Urogynaecological conditions: prolapse, bladder and pelvic floor problems

Sometimes consultants seem too busy, they’ve got, they’ve, I mean you can understand it, maybe they’re running late, they’ve running an hour late because they’ve been operating in the morning, it’s over run, they’ve had to do this, they’ve had to do that and they’re running late. And wouldn’t it be wonderful if time was just there, whatever but it’s not and I don’t know how you can change a system that at the moment is, well I think it’s running on empty, I think that people are always doing their best at that time and you are, and if they’re not they shouldn’t be there. But I think they’re doing their best under incredibly difficult circumstances and the health service has become a pawn in the political game and I think it’s really, really sad, really sad because it is full of a lot of incredible people and I’m sure the majority start out and they want to change the world, they want everything to be wonderful, they want to mend people and that doesn’t always work. And I think the mental side of that for so many healthcare people must be horrendous. I think if I had a limitless pot of money, healthcare would come very high up in my place of wanting to divert it.

I think the best one was literally this week seeing this particular lady. From the moment I was invited into her room she put me at ease. She wasn’t dissimilar age to me actually, probably only about eight years younger, so she talked in many ways all about she’s struggling with some symptoms that I’m struggling with. Listened to me, actually gave me longer than the time allotted, explained so many things to me and helped to write things down for me so I could take them home. Really listened to everything I had to say to her, was very well informed. Was very positive about the outcomes for me. When she did the internal, she sort of said, “There’s lots we can do there.” Was very caring in her approach and has followed it up very quickly since I was with her with three phone calls to get things going. So it was a combination of somebody that just had the time to listen. I didn’t feel I was rushed. I felt I could, I had a long list of questions that she was very keen to just answer very thoughtfully each one and she, I felt confident, and I’d done a bit of research, she was somebody that really knew the information.

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.

The nice one, the nice one was so pleasant, and I just felt relaxed with her and she was will-, she was willing, I mean I was in the same amount of time but I got such a different, she had care she was a really nice person and she gave me a waste, she says, “No I’ll get that, no just stay there, I’ll get that” and “No that’ll be fine. Have you got another appointment?” You know, the first time I saw her, she said “Have you got more appointments?” I said, “What do you think? I said, “No,” I said, “you’re the only person that, you’re the first person that’s kind of like been nice to me,” and I said, “Oh,” I said, “I’m just being, well-“ yeah the first time I’d I had seen her that’s when she said, she was the one that was saying, “Have you got more the appointments set up?” I said, “No,” I said, “No, anyhow, just seeing your colleague last time,” I said, “She was-,” I made a comment and she just, she smirked and said, “No comment.” So, I thought ‘Oh that’s really diplomatic’ and I kinda felt like it was bad of me, but I also wanted her to know that she was doing a good job for me, that she was being a good nurse and that I appreciated her nursing skill and yeah, she sticks in my mind, know her name. I’m really awful with names, I know her name, but she was lovely and I felt safe with her, and I felt listened to and I felt like she cared that she was gonna do, that she was gonna help me, I actually felt relieved and that something could be done and so there is, yeah I’d give her a gold star.

You know, I think that’s what, I think on the daily front of looking after people, I can’t complain about what they do but I think the one thing that sometimes is missing in the healthcare is, especially women’s healthcare, is the understanding and the time. I come back to that feeling like everything is fluff, like, ‘Ooh, let’s just be quick.’ Let’s go round the subject quickly because we don’t want to talk about women’s health and it’s just, it’s that time and that understanding of what somebody is going through and how that can actually impact their life. Like it’s a problem on a piece of paper and it’s a problem in a medical book but, when somebody is experiencing that problem, that’s real for them. It’s their lives it’s having an impact on every aspect of their life and, you know, it’s not a page in a book. It’s a person and that person needs to be heard and needs to feel like they’re being supported physically, emotionally, and I think that sometimes what’s missing a little bit.

It was a very difficult experience because his language and demeanour were in my view, quite inappropriate. He swore during, said the f-word a few times during the consultation and he made remarks about my anatomy which made me feel uncomfortable about if I had the surgery and I had another baby that my vagina would get smashed up, you know, really quite crass and like violent language about, you know, what would happen to me potentially and I felt like that could all have been explained a bit better and with a bit more empathy and I just left feeling quite shell-shocked after that experience so didn’t go back.
 
