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?

My daughter has one for the last 6 weeks and we have had several gp visits and 2 trips to the hospital. It’s interesting that you say that the lab tests are not always accurate. Some are showing up with bacteria and others are clear.

I’m really hoping we get it sorted this week as it is really dragging on and she is only 5. It seems like a really tricky thing to get rid of.

Thanks everyone for your comments.

I am almost three weeks into this and it’s dragging on. I will keep updating. Waiting for lab results back and fully expecting them to be negative. It helps to hear about cystitis recovery when it’s been a bad infection as it’s hard for me to know if this is just still painful inflammation or infection. @RubyTuesday70 was it sore for ages when you did a wee? I feel like it was so inflamed that there will need to be healing - but also hard to know if it’s continued infection?

It has made me feel wretched and I’ve thrown so much cash at supplements that seem to be doing little. @3luckystars I’m sorry your daughter has this dragging on.

It has horrified me to read of so many women who live like this ALL the time. At three weeks I am a shell of myself. I really hope I can shift it. My health anxiety plays games with me as there aren’t many threads of women who had normal stubborn cystitis who shifted it. Just ones where it never went away

Yes OP, it didn't so much sting when I had a pee but it was the pain afterwards that got me down and it seemed to go on for such a long time. I wondered if it was this www.nhs.uk/conditions/interstitial-cystitis/ but it was during lockdown and the GP was inaccessible (still is). I was just given antibiotics over the phone.

And all of my lab samples were clear of infection too.

I hope you're starting to feel better OP and have some better antibiotics to shift it.
I would definitely take pain killers whilst you still have it and keep these up.
Just a few of the things my Urologist said to me that may help long term.
He recommended D Mannose, though I have not it has helped at all and makes me feel a bit quesy but for some people I know it really helps.
Avoid all fruit juices (including Cranberry) as they are full if sugar. Though again I know cranberry helps a lot of people, so if it does help its best to take it in the tablet form.
Avoid any black current juice or anything with black current in it - I am not 100% sure why but I know it makes the symptoms of mine a lot worse.
Aviod being constipated and take something if you feel you are getting constipated as he said this can be a big contributor to infections.
Drink plenty but throughout the day - not just in the morning.
Avoid tight clothes as this can bring the bacterial closer to the uretha.

My Mum also suffers with reoccurant UTIs and has the oestrogen cream, which has really helped.

@AnCailleachOiche

Cranberry juice op. Cheap and does really help.

I second this.

D mannose works for E. coli UTIs (which are the most common) only.

I’m going to keep updating this because a thread that ends with no ending is so common.

I am now 7 weeks maybe 8 since my UTI began. I have ha d a 12 day course of cephalexin which wrecked my guts and a lot of the pain/frequency has shifted but I still don’t feel right. I got horrendous thrush that I’ve treated with one tablet/pessary and cons wants me to do one more tablet a week on from the first.

I’m now on Blissel vaginal estrogen as the ovestin stung so much. I’m taking this every day for a couple of weeks. I think it’s helping. AND YET I don’t feel like it’s all fully resolved. Still pain sometimes on weeing, frequency sometimes and urgency it all feels like a car crash in my undercarriage. I want to just take weeing blissfully for granted again. I’m starting to think that isn’t going to happen

I don’t need any more d mannose/cranberry advice though all of the helpful suggestions have been appreciated. I am way beyond that now - if there’s a supplement: I’ve tried it.

I am now under Dr Anderson in Stoke who is a chronic UTI specialist. She’s been helpful but it’s also very scary this world of embedded UTIs. My bowels couldn’t tolerate cephalexin for one day longer, constant shits. Fans of Dr Malone (this cons works on similar principles to his) are many but high dose long term antibiotics - how do you do it? I think it would devastate the rest of my body. I’m struggling to see how one UTI is now embedded forever, it makes me so scared. Add to this that two broth cultures run by dr Andersen have not found any bacteria. She’s convinced we just haven’t found it yet and that if I have symptoms I have an infection. But I’m not sure if peri meno vag//thrush/constant frightened tension of my pelvis is at play. She does not believe in interstitial cystitis.

The last two months have been so awful. I haven’t worked for most of it, I’ve been strapped to a tens machine (amiltriptiline has helped the pain) and I’ve lost a lot of weight with all the stomach issues. I’m limping through Christmas but the long term prospect of living with this is too frightening to think about.

So mumsnetters - where are other chronic UTI sufferers? How do cope? Is there anyone with dr malone or Anderson that is now actually better? How do you manage the antibiotics? Where are folk who has this and it went away? If this is vaginal atrophy how long to see improvement? Can thrush cause weeing pain? I think I could do with some support and hope. It’s all like a complex puzzle that me and my cons can’t seem to figure out. I am having an ultrasound on Monday and waiting for a urologist appointment. But Dr Anderson advises no cystoscopy until deemed absolutely necessary as she thinks they can make it all a lot worse.

