I really didn’t know what it was and when you go on the internet, you go on the NHS website it says, you know, sometimes these symptoms can be caused by vaginal atrophy, can be caused by vaginal dryness, can be, bl-, bl-, there’s a whole long list of things it can be so then I want, I want somebody to actually knows about stuff to tell me which one of those things it is.
 
Because we’re in the pandemic, so the first-, what they do first of all is they give you a telephone call and that was with a man, a male doctor and I found that quite difficult to talk to a man about it. And but he said, he was lovely, and he said, “Oh yes, come down to the surgery and we’ll get you booked in,” and they had booked me in with the female GP which was much better and she was lovely, she was just very matter of fact about it. She, you know, as soon as I lay down and you get into that sort of smear position, you know, with your legs apart and your ankles together and she said, “Oh yes I can see it.” Well, that’s not what you want to hear [laughs]. But yeah. And she did an internal examination and she said, “Yes” and she said, what sort of prolapse it was because at that point I had no idea and what stage it was so I think both of those things were helpful. But once you’ve got some information then you can go away and you can read things and you can look at things.

So an example of that might be where someone’s come with pain and bladder frequency and you’re thinking, ‘Well, this probably is bladder pain,’ but I need to just step back and make sure that I haven’t thought, could there be something else happening in the pelvis that might be pressing on the bladder, or that I need to be thinking about? So kind of any red flags. Is there any bloating in someone who’s gone through the menopause where I might want to just make sure that I’ve thought, could there be an ovarian cause? Have I done the blood test about-, that might look into that, if I need to? I think all-, you know, as an example of that, have I done everything I need to do?

I’m checking that there isn’t an infection when I did the urine, but actually is there non-visible haematuria? If there is, kind of has it persisted? Have I explained it? Have I done everything that needs to be done about that? You know, so those kind of red flags and the pathways that you also might need to be following. And you can often do it in parallel, and kind of-, then it’s just making sure that you’ve got that shared understanding that you are hearing about what symptoms they’ve come with and that are important to them, and that you’re going to be able make a plan, hopefully, to help with those symptoms, but you’re just taking that moment to take stock and make sure you’ve thought about all the other things, as a GP, that you need to think about, where they might be other things that you need to do to make sure that-, that things are cared for appropriately really and that it’s safe and all done in a timely manner.

And I guess that’s also true about that kind of intersection between what somebody’s coming in with now as their most difficult symptom, but, you know, sometimes it can be quite complicated when there are other illnesses, and other conditions, and you’re balancing all of those things. You know, so for an example, if somebody’s got really significant bladder pain but they’ve also got endometriosis, it’s about making sure you’ve stopped and thought about how those intersect and how you can understand which one might be the kind of most important one to tackle first in order to relieve all of those difficulties. Or where you might be thinking about a difficult balance between medication, where someone’s got really significant kind of difficulties with the bladder and with the-, managing the urine and how that’s affecting their life, but where they might also have something like heart failure, or a heart condition, where they’re needed to take diuretics or water tablets.

Then he called a nurse to come to be sort of like a a, I don’t know what you’d- a chaperone basically and I’m, I mean when he called her, he stuck his head out and just sort of shouted down to the nurses station, “I’ve got another one for you.” Which I just felt so like a slab of meat. And I know it’s their day-to-day, they must get it all the time but I mean it’s quite, you feel so self-conscious anyway especially postnatally because I was a mess and he, yeah, so he then-, he does an examination, wouldn’t tell me what grade of prolapse I have. Said-, used lots of completely- I’m sure it’s completely correct of medical language but without me understanding what it is. He said things like, you know, using this term lazy and laxi-, lax-, what’s it called when it’s l, my muscles were lax basically but not explaining what that meant in relation to the prolapse. Wouldn’t give me a grade and then he said, ‘Oh we’ll talk about your surgery options.”

I finally did see an NHS gynaecologist, I was examined lying down and I, it was part of a med student clinic so I didn’t mind having, a med student having a go too and the consultant gynaecologist was kind of in the background and when we had the chat after I said, “Oh I forgot to ask to be examined standing up,” and she said, “Oh we used to do that, we used to put women in to all kinds of standing positions and squats while we examine them but we felt it was undignified,” and I was so shocked that she said that but for me it was such a teachable moment because I had this med student in the room and there were, the session was being recorded for med students and I said, “Actually, what I think is undignified is having waited for months and months and months for this appointment and leaving here like I don’t have a full picture of what’s happening in my body?” and for some of us with prolapse, gravity has a big role to play so yes give women the option of being standing. Some of them won’t be comfortable with it but for me, yeah, I do wanna know does my, does my prolapse grade change if I’m examined when I’m lying down versus if I’m examined when I’m standing, that is useful information for me so I don’t feel it’s undignified, and I don’t think a health professional should be using that language. So yeah, I was pretty proud that I said, “Well undignified for who?” [laughs].

