Urogynaecological conditions: prolapse, bladder and pelvic floor problems

Well I’ve not, I’ve not had any, this is the reality that in the four years, I didn’t get offered by my doctor to be referred to any hospital. They said it wasn’t severe enough and another friend has said the waiting list to get in is over a year to get any sort of test for the referral for stress and urge incontinence, it’s so common with women and the NHS has offered me to go back to the pelvic floor lady but she says it’s an over six month waiting list to get to see that nurse again and so it’s only through the private health now that they’ve phoned me and I’m having urodynamic tests done in three weeks’ time. I’m seeing the private pelvic floor lady in two weeks’ time and this is what I’ve been waiting for somebody actually to do some tests to see how severe it is, what they can do. The consultant mentioned a whole list of lots of things they can do apart from major surgery includes, including Botox injections at the neck of the bladder and so it’s, it’s given me lots of sort of positive feeling that ‘Yes, I’m gonna, I’m gonna try and do my best to sort this out without major surgery and try all these different avenues first and hopefully I won’t need surgery.’

Sometimes doctors will look at you and say, “Oh there’s nothing actually wrong with you, you can just be on your way.” Even after all the diagnoses you have and then there’s some who just say, you know, “I don’t wanna deal with this, you’re too complicated.” I’ve actually had doctors, NHS doctors say that to me, they’re like, “It’s too complicated, I’m not dealing with it.” So, I don’t know if that’s just NHS and private or a general thing like I don’t know what’s that about but yeah like I also have noticed that then relating to that, they’re not willing to go above and beyond, they’re not willing to look into things. Like I went to this gastro doctor and she was really dismissive, like I went to her after my private doctor said, like he doesn’t specialise in gastro but he pointed that, you know, this and this might be the issue and you need to get a gastro to check and so I went to the NHS and I got an appointment and I said this and this is what my consultants think, “Can we test?” and she just laughed at me, she just, “Nope, other people have this problem and I don’t wanna test for it.” I was just like “Oh okay,” then I went back to my private, and he goes, “No we’re running these tests because that’s wrong because your symptoms aren’t normal,” you know, I don’t know. I feel it does come down to lack of funding because they can afford to do these things and the NHS can’t afford to run tests. They also can’t, they don’t test for a lot of things. They give a blood to a pri-, if you go to your GP and say, “I need a blood test because I have these symptoms,” NHS blood tests are quite basic compared to private blood tests, sorry, private will look into everything deeply where the NHS doesn’t, they don’t look into anything and that’s also what causes a delay in diagnosis because they don’t have the resources. Some aren’t, some willing to do it and then because they don’t find anything their initial report it’s like, “Oh well you can go away now.”
 
Mm and do you think that it that it comes down to finance and resource?
 
Yeah definitely, definitely if the NHS had more money, I do believe they would do more than they’re currently doing. 
 
So, I don’t think it’s entirely the NHS’s fault. I think the main problem is that they’re underfunded, you know, they don’t have money like private practice does to throw around on tests and things, they have to be really careful on what test they do, on what person and how much it costs and is it worth it? I think they really have to sit there and think. Whereas, private practice, you have a problem and they’ll be like, “Oh we can do this test easily,” because they can afford to do it. Whereas because the NHS is one big, obviously one big bubble of and there’s so much going on in there, one doctor can’t sit there and say, “I’m gonna do the test” because he doesn’t have the power to do that. It depends on the hospital, it depends on funding, it depends on other, if there’s other patients who need it more and things and private practice, if I go to one doctor and say, “Let’s do this test?” They’ll be like, “Okay, come tomorrow and we can do it.” 

I had a really bad experience with one GP. You know, I mean, I was desperately upset over the phone ‘cos I was still in y'know a lot of discomfort, you know really not kind of getting out of bed a lot of days. 
 
So I kind of got a bit fed up with being told that they weren’t gonna do any more for me and of course, it was in the beginning of the pandemic, so I mean the chances of being seen by anyone else were really slim. But at that point, I had some health insurance, so I went privately to see a urogynae but to be honest it wasn’t much better. I got put through every single test. 
 
I had cystoscopies. I had internal and external scans. I had MRIs. I had urodynamics. I had, you know, they tried to give me drugs for overactive bladder, which I don’t have. They gave me like bladder installations which did absolutely nothing. But you know, the response was well, you can’t have an infection ‘cos you had quite a few antibiotics, so it must have gone, no like actual ability to test anything further. And although it was private, it was the consultants that are with the NHS ones. So, it was the same protocol, you know, that they were following. 
 
So, very dismissive and it, it felt like they were just rolling out different, y'know, just to try just to see what happened without necessarily any real logic to it

I think we’re fortunate in that we’re well off and that I am able to go out and do these things. I think if we’d been, if I was [sigh]…if I was on a much lower income, if I was on the minimum wage, if I was on Universal Credit, if I was on any of those things, there would be no spare money and I would be sitting here with this thing going on in my body that I might be able to, I might have a phone that lets me access the internet, I might have enough data to get on, on the internet and have a look at stuff but actually I probably wouldn’t, I would be dependent on my absolutely rubbish GP giving me support and advice and waiting, still waiting for that referral to the hospital. 11 months and in that time because I don’t know what I’m doing, things would have got much worse and I would be a lot more miserable than I am, you know, it’s, it’s not right really.