I think just the lack of professionalism to begin with, you know I mean I don’t mind the odd swear word, I mean I’m not like a prude, you know, I am not like conservative about these things like, you know, people swear that’s fine but I think in a healthcare professional when you’re seeing a patient who is potentially like feeling quite vulnerable, it’s just not appropriate to be saying the f-word, it’s just really not and I think that as well, you know, having some res-, I just didn’t feel really respected, like saying, like talking as though my body isn’t a part of me, you know, that it’s going to be smashed up. I mean it literally makes me cringe now, like just the thought, like just the words, you know, that you know, that’s me, that’s like not a thing like you’re talking about, like me, I’m, you know, and quite a sensitive part of my anatomy. So there just was a very distinct lack of empathy I think, understanding, like context of like what you’re doing, like what are you, like, you’re here talking to a woman who’s really going through something and, you know, how you’re explaining things, just yeah it was pretty, pretty appalling and it just made, like the experiences just made me completely disengage like from like the healthcare service as such.

In my first year I think like, well even till now you know to be honest, like sometimes I go to the GP and I am able to fully communicate what’s going on with me, but sometimes they use some words that I don’t understand, and I’m like, “Yeah, yeah.” But it’s part of like living in another country, you know, and there are words that you will never understand. And I mean I make my peace with that. But that has never, that has never been a barrier, like it’s there of course because they would say like I don’t know, I remember where, when I got pregnant it started because I got thrush, and the doctor says thrush, thrush, you know, it’s like I’ve no idea what she’s talking about. No idea until she prescribed the medicines and then I read what they were for. So that could be a challenge for sure. I think like if you say urinary infection, it’s easier to understand than thrush, thrush like, I remember even, I, asking my boyfriend can you listen please, I recording, and he was like, he didn’t know of course, so well I have no idea what this woman, of course I knew what was going on with me, but I couldn’t you know like, I couldn’t even translate because I didn’t know what, what was that. So I would say like that could be something but I wouldn’t tell you how to overcome it you know. Having maybe this type of appointments, like with a camera, maybe would it be easier, you know because you can put a software and you can have close captions and research what the person is saying in that moment, you know. That could be something maybe.

Yeah so I just, you know, the way that you can be treated can be very paternalistic and it actually frustrates me more when I feel like they’re not being paternalistic with me because I sometimes feel with primary care if you, if you reveal that you have really any level of knowledge of the situation, if you really, you know, even if you know the name of the antibiotics you want to be prescribed, they’ll say to you, “Oh are you are you medical, do you have a medical background?” and I see that as quite [sighs] you know, like quite a harmful idea, you know, I really feel like there’s this idea that this is a big barrier between any knowledge, you know, I understand, I can understand GPs have a negative impression of people using the internet, patients come to them saying, “Oh I think I’ve got XXX” or something but I really feel like they want, you know, to me I perceive that comment that I have all the time to be they want to have an explanation of why you want to have any real knowledge about your situation.
 
I say, “Well, no I don’t have a medical background.” I can just read and I’m obviously going to try and research this because, you know, the thing is I wouldn’t, you know, I think there’s a group of women who’ve been driven quite crazy by this, you know, they’re there’s qui-, there’s no explanation for what’s going on with them and so they’re very, very invested in this embedded infection idea and they feel really emotional about it and I can understand it but I think it’s probably quite negative that’s happened to them but that’s what’s going to happen if the received wisdom about what’s happening doesn’t make any sense. So I really feel like an acknowledgement of the uncertainty would be, would be helpful.

I think it starts in med school so only the curriculum for med school needs to be improved. The whole ‘listen out for horses and not zebras,’ has to be scratched up because I think there’s more the zebras out there now that are coming up and the medical world isn’t ready for us, they don’t know anything, they’re not trained in us. They’re not even taught our conditions. They don’t know anything, they just look at us just with blank faces and, you know, I actually spend a lot of appointments in there explaining my own conditions to them. Then they google things in front of me and they’re so fascinated and it just makes me sad that you spent ten years of your life in med school and residency, but you don’t know half of the things you should know.

