Urogynaecological conditions: prolapse, bladder and pelvic floor problems

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.
 
The, the poorer examples are the people who just said to me, almost pat you on the head and say, “This is the best thing for you dear, so we’ll just do it,” and that was, that for me and I know for other people that’s best, that that’s just what they want, they want just to be told and it’ll be fine, that for me really doesn’t work so they were the kind of examples.

So my doctor has kind of stuck her neck out and said, “Okay let’s do this,” because normally with antibiotics it’s very hard for them to get them authorised because it’s, you know, the whole thing with antibiotics but she said “We’re not going to do quite as much as she said” because she said, “That’s an awful lot of antibiotics,” she said, “that will impact on your body.” I said, “I know, I know.” So she said, “We’re going to do it slightly less,” then she said, “rather than every five days we’re going to say once a week, you can have your Monuril and we’ll do the Hiprex and we’ll just review this monthly” so we’re on the second month with that. So that’s one thing, so this is where private menopause urogynae has crossed with NHS and because I’ve got a lovely doctor, she’s stuck her neck out. Probably most GPs, NHS GPs would not do 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.

And the gynaecologist did an examination and said that there was a lot of laxity and we could sort this out with a small operation and I sort of burst into tears, and said that I really didn’t want an operation and isn’t there anything else, you know, that I could do. And he was a little bit [pause] I just felt that he thought I was being, just being a bit silly really, but he’s sort of said, “Well I’ll refer you to the physiotherapist and go and see her and you know see what she says, and then come back in a few months, and you know maybe you’ll have changed your mind.”

I personally would like to have a vaginal repair, anterior/posterior, so I’d like to have the cystocele repaired and the rectocele repaired, which isn’t a decision I’ve taken lightly. I understand that there’s a lot of risks that come with it and there’s a lot of risks that it can fail but there are risks and there are chances that it’s not going to. But I feel like if you make the right lifestyle choices after you’ve had the surgery, then, if it gives me ten years while my children are younger of feeling more comfortable and I don’t feel so fed up all the time, maybe that will just make life a lot rosier, even though I am aware that in the future, I may need to have surgery again.

But, you know, that I was quite young so being more conservative was like better because there’s like, he said, “There’s like a thirty percent failure chance with the surgery.” I mean to me that is like, that’s high, so I’m like thirty percent is, I’m, you know, I don’t really want it and then it only lasts something like ten years as well so I mean I’m thirty-nine, so that’s another surgery at like forty-nine and, then I’m like, you know, if not sooner if it fails, so it just didn’t feel like it’s an option but then I’ve seen women say that they’ve managed to correct their prolapse without surgery, you know, through doing like pelvic floor, by doing pelvic floor Pilates and things like that, like really working on their core they’ve actually managed to reduce it. So, then I kind of think, ‘Well what is right?’ You’ve got women who are saying like on these forums, “Oh I’ve actually reduced my prolapse non-surgically,” and then you’ve got, I’ve got the physio and the consultant saying like, you know, “That is impossible, like surgery is your only option to like actually correct the prolapse”.

And I would turn ‘round to him and I would say, “Well what do you recommend,” and it really annoys me when they say it’s up to me to decide. Because this happened when I had my first melanoma, and they rang me back and said, “Oh,” that, that they wanted to see me again and I was speaking to the doctor and, and oh, I finally went to see, and I thought well what do they say? Because, “Well I don’t know, you could have another—you could have more removed or you could leave it to see what happens,” and I went to see my consultant who had come back from wherever he was, and I said to him, “Well what do you think?” And he said, “Well let’s put it like this, there’s 75% chance it won’t come back, 25% percent chance it will, you won’t know whether you’re in the 25% percent until it happens.” So, I said, “What would you do?” He said, “Well I’d go for the 25%.” So, I said, “Okay, you know, let’s do it.” So, you need-, we need-, you need to be guided and told a little bit, but it’s-, specialists shouldn’t leave it up to you to decide.