I would try and explain the importance of examinations. So why-, why it matters, how it can help, and how we might be a bit more limited in understanding what’s happening with their symptoms that are causing them trouble. You might want to explore what their worries are about examination, and whether there’s anything that you could do that might make that less worrisome, to work towards it. Sometimes it would be worries about things like a speculum and-, and thinking about the progress that you could make in understanding those symptoms without using a speculum, might for example sometimes help you get to that point. Sometimes it’s about feeling ready or prepared, and people will say, ‘I don’t want to be examined today,’ but then being flexible about a time when you could examine them, sometimes the people might want a longer appointment or something with them. So I think it’s about trying to understand what the barriers are, and work with that person as much as you can to create a space where you can reduce or make those feel more manageable. But ultimately if someone doesn’t want to be examined, then-, then-, then they’re not going to be examined.

I would much sooner have somebody check down below and help me with the conditions. It only lasts for five or ten minutes. They’re so kind, they’re so thoughtful. I would, I like to be informed so for me it’s all about, please yes check me as much as you need because if that can help me have a better quality of life, it’s well worth that embarrassment for five or ten minutes.

[In past internal examinations and coil fittings I’ve had] they move your parts inside or, or they pull things to, inside you but then I don’t know when are they going to finish so I need somebody to be talking to me and saying, “So listen, I’m doing this and it’s going to be this, it’s doing okay, it’s just be a few more minutes,” and then also to be truthful, because when they said uncomfortable, uncomfortable to me is that you give me a pinch. You pinch my cheek, that’s uncomfortable. Not, what they call uncomfortable is excruciating pain. So, the last time I had, not this time, the previous time I had my, my Mirena coil inserted I was in such an agony, and they said to me, “Oh if you’re feeling much pain we will stop.” And then they didn’t stop, I was sobbing.
 
I find it [internal examinations] very undignified, you know, you know, I have to take my pants and then they, of course they’re not seeing me naked, I know, of course they put a thing for, just the fact that you have to put your feet on those metal reins and open it up, and then pretend nothing is happening. And then they insert that thing that sometimes is very cold, uncomfortable.
 
And I’m terrified, I’m just like mm, nah, maybe another day, nah. No. So I’m avoiding it [seeing a doctor about urinary incontinence], I literally avoiding it, consciously avoiding it. 
 
And it’s really worrying because I know that at some point I can actually physically force myself to just to go the doctor, but then for some other people no, and then might not be the case, and then it can cause even more problems, because-, in the long term.
 

To explain urodynamics, you’re tested for a UTI first, you give a, you have to give a urine sample then you are attached by a catheter and probes, one goes in the bum to a machine and your bladder is slowly filled with 500 millilitres of saline, I was then asked to stand on blue paper towelling, this was the funny bit right, well I thought it was funny, and asked to touch my toes, cough, and do jumping jacks. I didn’t have any issue with this, I offered to do star jumps but they didn’t, you know, didn’t find it funny. I was then left in peace to empty my bladder while the machine, you know, measured that I could empty it fully. I didn’t have a problem, didn’t lose a drop, a drop on the activities I was asked to do and, and that was that.

He sent me to another hospital for the uro-dynamics assessment prior to surgery, because he said he didn’t have that facility locally. And I think that the whole experience scarred me to be honest, because I got sent into a little room to change into one of the hospital gowns, you know that don’t fasten up at the back. And then I had to walk from the changing room in that across a busy corridor into this clinic. And there were two very young nurses there, doing this you know drinking this and jumping up and down and measuring how much you were wetting yourself. It was dreadful. And then at the end of it they decided, well what they said to me was that I really ought to accept that I was now incontinent and instead of using sanitary pads to cope with it, I should now go to a supermarket and buy some incontinence pads. I don’t know why they thought I was there; I don’t think they had the whole picture of me but this was part of an assessment. I was 43 years old. And I, I’m choking now thinking about it, and I came, came out of there and I just thought, ‘I don’t believe this.’

