Beating a chronic UTI - success stories

[Spudulike3]

Hi all

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

I was going to suggest Vagifem which has been a game changer but I see that's not a possibility.

@Blanketyre - Actually I van have vaginal estrogen now and I'm on it. I could not have it for a while as I had endometrial hyperplasia and it is contra indicated. I've now had a hysterectomy and all fine. I think the UTI from hell is actually a consequence of not being able to take it for a while. However, unfortunately going back on it hasn't helped shift this particular UTI.

Good call though!

Anyone else?

Hopeful bump

I had long term pain but i was told there were no longer signs of infection. I just kept feeling pain. It cleared up when i gave up caffeine.

@FumingTRex interesting and I hope you are OK now. I haven't had a cup of coffee in ages sadly. Ditto booze, chocolate, spicy things etc. unfortunately I'm pretty sure mine is still infection as dipsticks I do myself come up positive.

I’ve got a chronic UTI and have spent the last few months taking various courses of antibiotics but I’m now on a 6 month course but I do have another illness that is very affected by infections .

Look at uralix and d-mannose. Not immediate but they help if taken consistently...

https://bluegreenhealth.co.uk/?https%3A%2F%2Fbluegreenhealth_co_uk%2Fproduct%2Furalix-capsules%2F&gad_source=1

The link for uralix....

I know it’s obvious, but have you determinedly drunk several litres of water a day for a few days? Physically flushing it out may help. I think they recommended something unpleasant like having a pinch of bicarb in the water, too. Going back years, now. I used to suffer a lot but found I could flush it if I was determined.

Seconding D-Mannose

Thanks @Floralnomad . Are you feeling any better on your long course of antibiotics? I hope so. Xxx

Unfortunately D mannose won't work for me as only good for E. Coli. The bug I have can actually use it as a good source! I've not come across uralix though - I'll look it up

Have you tried Hiprex? That helped me get rid of mine, fingers crossed.

@Dilysthemilk - thanks for this. I actually did start Hiprex on top of the antibiotics a few days ago. Did you also have antibiotics as well? How long did it take to resolve for you?

Also one more question .... What times of day do you take the two doses?

I meant food source (not good source) in case anyone is wondering what I'm on about!

Hey op!

I sympathise, I had chronic UTI's for years I tried everything and went for lots of scans and tests. I had it for about 2 years straight it was horrendous.

I then fell pregnant and at my first midwife appt I explained to the midwife that I have chronic UTIs and I'm undergoing investigations and she actually said "funny enough when I was younger I had the same issue I then fell pregnant and never had a UTI again"

And I had the exact same experience as this midwife!!! I fell pregnant and never had a UTI again..... baby is now 1, hopefully I don't speak too soon!

But isn't that strange?

Sending you love I know how hard it is

Not much help to you at the moment but when I finally seemed to be clearing a uti I started taking optibac intimate probiotic. It's expensive but I think it did help to rebalance everything.

Thanks @skinnykinny - I would do literally anything right now to get rid of this but as I'm 45 and have had a hysterectomy I may struggle!

I hope the problem stays away for you

@dahliaaa - thanks for this. I agree probiotics are a good idea. Though I do wonder sometimes what is it that makes one bug bad and another good and how does your immune system know?

So I took the Hiprex for a long time afterwards, months and months as insurance. The antibiotics after the course, I then had to take one at night for 6 months. I also had to give up white wine as it seemed to make things worse (so sad!). I also went on HRT patches and took the internal oestrogen nightly, rather than twice per week, and that seemed to sort it all out. I had various investigations whilst they were trying to find out the cause - ultrasounds, a cystoscopy & hysterscopy and no one could really say for sure beyond menopause. It was truly miserable so I hope yours also gets better soon.

Know it’s a relatively old post but wondering if you found a cure. I’m dealing with the same infection for 5 months now!

Hello @Momofthree072316 . I've been thinking I must make an update. It's a very twisty tale so it will be a long one. I'll try to do it soon. I'm so sorry you're not well - it's awful. Hugs to you. Xxx

Thanks for the message - would love to hear your story in hopes it can help others inc me. Doctors aren’t sure what to tell me and it all feels a bit hopeless atm.

As promised @Momofthree072316 here is my story. I hope you are sitting comfortably as it’s long!

