Cystitis and the feeling of doom

[SkaSkaSka]

Got another bout of cystitis and I feel genuine, horrible doom. Doom that I will never feel well again and the antibiotics won't work and I'll get the sack for taking even more time off work and everyone will think I'm a massive baby with 0 pain threshold.

Please reassure me that I'm not the only one who can't cope with life when this happens? I've just laid in bed and cried for 2 days. Please send positive recovery stories (I know I will recover but my negative thought cycle is spiralling.)

Feeling for you.
Saw some articles recently about some GPs working to get chronic cystitis properly recognised and that dip sticks are often wrong.
D Mannose works on e-Coli only - most frequent bacteria in UTIs but others cause it too. Be careful of ibuprofen as can irritate kidneys

Hmmmm @Redcherries that's interesting to know. How is the HRT working for you? I am so anxious all the time I have no idea how I manage my life. Also super super irritable.

D Mannose is a game changer for lots of people. Had the worst bout about three years ago which went to my kidneys. Got D Mannose and i’ve never had one again. If I feel even the slightest tingle I take three and nothing further has ever developed.

I'm with you OP. First sign of cystitis and I just cannot function at all. I'm the same with a headache, even a tiny one.

Other sources of pain somehow I'm alright with though.

Nothing helpful to pass on, but you have my sympathies x

My sympathies. Recurrent bouts of cystitis have blighted my life at times. Once I had one infection I then seemed to keep on getting them. I once got barred from a walk-in centre by an unpleasant nurse who was angry at how many times I'd turned up for antibiotics. I also recommend D mannose. I took it daily for several months and stopped getting infections for a while. I'm pretty sure my GP told me that they don't use trimethoprim any more due to bacterial resistance. There was an article in the Guardian a few years back about a specialist in UTIs who said that bacteria from one UTI embeds itself deep in the bladder wall and then as the bladder sheds its layers over time these bacteria which have been dormant now come to the surface of the bladder wall and become active again. This is why when you get one infection, you then get more and more of them. I can't find the article. I think he may have been called James Malone Lee (his name has come up on my Googles).

I get recurrent cystitis so mostly just wanted to send sympathy. It’s awful isn’t it?

D Manosse has genuinely changed my life though. I’d definitely try it. I take two before and after sex and two three times a day if I ever feel the slightest sign of cystitis. From getting infections 2-3 times a month, I’ve only had one infection all year so far.

Just curious why you say the d mannose tablets are vile? I have some and you swallow them therefore nothing to taste bad.

FYI to anyone interested D mannose is a kind if fruit sugar supplement so be aware if you're watching your sugar intake.

I think this was the article.
In pain all the time

Hiprex has been a life changing drug for me and has recently been in the BMJ as it works as well as low dose antibiotics but no resistance.

You are not alone. My uti anxiety was created by doctors - who terrified me by making me feel like asking for antibiotics was unreasonable, and that I was wasting their time. Or making me wait, suffering several days to see them. I spent years going to emergency walk in centres. But, I am prone to UTIs, and now, the second I feel one coming on I take my choice of antibiotics (which are stockpiled in my house at all times - as I get them off the internet, when I don’t have a UTI).

You’re not alone, I find them utterly excruciating - I am entirely unable to function. But, decent antibiotics do work. I find nitrofurantoin highly effective. A dr once told me that trimethoprim is useless in fighting UTIs.

You’ll be better very soon, then it’s time to continue your recovery - be kind to yourself, rest, drink water, chill. It’s a very nasty infection, and is completely underestimated and overlooked as and issue for ‘silly women’

Another one coming to say D Mannose it changed my life. I had one that instructd a maintenance dose and infection dose

D-mannose game changer for me too! I take a tablet after sex and again the morning after and I've not had a problem since which was just unreal! I started midway through ongoing hospital investigations which I felt were pointless because it was always after sex so not a strange underlying cause to it

The pills are massive so if you aren't good with pills go for powder

You have my sympathies, i get UTI so often i have nitro on my repeat prescription. It is very much correlated to any sexual activity, even with urinating before and right after. I was unaware it could cause nerve damage though, now i'm a little worried how many times a year i typically need them.

