has been thrown out. And that’s fine, but when is the moment to start addressing… well, actually post this time I still feel that something is wrong and is it normal or is it not normal? And I feel with an injury like that, I think that should be addressed definitely (P33, post-natal, 35–44).

This normalisation meant many women were unsure if everyone experienced such symptoms after having a baby. This led many to think there was no support available and sometimes they were reluctant to seek subsequent help from healthcare professionals.

Feeling dismissed.

Women’s reluctance to ask for help with symptoms of AI were further compounded by reported feelings that healthcare professionals were often dismissive. They described how symptoms were often not taken seriously, and this often led to participants not continuing to seek help for their AI symptoms. This feeling of not being taken seriously or dismissed is evident across healthcare professional types, with some women reported still feeling dismissed once referrals had been made to secondary or tertiary care, suggesting women are feel their symptoms are dismissed throughout their care journey.

The colorectal surgeon was very dismissive, didn’t really care you know, he sort of had the attitude here this has happened and you just have to get on with your life, and that was it (P13, post-natal, 35–44).

Prioritisation of baby’s needs.

Participants often felt that their babies’ needs were prioritised over their own. Women often felt that it was not just healthcare professionals who prioritised the babies’ needs, but they themselves did too. Participants described healthcare professionals being more focused on their baby, particularly at the six-week GP check, resulting in their own needs being overlooked or women not mentioning them.

But professionals that are involved should be picking up on this as well. The, the people that are going out there, not just there to see if that baby is gaining weight…. It shouldn’t be the only thing of any importance for me…. Is your baby gaining weight? Yes. Goodbye. Not about how are you. Are you OK? You know (P10, menopause, 45–54).

And you think like really obviously just had a baby you’re trying to? You know, yeah, you’re so tired trying to breast feed all this, that and the other and then you’ve got that on the back of it. You know. So like you’re trying to put your focus on the baby aren’t you? But then, if you know realistically if it was ‘cause of something else and that make you feel like the focus was more, on yourself. You know it’s a lot. It’s kind of a lot to take in at that time, isn’t it? And you just come last in that scenario, you’re kind of grateful aren’t you that your baby is well etcetera. (P11, post-natal, 25–34).

Lack of examination.

Participants discussed how they were often not examined after sustaining an injury during childbirth (sometimes immediately after birth, and sometimes later in the postnatal period as well), leaving the injury unidentified and causes of anal incontinence unknown, thus missing the opportunity for a timely and accurate diagnosis.

When I went to my GP for my post- check up thing, didn’t even examine me. I said I’m having a really bad time, I don’t think things are right then just said ‘it’s like that for lots of ladies. Just get on with it.’ And that was it really (P10, menopause, 45–54).

So when I had, when the injury occurred. First of all, I would have liked it if she did notice that I had internal damage because I needed to be stitched by a colorectal surgeon and I would not have any issues at all. So that was a missed diagnosed tear (P4, menopause, 45–54).

Incorrect diagnosis.

Women often reported a delay in obtaining an accurate diagnosis, leaving them without support or confirmation of what was causing the symptoms of AI. Some participants reported receiving an incorrect diagnosis, again delaying the receipt of appropriate support or treatment. Many women had been told their symptoms were a result of Irritable Bowel Syndrome (IBS) and were given treatment or advice for this incorrectly.

I just went to the GP ‘cause I was literally on the toilet all the time… . multiple times a day, and I asked her and she just said it’s just IBS, “You’ve got IBS”… . which I obviously went away and thought, “No, I’m not happy with that.” So I sort of keep going back and asking, and she just kept telling me it was IBS and, and this went on probably for about three years altogether (P27, menopause, 55–64).

It was a midwife from that ward coming round doing the checks and I mentioned it to her and she said I will treat it for constipation ‘cause that can cause like an overflow sometimes. So they did that. They treated it as a constipation for about six weeks, but nothing ever came of it ‘cause I, I personally would say I wasn’t constipated, they just kind of assumed that (P20, post-natal, 18–24).

For many participants, normalisation of symptoms and feelings of being dismissed by healthcare professions results in them not knowing where to go for support and treatment. Therefore, they are less likely to receive appropriate examinations and diagnosis. Confusion with other conditions further complicates the situation.

Feeling ill informed about injury.

Participants often reported feeling ill informed, lacking information about what had happened during childbirth and what the consequences of injuries were.

Well I didn’t know I’d had an injury…. I didn’t really. I mean I knew, I sort of knew, because I knew this isn’t right but I didn’t know at that point exactly what had happened. (P10, menopause, 45–54).

