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 had symptoms and no infection after a year of consistent infections. My bladder was just badly scarred. I had to change my diet. Drink loads of water and take cystitis sachets to relieve the symptoms for 6 months whilst the scarring went.

NICE guidelines here https://www.nice.org.uk/guidance/ng109
GPs should usually be following these.

I'm not saying OP is a fantasist, I'm wondering if she suspects infection when it isn't there, which is why the 5x/year antiBs aren't effective and the 9/10 dipsticks come back negative. OP's anxiety about infection risk must be high, and she may fearfully be locked into thinking she must get x treatment.

Interstitial Cystitis was an example given of a condition that gives similar symptoms but antiBs (I imagine) don't fix IC. Most mild infections will clear by selves anyway, even if horrible experience in meantime, so after 2 weeks the antiBs might seem to have fixed 'it' but actually 'it' was already clearing up, and that's because mild infections self-clear and maybe 'it' was never an infection at all.

I can understand raising Merry Hell over 2 lost referrals, but again... that seems bizarre. Is GP lying when they tell OP she had a referral? Does OP ignore letters inviting her to appointments? Does OP's referral get rejected? Is OP mistaken and she never got referrals at all?

I don't know OP but I do know people get confused and forget information or don't act on information they were given or simply can't absorb all the information in stupidly long health letters (all especially easy to do when ill) and leave out important details in their story, too.

I have vivid memory of friend's mum, diagnosed with life-limiting illness, insisting to her family she had never had this letter or that letter or this treatment offer or things explained to her. Her family complained loudly to NHS. After she died, her family went thru the mum's paperwork & found loads of letters offering treatment, appointments, etc. The mum had been offered and explained to, but she was ill & masking & confused. Never under-estimate how confusing life is when chronically ill.

@lljkk so you're suggestion is that the OP is making this up and a bit stupid and forgets appointments.

Yeh it's 100% all in her head for sure. Medical gaslighting is alive and well.

I hear what you’re saying in the above response - but ‘And yet OP can hold down a job with all that untreated discomfort.’ didn’t convey any of that sentiment. I personally can relate to ricocheting from one infection to another over months and then years while trying to hold down a job at the same time.

And sadly, lack of referrals and then referrals that don’t go anywhere and referrals where you get substandard help when it finally does go through does not surprise me whatsoever. This is an issue that primarily affects females, and has guidance years out of date, and even when new research findings are published, doctors often don’t know about it. That’s if you can even see a doctor. It’s an endless miserable battle.

To further complicate matters, women often start off with recurrent bacterial infections that go over years, often resistant to different types of antibiotics. Then they get scarring, and then, after that perimenopause kicks in which brings along similar symptoms for different reasons. It’s a lifelong misery.

Actually, it’s standard practice for recurrent infections due to the risk of not treating causing severe infection. The antibiotic should be the one indicated by the previous cultures (often the same bacteria) and a referral should be done to investigate why they are recurring. In children, they would then have prophylaxis antibiotics (low dose daily) for several year to prevent serious, life threatening damage to the urinary system. I don’t know the procedure follow this for adults, but I’d assume it depends on the cause and the damage done by recurrent infections already.

Its not the reason for the antibiotics crisis.

My son had recurrent urine and kidney infections and nearly died due to diagnosis of the cause of the infections being put off and slow antibiotic prescriptions. The slow prescriptions meant further damage and hospital admissions. He now has a permanently damaged bladder and kidneys and is on a low salt/sugar diet. The OP is right to push for early antibiotics and for referral.

Actually I doubt the OP is imagining anything. Rather than having 5x infections a year, it’s likely to be one chronic infection which has never fully gone away due to under treatment via too short courses of abx. What she needs is a long course of ideally high dose abx. However this is off guidelines and the only place I know of on the nhs which will prescribe such a dose is the LUTS clinic in London.

you can ask to be referred to the LUTS clinic but I have a suspicion now that they only accept referrals from a urologist not a GP. When I got referred years ago it was much easier. In the mean time you can ask your GP for a prophylactic long term low dose course of abx such as trimethoprim.

ultimately if you have symptoms of a UTI then you have a uti. That’s what the late great Prof Malone Lee said to me and he was the foremost expert in the country on the subject. It’s well known that dip sticks and lab tests will miss something like 70% of UTIs. The best way to diagnose is looking through a microscope at a fresh sample but the nhs don’t do this. I was told for years I didn’t have a uti and as soon as Prof Malone Lee looked at my urine sample through a microscope he said it was clear I did. Oh and interstitial cystitis = medical gaslighting. Fobbing women off with a meaningless diagnosis. Which isn’t an actual diagnosis, just a name for symptoms which they still haven’t figured out the cause for because they can’t be arsed.

