To be pissed at my doctors and complain

[Ladylalaboo1]

Could be being unreasonable because I'm in pain but I don't think I am! I am prone to bladder infections, specifically upper bladder, not urinary tract infections. Have about 4-5 a year, have asked to be referred a few times over the years but nothing has ever materialised. My issue is the same policy applies each time I ring and request antibiotics to help me with the infection. I have to drop a sample off which they test then they will give antibiotics. About 9 times out of 10 my dip stick result comes back as no infection, will send to lab, if I need any more help then to wait until next week and ring again for appointment, other wise ring out of hours over weekend. I knew this morning when I rang it would say no infection, so when I dropped my sample off during my dinner break I wrote on the slip my concerns that whilst I know the process, my sample would probably state it didn't have infection but that I know my own body, know these symptoms like the back of my hand, and have on occasion had kidney infections because I've not had antibiotics in time to help clear the infection, so could they please still prescribe me some so it doesn't get worse over the weekend meaning I have to waste my time and the nhs' by ringing 111 going to out of hours and getting antibiotics eventually when I could just get them straight away. 30 mins later text comes through no infection wait the weekend ring back in the week. I work in a school so was teaching and couldn't ring until after if finished which was too late so I'm now up in agony , as symptoms get worse and have just rang 111 and I'm waiting for an out of hours appointment ( 6hour + wait) for them to hopefully prescribe me the antibiotics. I just feel really let down and unheard. There's been articles recently about how unreliable the dip stick test is for urine infections ( less then 50% accurate) and woman are just routinely being ignored and not listened too. I'm angry that my notes from previous infections have been ignored and they have just don't the bare minimum leaving me in pain and for the infection to continue when I could have had antibiotics by now. I'm just fed up with it really and wish we as women were heard more and listened too. The doctor who tested my sample was male, which , isn't always the case, but I definitely think doesn't help when it comes to empathy and understanding the utter discomfort a bladder infection can bring. I'm just so angry and wish it wasn't so difficult to be heard!! So I think I want to just email the gp and complain, if anything , just so they can make a note and in future I or other women don't have to jump through hoops for basic medical care?!? The dip stick test was invented over 50 years ago has never been replaced or even changed slightly and is so outdated. Just wish I could advocate for myself easier 😭 sorry I know it's a tantrum I'm just in pain and it sucks to be a woman sometimes !

I think you need a referral rather than antibiotics 4-5 times a year

This sounds awful

Have you asked where your referral is in the process?

My latest referral was done in August and was told I'm on a waiting list. Wasn't given much more information. I had a referral before then, however, I got pregnant had baby , life etc and I never heard anything and when I brought this up at August they had no record of this referral? I also had another one in 2019 but that got lost during covid. Feel like banging my head against a wall sometimes to be heard. I think it's harder as well because it's almost like a flare up and not a constant issue I'm not hounding them weekly as when I'm not in pain life just gets in the way so it goes quiet. I've had interstitial cystitis mentioned a few times and have been told various things from vitamins to take and dietary changes. Again nothing substantial enough to help make it any easier. You are right though I think I need to push for the referral again and keep on at them even when not in the midst of infection. I think I'm abit disheartened too and part of me thinks even when I get referred it won't do anything. Feels so hard

growing the sample on a Petri dish gives more reliable results but you can request this, although it takes time.

you potentially need a long term low dose of antibiotics to properly treat rather then half treat the problem.

write to the practice manager about the two previously lost referrals and ask them to confirm that an urgent referral is in place.

Out of hours gp just rang and he was more helpful in 5 minutes then any of my doctors have been in over 7 years! He's prescribed me antibiotics has told me the process now shouldn't be to test and only prescribe antibiotics based off sample but that's just an indicator but symptoms of bladder infection should supersede this and that should be what they give you antibiotics based off. Also said because I have recurring infections it can be due to inflammation of the bladder which has same symptoms as urine infection but isn't one hence not flagging up on dip stick. He said he's going to flag this to my gp and send a note through that my referral be urgent and to get that sorted! He was so lovely I'm so thankful. My antibiotics are ready to collect when my pharmacy opens. So will ring my gp on Monday to give my feedback about this and to also query the referral and hope
His note has had some effect!

Also this website maybe if support https://www.cobfoundation.org/all-you-need-to-know-about-urinary-tract-infection-uti

Yes will be doing this Monday, hopefully this time it won't be overlooked and I can get it all sorted. Just so uncomfortable and hard to adult when in pain! Life eh

That sounds positive!

Yes! I was pleasantly surprised id worked myself up and was ready to fight and he was just so lovely and listened! Thank god x

What he said was contradictory wasnt it?
If inflammation of bladder then antibiotics wont help (hence previous doctors advice to wait itil infection confirmed)

That confused me too! So is there an infection or not?

Im currently waiting for my urology referral (different reasons). After hearing nothing for 7 mths from my initial referral I decided to get re-referred to another hospitalhopin things would be sped up but that’s a 7 mth waiting list.

I empathise OP.

While you’re waiting for your referral, have you tried D Mannose? It sounds a bit silly but it’s basically a natural sugar that is supposed to prevent bladder infections by making the environment in the bladder inhospitable to bacteria.

