“”Medical gaslighting” is an informal term that refers to patients having their real symptoms dismissed or downplayed by medical professionals, leading to incorrect diagnoses. Women and racial minorities are more likely to be affected by the phenomenon “

— Wikipedia

I am posting this, partially as a personal record and to let you know my (lack of) progress with the. medical profession.

I can tell you that this interaction is about as good as it ever gets with these people.

Despite this,I had to constantly push back to get. my concerns heard and I am convinced that he would not have ever come to the party with tests for kidney function.

As it is, I had to pay for the tests I wanted, all of which coincided with industrial action by laboratory staff.

It took me several visits to get my blood taken.

Whilst I have little difficulty accepting a secondary urinary tract infection he did not want to talk about anything else. 

He prescribed antibiotics to clear up the worst of the symptoms while doing nothing to address the deeper issues.

I am not convinced that his “steady-as-she-goes” approach is going to bear any fruit. 

I am getting worse but he wants to hear from me in a month. 

New Zealand’s public health system,”post-covid, is collapsing so this is what you can expect these days.

Here is the transcript of our conversation – the only bit I have excluded is the name of the doctor and the Centre along with some of my more intimate detail: 

Doctor: James from … Medical How’re you going?

Me: Well, I wouldn’t be with talking to you now if I was alright.

Doctor: Yeah, the usual. What are your troubles today?

Me Well, we could start by t discussing that letter that I sent you.

Doctor: Yeah.  Anything particularly you want to begin with ..?

Me: No you can just comment on on on what I wrote to you and what you intend to do because I’m feeling really sick and it’s not easy for me, and I don’t intend to sort of reinvent the wheel when I when I’ve written to you.

Doctor: Okay, so you’re having a lot of trouble with passing urine and sort of smelling offensive.

Me: Yeah, well, the offensive bit passed after a while, but it’s still after after more than a week. It’s very much the same. It has hardly lessened at all. It’s worse at different times. Late last night or hardly. I can hardly passed everything through the night. The night before. I was up about five to six times during the night. And then there wasn’t very much to show for it.

Doctor:Yeah, yeah. And you find when you do and every time you do need to go to the toilet,  tiny little amounts?

Me: It varies slightly. But yeah, that’s the general story, yes.

Doctor: Yeah, and when you do have the desire to go to urinate defined, you have to rush them more than normal.

Me: Well, when it first started, yes, I certainly did. And I sometimes …

Doctor: Okay.. Any fevers or anything like that? No,

Me: No, nothing, no fever. In fact, actually, it started with chills.

Doctor: Yeah, okay. Sure. Any pain in your tummy or your abdomen?

Me: No. No pain. Probably, just from the urgency.

Doctor: Is there any burning or something when…

Me: Most of the time not but sometimes yes. And sometimes sort of burning, you know, the very low abdomen sometimes at the tip of the penis.

Doctor: Yeah. Okay. This sort of would suggest sort of UTI, potentially, the sort of symptoms you’ve described to me. Is that what you were thinking?

Me: No, no, it’s not. Because I’ve looked into this. And even though a lot of the symptoms are very similar, to me, this doesn’t, , compared with my history, because I’ve been absolutely ill. I mean, this is this is what you folk don’t seem to get I’m ill 24/7  The only time I get any relief is during the night hours when I sleep.

So this is just something on top of that.

So to pretend  it’s just sort of something out of the blue and and you know, yeah, I mean, I don’t really like airy start to the to the conversation because you know, it’s tastefully. Well, it’s not, doesn’t have over a good reaction to me.

Because I’m sick all the time. All right?

Me: Okay. So I don’t mind if you want to test for a UTI or for prostate problems, I mean, of course, those things have to be eliminated. But so long as you test for the other as well.

Doctor: Yeah, just the way you’ve written  was I sort of took the term, that the nocturia and the urine issues were sort of new ones rather than….

Me: No, they’re not I mean.It’s been particularly strong. in the last 10 days, it came on very, very suddenly with chills and things but no, I’ve had noctutia and, and  difficulty for you know, for some time – I mean, years and said, I mean, and I’ve just ignored – you know, it’s just part of life. And the last time I had my prostate checked. It was a physical examination. I mean, it was 20 years ago, so….

Doctor: When you are going to the toilet define this sort of stream or hard to get started.

Me: Oh, yes, absolutely. I mean, sometimes it’s impossible. , I might have a huge agency, go to the toilet and then pass a few drops and then as soon as I go and sit down or something, it starts again.

Doctor: Yeah. Okay. . Do you find you sort of have troubles at the end of urinating sort of dribbling afterwards?

Me:…. my pyjamas because you know, because there’s dribbling afterwards. 

Doctor:Yeah, okay.

Me: I think, as you say it would be worth getting urine tested and it would be worth doing a PSA as you mentioned.The idea that testing of the urine is to see if there’s any underlying infection, because that can cause some of the symptoms that you’re getting. And it would be worth ruling  that out.

