Cynthia

Age at interview: 45

Brief Outline:

Cynthia has multiple pelvic organ prolapse as a consequence of injuries sustained during childbirth. She now manages this with a vaginal pessary.

Background:

Cynthia is a medical consultant and is married with two children in primary school. She describes herself as part of a mixed race family.

Condition: pelvic organ prolapse

More about me...

Cynthia felt that something was ‘not right’ after the birth of her first child and described this as like she was “sitting on a watermelon” by the time she was pregnant with her second child. Looking back on the experience, she does not feel that clinicians were really listening to her concerns. After the birth of her second child, Cynthia went to the GP who diagnosed a prolapse and immediately fitted a vaginal pessary. This brought quick and welcome relief. Cynthia was referred to gynaecology which she describes as a “very uncomfortable ...undignified process”. At this time, she was living with the challenges of looking after a young child and a baby and maintaining her working life. Cynthia described feeling “quite brutalised” by an encounter with a senior clinician who was dismissive and unkind. As a healthcare professional, she did not feel inclined to complain and “just closed a lid on the box”. Although Cynthia feels really lucky to have had access to life-saving health care for her and her babies through the NHS, this makes it even more difficult for her to reconcile this experience of very bad care.

Since this difficult encounter, Cynthia has received good and kind care from a dedicated team of urogynaecology nurses who have treated her with compassion, and she feels like she is “in the driving seat” regarding her treatment options. Her symptoms are under control and she says that she would need a very compelling reason to have surgery. However, this recent compassionate care has not removed the effects of the earlier encounter, or her concerns about using healthcare in the future.

Cynthia says she has been made to feel ashamed and responsible for her condition and taking part in this study was the first time that she had shared this experience with anyone. She feels that talking about genital areas is taboo, and that this silence can sometimes lead to problems that could otherwise be avoided. Cynthia sympathises deeply with older women living with urogynaecological conditions who might not want ask friends, family or health and social care workers to help. She would like healthcare professionals to put themselves in the shoes of their patients and realise the long-term impact of their actions.

Cynthia’s sense of self has changed as she’s become more inactive and aware of her body’s vulnerability.

I was always very kind of fit, active, didn’t have any medical problems. And so I think my perception of myself has changed, really. And I suppose just kind of being. I mean, it’s interesting as well isn’t it cos post-partum you have that in a way you sort of have this like realisation of your own mortality just going through that experience. And then, y'know, suddenly from being kind of fit and well to being anaemic and on painkillers and on laxatives and, you know, just like suddenly this stack of medication and that, I think that does have an impact on the way you view yourself. And I mean, yeah, after the first baby being discharged home, I was having to go up the stairs on my hands and knees and I just remember thinking, I’d like gone from being, y'know really well in my early 30s to sort of being completely unable to even walk up the stairs. And that, that’s like the acute aftermath of childbirth. But I, it did, that went on for quite a long time and yeah, part of me again just having insomniac baby. But then I do think sort of having to go to these clinics and sort of feeling like I’ve got a chronic condition. ‘Cos, yeah, it does change my self-perception definitely, yeah.

 

Being told by a doctor that it was “all disgusting down there” contributed to Cynthia feeling like she didn’t want any intimacy, and she still feels that way.

Yeah, I mean, I guess in terms of intimacy I think it probably has had a really significant effect. I mean again, it’s difficult isn’t it to sort of disentangle like so many things that go on when you have small children, y'know, sex life is not necessarily easy or desirable when you’re exhausted and juggling small kids and busy at work and but I definitely think those early kind of contacts with the gynae team where they said it was all disgusting down there, sort of make, has really, has like had a psychological effect on me in that way like I just don’t feel at all don’t know again I kind of almost just don’t want to think about it. I sort of just switched off my desire for anyone to you know, look at me, touch me or anything and yeah, it’s very difficult to know how much of that is my, this specific set of experiences, but I think quite a lot of it probably is. And I don’t, I wouldn’t say that I’ve recovered in that sense like I still feel like that.

 

At first, Cynthia’s prolapse symptoms were a lower priority as she focused on looking after a new baby. She then started to feel she should accept her situation as time went on.

I was just overwhelmed by that, the kind of more immediate needs of kind of coping with that situation. And I think, you know, both really sleep deprived. My husband went back to work at, you know, two weeks later standard paternity leave. And I was then kind of struggling, you know, I was still kind of struggling to be able to walk. Struggling to breast feed, not getting any sleep. And so, actually, you know, some sort of complaints about the obstetric service or philosophising about my genital tract injuries, I suppose just didn’t seem like the top of the list [laughs]. And then as time goes on, you’re just like well I’m just living with this and how much does kind of bringing it up and talking about it really help or move us on?

Cynthia struggled to feel like her usual active self when taking a lot of medications.

I think like I was always very kind of fit, active, didn’t have any medical problems. And so I think my perception of myself has changed, really. And I suppose just kind of being. I mean, it’s interesting as well isn’t it ‘cos post-partum you have that in a way you sort of have this like realisation of your own mortality just going through that experience. And then, y'know, suddenly from being kind of fit and well to being anaemic and on painkillers and on laxatives and, you know, just like suddenly this stack of medication and that, I think that does have an impact on the way you view yourself.