The number one thing I found that helped was to stop drinking tea,there was almost a miraculous shift over night. I now drink Redbush tea instead. I also take a cranberry supplement daily. I was at my wit's end ,I can imagine how you feel OP

Thanks pellegrino. I’m only drinking water and following an IC diet. It’s all quite joyless. But good to have some company on here.

I’m going to be very honest here.

I’ve had recurrent UTIs since I was 14 - I’m now 41 (I did comment earlier on this thread but can’t remember what I posted!) anyway I take cefalexin every single day long term 500mg and up this to 3 a day if I’m struggling. If I get a really bad infection I’ll take Doxycycline and possible ciprofloxacin. The antibiotics do give me horrendous upset stomachs, to the point that at times I can’t leave the house because I’ll literally poop myself. And yes that’s awful. Really awful. But it’s better than the pain of the infection so I have to balance it with that. I take high strength Cocodamol (30/500) on days when my stomach is really bad because it helps with the pain and slows the bowel down so it stops the upset stomach to some extent.

I also take -
2 Yakult drinks a day - helps to stop thrush from setting in, from trial and error it has to be Yakult or oddly enough the Aldi cheaper version. Others don’t work.
Daktarin oral gel every single day to prevent oral thrush
Corsodyl mouth wash to prevent oral thrush
Ovestin oestrogen cream
Replens vaginal cream on the days I don’t use Ovestin
HRT - oestrogel and utrogestan
(All of these things are basically to help prevent thrush)
Fluconazole capsule 150mg once every 3 weeks

I have a lot of other health conditions- Addisons, lupus, asthma, pituitary issues, hypothyroidism etc etc. The UTI thing is just another thing I live with and I just muddle through with it all, all in all I take 22 different medications a day, including Tramadol at night to help me sleep with the UTI type pain and joint pain from lupus.

I know it’s awful but if you need to take the antibiotics you’ll have to take them and find ways of managing the side effects.

Meant to say thrush can definitely feel like a UTI - and you don’t have to have the typical cottage cheese discharge to have thrush, I never do. I have sjorgens which means I’m always super dry and I don’t have those symptoms.

(It’s important to prevent oral thrush in my case as with asthma I’m prone to it - before anyone says wash my inhalers etc I do (!!) I’m under an oral specialist for it, I develop it because of my autoimmune conditions but obviously need to stop it spreading anywhere else as much as I can. It was so awful for 2 months last year I could only eat liquid food).

@RubyTuesday70

Our GP surgery has stopped prescribing Trimethoprim as it's so ineffective. I had one last year that lasted for nearly 5 weeks, I was almost beyond my limits by the end.

GP told me to throw the D Mannose in the bin; cranberry juice is full of sugar and guaranteed not to help either (it's a complete old wives tale). I ended up having 2 courses of Nitrofurantoin which made me feel horrendous but eventually shifted it. I'd say it took a good 3 months for my bladder function to feel "normal" again. You have my utmost sympathy OP

Another long term sufferer here. I rarely find Trimethoprim works for me - Nitrofurantoin tends to be more effective. I take one after sex too and that really helps.

Yes I find Trimethoprim useless too. I can’t take the N one either as it just makes me feel really, really unwell. There are quite a few different ones you can take.

Thanks @Bagelsandbrie man I’m sorry you have so many things to contend with. I guess if longer term antibiotics are needed I’ll have to cope but my cons was concerned I might get C. difficile so that was another thing to freak out over. I am not a recurrent UTI gal but I feel for you so much for having this for so long. Do you get cultures that show growth? And have you been told that you’ll be ABs for life? Interesting that thrush can mimic UTI - I do wonder if that’s all in the mix. I think I need to get a stronger mindset, do you just crack on and live your life? I’ve ground to a total halt.

@WobblyLondoner do you have symptoms all the time? Or are things under control?

@summernotwinter

Thanks *@Bagelsandbrie* man I’m sorry you have so many things to contend with. I guess if longer term antibiotics are needed I’ll have to cope but my cons was concerned I might get C. difficile so that was another thing to freak out over. I am not a recurrent UTI gal but I feel for you so much for having this for so long. Do you get cultures that show growth? And have you been told that you’ll be ABs for life? Interesting that thrush can mimic UTI - I do wonder if that’s all in the mix. I think I need to get a stronger mindset, do you just crack on and live your life? I’ve ground to a total halt.

They can test for c diff but you’re more likely to get a kidney infection from an untreated UTI than you are to get c diff from a course of cefalexin. It’s all about risks and benefits….!

It is hard, I’m not going to lie and I have days when I feel really sorry for myself but I have two dc, one of whom has complex needs so I can’t have a day off from it all I just have to dose myself up and crack on with it all. It’s a change of mindset really! But yes it isn’t easy and it’s upsetting when it’s new to you. I’ve had 30 ish years to get used to it, I’ve lived more of my life with it than without!

Because I’m on life long steroids for my Addison’s they don’t do cultures anymore as they always come back clear. (Steroids mask infection or something). And yes everyone just accepts and expects I’ll be on antibiotics for life.