That’s a sort of short term thing, isn’t it? I mean…

Doctor: Exactly. 

It might be, but it’s on top of. It’s on top of something else.

Doctor: Yeah. And the question is, do you have say, an enlarged prostate that’s causing your problems?

Me: Well, I mean, that’s something that you can remove from the possibilities .

Doctor: So I think they would be sort of the main two things I’d be thinking of at this stage in terms of….

Me: Well, I would like the other tests done as well. In fact, I would, really insist on it.

Doctor: Yeah, that’s okay. And so, so we’re more than happy to do the urine

Me: Because I don’t believe that this is I mean, it can can be a new thing, but it’s not just sort of something out of the blue. It’s something that’s chronic, and  a urinary tract infection is not.So, I’m not saying I’m not dismissing, I’m not saying it’s impossible, of course it’s possible.

Doctor: Yeah, I think as you say, there’s probably multiple things going on and we just need to sort of sift through things and try and sort out what, what sounds likely and get that all fixed up and then sort of work our way to try and get some of that other stuff sorted out. Does that sound like a good approach to you?

Me: Sorry, you have to repeat that.

Doctor: So it’s sort of what you’ve told me so far. This would seem like the most likely thing, on addition to….

Me: What is the most likely thing?

Doctor: UTI by the sounds of plus your chronic issues underlying

Me: What are the signs of a UTI? Usually, it’s things usually what are the signs in me? From what I’ve told you?

Doctor: Yeah, so be things along the lines of the chills that you’ve mentioned. The episodes of, sort of bit of painfulness, in your lower in your abdomen, at the end of your penis, the need to go often to the toilet, finding that you’re not actually passing a lot when you do go the incontinence that you haven’t normally had.

Me: So, those are all distinguishing factors from, say, from a kidney problem. So the things that you mentioned, they are things that would would rule out kidney problems?

Doctor: In terms in terms of a kidney infection, generally the things that rule that….

Me: Not infection, and I’m talking about long term things.

Doctor: Like proper renal failure issue.? …

Me: Well, I mean,, potentially, it’s got to start somewhere, doesn’t it?

Doctor: Yeah. So kidneys don’t tend to cause you troubles with urination. When you have troubles with them. They tend to give you issues related to fluid retention.

Me: Or well, as I told you in that letter, I went and had Chinese herbs and they helped me immediately, and temporarily. I passed a lot of fluid, so that is resolving some of the, …  I have had a lot of fluid retention, I mean, you know, because my, not my weight, my sort of shape is out of all proportion to everything that I eat  and, and right throughout this for a long, long time,. I’ve had nights when I hardly pass anything at all. So, I have one of those pots next to me. Then the next night I can, I can fill it completely. And it’s got nothing to do with the amount of fluid intake. It’s just something that’s happening in the body. So one night there’s nothing.The next day it’s it’s very profuse.

Doctor: Yeah, and I guess that  will potentially be related to how your bladder’s working and how you prostate sort of, to an extent also, in turn, the kidneys, depending where you’ve eaten during the day as well can affect sort of your salt levels.

Me: Very,, very little. Yeah, yeah. I think we’re gonna have to find another explanation for that. I think it’s something within the body. It’s not. It’s not my intake of food or…

Doctor: Yeah, the kidneys try and regulate things during the day and over the day. That may be why you find those symptoms, sort of get that variability. Each day even they don’t change too much. And that’s why even though those things stay constant, you find that you’re urinating some nights quite a lot while other nights not doing much at all. And it’s sort of how they’re functioning. may vary a little bit, even though what you’re eating and what you’re drinking aren’t necessarily changing. 

Me: Basically you’re just trying to tell me that, what I’m experiencing is nothing serious at all. Nothing to worry about. We’ll test for this. I mean, that’s really what you’re saying, isn’t it?

Doctor: No, what I’m saying is, this is a good approach to start with of how we can test for these symptoms. And then we can proceed forward as we find as things crop up. And this is a good starting point for us to try and address….

Me: Just as a matter of interest. I went to see my TCM,  Chinese medical practitioner who was also my teacher. That’s why I’m able to talk about some of these things. And he he said immediately kidney 

Doctor: Mmm, Yeah, not prostate … Kidneys. Like if you’re getting troubles with your kidneys like you can get all sorts of physical symptoms sort of like as fatigue, weakness,

Me: Fatigue? Fatigue is the number one thing I feel I’m just fatigued and sick all the time. This is what I’m trying to explain but you don’t …you’re just treating it as if, as if it’s just a one off occurrence. It’s not. Why am I talking about the kidneys because there’s something that’s majorly throwing my body permanently off kilter. And it’s, you know, I mean, it could be could be as simple as a prostate  – I doubt  it. I certainly don’t think it’s a urinary tract infection, although that might be a that might be a temporary factor.