 

Cynthia has a ring pessary which was fitted by her GP which works well for her

And took myself off to the GP who kind of had a quick look and said, “Oh gosh, yeah, you’ve got a significant prolapse.” And she was great. She just, she was very straightforward about it. She said, ‘That’s the issue.’ So, I knew what it was right away. She put in a ring pessary and that was such a relief actually because it kind of sorted out symptoms immediately.
 
If I don’t have a ring pessary in then, I would just go back to my description that feels like I’m sitting on a watermelon. I mean it just feels like everything’s kind of falling out underneath. But I would say having a ring pessary in completely controls any kind of feeling most of the time there’s anything abnormal down there, like I’m not aware of the ring. I’m not aware of any sense of prolapse at all. And I just know that how to manage my bladder and bowels and that’s fine. That’s just now kind of habit. So, on a day-to-day basis, I really wouldn't say it bothers me that much. I suppose the other thing that’s changed is a bit of discharge, so having a ring pessary in, I get more vaginal discharge than I think would be normal. So, I just wear an everyday pad.
 

 

Cynthia hasn’t felt emotionally ready to consider surgery prolapse and, although she feels a bit “in limbo”, things are manageable right now.

So, I think, initially, as I said because I kind of was harbouring this decision or I was sort of still incubating the decision around whether I was going to have another baby. That gave me a very easy way not to have to make a decision because it was clear that if I was going to have surgery, it should only be after I’d completed my family. So, there wouldn’t have been any point doing an operation and then having another baby, because then I would have just undone the operation. So, I would say actually probably had a three-year period where I could just put the whole thing on ice and just think, well, I’ve still got this kind of potentially, potential idea that I’m going to have another child and so, I just don’t have to make a decision at all. And that suited me quite well, because I don’t think I was in a good place to make a decision anyway. So, I just had a kind of holding thing of like well, maybe I’ll have another baby, in fact maybe I even left that option open to myself as just a get-out clause from not having to have this operation. And then I think by the time that, by the time I’d sort of come to the clarity in my mind that we weren’t going to have another baby, by then I was like, well actually you know what, this is fine. I can, I, why would I have an operation when actually day to day this is completely fine and I’m not aware of it most of the time and it doesn’t cause me adverse symptoms most of the time. It’s a hassle twice a year, because I have to go and get a pessary changed. Have to wear a pad in my pants I guess, but I just totally got used to that like I just don’t even think twice about it.

 

Cynthia, who has multiple prolapses following childbirth, had felt “rebuked”, “chastised” and “reprimanded” by healthcare professionals, which has made her feel ashamed.

I just suppose we, as a society, we sort of have such a kind of privacy but in a way, it’s sort of more than privacy, it’s almost shame around something that’s associated with your genital tract or reproductive organs and I don’t know if that’s specific to being female. I think it might be a bit worse for women than it is for men. But I expect men suffer that as well. Y'know, anything affecting your genital tract is kind of a bit of a taboo topic. For me, it was definite like the whole, the whole kind of difficulty around talking around it was definitely that I’d been made to feel ashamed and responsible. I mean that was really actively portrayed to me. And someone examining me and saying it was disgusting is, I mean, I kind of can’t really believe that a colleague and a consultant would talk to any patient like that. But we’d, we’d yeah. And so I think I, y'know, I was very much left feeling like that was the case. And I’m sure that sort of still has an influence on how I see myself and how I think about sex and how I think about whether I would go forward with an operation and how I think about whether I would talk to anyone else about it. I feel like, y'know, for him it was just a flippant comment wasn’t it like one word that he said and it’s kind of had that really profound influence on me. But I think then, y'know, I’ve just been sort of chastised by people all the way along for the fact that I had bleeding complications, for wanting my catheter to be taken out, for taking my own analgesia when I shouldn’t have, but y'know it’s like a almost a string of things where I feel that I’ve been sort of rebuked and reprimanded by healthcare workers and so that sort of adds up to feeling ashamed about something and that, y'know I’m in the wrong in some way as well.

 

Cynthia describes her experiences of a gynaecologist who used the word “disgusting” when examining her. After a series of bad encounters with healthcare professionals about her prolapse she received ‘compassionate care’

And then, subsequently I saw a gynaecologist who kind of examined me and looked at the pessary that was already in. And then just said, ‘Well this is a disgusting sight’ or something. He used the word, disgusting, having examined me, he was also very dismissive, so professionally we were colleagues and he asked me what my speciality was, and I told him and he said, “I’ve never even heard of that, basically.” He sort of dismissed the fact that I was a professional colleague. I was also due at the time of that encounter, I was due for a smear, just a routine smear. And a registrar whom I’d seen previously had suggested that I might as well have a smear done at the same time as having my pessary replaced and having that gynae appointment. And so, I said that to the consultant and he said, “We are not a smear taking service and I’ve never heard such a suggestion.” And he, then he basically stormed out of the room. He just left the room. And I had no idea if he was coming back.
 
I had those kind of series of kind of bad encounters. But then, again, I suppose the Urogynae service is set up to be doing just that, so you don’t feel like you’re kind of a nuisance or that it’s your fault for being there. And they’ve, I mean, I’ve, I have to say that I think I’ve used the word a few times. I think they’ve just been kind to me. They’ve just treated me with some compassion and kind of again it’s not, like I don’t want a lot of sympathy, actually. I want it to be business-like, but it’s kind and business-like and so it’s kind of just compassionate patient care, I think.