Sue Y
Sue Y has pelvic organ prolapse which is very well managed by regular oestrogen pessaries. She also has stress incontinence which has been made worse recently by a persistent cough that is under investigation.
Sue Y is a retired nurse who lives with her husband. She had two grown up children and describes herself as White British.
Conditions: pelvic organ prolapse, stress urinary incontinence
More about me...
Sue Y has had stress incontinence for many years, since the birth of two large babies. She noticed that this got worse around the time of her menopause. More recently, Sue Y also noticed that she had a pelvic organ prolapse. She persevered with different ring pessaries but found that these were painful. Sue Y was therefore referred to a consultant who prescribed oestrogen pessaries which “did the trick”. She now hardly feels the prolapse and says that she can live with her symptoms. Sue Y wishes that she had been prescribed the oestrogen pessaries much earlier as it would have avoided months of discomfort.
Recently Sue Y has suffered with a persistent cough that has had a significant impact on her urinary leakage. She describes how she has to be careful not to laugh too much or she will leak. For now, she has to wear much thicker pads and think carefully about having access to a toilet. Sue Y also has Fibromyalgia which causes body pain and stiffness, and this has an impact on how she feels. Sue Y sometimes feels dismissed by healthcare professionals who tend to focus on her body parts rather than her as a person. She would like the health professionals to listen and to include patients in decision making.
Although her prolapse and incontinence upset her a lot in the past, Sue Y now feels that she had got used to them. She feels lucky that her symptoms are not as bad as other people’s. Sue Y was recently surprised to find out from social media that very young women also get prolapse and incontinence. She strongly feels that the public should be more aware of this. Sue Y feels that there is a stigma about prolapse and urinary incontinence which means that everyone keeps quiet about it. Her advice is not to suffer in silence but to seek help.
Sue Y’s first appointment with a GP left her feeling that there wasn’t much that could or would be done about her prolapse and urinary incontinence.
Sue Y’s first appointment with a GP left her feeling that there wasn’t much that could or would be done about her prolapse and urinary incontinence.
I don’t know whether GPs are not particularly interested and they just think, oh, you know it’s, it’s another old woman with a prolapse [exhales]. I mean, I might be entirely wrong about that. But I don’t know, I just felt almost as though I was being a little bit dismissed. ‘Oh, you know, it doesn’t look too bad, you know, you’ll be alright’ was the sort of attitude. So I sort of came away thinking ‘Oh well I, I probably will be alright’, you know. But though, of course, it wasn’t until the symptoms carried on that I thought ‘Well, actually, no, I’m not alright.’
Sue Y’s GP told her she had prolapse, but it came as a surprise when a urogynaecologist confirmed multiple types: a cystourethrocele (combined urethra and bladder prolapse into the vagina) and rectocele (rectum prolapse into the vagina).
Sue Y’s GP told her she had prolapse, but it came as a surprise when a urogynaecologist confirmed multiple types: a cystourethrocele (combined urethra and bladder prolapse into the vagina) and rectocele (rectum prolapse into the vagina).
Well, I think because the GP when I first went to the GP she said, “Oh, it’s just a little, it’s just a little prolapse. No need to worry about it.” She didn’t say that I’d got both. So, y'know, as I say, I went away and thought oh well, y'know this is nothing, really. And when it and when the consultant told me that I’d got both then yes I was little surprised A) that the GP hadn’t specifically told me. And B) that I didn’t think I’d got both. I thought it was just more the urethrocele I’d got. So, yeah, so I was, I was a bit surprised and I suppose a bit upset. ‘Cos as I say, I don’t think of myself as an old person [laughs]. Even though I now know that it happens to lots of younger people.
Sue Y feels too young to wear pads but has to wear them to prevent leaks.
Sue Y feels too young to wear pads but has to wear them to prevent leaks.
