UTI nightmare…need success stories

[Rochyella84]

I have had a chronic UTI for 2 months now. Short courses of Macrobid have helped but it comes back within 2 days each time. Trimethoprim didn’t help at all. I suspect a chronic/embedded infection and am waiting for an appointment with a specialist.

I am currently on a 2 week course of Macrobid and I have also started Hiprex and still symptomatic. My only symptom is urethral burning after weeing which can last several hours. I take d mannose regularly too.

On the chronic UTI Facebook group I’m on there are so many disheartening stories of people on long term antibiotics for years and still suffering. I keep thinking surely there must be people who need more than a weeks course but manage to shift this thing with something a little stronger and longer.

Im just feeling hopeless and need to hear something positive.

I have a diagnoses of painful bladder syndrome.

I started experiencing recurrent UTI’s around 16.

I had a bad flare and recurrent infections again late teens/early 20’s. I then had a cystoscopy and was given antibiotics for a year (yes a year) one a day which seemed to sort it. Started experiencing problems again around 5 years later and tried the same again, but antibiotics didn’t help that time.

Another specialist and another cystoscopy and was prescribed elmiron, which was a hassle to take (one hour before and one hour after food) 3x a day but totally cured me. That said, it’s linked to blindness and so I don’t think it’s prescribed anymore. I’ve been in remission since having children. Every now and again I get symptoms and I take calcium citrate, I think I found someone advising it on a mumsnet post and ordered it in desperation - it works almost immediately. I also take antihistamine which reduce frequency for urination and that helps give some relief from the burning when I’m having a flare.

Good luck OP. It’s so miserable. I have missed weddings and holidays owing to it all.

Sorry OP now RTFT pls send the info. I definitely find mine spirals quite quickly and wonder how much is anxiety related because I know how bad it can get.

I’m already on ovestin/vagifem/hrt patches but no difference. I’ve spent the day sat on an ice pack using numbing gel. It’s the only way I can be “comfortable”. I’ve scalded myself before and that’s the closest I can describe the pain. I’m torn on going private, some posters are sold on imbedded infections, others swear they don’t exist. Gynaecologist and Urologists are constantly passing the buck in my case. I had a cystoscopcy a few years ago and they basically said they couldn’t see anything and discharged me whilst I was still coming round from the anaesthetic and too groggy to talk. I’m concerned once I start shelling out for private gynaecology they will dismiss me or quickly diagnose me with whatever their specialty is. And I also can’t really afford it. But I don’t think the pain I am in is normal or that I can cope with it indefinitely.

@SinisterBumFacedCat does it burn even without urination? Any vaginal symptoms? I suffered from aerobic vaginitis for months (one of the most painful things I’ve ever experienced) and doctors were at a loss for months. 1 course of Clindamycin fixed it. Might be worth checking it out

It burns all the time, urination relieves it for couple of minutes, then it kicks in again. Interesting reading up as apparently I have next to no friendly bacteria (I am taking probiotics) down there but I don’t have any vaginal pain it’s all urethra and vulva. I’m going to ask my gastroenterologist about this.

There is a biokult women’s probiotic that you can take - which has massively helped my symptoms.
I take three a day.
I know the misery of it all, as it took 9 months to shift my last uti. I was very, very low with it as it ruined my life for that time. It was painful, tiring and very debilitating.
Doctors need to stop referring to it ‘as just a uti’, as if it’s a common cold. It is nothing like that!
I have PTSD from it all I think.
Mine was very difficult to treat too, as every sample came back as negative growth , but I knew there was something there. Eventually they cultured the bacteria (after my urologist requested ‘extended growth’) and they could then get me on the right antibiotics which I took for a month.
When giving a urine sample - ask your doctor to request ‘extended growth’ (I think this means they culture it for longer).
also, just to be sure, have they ruled out STIs etc?
They can cause similar burning and pain.

I was like this and it felt like thrush. Took loads of OTC thrush remedies too. Calcium citrate sorted me. I think my wee was too acidic and that was what caused the pain. You might find Amitriptyline helpful incase it’s a nerve thing for you.

Hi. Have you tried Microgen testing of your urine? It’s more detailed than the standard NHS tests and will show up ALL bacteria so that the correct antibiotics can be prescribed. Google Microgen DX.

Okay interestingly I have come away from gynaecologist with clindamycin and horse antibiotics because my urine is still looking clear but my swab was teaming with some specific bacteria. I asked about the microgen testing but they said hold off until after urology as it is so expensive. Crossing my fingers this helps (not my legs).

