Non shifting UTI - feeling very low and could do with some support

[summernotwinter]

Help much appreciated.

I have now been trying to shift a UTI for two weeks after a delightful 12 year hiatus from the wretched illness. I have gone onto HRT this year and think perhaps the gap was explained by not being on the pill anymore.

I had three days of macrobid that didn't work and allowed the infection I think to get more bedded in. I am now on day 6 of a 7 day course of trimethoprim. My wee is clear now but I still have urgency and burning and the pain is just....beyond pain I have had with UTI before, in my urethra not my bladder so much. I am not at work today and have struggled so much over the last two weeks to function.

Things I am doing:
D Mannose (no difference noticed)
Sachets when the wee gets too stingy
Drinking two litres a day (GP told me off for drinking more than that and said it could be dangerous)
Mixing paracetamol with nurofen according to the GPs guidance.
I dont drink coffee and defintely won't be drinking wine/booze
Following all the diet info I've found online
Heated sacks
Trying antihistamine today from some forum advice.
I've been prescribed topical estrogen cream but I still have periods in spite of peri and am ovulating with loads of CM at the moment so can't see that is needed (and as the instructions say it can cause vaginal irritation to begin with, I am a bit loathe to start it just yet..)

I called the GP after the end of the 5 day course of trimethoprim and they gave me two more days worth, had a sample which of course came back clear, as I'm on antibiotics and drinking a lot. They said I could have codeine but nothing else - I don't respond well to that. I cannot go in this much pain so there must be something?

So - as someone with quite acute health anxiety I have gone down a right warren hole, decided this could be IC and the outlook does not look cheery. Can it come on like this from one UTI? Has anyone else had this stubborn not shifting thing and got better? Because I haven't read stories where people have or the threads just end with no resolution! I promise to update this thread so it has an ending!

Also, trimethoprim: I feel very out of it, have no appetite whatsoever and very very down. Normal?

Nice to come in and see some posts.

Bladder issues are crap! I'm so sorry to hear that some of you have had this for so long and that long term antibiotics are only helping for as long as you take them. This is something I don't understand - and yes yes the bladder is annoyingly complex. I want to see more people who went to see Prof Malone and were totally cured. But maybe if it lessens symptoms for people that's enough. But antibiotics mess me around so terribly. It does seem that the 'embedded infection' and 'interstitial cystitis' camps are quite divided and it would be interesting to see more nuanced critical exploration of both schools of thought. I think I've read the entire internet on it all.

The link with anxiety and the bladder is really interesting and I do think it's all wrapped up with me and mine. How is there not better treatment?

I'm a week off cephalexin now and I don't feel symptom free. I have way less frequency and urgency but it all feels.... sore? And still weeing in the night 2-5 times. But was a bit before this all started PERI I HATE YOU it doesn't feel like a proper UTI. It just feels a bit broken.

I am so bloody tense down there it feels like my whole pelvic floor is in freeze. I'm a bit worried every time I go for a wee that the UTI will have pounced once more. Having not grown anything even with a pricey broth culture I am leaning into thinking that mine is a combination of:

Vaginal atrophy
Hypertonic pelvic floor
Anxiety

Not sure it's going to be easy to put that all right quickly. Meh.

And yet the 'embedded infection' issue is a wolf in my brain. It feels unlikely with no bug seen and I went onto antibiotics quickly, first UTI in fifteen years. It's such a mysterious horrible thing and it doesn't feel like I'm going to wake up one day and it's gone. So, all started end of October and here I am now a worried mess, not drinking, sex off the table and on amiltriptiline. Aghhh.

I would like to just feel normal like I was in October. When bits of us with a lot of nerve endings go wrong it's not fun At All. I am thinking of setting up a challenging bladder thread for moral support.

To anyone reading this tearing your hair out - I promise I will keep my story updated. And you aren't alone. My GP said he has at least one woman a day with a non shifting UTI

I had 'IC' for 12 years (of hell). Am now about 95% better following long term antibiotic treatment. I would say don't panic yet because ovulation often coincides with bladder symptoms flaring and if you've had a UTI things might just be settling. If it doesn't subside, there are measures you can take to make sure it doesn't become a long-term problem. I'd also take the codeine if you can tolerate it- and be aware that ibuprofen is a bladder irritant for some people. Good luck, it's the pits

I met someone once in the waiting room At Prof Malone Lee’s clinic who’d had her bladder removed (before she found Prof) and that still hadn’t cured her!

@Ethelfromnumber73 thank you for this. Is that with Prof Malone? I am hoping this is all settling stuff. And meno.

@CovidCorvid I've read this too. That's so harsh are you coping ok day to day?

I see Prof Malone-Lee by the way. Have been with him for four years. I'm not completely cured as it occasionally flares a bit but I've gone from peeing 10 times overnight and been in constant extreme pain requiring tramadol and gabapentin to being able to lead a pretty normal life. My pee always dipped positive in the surgery and then didn't grow anything when cultured too

Yes, meno doesn't help either. I couldn't tolerate HRT at all though until my bladder was fairly well controlled. Oestrogen a massive trigger for me

Also @Ethelfromnumber73 codeine helps a lot. It's like it helps me relax my muscles. Bit worried about addiction but not entirely sure what that entails! It's helped settle my first cephalexin bowels too. Did my first solid poo a week after stopping them and it felt like progress. Two weeks I never got used to them and had horrendous runs. So that's a nice overshare.