Look up interstitial cystitis, i have this condition and it's basically non bacterial cystitis.

I was this child in the 80s and it’s been life impacting. I feel for you and your son.

I feel your pain OP. I know my symptoms and left untreated while I wait for cultures the infection has often tracked to my kidneys, causing longer time off work and more pain. Kidney scans are clear. Sometimes lab tests show infection, sometimes not.

I last went to my GP with 3 specific requests:
For a Urology referral to understand the cause rather than the symptoms. (Agreed but i have been waiting since April)
For topical oestrogen to see if it reduces incidents (disagreed, apparently at 43 I'm too young and she wanted me to wait and see what Urology say..I'll fight that battle next time)
And in the meantime for a prescription I can keep at home and use as soon as my symptoms start. (Agreed and has renewed this twice. Not ideal but neither is lying awake on a Saturday night knowing you have to navigate out of hours the next day, or being on holiday and symptoms starting.)

It feels like a battle sometimes...

I think it was more a case of giving me antibiotics for now since they always seem to work when I have this issue in the past but that usually recurring infections could be due to inflammation so it needs to be referred and looked into in the long term?

Not helpful, as others have said I'm not forgetting nor am I mistaken with my symptoms. Don't know how many times I've had samples dropped and they have been tested, I guessed it would be around 4-5 infections a year which when I track it on my nhs app seems around that figure. Not 40/50 times. And no, I haven't misread or understood any referral, nor have I got confused by a big giant letter. I'm a typical working mother of three , with bladder pain that flares up throughout the year. I hold down my job just fine, battling through like I imagine the majority of us with things like this do as there isn't really another alternative. As others have stated medical gaslighting is a thing, and so ,it seems is Mumsnet gaslighting.

@Carpooler thank you. It was about 4 in the morning and I was in agony and angry so could have done without someone nitpicking at my post ! X

From what others have posted on here it's looking more likely it's interstitial cystitis, or potentially an infection that hasn't been given the time to be fully eradicated so is coming back. I'm going to be writing a letter to my gp to include all of this and the battle I've been going through to try and get some sort of help. Thank you to those of you who can empathise and offered support and help. It's really appreciated and helped me whilst I was in a meltdown in pain during the night. Hopefully I can push forward now and try and get some answers

@BridgeoverTW it really does 😢 I'm 33 soon to be 34 and it seems my issues have stemmed since having my first at 24 so could be it's from then who knows but I'd just like the chance to have it atleast looked into and something to be investigated rather than being pushed aside. Feels like a constantly battle doesn't it .

You do realise the GP themselves is unlikely to have dipped your urine? This isn’t a sexism/misogyny issue.

I hope you get investigated soon, it sounds like IC to me - persistent recurrent “infections” with negative dip and negative MC&S is unlikely, hence the reluctance to prescribe repeated courses of antibiotics without proof of infection.

With such long waiting lists after referral it’s frustrating all round. If you’re in a position to see a urologist privately I’d do that, even though you shouldn’t need to 😕

@Sidge yeah it's like a rock and a hard place but I'm tempted to look into going privately soon if after I've been in touch it doesn't really do much. Infuriating

Were you pissed or pissed off? Two very different scenarios
Unless your first language is american

I don't have time read whole thread OP but have a look at this thread. I had very similar, GP eventually diagnosed non bacterial cystitis and since starting vaginal oestrogen am hugely better with occasional flare ups due to fizz, stress, caffeine and sleep.

UTI Symptoms not going away & scared www.mumsnet.com/Talk/general_health/4850557-uti-symptoms-not-going-away-scared

I'd maybe read the post, you might figure it out. And unfortunately for me I can't edit a title as easily as you can a comment. Those pesky missing words can really change a sentence can't they?

Brilliant , thanks for that I'll have a read through it

Do you have the NHS app OP? If you look on this you should be able to see the referral so you know at least that the referral has been made and you will eventually hear, rather than wondering if it's actually been done!

Yes, I realised that being pissed at the doctor wasn't really what you meant ( altho trying to get an appt these days is an appropriate reason to drink!)
I hope the posters with actual common sense answers have been helpful and that you get this sorted soon.

I had what I thought were recurrent water infections. Turned out it was a drop in estrogen caused by the menopause. Vaginal estrogen cream has solved it x

Op, do the lab cultures come back positive for infection? Your GP practice definitely sounds quite poor unfortunately.