Well when it got really bad when I was peri-menopausal, that was probably the first time I’d started having to wear pads, which obviously I found at, you know, I was only, I don't know, mid 40s I think at the time which obviously I found not particularly nice. I didn’t, y'know, I didn’t think at mid-40s I should have to be walking around wearing pads, but there you go, I did. But giving up the caffeine and, and all of the various things I adopted did help [exhales]. I can’t do exercises where I jump. So, for instance, going on the trampoline is definitely a no, no. Star jumps are definitely a no, no. ‘Cos I’m quite sort of fit generally. I up until Covid, I used to go to the gym twice a week and I cycle and walk and all that sort of thing. So, walking it can sometimes be a problem because unless I’ve been to the toilet just before I’ve walked then I can get leakage when I’m walking. So, that’s, that’s a bit of a nuisance. Like yesterday, we were out on the beach and I had to nip up to the not very nice loo several times. So, yes, obviously, it has an impact every day. But not for some people. I know some people, people are much worse. So, y'know I do thank goodness it’s not as bad as it could be. But yes, it impacts on daily life, definitely.
Sue Y worries that the health system focuses on body parts and not on people and thinks it’s important for healthcare professionals to learn about communication and relationships.
Sue Y worries that the health system focuses on body parts and not on people and thinks it’s important for healthcare professionals to learn about communication and relationships.
I have to say, I do feel that the health system now concentrates on body parts, not people, sadly.
Can you say, can you talk to me for a bit more about that and what your, from your own experience? Cos I think that’s, I think it’s a really, really important point.
Well I think at one time, y'know, back in the day when you went to the doctor, they knew your family history. They knew your history. They knew you. And even if you didn’t see the same doctor every time, they still pretty much knew who you were and what you were about and what’s happened in your life. And then I think, as the GPs got less and less and they knew about you less and less, so now, when you see a doctor that is when now when you go into a surgery they ask, they say, y'know, what’s the matter? And you tell them what’s the matter and they deal specifically with that thing. That’s all they deal with apart from tick boxing whether you smoke or not. So, they don’t, they don’t seem to have any interest on whether this condition is affecting you as a person or the rest of your body. And they spend most of their time looking at the screen and not at you, which I find very disconcerting because certainly when I was, I was a nurse I used to talk to people. I didn’t talk to the computer. So, I think computers have got a lot, lot to answer for. Not that I’m a luddite because I do have all the technology myself, but I don’t know, whether, whether they don’t teach them anymore in medical school about interpersonal relationships or what. But yes, I, every time I’ve had any problems recently it’s always been the part of the body. It’s not been you. Y'know, how are you, how is, what’s happening to you affected you. Is anything else happening, y'know. It’s just basically they want you in and out, I think. So, I think, yeah, I think medical, medicine has become depersonalised, definitely.
Sue Y felt embarrassed to tell other people about her prolapse because they may associate it with her getting old. She doesn’t think this is fair, and wants to get out and “spread the word”.
Sue Y felt embarrassed to tell other people about her prolapse because they may associate it with her getting old. She doesn’t think this is fair, and wants to get out and “spread the word”.
And I think, I think the big thing about it is we don’t talk about it. Y'know, I think I’ve only told one of my closest friends, apart from my family. And I think, I don't know, I think, I think we’re all a bit embarrassed about telling people you’ve got something like that. I don’t think stress incontinence is quite so bad. Although I don’t think people talk about that as much, either. But I think there’s not a stigma exactly, but it’s it makes it, makes you look as though you are or getting old and you’re getting old person’s problems.
Embarrassment, I think. And I’m not, I’m not a person who gets easily embarrassed. So, I was really quite surprised to find myself not talking about it. I can’t, I don’t know what it is it’s, I think it’s a mixture of an embarrassment and feeling that people might think about you differently. And I know that’s silly because I’m sure they don’t. Perhaps if I talked about it more then, more people would talk to me that maybe they’ve got it and haven’t managed to talk about it. So, perhaps I ought to be an advocate and go out and spread the word, but I’m still a bit reluctant [laughs]. I don't know.
Sue Y found her physiotherapist to be “brilliant” and was relieved to get the information she needed.
Sue Y found her physiotherapist to be “brilliant” and was relieved to get the information she needed.
I went to see the physio and as I say, she was superb. And she helped me with the stress incontinence, ‘cos at the time I saw her, I’d got this awful cough and the stress incontinence was really bad again. She really helped with the exercises when one wasn’t working because when I started doing the pelvic floor exercises, it was making the prolapse feel worse. It was making it feel more uncomfortable. So, she adapted the exercises for me so that, the ones I did were more abdominal exercises because the pelvic ones were hurting me and she was brilliant, I have to say. But that is the first time I think in the, in the entire journey as you call it that I had seen anybody about it at all or been given any advice about it at all.