Doctor: Yeah, and I think with the kidney sort of thing, from the previous tests you’ve done, there’s been nothing obvious

Me: I have to say, that I’ve gone through. (I mean, you must have had a wee look at my file), and since my doctor, . William Crawford left, I felt that I’ve been just, completely, not taken seriously in any way. Anything that you’re saying, you’ve got a rather steep curve. You’ve got to kind of prove yourself because I’ve had people assuming that I should be kind of respectful and everything else. And I think you can hear in my voice, I’m not disrespectful. I’m just, I’m just looking at for my own interests.

Doctor: And it’s sort of just trying to work together to try and…

Me: Well, I’ve tried working together – It hasn’t worked. So as I say, you’ve got got a steep curve. So, so having those tests…  and and how what would you do for for the prostate. Do you do a physical examination?

Doctor: is you can do that and you can feel if the prostate is larger or not. It won’t  necessarily give us an accuracy about whether the prostate affecting urine flow.What we cannot trial, there is two options for you. One is attempting medications, which I don’t know, may not be…..

Me: No. I’m not taking any medications until I get a firm diagnosis. 

Me: I’m taking medications. I’m taking Chinese herbs and seem to have worked to some degree.

Doctor: And the next step would be sort of attempt at sort of what we call uro- , looking at some flow dynamics, studies and sort of getting you to sort of pee on a toilet which has a special sort of flow meter and looking at how fast you can release urine and potentially doing an ultrasound to say what your bladder would base all of the steps to try and get a more formal….

Me: Okay, well, I’m I’m all in favour of all of that, but I want those tests. done first net, that, that includes the kidney functio., , I’ve got a question with regard to that. How is it with testing at the moment because I saw a headline saying that everyone was walking off the job on Monday – that’s today, so is testing going on?

Doctor:For which  lab testing?

Me: The lab testing I mean.They are paid just over the minimum wage.

(Long pause)

Doctor: …Collection didn’t have lab workers going at collection centers and labs in Wellington, Hawke’s Bay sharing. Assuring there is no action Wellington hospital is still progressing… is closed till  Tuesday the 18th and the hospital and Lower Hutt will be open today.

So can I get a script from you today?

Doctor: Yep. I’ll put through the testing form now. A urine and blood test fund for a urine infection issues on there. What I can also do with the urine is just see if there is any protein or anything. That gives us a really good marker if there’s any troubles with the kidneys, because that tends to flag …

Me: …There’s something to do with albumin, is that’s right? 

Doctor: Protein and albumin. We can do a bit of them both, they’re both subtle markers.  I’ll do a PSA as well  If  they are high or concerning we’ll have to refer you to the urologist to consider cancer or something like that.

Me: I just have to explain for myself, that actually the worst diagnosis would be better than no diagnosis. I’ve gone  for 12 years without anything substantive being decided and various people have tried that they’ve failed, you know? I’ve been to the neurology department  Earlier, I was diagnosed with sarcoidosis. So you know, something’s going on.

Doctor: I think this is a good way to sort of, like get started off with, urine symptoms that can today, so tiny sort of, you know, a part of your troubles but let’s start. 

Me: Okay, well, thank you. That’s that’s kind of a way to kind of improve the reputation of the Center, pretty low.

Doctor: I’ve put through the form. So urine and blood, as we’ve mentioned. Hutt hospitals Wairoa Road, the one near Les Mills gym, is also open. And then we can sort of….progress. And I can go to the Petone one because I prefer actually to go over really first thing in the morning and not have too many people aroundYou would have to go Wednesday then.

Me: Not Tuesday.

Doctor: On the dates wrong, so no, you could go to Petone –  yet that’d be fine. Okay, well, I’ll probably do that. I’ll probably go tomorrow, first thing.

Me: Yep. You’ll be fine.

Me: Okay. And in terms of follow up with you?

Doctor:I think we’ll get these tests. And then, depending on what they show, we can say catch up in two weeks to a monthand have another phone call about  it well, Wouldn’t it depend on what the blood tests show and how can I find out? I’m not going to wait for another month. I don’t want to wait for another month to find out what the blood tests show showed. Now Gee, I’ve managed my health or not I don’t even know what that is. Okay. Okay. What I can do is just text you through the results, or…

Does that work for you? 

Me: Yeah, that would that would be great. Just by email or something.

Doctor: Yeah, I can send those through that way. Manage My Health says their new sort of online thing. The Ministry of Health is setting up such that you can look at through your own test results and stuff.

Me: Along with everyone else present. If it’s all hackable and kind of, you know, but anyway.  I’m rather averse to sort of centralized things. Yeah, sure. I’d rather have the relationship with my doctor, not with the Ministry of Health.

Doctor: Yeah, so I can email the results. Yes, that would be good. 

Me: Okay. Well, thank you very much for your time. 

Doctor: All right. 

Me:  And, should we come around to get the script and when the scripts and when?

Doctor:The tests they’ve gone electronically to the lab already. So all you need to do is turn up to the lab. I see so I don’t need to take anything with you, just your name and your birth date. 

Me: Okay. Great. Okay. Well thank you very much James.

Doctor: I’ll see you later Robin