Elly: It affects nearly every aspect of your life. Your day to day living at home. Physically, how you feel. What you can do. It affects your relationships, all of that is going to eventually have a knock-on effect on you emotionally. I don’t know if I feel like-, I’m not the person I used to be. I think that’s one of the big things. I don’t feel attractive anymore. I feel like I’ve lost myself quite a lot since being diagnosed with my prolapses.

Voice over: The clips shown here were collected as part of a research study exploring people’s experiences of a wide range of urogynaecological conditions. We talked to 74 people to better understand how they experienced these conditions and their healthcare interactions.

The clips you will see give insight into that participant’s experience, but these clips were chosen because they represented common themes within the wider interviews. Some participants wanted to be able to share their story but did not feel comfortable doing so on video.

We hope that this video can be a starting point for conversation and a chance for policy makers, healthcare professionals and others to reflect on how we can learn from these experiences and improve our services.

This film contains the following sections: Experiences of living with urogynaecological conditions; Interactions with healthcare professionals; Engaging with the healthcare system; Things that have brought people help and hope.

Experiences of living with urogynaecological conditions.

Jessy: So yeah because it changed me from being kind of like invincible to be more vulnerable, like a, like I’m feeling, feeling invincible, like yeah I can drink and I can do whatever I want and a sense of freedom and like ah, I can do everything, to now I feel I’m feeling vulnerable like ‘Oh God, and this bladder is doing what it wants, I have, I have a little self-control’ so it’s kind of like my bladder and me. And, and everything is, my, my life is kind of like a, orbiting around, we just go around the, the bladder and the toilet breaks.

Helen: Just absolutely constant. I, I you know and then your obviously mental health, I mean that’s diabolical because you, I couldn’t do anything. I couldn’t do anything with my kids. I couldn’t enjoy anything. Couldn’t oh, you know it’s awful [laughs] absolutely awful. I mean, there was no life at all at that point. And then it’s the constant, even once the pain comes off, it’s the kind of constant awareness like you can’t just have a normal day.

Jan: That was a big, a big feeling of ‘Oh my gosh I’m getting old. Is this what life is going to be about now from now on?’ and not really knowing so I don’t, I think I managed to keep going for about six months and thinking, ‘well perhaps I’ll just not drink any water before I go’ but it didn’t make any difference. It wasn’t about the water intake at all. It was all about just not being able to hang onto to the, the urine.

Jeannie: So I spent a lot of time crying at that time. And then I think I got quite, I felt quite angry and I just felt of all the times that I’ve been to the doctors and had smears and you know after I’d had my second child, and going for sort of contraceptive advice, and everything, all the times that people had you know been looking, and no-one had said, no-one had said, ‘You know like there’s a problem here, and especially after menopause it might get a lot worse, so you know, be careful what you’re doing in your job, be careful about lifting, be careful, you know what you’re doing in your general life. You know go now to a physiotherapist and get the exercises, and, and get regular check-ups.’ Nobody says it, nobody said a word.

María: Ashamed, you know, like I think like it’s a tag of shame I have in my forehead, you know. But it’s still I think there is some voice deep inside that is saying like, “You are not right”, you know, and I think that’s the, the, the conversation that is very subtle because again I don’t research about this, I don’t, I prefer not to know. But I think the conversation in the back of my mind is like you are not right, you are not perfect, you are not enough.

Voice over: Interactions with healthcare professionals.

Penny: It’s a hard, hard job. And they are just general practitioners. And they can’t have the knowledge for everything. I don’t envy them. We’ve had friends who have been GPs. The abuse they put up with from some people. And I think if they’ve had a couple of bad patients that have been really nasty and then you walk in, they’re still carrying that with them, which doesn’t help you. But they are human. I think they’ve got a really tough time. I admire them for doing it, but nonetheless we do all need to be looked at individually and treated as individuals and really listened to and referred on, if that’s what we think we need.