Hope the antibiotics get rid of the bacteria for you. It’s bloody awful. X

For anyone who is interested in considering the possibility that there is a mind body connection (and there really is for IC symptoms; trust me) this is what I did.

Listened start to finish to Alan Gordon’s podcast Tell Me About your Pain and read his book The Way Out.

Nicole Sachs podcast - search for the episodes with Whitney, Kitty, Gigi - all of them suffered from “embedded infection” or IC. Listening to them was like listening to my own story. Believe me I’ve been there, I’ve had the in depth urine testing, I’ve seen an embedded specialist and considered the Harley St clinic (SO glad I didnt). I’ve taken so many antibiotics and hiprex and a million other supplements and cut EVERYTHING from my diet and none of it worked. But this did. I’m absolutely symptom free and living a normal life. 3 months ago I was in constant burning agony.

Oh just to add - my in depth urine testing showed enteroccocus and my dipsticks always showed leucocytes and still do. The fact I had this bacteria convinced me I needed the antibiotics long term and it was 100% down to the bacteria. Now I think it was 100% down to me being in a constant state of high alert with nervous system in absolute overdrive. That can cause all manner of symptoms.

My urine samples always have leucocytes even when a culture isn’t positive.

thanks for sharing OP.

Wow I think I spoke to you on another old thread!

do you not having any symptoms?
are you no longer on hiprex?
did you take the extended cultures whilst on hiprex (I’ve heard I need to be off it to do them? But still have increased frequency)
did you notice a quick improvement? Or did it take months?

Comment above for OP @Rochyella84

I’m totally symptom free though when I get stressed I can actually feel the burning start up. It’s totally in the mind for me and many many others. I’m off Hiprex now but I do take it after sex. I had my extended culture done off all medication. I’d say 1-2 weeks after listening to stuff and changing my mindset things improved. I was symptom free in about 4-6 weeks. It’s not like a switch off - it takes dedication and commitment to changing your mindset x

Thank you! I recognise the cycle you're describing and if I get another flare up will follow your advice.

However I would add that last time I concluded it was all in my mind for all these reasons I eventually had a cystoscopy that showed many lesions inside the bladder

One of the podcast episodes covers those lesions actually. And apparently many many people have them even without symptoms. Much like many people without back pain have bulging discs. So lesions don’t necessarily equal pain.

Wow this is fascinating! It's true the urologist seemed unfussed once cancer was ruled out.
Do you have a history of confirmed UTI too? I do, and now find it so hard to distinguish between anxiety/dehydration symptoms and the beginnings of a true infection. I tend samples down to be tested far more regularly than I ought.

Yes, a long history of confirmed UTIs. This started with a confirmed UTI and then the symptoms never left me. I now believe the original antibiotics course did work, but for some reason the symptoms continued and I think that was all nervous system related. And I just assumed it was ongoing infection.

Has anyone had success with the in depth urine analysis? I’m considering paying for it but at £300 I don’t want it to be a total waste of money if it’s likely to come back clear

That’s super intresting. So do the podcast episodes you talk about tell us exactly what we should do? I’m just desperate to feel normal again. I can feel myself spiralling every day and dreading going to the toilet for fear it’ll burn or set of bladder aches. It’s been 6 weeks since I started antibiotics and usually I’m symptoms free immediately but this has lingered. I have wondered about getting a bladder instillation/amitryptilline but decided to try hiprex first, but twice a day dose left me so nauseated and feeling like death that I dropped to just at night now. I do want to do the urine test but don’t really want to stop the hiprex because I’m scared!

@Tra06 I’m also super nervous about stopping antibiotics long enough for culture results. The last time I was off them for 4 days I ended up in hospital! It’s so awful isn’t it

Rochelle thanks for sharing this interesting info.
Do you still show as having leukocytes in urine ? My urine tests now always show leukocytes but no infection.
when I asked my urologist whether this meant there was an infection but just hadn’t been found - they were vague on the answer so I’m still not sure whether I have an infection or not!

To a degree. Alan Gordon talks about Somatic tracking and I did this, followed some guided ones on YouTube. He also has a step by step course online for free. Nicole Sachs uses a technique called Journalspeak but I didn’t need to do this, just shifting mindset was enough. You sound exactly like me, you are spiralling and in permanent fight or flight. I truly believe you can get out of this - start today, just listen and learn and believe!