Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Original poster

Chronic UTI success stories

94 replies

Spudulike3 · 18/10/2024 14:33

Hi all - originally posted in Women's Health but posting here for traffic

I've had various UTIs over the years that were cleared up with the usual courses of antibiotics. However, due to a mix of circumstances I've now got one that won't shift and I've had it for about 2.5 months now. I believe the problem was caused by a mix of the Mirena coil, having to come off vaginal estrogen for medical reasons and having a catheter after surgery. The infection was found to be enterococcus faecalis originally and is still bloody there! I'm on the right antibiotics for it (culture test has been done) and am also back on the vaginal estrogen. However, recovery is really slow and I'm still symptomatic. I'm seeing the Malone Lee clinic people about it and also a urologist.

However, I'm really struggling to stay positive after a flare up during the last few days.

Does anyone have any success stories of beating a chronic / long running UTI?
I'd be particularly interested to hear from other Malone Lee patients who have had success.

All feedback appreciated!
XXX

OP posts:
Seiheiki · 24/10/2024 07:53

Spudulike3 · 23/10/2024 23:30

@Seiheiki I'm so glad it worked out for you. How long did it take to get to this point?

2 years, including 6 months of treatment from a Professor in Guildford who almost killed me.

I had to change antibiotics a few times to find the right one with Prof and Matt. Macrobid wasn't strong enough. In the end, long term Co Amoxiclav did the job.

Original poster
Spudulike3 · 24/10/2024 08:04

Goodness @Seiheiki - I'm sure everyone wants to know what the professor from Guildford did to you?

OP posts:
Hamsterdamn · 24/10/2024 08:39

I’ve had UTIs on and off for 30 years. Some years they were pretty much all the time.

It was almost impossible dealing with GPs. I was in despair. Finally I got to see a Swedish locum who couldn’t believe how behind the times the UK were in understanding UTIs. I was sent to St Barts and treated on a one year course of daily Cefalexin for one year. This helped but it wasn’t enough.

I found out about Prof Malone Lee and asked a hospital doctor to refer me to their LUTS clinic at the Whittington. GPS can’t refer. I am three years into my treatment and off the massive dose of Cefalexin and reducing the Hiprex. They put me on huge doses of vitamin C twice daily too.

Interested in this thread?

Then you might like threads about these subjects:

General health Women's health
DancingGerbil · 28/10/2024 23:42

Pindakaas · 24/10/2024 07:49

I got stuck in a loop of UTIs and thrush for over a year. Finally got sorted after moving to Germany where a routine test at the gynaecologist picked up an underlying ureaplasma infection. Apparently the NHS doesn’t test for this unless you experience recurrent miscarriages, so I am forever grateful this was picked up before. You need strong antibiotics and any partners need to be treated too. I was still having trouble with thrush and eventually the gynaecologist told me about a vaccine called Gynantren which has been a lifesaver (it helps by rebalancing your microbiome). I did have one more UTI but tried out a medicine called Canephron which I had seen advertised at the pharmacy. I was very sceptical, and it took a couple of weeks, but for the first time ever I was able to shift one without antibiotics which would have kicked off the whole sorry cycle again. I hope this can be of use to someone, it’s an awful thing to go through.

How did they treat the ureaplasma can you remember? Wondering if I should bring it up with my consultant as I've also been having issues conceiving.

Pindakaas · 29/10/2024 06:48

@DancingGerbil it was a 10-day course of antibiotics (can’t remember the name), and the doctor prescribed it for my partner too. Good luck, I hope you find the answers you need.

Kitkat1523 · 29/10/2024 07:37

DancingGerbil · 28/10/2024 23:42

How did they treat the ureaplasma can you remember? Wondering if I should bring it up with my consultant as I've also been having issues conceiving.

Show quote history

Usually doxy followed by aziromycin I think is the protocol

Konfuzzled · 29/10/2024 08:13

I have to say my years of struggling with UTIs and chronic nerve pain as a result has completely put me off sex. Last time it resulted in a 5 week UTI and then I had a reaction to the antibiotics that lasted weeks. It makes me too scared to have sex now.

Original poster
Spudulike3 · 29/10/2024 08:59

@Konfuzzled I'm sorry to hear that - its shit isn't it. I'm also an abstainer these days. Xxxcx

OP posts:
DancingGerbil · 29/10/2024 17:22

Random one but does anyone get what feels like air bubbles in their urethra?