Chloe: And then finally I saw kind of urogynaecologist at the follow up clinic and she examined me and, you know, listened to everything from the start to the finish really. Really wonderfully and yeah had the reassurance I got from like a, a whole group of like complete experts looking at things was really, really good. It was good to know that they all thought everything was normal and that gave me like a whole new sense of ‘okay actually this is all manageable and I can deal with this and things are going the right way,’ so actually in some respects having lots of examinations and lots of people look at it gave me lots of reassurance and the confidence to kind of be a bit more hopeful about the future so I, yeah, yeah there are good and bad sides to having lots of people examine you.

Eve: So I do feel like I’ve been believed but listened to is quite different I think and I just, you know, when I get the le-, I got my most recent letter from my consultant and it just didn’t reflect what I thought our conversation had been like at all. And then I stopped and thought ‘well is it my fault that I’ve not really explained myself very well? Like have I not, have I not explained it? And I do think whenever I’ve gone to the appointment I do almost try and keep a very positive upbeat kind of demeanour because I feel like maybe it will get me what I need more rather than like going in there and breaking down. But then I wonder if that has just made it feel like, made him think that everything is okay when I mean I’ve said it’s not okay. I mean, I know, you just start doubting myself don’t you, like I know that I have said like, “This pessary doesn’t feel right which is why I want to try the other one”.

Jeannie: So that was really good, I just felt she had a really good understanding of my difficulties, and she was very positive about what could be done, and she also, it wasn’t just a one-off appointment. She said, you know, come back and if you’ve got more questions, cos the first time you, you know when you ask loads of questions and then you go away and then quite often you think, ‘Oh why didn’t I ask this or that?,’ you know. So it’s always good to go back and, and also she gave me loads of exercises to do and it’s good to go back and know that you’re doing them properly and that, see if there’s been any improvement or not, and just to have, that just felt like proper care, it felt like you know it was, it felt hopeful and encouraging and it felt like it was more of a two-way conversation than just me being told what I should do, or what’s gonna happen or something like that. 

Jane (spoken by an actor): It’s about humanisation. That’s what we need from healthcare professionals, you know, recognise that this is an intimate, dark, shaming space and it’s not our fault, you know it’s society’s fault, culture’s fault, and therefore cross that boundary, come in with us, you know, be in that space where, where women want to be talking about difficult stuff.

Voice over: Engaging with the healthcare system.

Leah: So for a start I work in the NHS so I’m in a lucky position where I can navigate, I know what to say, I know what to say to healthcare professionals to get the treatment that I need, and even I’ve struggled. I am good at research and on good days I can articulate myself well enough to be able to navigate through the system. And a lot of women can’t, you know.

Elly: So I had an appointment come through for an incontinence nurse. Now at this point, I wasn’t struggling with incontinence at all. So I went to the appointment.  I sat down and the lady was very much shocked, “why is this young lady is in front of me?” And when I saw my NHS gynaecologist a few weeks ago she said to me, “I wasn’t sure whether to keep the appointment.” Because she’d received all the letters about this MDT.  She said, “I’m not sure I’m the right person for you to see. I don’t know whether to refer you over to my urogynae person.” So I’ve obviously got to that point where I’ve got so much going on that they are thinking of referring me over to urogynaey but if urogynaecologists are the best people to see for prolapses, why aren’t people with prolapses straight away referred to urogynae.  Why do we have to just jump through two years of hoops of seeing gynaecologists who can’t, and it’s not, maybe it’s not everyone’s experience, who can’t grade a prolapse correctly to then be told, “Oh well maybe maybe now you’re being discussed in pelvic floor MDT. Maybe you do need urogynae. Maybe this is out of my realms.”

