Urogynaecological conditions: prolapse, bladder and pelvic floor problems

So, I’m still trying to get an appointment with a consultant urogynaecologist who will do scanning on me. So, I have just a better idea of what’s going on, ‘cos I still feel a bit a bit lost a little. Although I’ve got a better idea, I still feel like you know, I’ve got this NHS appointment for a pessary fitting, but they only fit the ring, which I’ve been told is not very good if you have an avulsion. You need to have a cube pessary or something similar to that. But they just, when I spoke to the GP they said, “Oh no, we just don’t fit those. We just don’t have them. We only offer the ring.” So then, I don’t really know where to go from that. So, I need to find—so I feel like my experience with healthcare services so far with this condition has just been I’ve been trying to kind of navigate my way through it and drive forward [laughs]. And it’s been…yeah, quite lonely at times and been quite frustrating and if felt like no one really has your back and no one’s really looking out for you, you know, which has made something that’s been like quite traumatic and like difficult to deal with even harder. You know, harder than it needs to be, I felt.

And then finally I saw kind of urogynaecologist at the follow up clinic and she examined me and, you know, listened to everything from the start to the finish really, really wonderfully and yeah had the reassurance I got from like a whole group of like complete experts looking at things was really, really good. It was good to know that they all thought everything was normal and that gave me like a whole new sense of ‘Okay actually this is all manageable and I can deal with this and things are going the right way,’ so actually in some respects having lots of examinations and lots of people look at it gave me lots of reassurance and the confidence to kind of be a bit more hopeful about the future so I, yeah, yeah there are good and bad sides to having lots of people examine you.

The thing that sort of strikes me is that I don’t feel like I’m necessarily straightforwardly trans as maybe the general narrative among healthcare professionals would suggest in so far as I have, oh I transitioned at the age of 15, pursued living as male for some years after that with hormone treatment and chest surgery and then had a sort of a, I guess reinterpretation of my gender identity and how I sort of identity and that kind of involved reappraising some of the trauma that I’d been through before and kind of coming to see it more as a sort of a dissociative thing, not necessary in a pathological sense but just in a kind of identifying as a plu-, in a sort of plural way, and, you know, and then feeling as though there are kind of both female parts and male parts to me.
 
So I feel like where some clinicians have sort of interacted with me I think sometimes there’s an assumption that I’ve straight forwardly, you know, transitioned to an opposite gender and that’s it which then can make interaction kind of, either somewhat limited in terms of like I feel like there’s only so much they can understand what kind of needs I have in a, you know, in a healthcare setting or, you know, it, it maybe doesn’t necessarily impact on the care per se but I just feel very awkward in the interaction you know, or feel as though I’m being placed in a certain role.
 
And assumptions are put on me that, you know, may not actually be true. And I think like my recent experience when I actually was admitted with the infection to the hospital was really positive because I, I was kind of able to have the chance to explain exactly how I identify and, you know, in in as much detail as I wanted to. The people that I spoke to were completely fine with that and, you know, didn’t kind of make any assumptions whatsoever so you know, in terms of when it came to what ward I would be put on I was kind of given the choice of either a male ward or a female ward. Whereas, you know, previously I’ve kind of had interactions where it’s assumed I would want a male ward when in fact I would prefer a female ward. So just kind, just kind of having interaction where people have listened and asked the question have been really good.
 

I don’t think he checked me standing up, or on my side, ‘cos on your side is a good way to check. I think he just checked me on my back. He I mean he basically, he said to me, “Oh what you want to do is hang on in there for 15 years, and then have a hysterectomy.” And he actually said, “Hang on in there,” said, “Hang on in there for 15 years and then have a hysterectomy.” And I don’t even have a uterine prolapse. You know. I don’t even, in fact, and he didn’t like give any explanation, he was like, “Look, that’s the best thing for you to do.” And that’s, that’s the bit that stuck with me. I did ask about having Ehlers Danlos-, Danlos, or being hypermobile and he said he didn’t really know much about that.
 
And I remember, I also, I’d been thinking about doing, going back to doing like more Pilates and stuff there, and I remember he said he didn’t, he couldn’t advise on that either. He didn’t know anything about that. I think I actually contacted the physio again after that, and I might have asked her, and I think she said to me, she said that that would be fine so I did get her feedback on that. But I just thought he was a complete arse to be honest [laughs]. He was just very, I mean this is, I was sitting there telling him this has destroyed my life, and he was very unsympathetic.
 
[At the follow up appointment], I went in and it was bloody [urogynaecologist name], it was a waste of time. Like he just asked me questions. He asked me questions about my pessary. And he was like, “Oh I think I got more out of this than you did today.” And I was like well yeah, I took the morning off work to come and I was expecting to see the female urogynae, and I ended up seeing him and he just made some notes about my pessary, which was, might help other people, which is a good thing but it didn’t help me [laughs].

I was always struggling like what to tell them like it’s just like because they ask, they always ask “Oh what’s the problem?” and said “Oh I have like problem it’s just like” “Oh so what’s exactly?” because they want to assess it like if it is something urgent but then I was really always, and then there this older British woman she told me just say I have a gynaecologist problem and that’s it, or woman problem and then I think she said especially if a man he should understand that this is like inappropriate question, I think they’re, I think like elderly women here they’re all like, I think they know better how to deal with the with the receptionist of them and he was polite the guy he never, just like yeah I think they dig through like oh what’s wrong with you and sometimes you’re just like a bit uncomfortable to tell I’m like I’m leaking or like I’m peeing on myself or yeah I’m itchy [laughs]. So yeah I think so yeah since then I just say “I have gynaecologist problem” or like “I have a woman problem” kind of talk and I think they respect this I would say, so I think just if you know like they, maybe the word that you can tell, the magic word to tell them and they can stop like interfering in your business, I think it’s fine.