I used to get a lot of bladder infections and was sick of taking antibiotics so started taking D Mannose when I felt something coming on and it really worked. Cleared up the infection before it really started.

You can take it in high doses to treat an infection or in low daily doses to help prevent an infection. I’m not one for alternative medicine generally but this does have some scientific evidence behind it.

I am prone to bladder infections, specifically upper bladder, not urinary tract infections.

Are there some typos in this? It really doesn’t make any sense as it stands. What is it that you think you have?

"About 9 times out of 10 my dip stick result comes back as no infection, will send to lab"

I am wondering how many times/year OP gets tested but doesn't have an infection, then. 40-50 tests a year? I've never had a test in my life.

And yet OP can hold down a job with all that untreated discomfort.

A bladder infection is a urinary tract infections. UTIs are an infection of anywhere in the urinary tract from the kidneys down. Are you confusing matters. by saying you have pain that's definitely not a UTI when it is?

Hope the referral goes well and it gets investigated/ treated.

She said 4-5 times a year but it looks like it's been happening over a number of years.

We have to contact our GP via an online portal and I’m sure they read the first sentence and totally ignore the rest of your enquiry.

Ah, I thought OP was saying she never gets any treatment for 9/10 of these tests, but rather what she means is that the infection gets confirmed subsequently, every single time, after all, by culture method?

And that takes an extra week or so, doesn't it, for the culture to grow, and for the antiBs to be issued. And then 1-2 weeks on antiBs each time. But by then the OP must have lived with the symptoms for 1-2 weeks typically. So that's 5x3 = 15 weeks a year dealing with the infections.

They must get info back about which bacteria it is. I wonder if it's an antibiotic-resistant super bug.

OP have you looked up or been told about IC, it's interstitial cystitis and sounds exactly like you describe. Does your bladder feel kind of itchy and swollen? Almost like someone put knives in it?

I also have tracking kidney pain but that's due to a valve that goes into my bladder that's narrow and the valves sometimes flips the wrong way. Only ever on the one side, but a very familiar feeling.

You really need an internal camera, scan check the health of your bladder, check valves and physical and visual checks. Can you get this privately find a local urologist. The NHS are shit with this condition as it's deemed chronic, it's also not even remotely painful, I was surprised it ached a bit but I travelled home from London immediately after.

The antibiotics I will guess are not the best cure.

You may need to read about diet and trigger foods, for me tomatoes flare massive, peppers and red wine. I found this out via an elimination diet and now get maybe 1-2 flares a year. I believe it's the nightshade family.

Take anti inflammatory when it goes, that helps.

I take daily anti histamines also helps massively.

I also make sure to double void, I think that's what it's called, when I wee I sit after I've finished and kind of push more out, always for me there is a bit more my brain to bladder connection is much better for this as I suspect my whole life I've never fully emptied my bladder.

If it's bad constantly then amitriptyline would be prescribed it dulls the nerve endings, it's an old antidepressant but being used for bladder and nerve pain, for me it worked but made me so so sleepy I came off it. Loved the sleep fur a while though.

I hope some part of this helps. I'm now 48 and about to start using the vaginal oestrogen as well as my HRT to keep my bladder healthy and on track.

Sorry also meant to add, you can buy antibiotics online now, so take a note of the name and save yourself the GP drama.

Essentially own GP won't prescribe the abx until infection actually confirmed, asked for and got abx from out of hours GP who also explained it's likely a non-infective cause. Both doctors effectively agree but one has prescribed 'as a precaution' which is why we have the abx crisis we have.

Unhelpful. She’s in pain, chronically, with a common condition. And you’re nitpicking and being sarcastic (as usual). This is hardly a troll situation FFS. I imagine it feels endless to the OP.

OP- you sound like me!
I was eventually diagnosed with Interstitial Cystitis, so my immune system wrongly attacks my bladder and gives all the signs of a UTI- leukocytes, protein in pee, pain, frequency etc, but no actual bacteria.

There are things they can do to help this. Please ask to be referred. It was only after a locum doctor looked on my record and saw I’d been given 20 lots of antibiotics over the years, despite there being no bacteria present that I was sent to a specialist!

Definitely write an email to the practice manager and ask what can be done.

Not in this case, it’s actually pretty well known at this point that urinary bacterial infections often do not show up on initial dip tests.

It’s actually disgusting to me how OP is being pulled apart in this case. She’s mentioned the word inflammation, but I expect it’s likely that she’s referring to embedded bacteria in the wall of the bladder. Honestly, I don’t know where people get off with responding to threads like this in this way. It’s one of the most painful chronic conditions and it’s horrific when you can’t get help for it. When you know what’s wrong with you and what is needed to resolve it and yet you get ‘test is clear’ as if the problem is solved and you haven’t been glibly left basically feeling like you’re on fire.

What's not clear is if every time the GP correctly sends a sample to lab for testing, is there proven bacterial growth?
If there isn't then sorry OP but this is not a urinary tract infection and no you shouldn't be having antibiotics.
Your GP is practicing good antibiotic stewardship