Urogynaecological conditions: prolapse, bladder and pelvic floor problems

So if you’ve noticed that you’ve got a pelvic floor problem and you’ve maybe tried some things at home, and had a little read and you feel like you need some help and support, the healthcare facilities that are available to patients in the UK are generally structured in the same way. So often the first port of call will be your primary care clinician, your GP. And they’ll often refer you to community support services. So they may give you some advice themselves, they may look at and exclude easily treatable things like infection. They may offer you a pessary, review your bladder diary, but often if that’s not easily fixing the pelvic floor problems you have, they’ll have access to physiotherapists in the community, or bladder and bowel services, which are very commonly found in most parts of the UK. It might be because of the way the funding works that you access those services within a hospital, or a regional care centre, or a community hub. We talked earlier about the importance of non-surgical and non-medical management and so I think it’s very rare or uncommon that you’ll see a uro-gynaecologist if you’re having your first presentation of the pelvic floor problems without negotiating through those services first. And I say negotiation because, for the vast majority of patients, those are the right types of services for them to see, and for the vast majority of patients they’ll get improvement and stop there. Sadly, for a small group of patients they’ll have physio, they’ll see community bladder and bowel services, they’ll see their GP and their problems are still affecting their quality of life. In that situation we’d encourage you to go back to your GP and say, “Look I’ve tried all these things that you’ve recommended, I’ve accessed all my resources, I’ve had a chat, and it’s still affecting me, it’s still impacting my quality of life.” Then the next person you’ll see will really depend on where you are in the country. So probably for the vast majority of patients you’ll see a general hospital specialist, and that might be a urologist, a urologist if it’s bladder mainly, it might be a gynaecologist if it’s prolapse with bladder symptoms associated with prolapse, and it might be a bowel specialist. They’ll often see you and offer the first line treatments, and if they don’t feel that your problems are easily managed within their area of expertise, they may refer you to what’s known as a tertiary centre. So all parts of the UK have big centres where they have more specialised clinicians that have access to complicated tools, tests and surgical medical treatments, that may not be available everywhere. And that’s a small proportion of patients that need that.

So I mean I went with a sort of list of things that I might do, like physio or, or pessaries or have an operation, cos I’d read up about it. And as I said, if, my GP’s nice cos he’ll, he sort of says, “Well, you know what do you want to do?” And I say, “Well you know, what’s on offer, what’s available?” And he will say, “Well you can, you know you can try this, or you can try that.” He very much wanted me not, I mean they try and avoid referring to the gynae, I think he, he feels they’ve got a good practice and they could probably deal with it within the practice. And if the pessaries had stayed in, then I probably wouldn’t have got as far as the gynae people, because I’d have been under their nurse and the GP. I probably wouldn’t have had the oestradiol. I think we discussed, I discussed that with him and he said, “Well do you think it would work?” And I said, “I don’t know, do you think it would work?” He said, “I’ve no idea, but I don’t expect so.” So, I said, “Well we’ll leave that one.” And it wasn’t until the physio recommended it that he prescribed that. But then he was quite happy to prescribe it. So yeah, it, as I say I probably did have a sort of agenda, but it wasn’t a very fixed one, quite happy if he’s sort of suggested something else.

I think it’s also, also something very big culturally, you know, where it really feels like a weakness to be ill and just, you know, I’ve just got a lot of shame about having such a constant seemingly mild problem that causes me so many problems. Yeah, because there’s definitely a lot of culture, you know, my family, things like that people think I haven’t seen a GP for thirty years or, you know, things like that and it’s very unhelpful that kind of, that kind of way of looking at our bodies I suppose. I think that that really has an effect on people who, where that’s just not their reality where they can go around as if they don’t have a body, you know, yeah. That definitely played into my relationship with my husband I think as a as a man who doesn’t have any health problems, I think he definitely has this where he just sort of thinks, ‘How can it be such a constant thing in your life?’ you know, I think he just doesn’t, doesn’t understand.

