Urogynaecological conditions: prolapse, bladder and pelvic floor problems

Pessaries tend to come in supportive pessaries, like rings or various other ones you can get in silicone. So these rings are available in PVC which this one is, and polythene which we don’t use, they are much thinner and harder. But I know that some patients in the community that have polythene pessaries in which is absolutely fine. And they come in sixteen different sizes, so 50 millimetre up to 80 millimetre in 3-millimetre intervals, and from an 80 millimetre to 110 millimetre in 5-millimetre intervals. So these are supportive pessaries that go in the vagina for pelvic organ prolapse. And then you can have space occupying, occupying pessaries such as these, this is a silicon Gellhorn, so it’s made of silicon so it’s softer and this is a hard plastic shelf pessary. So these are space occupying, this is, the prolapse will be dammed back in the vagina by this pessary. But when we talk about these pessaries with ladies we, it’s really important to discuss whether they want to maintain the ability to have intercourse, because with these space occupying devices in the vagina intercourse is not possible. But with something supportive like a ring, then intercourse is possible with the pessary in, or some ladies choose to take the pessary out, have intercourse, and then we’ll put it back in for them. So we’ll teach them how to take their pessary out and teach them how to put it back in again, or some ladies are self-managing these because they don’t wish it all the time, they just wish it for something high impact like dancing, exercise, you know going to the gym or whatever. So they’ll self-manage, and only put them in before they want them, and then they’ll take them out and leave them out for a while. So there are a huge range of different pessaries around, but primarily for pelvic organ prolapse.

There’s no exact science to pessary fitting whatsoever, no matter what you’re fitting, quite often we’ll see two, ladies two or three times before a) we’ll get one to stay or b) it’s comfortable, ‘cos pessaries are all about putting the smallest in to support your prolapse that’s the easiest to remove. Okay. So it depends on a lot of factors about what choice of pessary you use, so how big is the prolapse, how much support have they got in the vagina, and what does the vagina skin look at, what’s the perineal support like, how short or how short is their vagina, ‘cos if it’s shorter than 6 centimetres you’re unlikely to get a pessary to stay in. Does it feel comfortable? Is it supporting their prolapse or is it just their prolapse is so big you know like a ring is not going to work at all.

The only ones that seem to be mentioned in connection with the NHS are ring pessaries and from a little bit of research and also now talking to both physios, they’re not very effective on all sorts of prolapses and depending on what you want to do and then there’s also the question of how that affects your sex life. You’ve just, you know, giving up lifting things, you don’t want to give up everything that makes you, so that was really disappointing. I now have since learnt that if you go private you can, there are various ones you can try and from talking with people I’ve heard absolutely amazing things about them and now you don’t have to wear them all the time, you can choose to wear them for a run, for example, which makes it a bit more liveable with if you’re younger I think and yeah so I feel buoyed that there is that option but again it is something that you would have to do privately because it doesn’t seem that they’re all available on the NHS.
 

I went to the nurse with an appointment to get a ring pessary fitted. I think I’d googled it to see what it looks like roughly and it is just it’s just a ring, it’s like a curtain ring or something like that. And so it was like any other kind of examination that I’ve had loads of times with having two children, and you know or having a smear test or something like that. And she just showed me the pessary, and she said that she was going to fit it in, and it was just very quick really. She said it might feel, I might be able to feel it a little bit the first you know at first, maybe the first day or something like that, but I’d get used to it, and I shouldn’t be able to feel it. She said if there was any pain or any problems with it to come straight back. It was very quick and easy appointment actually. Yeah. Yeah, not really any problems and I think I had to come back a week later to make sure that it was okay, so I did that and she, yeah that was fine. And then she said to come back in six months, and so every six months I go back and she gives me a different one. And at first she wanted me to just leave it in for the six months, but after I’d said that I wasn’t leaving it in, I was taking it out at night and putting it back in in the morning, she sort of gave me tips like if you, if you can twist it into a sort of figure of eight shape it’s a bit easier to get it in. Sort of you kind of twist it, because it’s tricky at first, I mean now it’s absolutely no problem whatsoever I can take it in and out with absolutely no trouble. At first it just feels like this big thing, it’s a bit weird but yeah, you kind of quite soon get used to it. Yeah and it’s a lifesaver really, because it made such a difference.

