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

Just an update for you @Spudulike3After 3 nights of clindamycin the debilitating discharge had gone. I’ve completed 2 weeks of that antibiotic and am now on a lower dose for a few weeks. Still get the throbbing feelings but it’s intermittent and my consultant thinks the hydrocortisone and estriol will help with that. Women like you sum up what mumsnet is all about and why I come here. Thank you.

@Mamamia35 - I'm so glad that you've finally got some treatment that works. I'm angry on your behalf that it has taken so long. With the right diagnostic tools / procedures this known condition should be readily identified and yet it is not. As a scientist I know the tools needed to diagnose this are not actually that complicated. I hope your recovery continues and you feel better day by day. At the same time don't be disheartened if you have some bad days in there too. I have found the recovery was up and down (and still do).

I will be starting a campaign to get this condition more widely known about. I've already written to one MP and I hope to be be contacting a lot more people. Hopefully my scientific background will help. My lovely husband says he will build a website. We've just bought the domain name AV-action.uk though it may take a while to get up and running.

Would anyone be willing to help me in this perhaps by giving me their story? If you could tell me about how your symptoms were ignored and mistreated by the NHS this would give me more to work with than my story alone. @Rugbornepippin, @Candlelightswim and @TheGrimSmile - would you be willing? Also anyone else who is reading this post and has some experience of this. Please do PM me if you would like to tell your story (anonymously or otherwise).

Just a side note - I found this article recently https://sti.bmj.com/content/93/1/8.long. It is written by two people who work for the NHS in Scotland. How can it be that this is recognised in a GUM clinic in Glasgow but not other places???

Just to add a bit of personal context about what this did to me. I was in near constant pain and discomfort for around 3 months and I was going mad thinking I had the UTI from hell. I also had pelvic pain and other nasty symptoms.

I actually had to reduce my working hours right down and actually resigned at one point as everything felt so hopeless. Thankfully my great employer stuck with me and I'm now back at work though on reduced hours. I still have some intermittent discomfort but it is markedly reduced from what it was.

All this came at a time when I had relocated for work. My husband and I were stuck in a tiny flat for much longer than we intended as we just could not take the risk in buying a house with me so ill.

Added to all this my father had Alzheimer's and previously I had gone to visit him every week and taken him out which I think helped. At the later stages of his disease I could not help as I was so ill and I feel the medical profession not only let me down but also my dad and my mum who was coping alone. My dad died in Jan 2025 and I was still struggling at this point. There were some really dark days.

I'm determined that I will do something about this. It is a scandal that a horrible condition is going unrecognised and untreated. It may be relatively uncommon but I do believe there are many people out there suffering needlessly.

Hello all. So I've has a response to one of my letters. I've been invited to a roundtable discussion on chronic UTI in parliament this Weds! I would love to be able to give other peoples stories. If you have ever had what you thought was a chronic UTI and it actually turned out to be aerobic vaginitis - please contact me!!

@Momofthree072316 , @Rugbornepippin , @Mamamia35 and @TheGrimSmile - see post above - if you are able to contribute your stories that would be wonderful. XX

Wow that’s a great response. I hope you’re successful. What committee are you giving evidence to? If you dm your email I’ll send you my story.

Hi, sorry I saw the previous message and tried to respond and it wouldn't let me and then I forgot to reply. I would be willing to tell my story but I don't know for sure that I did have AV. I certainly had some kind of vaginal infection/ imbalance that seems to be a lot better than it was. I do have the results from my swab with Digital Microbiology.

Hi @TheGrimSmile - no probs. I'm glad to hear you're feeling better and long may it continue. Don't worry about the story as what I need are definite cases. I don't mean to minimise your suffering but when presenting a case to the various authorities probably better to have confirmed cases. XXXX

Yes, I would be more than happy for you to present my case but I am not completely sure it's AV, although I am quite sure that it originates in the vagina rather than the bladder. Thank you so muchnfor doing this and for sharing your story on here in the first place.

Just wanted to say thank you to @Spudulike3 once again for the thoughtful and thorough advice shared as it really helped me with diagnosing things further. I’m not fully cured but hopefully turning the right corner. I had the e faecalis bacteria in my bladder and been battling this UTI for almost 8 months now. After doing 8 bladder instillations of vancomycin, which initially helped me, I was back to misery with burning, throbbing and horrible pain. I decided to do the digital microbiology vaginal and urine test and it turns out that my microbiome in both the bladder and vagina has very little good bacteria and millions of g vagilisis bacteria which is known to cause BV and help other bacteria survive. Interestingly for me I still have some e faecalis in the bladder but none in the vagina. I’m currently treating the BV, doing estrogen cream, the uromune vaccine and will take vaginal probiotics after. Really hoping to restore the good bacteria and get more relief. Definitely do the test - it is so insightful. They now offer a susceptibility test for the bacteria as well and have a very quick turnaround (48 hours). Sending healing vibes to all!

I agree about Digital Microbiology being excellent, they answered my questions within an hour and my results were ready 24 hours after they received the samples. Unfortunately the only thing they found was something that might indicate CV but probably doesn't and my GP doesn't think is significant.

@Momofthree072316 - I'm so glad you found out what might be the issue. I do feel that abnormal vaginal flora can be the root of a lot of chronic UTI symptoms. I do hope your recovery continues. XXX

What did they find? Cv can be horrid!

@Candlelightswim they found that my vaginal biome is 98% lactobacillus crispatus - 384 million on the swab. This can be indicative of CV (but also of a healthy biome) but as my pH was 6 when I tested it and 5 when the GP did it she thinks it's not CV. I don't have discharge (but then I didn't when I had confirmed cases of thrush either) but I have pain and burning.

I did start a thread here about it but didn't get any answers (not sure if this link will work):
thread

I'm not sure how to find out whether it is CV or not - do you know if GUM clinics test for it? If they do I presume they will just look on a microscope same as DM did.

I’m sorry you are having such a difficult time. I would ask for a referral to GUM. I had that awful throbbing pain and burning for months. The GUM consultant suggested it may be inflammation and prescribed hydrocortisone ointment (together with antibiotics). See my post below. She told me to insert the hydrocortisone into the vagina. I personally think getting the correct antibiotics remedied my symptoms, but perhaps this might help you, if it’s a skin infection that you have.

Thanks @Mamamia35 . I am technically still under gynae at the local hospital but they have been crap and seem to have put me on the too difficult pile. GP has written to them to try and get them to see me again but she won't refer me elsewhere until they discharge me. I think I can self refer to GUM so will try that after the weekend.

Hi all

Well I've done a bit of work on my campaign to get AV recognised by the NHS recently. Just submitted a bundle of evidence to my MP who is going to pass it on the the Department for Health and Social Care.

@MNHQ - I did write two emails asking if you would be willing to write a letter of support but have received no reply - any interest?