But once I got the referral yeah went up to the hospital and really quiet, like I was like, ‘why has it taken this long because there is no-one here at all?’ So again, middle of Covid so I was sat in a waiting room and then, yeah consultant came out, consultant and two nurses were in the room at the time. She was amazing, obviously knew exactly what she was talking about, really reassuring kind of brought in personal elements as well, like you know, she obviously had her own children in the last few years and kind of mentioned them and the experiences that she’d gone through which again is, you know, is reassuring that people are not just at work, you know, bringing that kind of personal element to it as well. I mean she may have been making it all up for all I know but it helped [laughs]. And really kind of gentle, listened, understood, did a referral which again, you know, when you because by then you feel a bit stupid because it’s a lot better than it was when you did the referral so especially at the minute, you don’t want to be wasting people’s time and I kind of was very open about that. I said, you know, “It is better, it’s still definitely not how it should be but-,” and she was really reassuring of that as well. Like, “No, you know, absolutely you should be here, you know, that’s fine.” Apologetic about the fact that it’d taken a little while and then also just the fact that there was a kind of next step I think is quite, just shows that you’re being taken seriously if that makes sense that, you know, they’re going to do something and you’re like, ‘Oh okay I haven’t made all this up’ [laughs]. And then, yeah, the physio appointment actually came through quite quickly after that so that was helpful because you’re kind of then like in the system. I feel like once you’re in the system it’s fine, it’s just getting into it.
 

And what I don’t understand is-, what I did learn in this process was it’s a different Trust to the Botox hospital Trust, they all seem to run in different little pockets, or little autonomous groups. ‘Cos I couldn’t understand why the people who wanted this information couldn’t go directly to the Botox clinic, and get all the information of why they gave me that for all those years anyway. Nor could I understand why-, because it’s both ends of a medical problem, I get catheters because I can’t release all the urine, and this helps me that way, and at the other end because I can’t stop releasing the urine, because no Botox operations were being done due to Covid-19. I can’t get a preventative problem for that. And I, I’m, I just don’t understand it.
 
And it also means that when the lockdown is unlocked, I’m not going to be able to go anywhere without protection. And it’s going to be worse than being locked down because until I can get my Botox again, I’m stuck. Really stuck.

And I remember explicitly asking-, and no one has a crystal ball, right, so it’s maybe a little bit unfair to call this out, but I remember saying, “What does treatment look like? Like will it lead to surgery? What-?” you know, there’s like a million questions at the time. And he [the GP] was like, “No. No, you won’t, you won’t need surgery, it’s-,” you know. And I think ‘Well I have needed surgery so don’t, don’t tell people and discredit’, and it’s not like a badge of victory. I’m not really chuffed that I had to have surgery, it’s been bloody hard. But my point is you’ve, you’ve put into my head that it’s-, or certainly I’ve processed it that way, that it’s nothing and I won’t need care and actually I have and it’s been a really bumpy road. And I think had I had a more appropriate maybe sensitive approach at that point that said-, you know, I mean they’re general practitioner right, the name is, the clue is in the name, they’re not experts and they’re not expected to be. But and they have ten minutes to get through some, through some potentially quite meaty things so I get it, I get it.
 
But I think, you know, changing the language around, “There are numerous treatments, once you see a gynaecologist, they’ll go through it but it could be a, b, c. we tend to start slow and move forward. It could just be that you need physio, possibly we could talk about pessaries,” you know, there’s all this-. I didn’t have any of that, it was off you go and then I didn’t hear anything for three weeks, so I rang the GP, and they were very much, ‘Well it’s with the hospital.” Like “What does that mean? Who do I ring?” “Well, you’ll have to ring gynae.” “Okay, do you have a name, a number?” “No, you’ll have to go on the website.” Okay so I’m on the website and again, I don’t necessarily expect that they should have a name and telephone number for every contact for every single thing that comes out of a GP surgery, again they are general practitioners, and they have a whole raft of healthcare issues that they need to, you know, manage, forward as appropriate. I get that, it’s not lost on me. And I get that the receptionist may not know my history and necessarily-, they may have adapted their approach had they known.
 
But again, you just feel like a nuisance and then you’re blindly on Google trying to work out where to go – this switchboard, that switchboard, you know. It’s a sensitive subject to talk about. You are in a post-natal bubble in my experience where hormones are flying everywhere and you haven’t slept and all that stuff and you feel-, it just takes a lot of energy when you don’t really have it. And really if someone had said, “We’ll chase that up for you,” or, “Actually the likelihood it’s a bit of a delay but don’t panic, they’ll ring you when they can” or whatever, they’re the sorts of things.

It goes back to the whole transition thing. As someone that works in the NHS and has been through the system all my life, it’s that children’s services are very much geared to children, and unfortunately-, I live in a location where there is a world-renowned children’s hospital, and adult hospital is very different. So people with long term complex medical conditions don’t quite fit into the adult service. You go to some clinics and the waiting room is full of old people. And I think ‘I know there’s younger people going to be affected by these conditions, but where are they? Where are the working age people?’ And it bothers me, it does bother me. I think a lot of the time, you know, as I say, a lot of the time incontinence and urogynae related conditions are associated with older populations. And that is terrible, okay, I guess they are maybe more affected but there are younger people out there. There are people of working age that have got conditions like that as well, and where are they? Why have we-, why are we quiet about it?