So maybe if you were offered a few more, you might find a better fit more quickly. I have actually got a silicon ring pessary in now which I had fitted when I saw the uro-gynaecologist. It, it’s helping with some symptoms slightly but I still have a bulging feeling but I do feel like, that’s because my cystocele is so big that I feel like I maybe past the point of a pessary massively supporting it. But my symptoms have improved like my back pain feels a lot better so I feel like if maybe I’d been offered a pessary at stage one, I’d be, I’d been a year nearly before I was even offered a pessary, maybe if I’d been offered one quite quickly and I was at that stage one and things hadn’t prolapsed, it probably would have prevented things prolapsing more and I probably wouldn’t have been as uncomfortable. As I have been but it took such a long time to have been offered one I guess I kind of thought, well if they were any use, she would have offered me one a long time ago and maybe that isn’t the right way for me to look at it but that’s how I was but I feel that I became quite negative to the situation at this point. I feel like I’d had a lot of setbacks. A lot of, “You’ll be fine.” “It doesn’t cause pain.”
 
So, you just get to that point where I feel like you go to an appointment expecting the worst anyway that you think, what’s the point of coming if you’re just going to say the same thing.

I was quite interested in like this, the cube pessary because I’d been looking because for my prolapse that I’ve got apparently the ring one isn’t very good for supporting a rectocele and he was good. In a way he was very open and honest about it, he said he didn’t have the expertise, they didn’t have the expertise in different pessaries that they didn’t use, so they used the ring and other ones and they don’t have the expertise there but if I did get one then they would check it and make sure that I was managing it okay and stuff which, you know, I quite appreciated his honesty. It’s disappointing that like you can’t get that service like on the NHS, so I’ve actually gone privately now. I had an appointment on the other day for a private pessary clinic and there’s, it was just so different the experience like to feel genuinely like listened to and empathised with and, you know, just to have that understanding and like properly fitted for a pessary that actually, you know, taking into consideration the prolapses that I’ve got it was just a completely different experience.

So, yes, it’s a case of you know, lie back, open your legs. It’s just I assume they obviously squeeze it together so that it’s not just you know, try to insert a ring, but squeeze it slightly and obviously yes, it goes in. You’re asked to take a breath, but keep breathing deep breaths. I think the very first time I had it changed it was a case of, “Well have you done it then?” Because it was so…painlessly intrusive. It was you know, it was just incredible. But, yeah, you know, it’s uncomfortable. It’s not the nicest thing. But, equally, it does what I want it to do and you know, after the first one’s fitted they always advise to sort of go for a little walk, blah, blah, blah. Go to the loo. Walk around for half an hour just in case it’s not the right size. My first one did actually dislodge after 10 days, so I did go back and have a larger one fitted. But again, that was fine.

I went to a clinic in a local hospital, emailed consultant and she said, “I see you’re here to have a pessary fitted,” and I said, “Well, actually I’m here to discuss whether you think that would be helpful.” And she said, “Och, we’ll just do it,” and I don’t, I mean I’m an intelligent, bright woman. I’ve no idea why I didn’t, why I just said, “Right that’s fine,” and she popped it in as she described it and said, “That’s fine, we’ll see you in six months.” So I, so I went off and about an hours’ drive from the hospital, half way in the journey I was so uncomfortable and I thought, ‘I don’t really know what to do,’ so I phoned the clinic and I said, ‘I’m having, I’m really having problems. I’m in the car and I don’t how to, you know, and I’m not really dramatic—‘, however they obviously thought I was being and the nurse I spoke to said, “Och, it’ll be fine dear, just go home and you’ll be fine.” So, I drove the rest of the way home and it kind of got it slightly more comfortable but I couldn’t go to the toilet, couldn’t pee. So kind of worked out how to do that, I don’t think I would want to describe on camera what I did but I did manage to work out how I would manage to pee, went to my bed, woke up at 4 o’clock in the morning and I’d wet the bed, which was just indescribable, I can’t describe what that felt like for me.

Well I’m quite a clean person, well I must be but most people are, but, I, it’s something to do with I think with our fibromyalgia again. We, my sister and I both find we have quite a sensitivity to light, noise, smells, and one of the things they tell you when you wear a pessary or have a pessary inside, is that it can cause a vaginal discharge. And I didn’t like the idea of that. And it’s just, I don’t like the idea of this thing, you know, this plastic silicone thing inside me for six months without being checked and you know taken out and cleaned and put back again. I didn’t like the idea of it being taken out and put back in again, but I thought well better that than sort of worrying about could it get infected. Because they can get infected when they’re inside you.
 

