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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

UTI despair

75 replies

Newnewnewnewnre · 21/07/2022 22:14

Posting here for traffic.

Chronic UTI since January this year.

Under the care of the Malone Lee team at Harley Street. Taking trimethoprim (only one I can take) and hyprex. So receiving the best of care. I was told it was a slow treatment. I haven't got the time.

I cannot take it. The urgency has got worse and worse. Through the day and night. It's like water torture. My mental health is as bad as it could be because I am sleepless, agitated and despairing. It's really hard to write this and string sentences together.

I have children and I'm not involved in their lives properly at all. Just living minute to minute. I can't deal with it the constant urgency. I'm mostly in tears. I hoped it was just a flare up that would ease but instead it's got worse over a period of a month.

Has this happened to anyone else. Did you survive it.

OP posts:
Toddlerteaplease · 21/07/2022 22:18

How do you know you are getting the best care. Just because you are paying for it doesn't mean you are. It's clearly not working for you. So I'd be seeking a second opinion.

ohmygloshes · 21/07/2022 22:20

Poor you, it's the worst. I suffered on and off for years. I drank four litres of water a day (not kidding) and took D-mannose which you can buy at a health food store along with all the prescriptions. This did the trick. D-mannose is amazing for me and I still take it everywhere with me just in case, even though I've not suffered for a long while now. Good luck, I really hope you heal quickly.

Original poster
Newnewnewnewnre · 21/07/2022 22:21

toddler Everyone swears by Malone Lee.

Oh my Thank you, I'm taking D mannose. Happy it worked for you.

OP posts:
Scianel · 21/07/2022 22:22

Can I ask why trimethoprim is the only one you can take? It's not one I've ever managed to clear a UTI with.
Also, you're taking it long-term you need to supplement folic acid as it will flatten your levels?
I agree D-Mannose is a good call.

BlueMumDays · 21/07/2022 22:23

Drink drink drink. 4l a day as above, try to only drink water. Wear incontinence pants/pads if it makes you feel more secure.

What tests have you had to rule out over active bladder?

polkadotpixie · 21/07/2022 22:25

I had terrible trouble like this that started after a UTI and it turned out my pelvic floor had gone into spasm and was causing the symptoms. Can you see a pelvic floor physio?

Penguintears · 21/07/2022 22:25

I've had this and needed two weeks of a really strong antibiotic. I think it was ciprofloxacin which they only prescribe in serious cases. Trimpethoprim has never ever cleared any of my UTIs and I have had a LOT. Are you sure it's the only one you can take?

Original poster
Newnewnewnewnre · 21/07/2022 22:27

Trimethoprim is the only one I can take because the other antibiotics that my UTI is susceptible to aren't tolerated when I take them. I react badly to antibiotics. Breathing difficulties with nitro, swelling with amoxicillin.

Taking folic acid thanks.

Kidney scan was normal. Harley Street doesn't like cystoscopies unless symptoms are present that I don't have like blood in the urine.

OP posts:
Original poster
Newnewnewnewnre · 21/07/2022 22:30

Trimethoprim and hyprex together apparently are supposed to make trimethoprim much much more effective. I haven't seen it yet.

After having a rare reaction to nitrofurantoin I cannot bring myself to take cypro because the rare adverse reaction to that one can cause permanent damage to tendons and nerves which I already have a problem with.

Sorry I don't mean to shoot down help.

OP posts:
Scianel · 21/07/2022 22:31

Do they think you'll have the same issue with cephalexin if you've reacted badly to amoxicillin? That's the one I always found actually worked but appreciate it's difficult if you're struggling to tolerate them. Do yourself a favour and don't take cipro anyway.

UTIs are such weird things, they really are.

I'm glad you're taking the folic acid, no-one told me about that.

Original poster
Newnewnewnewnre · 21/07/2022 22:32

polka I was thinking about going to set a pelvic floor physio and then remembered how much worse sexual contact had made it and I got scared it would make things so much harder.

OP posts:
TulipVictory · 21/07/2022 22:32

You probably take these already but have you tried the triple strength cranberry supplements from Holland and Barrett. If you read the reviews you'll see they've also made such a difference to hundreds of people x

UTIsympathies · 21/07/2022 22:32

I am in the middle of this too OP. But not for as long as you.

Been going on since the beginning of June. I'm also limited with which antibiotics I can have.

I'm now on Cefalexin which is the 5th one I'm trying....each time the symptoms reduce then come back full force once the course is over

I am awake now as I urgently need to pee...

I've also been referred to a urologist for scans etc as my urine has had blood in it (but the mini pill has had me bleeding since May so reckon it's period blood).

They've put me on the Cancer Pathway which has me very nervous but I'm hoping it's just a means to be seen quickly.

You have my absolute sympathies OP. It is horrendous

For those who swear by D-Mannose, where do you buy it from? I've just googled and there are lots of different types and strengths (sorry to hijack OP!)

Scianel · 21/07/2022 22:34

For those who swear by D-Mannose, where do you buy it from?