I haven't worked (I'm self employed) since all this happened though I was closing down over Xmas anyway. I've lost a lot of confidence in terms of being able to go places and commit to things. I want to be by a toilet and with a heated sack and the only way I can get my pelvis to relax is putting my legs up the wall. It's permanently rigid. I have history of abuse so it's all like a perfect storm. Im also scared not to drink lots. I'd love a fat glass of port.

@Ethelfromnumber73 interesting about the estrogen. This has happened 10 months into HRT. Do you used topical estrogen? Sorry for all the questions.

You need a culture to be grown to see what it is

I used to have constant UTIs and the one thing that made a difference (I tried ALL of the things you said except the hormone stuff) was using a wet wipe every single time I did a wee. I've not had a UTI since then, I've had kidney infections as I've got messed up kidneys but not any bladder or cystitis type things which are the utter pits

You have all my sympathy

LUTS clinic have said when I go on Jan they’re going to talk to me about topical oestrogen. I definitely notice a flare at certain points of my cycle, normally gets a bit better once my period starts/just after. I’m 45yo so could be peri.

@cultkid

You need a culture to be grown to see what it is

I used to have constant UTIs and the one thing that made a difference (I tried ALL of the things you said except the hormone stuff) was using a wet wipe every single time I did a wee. I've not had a UTI since then, I've had kidney infections as I've got messed up kidneys but not any bladder or cystitis type things which are the utter pits

You have all my sympathy

Sadly embedded infections often don’t grow anything on culture. Which is the story of my life. Loads of symptoms, positive dip stick, nothing grows on culture. Cue doctors refusing treatment and saying there’s nothing wrong with you. Thankfully some doctors are very aware that MSUs aren’t very reliable and will treat anyway.

Thanks @cultkid. I wash after every no 2 Angela Kilmartin style. Learnt this at Uni way back when but had totally stopped doing that years later. I've paid to have extended broth cultures and nothing grown, twice. Dr Anderson who specialises in chronic UTI is very puzzled by it. Which makes me think it's meno. I know I did have an infection in October my wee was grim and smelly. But that cleared very fast. It just never fully went back to 'normal'

[quote feettothestars]@Ethelfromnumber73 interesting about the estrogen. This has happened 10 months into HRT. Do you used topical estrogen? Sorry for all the questions. [/quote]
My bladder hasn't coped well with oestrogen since it all went pear shaped. It flared mid cycle and just before my period without fail, was horrific when I was having fertility treatment and until recently I just couldn't manage HRT. It sounds like your HRT hasn't caused this if you were okay for ten months, but I guess there's a possibility it is exacerbating your current problem. Do you feel that your symptoms are cyclical (assuming you still have a cycle). I think codeine helps because it settles nerve pain a bit and then your muscles relax because you are not a n as much pain. I always felt the 'clenching' for want of a better word was secondary to the pain rather than a cause of my symptoms

No positive dipsticks here either. Trace of blood twice and sometimes not that either. I do have some oxolate crystals so kidney scan checking could be something to follow up.

I use transdermal oestrogen. No topical as yet but actually feel like I could really do with some now

@Ethelfromnumber73 I don't know if I'm having cycles anymore, I do have withdrawal bleeds. I'll see if the estrogen only part of my cycle feels different. To be honest I'm still hoping that it will all just go away.

My pee always dipped positive for leukocytes and blood and then never grew anything in the lab

I had what I thought was a uti in 2019 that never fully went (gp just kept throwing antibiotics at me due to blood traces in my urine) I’ve been stuck like this ever since my symptoms get worse during ovulation and ease bizarrely during my period. Been under urology at local hospital since 2019 and they have done nothing apart from shoving a camera in my bladder and prescribing me medication that only made me feel like a zombie. My urethra constantly feels swollen, my sex life is pretty much non existent as it causes me to flair up and my urologist refuses to refer me to LUTS unfortunately I can’t afford PML. IC is just unexplained symptoms.

Sorry @Rubyyyy that you're struggling still - it is so very hard. Did any antibiotics ever feel like they were helping?

I am going to start a bladder thread. I'm going to call it 'the moody bladder hang out' so if you want to follow my story that's where I will go.

I am slowly getting better than I was but also not back to normal. Im forgetting what normal felt like really.

Joining this thread very late. I had recurrent uti in my 20s lost a job over it also has urethral stretch and cystoscopy which showed scars. Had six months of antibiotics.

Took years but I did get better. Now I've had three UTIs in the last year and struggling. To shift one now and once again nothing is helping and I just feel so bleak.

Has anyone been to the Whittington recently?

@YukoandHiro if you join the Facebook group embedded chronic uti support group there are a number of Whittington luts patients.

Thanks @stirlingway, I will

Hey @feettothestars how are you getting on?

Did your daughter eventually get rid of this?

Sorry to revive an old thread but just wondered if anyone on here could recommend the urologists you spoke to to help?
(I'm 7 or 8 weeks into a proteus uti that is proving difficult to clear.)
Thanks '