I guess the start of the story is in Nov 23 when I was found to have atypical endometrial hyperplasia and this is a pre-runner to endometrial cancer. The usual treatment is hysterectomy but because I was moving house this had to be delayed and in the meantime I had a Mirena coil fitted as the progesterone inhibits the development of the endometrial cancer and treats the hyperplasia. Previous to this diagnosis, I was using vaginal estrogen in the form of Vagirux and was getting along well with it. However, because of the endometrial cancer risk I had to stop using it.

I was fine until Jun 24 when I started to get UTI symptoms and had various antibiotics that were mot helping. I struggled for months with low level UTI symptoms. However, I did eventually have my hysterectomy in Aug 24 and after this I went back on vaginal estrogen. About two weeks after my surgery I started to get UTI symptoms again and I was devastated that it had come back. I did a private urine test with Digital Microbiology and they found Enterococcus faecalis which is a fairly typical UTI bug. I got the right antibiotics for it and I knew they should work because susceptibility testing had been done and had confirmed that this bug should be treatable with Co-Amoxiclav. However I took the antibiotics for a couple of months but I wasn’t getting any better and actually had to dramatically reduce my working hours as I was so ill. There were some really dark days. For example we had to come home from our holiday after only two days (was supposed to be a week) because I was in so much pain.

At this point I got some really good advice from the people at the Digital Microbiology labs. They said why don’t you do a vaginal test swab as well as the urine sample as sometimes the bugs can be present vaginally. I did and lo and behold this was the site of the Enterococcus faecalis infection. The majority bacteria in my vagina was this rather than what it should be (Lactobacillus species). It turns out that this is a condition called Aerobic Vaginitis (see here for more info https://www.sciencedirect.com/science/article/pii/S0923250817300864?via%3Dihub and https://dermnetnz.org/topics/aerobic-vaginitis).
It is hardly ever recognised in the UK and it seems some people have symptoms
of vaginal discharge etc rather like Thrush or bacterial vaginosis. However I didn’t. My main symptom was feeling like I had a UTI. I believe the antibiotic I had was the right one for this bug but it wasn’t able to clear the vaginal
infection as I guess it just didn’t reach ‘those parts’ well enough and was
possibly wiping out the good bacteria at the same time so there wasn’t any
competition.

Because there was nobody who was willing to recognise this condition let alone treat it I decided to treat it myself. I used fluomizin (also known as dequalinium chloride) and you can get this from online pharmacies but you have to pretend you have bacterial vaginosis which is a separate condition. After this I treated myself with vaginal probiotics to restore the lactobacilli. I’ll make a note on this later as I really need to caution anyone who is thinking of doing what I did. Anyhow, after I did this I did slowly improve. I do still have some discomfort and I think this is down to a mixture of vulvodynia caused by the aerobic vaginitis being untreated for so long. I also think I have some problems caused by having to stop vaginal estrogen for a while. Also having a hysterectomy in the middle of all this probably didn’t help!!! BUT the big thing here is I did have aerobic vaginitis and after I treated this I began to improve. Before I did this I was genuinely despairing. I think this condition is very under recognised in the UK and I think the symptoms often mimic a UTI.

If you are struggling with what appears to be a chronic UTI I would recommend a couple of things:

1. Do vaginal and urine tests with Digital Microbiology and so you can see what is going on in your bladder but crucially in your vaginal as well. I say this because urine samples often contain bugs from your vagina as it is almost impossible to get a sample from your bladder only as bugs from your vagina get picked up on the way past. It is the balance of bacteria in a sample rather than picking up low levels of pathogenic bacteria that matters. You should have mainly good bacteria. Low levels of what can be called 'bad' bacteria is usual so don't freak out if they find some. If the levels are higher when compared to the good bacteria - this is when there is a problem.

2. Check out if vaginal estrogen (and perhaps systemic HRT in addition) could help you. If you can afford it I would recommend seeing a menopause specialist rather than your GP as they can be useless on this.

I am a scientist with some microbiology experience and I actually work in diagnostics. This experience has helped me fight my way out of this but oh my goodness it was a struggle. Because of the terrible effect it has had on me I have vowed to do everything I can to get the effects of aerobic vaginitis more widely recognised, linked to chronic UTI and properly treated. I’ll be writing lots of letters in the next few months!!!

There is a very quick DIY test you can do to see if the problem may be aerobic vaginitis causing UTI symptoms and I’ll describe this in a post below.
I hope describing my experiences can help people and if you are suffering like I did you have my deepest sympathies because it was truly awful and the worst year of my life.

I’m going to make it my mission to get this more widely known about.