Thursdaygirl · 29/10/2024 18:08

Seiheiki · 23/10/2024 23:06

I was initially treated by Prof himself, then Matt at the Malone Lee clinic. It's taken time, but I've gone from 6 weekly ecoli flare ups involving various hospital admissions, to absolutely zero infections. Forever grateful to all involved at the clinic.

What treatment did you have?

Kitkat1523 · 29/10/2024 19:38

Thursdaygirl · 29/10/2024 18:08

What treatment did you have?

Show quote history

Usually high dose antibiotics I think , often plus hipprex, for as long as needed

LostittoBostik · 29/10/2024 19:50

Oh god, this has given me the fear. I'm prone to UTIs and have a complicated history with them (back in my 20s) and I've just had a mirena fitted for unmanageable periods in my 40s. Haven't had sex yet since as waiting for fibroid surgery healing, so remains to be seen what the effect will be although weirdly my bladder feels better than it has done for years.

Anyway OP, have you had a cystoscopy yet? I was found to have a lot of scarring in the the bladder and was put on low dose antibiotics for a year (under a urologist but not professor malone's team). Eventually I got much better but still have flares of pain.

I was much better while pregnant and bf so there's definitely a hormonal element.

I have had 3 actual UTIs in the last five years and all of them were related to wearing period knickers so they are a no go for me.

LostittoBostik · 29/10/2024 19:52

Konfuzzled · 20/10/2024 17:08

I had a really bad one 15 years ago that went on for months. Saw a urologist and was given two weeks of strong antibiotics, can't remember what they're called but they're the ones doctors don't like to use normally - began with a C. Ever since then I take D mannose every day. Also use baby wipes very very thoroughly after every bowel movement. Avoid too much sugar. Hope you get some relief.

Hot water bottle or heated pad in microwave over the bladder can help to relax the pelvic floor muscles. I also ended up needing women's health physio as I had been in pain so long my pelvic floor was really tight and caused chronic pain even once the infection was gone. I took nerve pain medication for a while as well.

Yes to this...
Once the infection is gone you'll find a lot of the pain is muscle memory. It tool me about a year to get over this but heat does really help.
I did get better
(Now utterly paranoid I'm about to get worse with mirena...)

LostittoBostik · 29/10/2024 19:53

Spudulike3 · 20/10/2024 17:20

@Muledcider Thanks for your story and I'm so glad to hear you are better. I totally understand about the paranoia about getting another UTI.

I have had the exact same experience with the testing showing no bugs but I am a scientist with microbiology experience and I knew the test was bollocks. Therefore I did a private test with both Digital Microbiology and also Focus Labs where they found the bug and did the antibiotic susceptibility testing. My heart bleeds for people who aren't able to access this or don't know about it.

If you don't mind me asking, what symptoms did lack of good bacteria cause you so I can look out for that?

Thank you for mentioning this too as my mum is suffering now - I will get her to look into this

LostittoBostik · 29/10/2024 19:58

MsCactus · 23/10/2024 19:38

I had chronic UTIs for five years and chronic bladder pain as a result.

Was on constant antibiotics - the only thing that cleared it was taking absolutely huge quantities of waterfall D-Mannose. When I first started I was taking one heaped teaspoon of the powder every hour. Gave me horrible diarrhea but cured my UTIs for good

You have to be careful with this though. It is a sugar. I'm pretty sure it gave me gestational diabetes

LostittoBostik · 29/10/2024 20:00

Spudulike3 · 23/10/2024 22:47

@MsCactus it just goes to show what a complex condition chronic UTI is. There needs to be so much more research to put it all together, bacteria, vaginal microbiome, hormones, muscles, natural supplements, diet....... I also find that Urologists can be quite dogmatic and not consider more than one thing that is their speciality. I'm sure not all are like that though.

Absolutely agree!

Covidwoes · 29/10/2024 20:13

I'm a recurrent UTI sufferer, and can't afford private treatment. I feel like I'll be stuck with it forever. So many medical professionals don't take it seriously.

Kitkat1523 · 29/10/2024 21:03

Covidwoes · 29/10/2024 20:13

I'm a recurrent UTI sufferer, and can't afford private treatment. I feel like I'll be stuck with it forever. So many medical professionals don't take it seriously.

Get your urologist or gynaecologist if you have them to refer you to LUtS at Whittington hosptial in London…..l there’s a waiting list but at least it’s free treatment

OP posts:
New posts on this thread. Refresh page
Swipe left for the next trending thread