Janet: The people who I’ve found best have been the Women’s Health people in that there’s, they have local Women’s Health people who are good, but I was referred eventually to one of the, the well to the big teaching hospital and they have a whole kind of department devoted to women’s health and they’re absolutely fantastic. I mean you go in and it’s not about them telling you what to do. They take a full history, they explain all how it all works, they were we did diary exercises about bladder and bowel and all that kind of stuff and then had a proper discussion about what the various options might be. It was much more of a holistic approach, so it wasn’t just pelvic floor exercises, it was diet, it was exercise, it was the pelvic floor stuff and I felt that I was being listened to. I felt that my views were valued and that we were working together to try and seek the best solution we could so that that for me works really well. I don’t want to be just told what to do. I want somebody who’ll talk me through what the options are and what the implications are of the various things that, that we might try so that for me works really well.

Phyllis: I had every kind of test you could imagine, really invasive, unpleasant tests, you know, such as urodynamics. That’s horrifying. You fill your bladder with water, and you've got to hop up and down while somebody taps your nether regions to see if you’re leaking, [ergh] very pleasant.

Leah: I think one of the things that really is missing with any of the treatment that I’ve had actually is support mentally. So I tried to, so, so there isn’t any mental health provision as part of the package at the clinic, the clinic that I go to. And I am incredibly lucky that there is a clinic that I can access for this condition but it’s hugely underfunded, under-resourced and there is, they don’t, they don’t have a clinic-, a mental health input into it at all, and they should.

Rosie (spoken by an actor): I guess two reasons I think probably for quite a lot of women there’s that kind of embarrassment factor and I think, I think that’s probably the prime, prime reason and I guess secondly maybe the not sure where, like where to go or not wanting especially in the last couple of years not wanting to put additional pressure on health services and like I have to say if that had been my only symptom, I probably wouldn’t have gone back to the doctor.

Mehar: Another thing that’s quite difficult is because I have all these conditions, I have all these separate doctors and they have to, you know, figure a way around things together rather than separately but in private practice that’s quite hard because they don’t communicate with each other and I’m the middle, you know, point person and I have to go from one to the other to say, “This is what Doctor A did, this is what he wants,” and then Doctor B would say, “No but that’s not what I want,” and then back and forth, back and forth until someone comes, you know, to some sort of conclusion together. Yeah it’s quite, I don’t know, sometimes it’s just, sometimes I really think like ‘what if I just stop it all? What if I just stop my medicines and just sit there and don’t do anything, no doctors?’ you know, but obviously that’s not possible. I wouldn’t really have a quality of life, yeah, it is really difficult.

Voice over: Things that have brought people help and hope.

Sharon: I’ve let go because I know, I know it’s been quite insightful to see how my son has adapted when I have said, ‘I’m not strong enough for that today or just yet,’ and as I have gotten stronger I have been able to get closer to that that person I want to be and I might, I haven’t been able to feel able to get back to running or squash but I’ve been able to open, be open to different kinds of movement and, you know, I was never a yoga person before, I never went on walks before and I think that’s been really beneficial for my health and wellbeing. You know, I’m, I’m not gonna be fixed in the sense that I thought I was for when I was first diagnosed I was thinking, ‘I need to be fixed’ and now I’m thinking, ‘I’m not fixed but I feel healed and I feel whole again] but that’s’ that’s thanks to finding a more holistic approach which is pelvic health exercises, Kegels, movement the right kind of movement, strengthening the muscles around my pelvic floor knowing how to safely move and stand and lift things and squat, not being afraid when I get a cough or a cold, you know.

Alaina (spoken by an actor): What I found on the internet was a complete change in the narrative around what you could do if you had a prolapse. And challenging like just the conventional wisdom I think about what it means to have a prolapse. I wouldn’t be here today without that valuable support.

Fran: I think because she listened, she listened, and I think she listened and although I wouldn’t say anything that she did particularly was helpful for me other than she listened. She listened and she cared, and she could hear what you were going through and cared. I think that made a massive difference because it made me think that there are people that do care, you know.

Voice over: Thank you to all the people who took the time to participate in the interviews for this study. More information is available via the Healthtalk website. This catalyst film was made by a team of researchers at the University of Oxford, the University of Aberdeen and the Oxford University Hospitals NHS Foundation Trust. 

This study is funded by the National Institute for Health and Care Research Policy Research Programme (reference NIHR202450). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.