When I consulted privately with the urogynaecologist and they said I had interstitial cystitis and my bladder’s not fully emptying. And that I needed to use the self-catheterisation to prevent infection. Now I’ve actually found a balance that I don’t need to do it all the time. But that’s through trial and error and self-management. If I’m at home and I can go to the loo every half an hour and, and just make sure my bladder’s empty or if I’ve been to the loo, I go back again 20 minutes afterwards to make sure it’s empty. But if I’m out and about, then I’ll take them with me and then I need to because you don’t have the opportunity to go to the loo as much as you do at home and you’re not drinking as much as you do at home, so it’s self-management. But again, smashing little device, goes in your handbag, not really any longer than your hand. All in its self-contained packet, works really, really well. It’s a great thing. If you need it it’s fab. They’re very discreet and very effective.

I had to go home with this pack of self-catheter things, cath, SpeediCaths I think they call them, and I had to start having to do this and I just went from worse to worse. My abdomen was absolutely swollen. The pain didn’t get any better. All the time my bladder started to fill, it got worse. And it’s a bit like a crescendo if you know any music, it’s like the pain increases as the bladder fills and then, you know, I’d have to keep self-catheterising, measuring everything. I went through all this palaver of measuring everything that was going in and measuring everything that was going out to try and help me to make sure that I wasn’t leaving anything in so I would try and minimise infections because they were coming fast and furious and it just went on from there really, it’s just the, then they went through everybody in denial that it’s to do with that. It’s to do with me, it’s my fault that it’s not working. There’s something I am not doing right.

There’s the problems you have dealing with having catheters whether it’s suprapubic or urinary and how to cope with the bags and me being me, I just went on the internet and I knew the different sort of bag manufacturers having been, worked in theatres and I looked at all their, their websites and I got samples so I could test them all out but normally patients wouldn’t get that, you know, they wouldn’t do that. So I, so, you know, having, you can get these leg bags which you strap to your leg and you get different lengths of catheter, you can have leg bags at the top of your leg or you can get a leg bag which is further down your leg and for men you can get ones for that you wrap down your tummy but no good for me because I’ve got a fat tummy anyway.
 
The issues were that when a bag gets full if it’s at the top of your leg it tends to pull and it tends to pull so it falls down your leg and then it can pull on your catheter which is a horrible feeling. You’ve got to deal with the fact that you’ve got a visible lump underneath your trousers because you can’t wear, you could wear skirts but I couldn’t, I can’t wear skirts so you have to deal with people seeing you and we know, you’re very conscious of the fact you’ve got this big lump of plastic with your wee inside it underneath your trousers so that’s quite hard to cope with. So this is why I spend so much time looking to see the different sorts of catheter that were out there to see if I could experiment and get one that was going to be right for me because at that point, I didn’t know whether I was going to be catheterised for life.

I’ve also I’ve bought this friend, the friend who had the birthday yesterday who told me about this who also told me about these other pants they’re advertised, it’s, they’re like cycling shorts but they’ve got like pads inside.
 
They have like TENS pads on it and there’s a front and the back and it’s supposed to direct the signals to your pelvic thing so I’ve used that about three times. I did spend quite a lot of money on that because I thought, I have this mentality if you buy enough stuff and everything like that but you don’t actually have to use it, you’re one step there. So I do have them in my hall cupboard which I should dig out and I should do again and that should be and that’s when I then feel guilty that I haven’t done this to help myself before I go and ask for more help because I’ve got to pull my weight on it.

She, so, so she gave me lots of exercises and then she said to try this electronic device that stimulates your, you can buy them online but they, they hire, they loan them to you. And so I used to have to put that in every day, I think. And you had to let it pulse for so many times. I can’t remember how it all worked now, but it was, it was quite easy to do, and it was meant to stimulate your muscles and she felt that it would then, I would recognise what to do in future in terms of using those muscles because I’d feel them being stimulated. So we did that, and then, and I thought, ‘Shall I buy one?’ And I thought, no, I won’t bother because I wasn’t entirely convinced it made any difference, I really don’t know. You don’t really know whether these things made difference but you, you think it’s worth a try.

I know when I went to see the physiotherapist last, the lady physiotherapist, I did ask her about these Kegel machines cos I think, I think I probably was looking up for something about, “What’s the best way to treat incontinence?” or something like that, and they came up. And I did ask her what she thought, and she said, “Well really the best thing is, is exercise.” But as I say I’ve been doing those and I just thought I would, I would try something else.
 
It’s a probe, and it has a variety of settings for various things, for stress, urge incontinence, various things like that. And you just set it various speeds or, or, intensities. I have to say when I first started using it, I had, it was on, I had to have it on a very low intensity but it has been building up so I’m tending to think well maybe the muscles are starting to build up, so maybe it is helping. And as I say I definitely think it is. Although it’s a catch 22 – I’m now not coughing, so it could be that because of not coughing it’s improving, or it could be because of the machine I’m improving.