But that’s about as much as I know, like she never really said, I mean, I can assume, I know sort of where I torn, but that’s all I knew (P14, post-natal, 25–34).

Lack of debrief or unanswered questions after birth.

Many participants reflected on how they would have valued a labour debrief to understand what happened and the injury they sustained. Many participants reported feeling like they were not given the information needed about what injury had occurred and how tears had been repaired, or described feeling that they had been left with unanswered questions about some of the decisions made during labour. For example, some questioned if they should have had a c-section; if they were advised to push for too long; if they should not have had their waters broken; or if a consultant should have come sooner.

‘Cause obviously I had stitches. And then, you know, they would check them. But there was no, I never had, “This is what we did,” … you know, I’m presuming it’s in my notes somewhere. But I, you know, I’ve never been told, “It was this,” you know, “This is how many stitches you had.” You know, there was none of that. We just didn’t, it just wasn’t mentioned. It was like, “We’ve stitched you up. Off you go” (P12, menopause, 45–54).

I wonder whether some of my issues could have been avoided if I had had a C-section, be that elective or emergency one, but earlier. Because a lot of the issues are caused by the forceps and, the long labour (P30, post-natal, 35–44).

Participants reports show clear evidence that they felt ill informed and would find a debrief after labour useful.

Lack of awareness of AI.

There was a perception from participants that there was a lack of awareness amongst healthcare professionals, and society more widely, about AI as a result of a childbirth injury. This was felt to be a barrier to receiving appropriate care and support, and also to feeling that they could talk about their symptoms and what they were going through.

I don’t think, even in the hospital it was like it was like it’d never happened before. It was like it was as if they were dealing with. I don’t know like. Strange. I mean one comment that the physio did say to me when I did end up having the appointment was that if it’s not talked about enough so people don’t know it happens. It’s more common than you think, but also. The women go home, they might not tell you about it (P11, post-natal, 25–34).

I wish it was more talked about. I wish society understood it better you know, and knew that this was a thing you know, so, ‘cause I think other women would … you know, I’m pretty sure the other women are there but like me, they probably don’t even tell … you know, I don’t even tell my sisters never mind you know, the outside world (P16, menopause, 65+).

Focus on bladder rather than bowel symptoms.

Closely linked to reported lack of awareness of AI, participants also reported an emphasis on knowledge and care on bladder issues. This may be because many women and healthcare professionals are more comfortable discussing bladder problems than bowel issues, and also because of the higher prevalence of postnatal bladder issues. Some participants experienced both urinary and anal incontinence, but the focus and the support offered was more focused on urinary incontinence.

I was starting to sort of be aware that sometimes my my bowels were not functioning as I sort of thought they were, but it was something because the focus was always on my bladder, that it got sort of left, but it wasn’t until like 2016. I, I was in sort of menopause, premenopausal sort of age, I was 48 then and I was aware that things were not as they should be (P7, menopause, 45–54).

There, there just is no information, or you know when. When I went through it, you know, even looking online I could not find any information. It was all about pelvic floor and weeing and jumping on trampolines. And but there was nothing at all. So I just felt like I was completely like I was the only person in the world that had ever happened to like, there was absolutely nothing (P8, menopause, 45–54).

Linking to information opportunities antenatally.

Some participants felt that all pregnant women should be provided with information about AI and the risks before giving birth, as part of routine antenatal information offered to women. Increased awareness and knowledge antenatally might help women understand when symptoms are not just expected results of labour and birth, but where more intervention and support from healthcare professionals is needed, and when to ask for help. It would also help women planning their births, and making important decisions around options and risks involved in delivery.

Would’ve liked … it, it would’ve been nice if I’d known when I was going in to have, have my baby what the, what the possible consequences of a bad tear would’ve been so that I maybe could’ve sort of realised that it wasn’t a normal symptom to have ongoing incontinence issues, does that make sense? (P13, post-natal, 35–44)

Or I don’t know like the midwife could give you stuff during those pre birth checks. You know, you know they give you, they give you information on breastfeeding, but there’s very little information about, you know (P30, post-natal, 35–44).

Lack of information on the link between injury and menopause.

Many participants who had experienced either the onset or a worsening of symptoms during the time of their menopause reported that they were unaware that this could happen or that there was a link. A need for information that AI symptoms can be triggered by the onset of menopause would have been helpful in understanding what was happening, and potentially seeking help earlier.

They’ve been bad for the majority of the time, but I would say that they are worsening with menopause and and I didn’t realise that that can happen. Women that had injuries but never had any issues with their injury. They can now get issues in the menopause, so I didn’t realise that, so that’s why mine are a bit more worse (P4, menopause, 45–54).