Hi OP, hope you feel better soon. I'm 53 and have been prone to cystitis my whole life. If I have just one day of not drinking as much, I am guaranteed an attack. My worst years were in my 20's,working on busy wards, with no breaks. I saw a massive improvement when I made sure I drank a pint of hot water with breakfast, a pint at teatime, and a pint before bed. This habit meant even if I got no breaks, I was still getting reasonable fluids. I now start drinking pints as soon as I feel the slightest twinge. Sometimes I'm sitting on the loo, getting pint glasses passed in to me 😂It works. I've no idea why I'm so prone. I actually have fears of being elderly and unable to tell people they need to flush me out, before I'm in agony.

I totally agree. Had to keep going back and back to the GP to say no it hasn't cleared etc etc. Eventually the nice GP (my named one) referred me on and I got a lengthy course.

Mine is sex related too. Currently just avoiding that issue and hoping HRT will help in the longer term.

@WhatASmashingBlouseYouHaveOn the pills I tried were vile. Can’t remember the brand now but they were huge and I couldn’t swallow them whole so had to crunch them. I much prefer the powder form.

op - sex is / was the trigger for me too. I’m very paranoid about hygiene and I take some d-mannose afterwards. Seems to be working - can’t remember my last infection.

I get them constantly, after some medical poking about in me, they discovered I was born with a short urethra making me prone to them, sex, hot baths, tampons even can cause them.

I feel for you they are awful. I'm glad I work in a women's only employment because everyone just understands how painful a UTI can be and nobody thinks anything about me being in agony.

All I can do is pee before and after sex, avoid tampons, and pee before and after a hot bath on the rare occasion I take one to try and avoid them. But sometimes they just seem to happen for no reason that I can think of.

Hope you feel better soon OP.

Ah I see, that's understandable then. I have bought Swiss BioEngergetics brand which are on amazon, they are in soft pill form and no bigger than a normal sizes paracetamol or ibuprofen tablet.

Oh the UTI doom is real. I get awful anxiety the instant I get the first twinge. I've had 10 years of recurring bouts of varying degrees of agony. Always triggered by sex or stress. Think it is interstitial as antibiotics stopped having an effect, samples didn't always show infection but my god the symptoms....

It did improve for a couple of years after coming off the contraceptive pill, as well as returning some sex drive which helped! Nitrofurantoin after sex helped for a bit but eventually stopped working.

I've also recently given up caffeine. Although it hasn't stopped them (4 or 5 periods of symotoms since November), the pain when I do have them is noticeable more bearable and seems to be clearing up quicker. About to start D Mannose too now I've had a few months off the caffeine to see if further benefits.

How much D Mannose are you all taking?

A few PP have mentioned D Mannose. Could I ask which to get as there are soooo many on Amazon and H&B. Any recommendations (I need veggie/vegan capsules though) gratefully received as I'm currently suffering from my 8th UTI in 6 months and desperate. Thanks.

Yes!
And this one. Think I heard the GP in this one on R4 Women’s Hour talking about better ways she uses to test for and treat UTIs in kids and adults
inews.co.uk/news/chronic-uti-children-denied-treatment-losing-childhood-urinary-tract-infection-1540249

Bless you, I wish I could give you a hug. I've had problems for 30 plus years with my bladder. I also get that awful feeling of doom. When it happens I panic that it will never go away. It's just awful isn't it. I go into full-on panic mode. Like others, I take D Mannose. I take a small scoop of the powder in hot water first thing, also one before bed in hot water. Before sex, and after sex. It's expensive but genuinely does help. I get mine from Sweet Cures. Please know you are not alone. There are many of us suffering this debilitating condition, and also get fobbed off.

Another recommendation for the awesomeness that is D Mannose. Discovered it when I was living in France and it is indeed a game changer. I've used the Femmanose and Lucovital brands - got the latter one in Boots in tablet form but you dissolve the tablets in a glass of water and then drink it, rather than swallowing them. The Femmanose is in powder sachets.
Btw, in case this helps anyone, aside from the normal run of UTIs that D Mannose helped prevent/relieve for me, I had a year of constant UTI flare ups and terrible cystitis pain/discomfort that gave me the doom feeling - nothing came up in tests, even had a pelvic scan. Turns out the cause was gabapentin I was on for back pain from a slipped disc. As soon as I came off the gaba, the pelvic pain and UTIs stopped completely, I still take the D Mannose occasionally if I feel one coming on but basically fine.

And Skaskaska sorry you are so poorly. It's really shit isnt it. Hope you feel better soon.