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. She actually said, “I don’t know why they’ve sent you to me. I can’t really do anything.” She also said she wasn’t allowed to examine me because it wasn’t in her realm of what she did so she did a bladder scan on me and she made me an appointment for another couple of weeks’ time, which I went to again. She said, if I was still struggling, she’d try and refer me on to the next lot of people. And I think I had a third appointment with her and then I decided this isn’t the right people to be seeing. So I went back to the GP and again, it was, “You’re very you’re very early to having given birth. Just give yourself time and see what happens.”
 
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 uro-gynae 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 uro-gynae but if uro-gynaecologists are the best people to see for prolapses, why aren’t people with prolapses straight away referred to uro-gynae. 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 uro-gynae. Maybe this is out of my realms.” Gynaecologists can do so many other things that surely the referral should be automatic to uro-gynae for prolapse issues because they are seemingly the only people who really do understand the full implication of the problem.

It seems to me that they just, there’s a standard path and everyone gets put on it. And possibly slightly regardless of how their symptoms differ. I mean, I think the massive issue is the, the testing because now, y'know, I’ve read a lot about it. I understand that the, the basic testing is so sub-standard that it’s missing an awful lot of cases. I think if, if the testing was improved then it’d be a lot easier, y'know, very, very early on to understand what the actual issue with it is. What’s happening, unfortunately, is that people are put on this sort of long pathway of tests. Now, I mean, for me, even privately this long pathway test took, y'know, eight months or something. If you were getting this done on the NHS, I imagine it could easily take years because there’ll be at least three months between an appointment and then you’ll have to wait till your next appointment, y'know. But if the testing was better and they actually realised that these women, a lot of these women still had an infection, what they really should be doing is just, y'know, early doors, hitting it hard and fast with the right antibiotics, probably none of this would be necessary. But by the time you’ve sort of delayed for y'know, eight months, a year, two years, whatever infection is there has got itself so established and rooted, it’s really hard to get rid of.
 
So I think, in a way the, the big problem is right at the very beginning. But then with fixation of y'know, having to put women, it’s almost like y'know, if you don’t submit to these tests, you’re not going to come out the other end and have the treatment that you actually need. But you could, you could’ve lost two years in that process and then, of course, y'know, then you might be facing years and years of treatment at the end whereas possibly, had you been given three months of a high dose antibiotic on day one because they knew that that’s what the issue was, probably would have come out of it, y'know. That’s what’s so frustrating. It, it feels like a tick box exercise like oh, this lady hasn’t had urodynamics, she must have that, y'know. Well, does she need it? I mean, if there’s a good reason, absolutely. But if there isn’t don’t just, it shouldn’t just be like a number’s game with putting every woman into, I say women, I know it is men as well, but it’s predominantly women. And through this set list, this set process, just because that’s what’s done, y'know.
 

So, I would, I would like to have more information and know what are the steps that you should be doing, right, and like so should I be going to my GP? Should I be just doing, talk, going to the nurses? Would it be appropriate just to talk to a nurse, for instance? Who can refer me? Do I need, it like, do I need to request a referral, or do you just happen to give me the referral? That’s the part I don’t know. Like do you request, or do they give you the referral? Also so, have a little bit more I don’t know, definitely have more information like it’s all up in the air, when it comes to these things do you just always at the mercy of whoever answer the phone, is how I feel.

So, I think I’m going to go to these, this gynaecology appointment and see what happens then. I’ve also been referred, it was really, I got a referral for my sciatica to a physiotherapist, well the GP told me to self-refer to a physiotherapist about my sciatica, and when I self-referred on the form, I said, “Can that physiotherapist bear in mind that I have a prolapse, and not give me exercises to do that will actually make my prolapse worse,” because that’s happened in the past as well. And so actually the person who phoned me up was a physiotherapist that deals with prolapses, she, she sees people, that’s her job is to see people with, you know with those kind of problems. Yeah, so I’m hoping that going back to that physiotherapist will help and I’ve, I’ve spoken to her, yeah, I’ve had an online, sorry a telephone meeting with her, but I’m going to see her in person at the end of this week. She doesn’t fit pessaries, huh, but I’m hoping that you know maybe there’s something that she can help me with, physio-wise, and maybe the gynaecologist will be able to help me pessary wise, but if neither of those things turn out well then I’ll have to try private.