So I had to go to see a gynaecologist. And I think I might mentioned then about the incontinence thing, and it was, that was probably the first time I’d heard someone say, ‘there’s lots of women of your age going through menopause that are presenting with these problems’ and that was out of the blue (P7, menopause, 45–54).

Inadequacy of the six-week check.

The six-week check was often reported by women as not being appropriate for their needs. It is likely that for many women six-weeks post birth is too early to be ready to disclose symptoms; particularly those who felt what they were experiencing was a normal part of labour recovery. However, some women felt that it would have been a good opportunity to be examined and asked about any changes or difficulties with controlling bowel movements or flatus. This may have allowed problems to be detected and women could be signposted or referred on for further help.

Some women said they were not offered a six-week check, and those that did often reported that it was focused only on checking on the needs of the baby, and that their own needs were neglected or not able to be addressed in the short time available. Participants who were not offered a maternal six-week check often felt they would have benefited from one.

Well, like like I think it’s, I don’t know just from one thing I think is absolute madness is that, GPs don’t do a six week check on mums that I think that’s absolute madness. That seems to me like something that could easily be changed and would do a lot of good because there’s so many things that could be worrying you or, causing you problems at that stage (P30, post-natal, 35–44).

I would investigate post postnatally or maybe even to put that into the six week check, whenever women have experienced tear and what a degree of tear they’ve experienced. And maybe focus a little bit more about that, because they are focusing on their like mental questionnaire and there’s that but there’s so many things to go through, including child. (P33, post-natal, 35–44).

Women’s accounts suggests that six-weeks checks are viewed as important, but not necessarily adequate or at the most appropriate time. Postnatal checks for women, beyond the six-week check would be useful in ensuring women with AI following a child-birth injury are identified and appropriate action is taken.

Waiting lists and chasing services.

Some women reported having to wait for a long time for appointments for consultations, treatment or surgery. Women also reported having to actively chase up referrals or appointments after feeling that things were taking a long time or not progressing. This left women with long periods of time where they were left to manage symptoms alone, or struggle on with no support. Waiting times were amplified during Covid-19, but these waits existed before the start of the pandemic.

It took … from seeing the gynaecologist and, and getting the scan just before I seen the colorectal surgeon there was a year gap on the waiting list just to get the scan, yeah (P13, post-natal, 35–44).

I had to wait over a year for [Percutaneous Tibial Nerve Stimulation] PTNS therapy, you know? And in that time, God, like, it was just awful, that waiting period that you have to put things in, in place because obviously it is NHS, you have got the waiting times and, especially now with Covid and stuff, and, you know, the more, I think the more people know about these pessaries as well, they, they’re, supposedly one of the women on the group that I’m on, on Facebook, said that there is a shortage of pessaries at the moment (P15, post-natal, 25–34).

Stuck between specialisms.

Some women reported difficulty in navigating specialists and referrals. For some this was reflected by the experience of being referred to the wrong person or the wrong speciality, prolonging the time and frustration in reaching appropriate treatment or information. This may be closely linked to the lack of knowledge and awareness of AI amongst healthcare professionals. This problem is further complicated by the structure of many systems and departments. Women reported being referred to different consultants for different parts of their treatment, seeing two different specialists for the same problem, such as a colorectal surgeon and gynaecologist. This increased the time taken to fully address the issues, and also made the process more complicated for women trying to navigate it.

They’re getting posted from different places like you have to see one person for your if it’s a vaginal prolapse, you have to see another person if it’s a, if it’s a rectal prolapse, you have to go see somebody else with something else. It’s just… You know and then the time that it takes (P19, menopause, 55–64).

I have now two separate consultants, one is a colorectal consultant who specialising in a birth trauma. And then a second one is a gynaecologist that’s specialising in birth trauma. And, obviously, colorectal is from end and then everything at the front until the middle is the first one. And I did not know how to do a, kind of, narrow specialisations. And one doesn’t really look at what the other issue is, it’s a bit, you know? (P1, post-natal, 35–44)

Mental and emotional needs ignored.

Many participants reported feeling like their mental and emotional needs were overlooked. Many women reported struggling to cope with symptoms of AI and the impact that that had emotionally, but felt that there was a lack of information on sources of support to support them through the difficult experiences they are facing.

Probably from like a mental health perspective as well. I don’t know if it’s one to go into depth as such, but just having those again just links or resources that or people that women can talk to about their experiences (P25, post-natal, 35–44).

But it has got worse, it just, yeah, the longer the time’s going on, a, the worse my prolapse is and, b, the worse my, my mental health is as well (P27, menopause, 55–64).