Chronic UTI success stories

[Spudulike3]

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

Have you been checked for kidney stones? I had a UTI a few weeks ago,first one in years. I'm 51. Did get antibiotics which cleared it thankfully but the Dr said they'd send a sample to the hospital to rule out kidney stones in the over 50s.

I had a mirena coil and then bam, had UTI after UTI. Once they had cleared i was left with an overactive bladder. Even removing the coil didn’t help, so now take medication to relax the bladder. Not sure if that counts as a positive but I feel a lot better now.

@xcrazycattyx Thanks for this - I 100% blame the Mirena. I would never have agreed to it ordinarily but had no choice thanks to git consultant and endometrial hyperplasia.

Can I ask what is the medication you take for overactive bladder?

@AutumnLeaves1990 Good point but I have had an ultrasound that didn't show kidney or bladder stones

No advice but you have my deepest sympathises. I had a bad one a year ago that knocked me sideways for a week and that was bad enough. I couldn't imagine 2.5 months!

@Christmastinsel78 - just one week would be like a gift from God at the moment!

I take solifenacin, it’s worked but annoying I have to even take it in the first place. They did do an ultrasound on bladder and kidneys before they prescribed it just to make sure everything was working as it was. I’m sorry you’ve had such a bad experience, I completely blame the Mirena too.

@xcrazycattyx thanks for the name of the drug - I'll look into it.

I've been meaning to make a yellow card report about Mirena and UTI and you've inspired me to get a move on. People should know that increased UTIs are a possibility.

I have ESBL but fortunately after numerous antibiotics it cleared up. For me weeing straight after sex is a must, HRT and vaginal oestrogen but I would demand a referral in your case - I was worried about bladder c in my case.

I do drink a pint of cranberry juice a day and also take a recommended supplement from the GP.

Thanks@Andwhatfreshhellisthis - I have read about ESBL and sounds nasty. How long did it take you to get over it?

Also, out of interest, what is the supplement?

6 months although I was terrified it was cancer or something sinister as it was endless. The supplement is D- mammose or something expensive but the GP said it was worth it

Hi all. Sitting here in a lot of discomfort this afternoon. Giving this thread a little bump in the hope that someone might come along with a positive story!

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.

Thanks @Konfuzzled - it gives me hope! What was the name of the nerve pain medication? I am taking a low dose of amitryptaline at the moment and doesn't seem to be doing anything though it is early days and I have been told may take some time and may also need to increase the dose.

I saw Dr Harvey at the Malone-Lee clinic after a uti I couldn't shift and GP refusing to treat as cultures were coming back negative. After a year on nitrofuriton and 18 months on hiprex my wbc and eplitheial counts were really low and I have now been symptom free for over a year.

Unfortunately now have real anxiety about getting another uti and still living with some of the side effects to all my good vaginal bacteria being killed off due to the antibiotics prior to the nitro. However even this is beginning to improve. I have heard other cure stories after attending the Malone-Lee clinic and would 100% return if I needed to.

Pregabalin. I went to a pain clinic in London which was where it was prescribed. I think the pelvic floor physio helped the most though.

Hiprex is really helpful for me

@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?

@HalfasleepChrisintheMorning - Thanks for a vote of confidence in Hiprex. I have just started to take this so fingers crossed.

I understand the fear. I go nowhere without emergency antibiotics - in my car, in the kitchen and and at work (lovely GP)

I’m post menopausal and Estriol cream has solved all my urinary problems x

Thanks @Cattery - My very switched on GP told me about vaginal estrogen when I was 43 and it did indeed much reduce UTIs. I believe I'm in this mess due to having to stop it and the Mirena coil.

As got medical clearance I've got both topical and systemic HRT now. Hopefully this will prevent future problems once I get rid of this particular infection!

@Andwhatfreshhellisthis - Totally. I have an antibiotic stash as well !

It was pain and burning around the vulva with increased discharge. I had aerobic vaginitis which I got diagnosed through the digital microbiology swab.