You know in that, he said no, we can stitch up your vagina, and I went well, “No.” Not, it’s kind of, it’s taking away your womanhood isn’t it? It’s just, no. And I think it would just cope, but if they get some of these gadgets that, and I wouldn’t want one that had to come out every night and do that, that’s too much, just something to stop me peeing and, and make sure. I’ve always got in the back of my mind that when, when they, your bladder is hanging down can you damage it? You know when you’re wiping yourself can you, nobody, nothing has said can it, can you damage it, because obviously it’s tissue, it’s an organ, and it, this, so I wonder. Because I did, went, I have photographed myself on [laughs]. And I thought I’ve got to see what this thing looks like, so there’s, there’s that wondering can, can you damage yourself? So I would like, some sort of gadget that would, or something that would work.
 

He discussed two different types. Went into detail and sort of threw me a bit and I just thought well, whatever he thinks will help me most. You know, you rely on the best decision making of your practitioner really so that’s what, you know what I went, you know, just what I went with. Because especially when it all gets a bit beyond you, I mean was he trying to blind me with science perhaps, you know, I thought in hindsight and at that point this was just my perception, you know, of course, all of this is my perception, he might have a different perception a little but I just felt I’d overstayed my welcome in there, I had, I’d had a longer than normal consultation but this is more out of frustration because it had taken so long, so many months to get it and that I didn’t want to leave without something at least and so being offered a medication was getting me out of the door.
 

I think some sort of self-referral to physio. I don’t need to see a surgeon at this point. I’m happy to wait for surgery. I don’t even know if I want surgery but self-referral to a specialist women’s physio who’s got the expertise to help me with the pessaries, to tell me whether or not I need the oestrogen cream, you know, just - and they’re such low level things. Surgery’s a huge expensive thing. I don’t understand why the NHS isn’t prioritising first level care really, I really can’t get my head round it and I think I should have had access to that within six weeks really as a minimum and it shouldn’t be, I can self-refer if I have a knee for a foot problem, for a wrist problem, for a hand problem, I can go and I can be seen within two weeks. Why can’t I self-refer for a prolapse? It just doesn’t make sense to me, but they won’t take the referral.

It’s a fairly new procedure and I don’t think I, that was explained to me particularly carefully, and I think because we were in the middle of the Covid pandemic, and, and I was, I had been so poorly for so long I was just desperate to feel better and was willing to try anything. But actually, I think I should have asked some different questions about it. I should have asked how many times the consultant had done it. I should have asked more about the sort of evidence of you know how receptive it was, you know what sort of trials had been done, clinical trials, and I didn’t really ask any of those things because things were, consultations were being done remotely, and over the phone, and I didn’t find it very easy to ask questions. And looking back now I wished I hadn’t had it done.

And I think now when I, when I look back at the letter I think he had said to me as well, when I’ve looked at the letter as well in the past that, that if it carried on happening, if I-, to do that five times and then for it, if it then carried on after that then I should go back to him but he hoped that it would settle. And I think I was at a stage of my life where I was like ‘Oh well it’s working,’ and so I kept-, you know, I would, I had sex and then it’d work and then I got into a long, a kind of a long-term relationship and it seemed okay. I would have sex, I’d take the tablet and I thought ‘Okay well there’s no, it’s working for me, there’s no reason for me to do anything differently, I don’t need to go back’. And I had in my head, I thought, ‘Okay well once I’d been with this partner for a while it will settle down and I won’t get them anymore.’
 
So, I sort of self-medicated looking back on it which is a regret I think really but at the time I never even knew that chronic UTI existed, so I never knew that it was possible for something to turn from a recurrent UTI to chronic UTI. And I suppose, I don’t know if it would have been managed any differently if I’d have gone back at the time because I’m not sure whether he would have been able to manage the condition differently or prescribe what I needed on the NHS at that point. And I don’t like to beat myself up about it, but yeah I think it probably was a mistake to just carry on using the medication in that way but I was just so happy it was enabling me to have sex without getting the UTIs that I just carried on with it at the time.
 

I know I could feel inside that there was like stitches that had been there once and then again it was the same thing the second time and the, it was the registrar who did it the second time when I didn’t have any pain and he, he just said to me “If this doesn’t work we have other options.” Well it didn’t work after six months and I decided I would live with it because I just manage it, I manage my symptoms now and I manage them very well. And I don’t feel inclined to go and have another repair or anything at this stage in my life.