And it is like, I know it’s got to be done, but you, it is quite embarrassing, cos you think like sitting on the commode and you’re going to the toilet, and stuff, and you’ve got to get your ultrasound, and you just think like I feel really like a bit vulnerable, because like with being young and stuff, you don’t expect to have like bladder problems so young, and things. So but all of the healthcare professionals that I have like come into contact with have been very supportive and they’re very good and put you at ease and stuff, and make sure you’re like, you don’t feel like your dignity has gone, like they make sure that’s there and stuff. And make you comfortable during it and like answer all your questions and everything, so that does make a huge difference as well.

And there are alternative tests, diagnostic tools that can be used which aren’t dipstick, which isn’t a culture, which is a microscopy where they look at fresh unspun urine under a microscope and look at the level of your white blood cell count and the level of shedding so when you look in into the, into your urine sample, you can see it. You can see all of the lining of your, your bladder, coming off because your innate immune is trying it’s best to shed. And it really only does that if you’ve got an infection or if you’re pregnant because your, when your body is trying to make sure when you’re pregnant that you’ve kept safe so it sheds the lining. And yeah, they just don’t mention about the alternative test that you can use and they don’t mention about the possibility of the tests that are being used being inaccurate and so it really kind of, stops any exploration, you know. If you’re a patient and you’re looking at that website, you think ‘ah, well there’s nowhere else for me to go.’ Whereas at least if the website said, “We acknowledge that there are problems with testing. We acknowledge that there are, that there is a diversity in opinion around what these symptoms could be and what the condition is”. I think that would really help people that that look for help on the NHS website and currently aren’t getting it.

Okay well there are two types of cystoscopy that you can have. There’s one called a flexible cystoscopy where they put a very narrow tube with a camera in, into your bladder, and they can have a good look round and see if they can see any lesions or any sort of abnormal growth, but what they can’t see with those, and I suppose what you can’t see with the naked eye is infection. You would just be able to see sites of inflammation where there is infection. And that’s done as a day case procedure under local anaesthetic in hospital. And it’s pretty quick. And then you can have something called a rigid cystoscopy where they might give you a general anaesthetic, and they, that’s also got a, it’s a, it’s an instrument with a camera in the end and they insert it through your urethra up into your bladder and have a good look round and see whether they can see anything that might be causing your issues. The only problem that I’ve found with having cystoscopies is that they can stir up an infection so you might go into hospital feeling well, and then after the cystoscopy, the infection, you might get a urinary tract infection because of the procedure, which you know then might take a few weeks to settle down. So, I think the cystoscopies that I’ve had have never actually shown anything apart from a little bit of inflammation in the trigone area of my bladder, which is the neck of your bladder. I’ve sort of looked back with hind, you know with hindsight and think, ‘Oh well I’m not really sure that that was worth the, the hassle and the effort.’
 

Then the cystoscopy, that was less fine because you, they put you under general, general anaesthetic for that and they go in and actually take a load of biopsies and everything [laughs]. So, you know, that was quite an experience and I, I don’t-, the general anaesthetic just seemed to knock me out totally. I just couldn’t really wake up for about three or four days, I don’t know why. And that’s not very nice because then you, you know, you go to the loo and there’s bleeding and, you know, that’s not very pleasant, but [exhales] and I’m not sure even necessarily what the real benefit of that is. I mean, they, it’s helpful insomuch as they take biopsies, so you know it’s not a cancer, which is obviously very important. But then aside from that, it just seems to tell you that you’ve got inflammation, well, I mean, you’re going to have inflammation if you’ve had a load of infection and a load of other stuff. So, I have heard anecdotally of women being put through sort of five or six cystoscopies and you think well, I’m not really sure why like once you’ve established that it’s not cancerous, which seems the key aim, you know, they’re going to be inflamed and probably more so after you’ve been prodded around with the tubes [laughs]. So yeah, that wasn’t very nice. But, you know, at least it wasn’t anything nasty.

When I first went I had to go for a wee and I had to make sure that I had completely emptied my bladder, and the doctor didn’t feel that he, there was still some teaspoon full left, but you know whatever, but I don’t, he must’ve then recommended the hysteroscopy.
 
It didn’t, it didn’t particularly affect me going to the hospital for tests and having invasive investigations.
 
Well if you’ve had children, I think it changes your perception of these things, don’t you? You know.
 
You’re less precious about your-, maybe it’s just me, you’re less precious about your body somehow, and I had the first caesarean was under anaesthetic, but the second two were elective, you know because my pelvis was too narrow, so I was conscious, that I had them with epidurals, and you know when you’ve got people messing around in your insides, you know you, yeah, I don’t know.