Just open your eyes and open your ears and stop just doing like a ‘Computer says no’, you know, like. Just to, rather than just literally just following an algorithm and saying, “Okay, the tests say no,” just think, just look at the patient like-. I think it’s about respecting the patient as well because, you know, we know what symptoms we’re experiencing. We know what they feel like, we know if they felt exactly the same as a UTI in the past, so listen to us. We’re telling you that we think that we have a chronic urinary tract infection, don’t just dismiss us and say that we’re mad and that of course that can’t be the case. And it, it just baffles me. I cannot understand how medical professionals don’t want to learn and grow, and I get that they’ve spent how many years being told one thing and it’s difficult to unlearn something. We’re talking about people’s lives and the difference that they could make if they just listened to that woman in front of them saying that they think that they have got a UTI and how is it that their dipstick isn’t showing that they have.

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.

Well, I used to believe doctors. Doctors were obviously, you know, like I most probably imagine the majority of the public you sort of, your doctor as quite held in high esteem, you know. They’re very intelligent people. You know, they do a lot to get to where they are. I’ve got so much respect for anybody in the medical field. But, I also now know there are people in the medical field that actually don’t really care about people. And that is an awful way to live because you know, I, like I say, I have so much respect for anybody working in medicine. And it’s given me a clouded view of that, which I, I don’t like that I’ve got a clouded view. When I hear people sort of talking about oh, you know, this operation that operation, straight away, I’m thinking about what could go wrong. Do I believe what the doctors say? No. And that’s a horrible thing to believe. You go to your GP hoping that they’re gonna help you with whatever, you know, mental ailments or physical ailments, you’re hoping that they’re gonna help you and give you the best and sound advice. And now, I go in and come out and I don’t believe what they’ve told me.
 
And that’s, that’s debilitating because I come away more worried about what they’ve told me, ‘cos then I think well, you know, what if they’re just saying that or [inhales] yeah, it, it’s whereas before I would’ve believed everything they said. They are the GP, they know you know, you know, [laughs]. You used to go to the GP to get your passports and things like that signed because they’re such an honourable person. And you know, across the board and it’s just a horrible to then know you’ve got to go and see somebody because you’ve got an ailment and go without having that confidence that’s person has got your best interests and that’s, I don't know, that’s just how I feel now. I worry about every little bit. If it’s medical and I need medical advice, I worry so much before going that is this person actually going to be you know, worried about how I react to something rather than, you know, not having my best interests at heart and seeing me just as a number rather than an actual person.

You try to offer a little bit of information about your condition, and they really don’t want to know. And I, I feel half the time that because we’re women we’re dismissed. And of course, if you’re a man and you’re suffering, it’s a well-known fact men don’t like complaining, so they probably won’t tell the doctor a lot of the conditions that they get. Whereas I think women probably are a little more open if they’re suffering from something, they’re gonna say something. So I really don’t feel that we are being listened to.

Yeah so obviously first and foremost is listening to the patient, not dismissing them, not gaslighting the patient. I know that even, I’ve had experiences where I’ve had my diagnosis from my private doctors done and they’ve had an incident in A&E or with my old GP or something and having, I have this on paper that I’ve had these diagnoses and conditions and I’ve got these medications and still one of the doctors said to me, “No these aren’t real, this isn’t a real diagnosis, there’s nothing,” and that really shocked me because, you know, you can’t just go around gaslighting patients especially when they have the conditions and they have the doctors and they have the medication. So, I think it’s just really, really important for doctors to understand that that just because they don’t know what it is or they don’t understand it doesn’t mean that everyone else is wrong about it.
 
It’s also important, I don’t know, actually the way sometimes doctors talk to a patient can be quite rude and I feel like when you’re going through all these things, you know, you have all these symptoms or conditions and you just, you don’t know what to do, you know, you’re in pain and things just aren’t going right, it’s just doctors need to empathise and listen instead of just being rude about it and just laughing and things so that’s, you know, I think it all just comes down to a communication, how to, how to effectively communicate.