Sweetcures as it's one of the original ones, actually made from birch not maize. Not the cheapest unfortunately. I order it direct from their website and I find the powder is better than the tablets.

Onthedowns · 21/07/2022 22:34

Toddlerteaplease · 21/07/2022 22:18

How do you know you are getting the best care. Just because you are paying for it doesn't mean you are. It's clearly not working for you. So I'd be seeking a second opinion.

Exactly this. I do believe a lot of people believe this clinic is the fix for all bladder issues. It simply might not be working 7 months later. I suffer IC and HRT diet etc have helped my bladder immensely.

I have young children too so i know what it's like

Penguintears · 21/07/2022 22:34

Yes Cephalexin works for me too.

I also get the chest pain'/tight chest with Nitrofurantoin. I didn't have any problems with Cipro but I can understand why you wouldn't want to risk it.

Are there any IV antibiotics you could try? I had this when I was pregnant with a UTI and couldn't take any of the usual antibiotics. I think I was in hospital for 3 days on an IV drip.

UTIsympathies · 21/07/2022 22:35

Thank you @Scianel . At this point, I'd pay anything for some relief!

Original poster
Newnewnewnewnre · 21/07/2022 22:35

scienal I did try cephalexin and was determined to make it work but I was literally writhing with stomach cramps and heartburn. I couldn't breathe. I have IBS and have to do the elimination fodmap diet, don't know if that makes it more likely to be a problem.

OP posts:
Snoooozzze · 21/07/2022 22:36

So sorry you are suffering so much Op💐

Have you had any further investigation? Cystoscopy etc? I would be insisting on getting further checks!

I've suffered from persistent utis for my entire life and was diagnosed with failure of the GAG layer within my bladder which was leading to inflammation and subsequent infection in my bladder and urinary tract following my last cystoscopy. I have monthly hyacyst instillations through a catheter and I haven't had a severe infection for over 12 months now! This could only have been discovered via further investigations so I'm glad I pushed so hard for it!

Penguintears · 21/07/2022 22:37

I also saw a women's health physio for a tight pelvic floor as the chronic pain from UTIs had made my unconsciously tighten everything against the pain. I can recommend a really good physio in London if you're interested.

tinylittlecaterpillar · 21/07/2022 22:38

I'm on hiprex too.
Went from one uti a month to having one uti in the last 6 months.

NrlySp · 21/07/2022 22:38

Have you have a camera scan of your bladder to check it? So sorry you are having these problems 😞

Scianel · 21/07/2022 22:40

I also saw a women's health physio for a tight pelvic floor as the chronic pain from UTIs had made my unconsciously tighten everything against the pain

That's a good suggestion, I actually found some quite useful stuff on youtube that helped me.

Re. the cipro - I was unfortunately given loads years ago as the GPs at the time didn't seem to be that aware of the risks. I was fine with it until I wasn't, it seems to do some sort of cumulative damage and you hit a threshold. I'd honestly advise anyone to steer clear unless you're about to die of sepsis and literally nothing else will work. Definitely not for long-term usage anyway.

Original poster
Newnewnewnewnre · 21/07/2022 22:43

penguin I was refused IV antibiotics because I'm not sick enough.

UTI sympathies Thank you, if the infection is returning so quickly it may be that you need a preventive dose over a longer period? That didn't work for me but works for many. Highly unlikely to be anything more serious x

Onthedowns I'm sorry you have issues too. I've only been with HS for around six weeks. I've also heard that HRT can be helpful in some cases but I'm not sure the IC diagnosis would lead to better care for me as there doesn't seem much treatment. HS seems to have helped a lot of desperate women but I don't know how they last long enough to get there. The e coli cells take 3-6 months to mature and come away gradually I'm told.

OP posts:
Buzzinwithbez · 21/07/2022 22:44

I had recurrent cystitis from 13 to my mid 20s. Eventually I found what worked.

  • an exclusion diet, then slowly adding things back in. - milky drinks and sugar were big triggers - probably in part because I was in an antibiotic, thrush cycle. But I was reacting to so much I needed to take nearly everything out to untangle it. I lived on chicken and veg for a bit but saw vast improvement within a month.
I had to stop having food that drink that were contributing to inflammation and let everything heal. D- mannose - this works for e-coli. Do you know what the bacteria is? It's a tricky bacteria to get rid of and d-mannose helps to disrupt the biofilm.

Supplements - many aimed at bringing down inflammation and letting the bladder wall heal. Probiotics, prebiotic food (onion, garlic, asparagus, leek), omega 3 fats, pycnogenol, magnesium.

Counter intuitive, possibly, but having a big glass of water before bed so that I still had plenty of fluids to flush everything through.

Prior to that I was in and out of the bath all night and hardly sleeping with the discomfort. It took a month to get my life back and 11 months to heal completely (possibly less and not forgetting I'd had this 11 years!) and I've not had any recurrence in 20 years.

In the beginning, although I take as few drugs as I can, an occasional anti histamine at bedtime to bring inflammation down and help with sleep.
There are also many anti histamine foods, including nettle and omega 3 fats.

Hope this helps. It really can be a hideous thing.