If you have thrush the Ovestin cream or any cream will sting, just need to keep going with it unless it’s literally causing you really intense allergic type reactions and keep up the thrush treatments too.

[quote summernotwinter]@WobblyLondoner do you have symptoms all the time? Or are things under control?[/quote]
Oh gosh, I could write a book on this. I've struggled with UTIs since my teens - I'm now mid 50s. A lot of what you describe has been an issue for me - particularly the endless saga of testing and not being sure what to read from something coming back negative. I've had endless hospital investigations that show that I have a large bladder that I struggle to empty completely, particularly when I have an infection. I'm waiting to discuss the latest round of tests but my appointments keep being pushed back.

BUT unlike others here I'm not in considerable pain. When I have an infection it is bad but it is bearable, and when one is lingering I can get through it with standard painkillers. I have weeks with no symptoms at all but it is a lingering issue that has been with me all my adult life and if I'm honest has dealt a fairly deathly blow to my sex life.

What has worked for me (already mentioned by others earlier) are: HRT and Ovestin; prophallactic antibiotics after sex; d-mannose everyday; lots of water. I realise from this thread that I have been very lucky in avoiding the thrush merry go round. I have investigated dietary options and did cut out some of the common triggers but it didn't seem to make any difference. I am a member of this group and they have a helpful newsletter. bladderhealthuk.org/about-us

It distresses me a lot reading stories like these - what a devastating effect it has on some women's lives - and yet how little attention is paid to UTIs. One of the consultants mentioned earlier used to run an NHS clinic near me which focused on long term antibiotic use but it no longer operates I understand.

I have got to the stage where I just live with this but on a bad day I worry that this will be the thing that finishes me off when I'm much older.

Sorry - not very helpful. Stay strong - and do keep posting.

@Bagelsandbrie @WobblyLondoner thanks both. It is a devastating condition with such wide reaching impact. I’m sorry you’ve both had it so long and appreciate you taking the time to share. I have somehow messed up my account and have two usernames so will get that sorted and carry on updating my story.

This is me (summernotwinter) with my other account. No idea how I did that but can now use the app.

If you're struggling with bladder issues please do come along and have some companionship.

I've previously replied earlier up the thread but I'm a long term sufferer too. I first had UTIs when I was 18 and I'm 43 now.
I take Cefalexin daily (was ciproforitin 3 x a day but has just changed). I take it at night only because of the reaction it has to my guts. My symptoms are well under control now but it took a long time to get to this point and I'll still get infections now which are so hard to shift but I'm no where near as bad as I was.

With thrush, if I take a full course of antibiotics I get it but not if I continuously take them 1 a day. The thrush can be difficult to shift and the only way I can if I do a pessary, another 3 days later and then cream for a week. If its really bad, I'll do another pessary 3 days after the second one. 1 course of treatment never shifts it.

@Mum6776 that was alarming to read! My GP (different one every appointment) has just prescribed me a month long dose of nitrofurantoin and it will be the third prescription of this in the last 5 months. The previous one was for 21 days. So basically I will have been on nitrofurantoin for months with a break of about 8 days. I find it completely clears my symptoms but as soon as I come off it the UTI has returned. No GP ever mentioned risk of fibrosis to the lungs!!! Am thinking I probably need to find an alternative

I’ve been under Prof Malone and now LUTS clinic for eight years. Have taken high dose cephalexin for all,that time. Still not cured. My last appt they did say maybe it’s not working and that they might wash their hand of me at the next appt. I’m fairly symptom free but if I miss a dose or am a bit late with a dose then I can feel the heavy bladder straight away, it’s like my bladder is swollen. Maybe I’ve just forgotten what a normal bladder feels like. 🤷‍♀️

Sorry OP I didn’t mean to jump into the thread there without saying first that I sympathise! Have been suffering with chronic UTI’s since about 2016 and was diagnosed with IC in 2018 although I’m convinced it’s an embedded infection. I had to give up my job due to the constant pain and debilitating symptoms. Tried DMannose and Uralix but it didn’t work for me unfortunately. Was advised against cranberry juice by urologist as this can exacerbate symptoms. Have just had a second referral to a urologist from the GP after 5 months of being pretty much constantly on antibiotics. Am lucky that my DP has the patience of a saint but it takes its toll on our relationship. At the moment I have no answers so I’m sorry I can’t help you but it was interesting to read up thread about oestrogen gel- am thinking that might be worth a try. Hope you get free of the UTI cycle soon OP and keep posting- it’s sad we’re having to suffer this but comforting to talk to others going through the same

Ok this is going to sound weird but bear with me. I’m not a doctor but you can check out research papers to back things up.
There is a link between cystitis and anxiety/ depression. It’s to do with the way the bladder works and how the nerves allow it to function. High levels of stress hormones can result in inflammation and pain which can lead to a sterile cystitis but then infection can get in. If you don’t settle the underlying cause it will keep coming back.
It’s possibly worth looking at mindfulness/ mediation to see if that can help you.
The bladder is such a complicated thing.