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 took cephlaxin for several years, prescribed by a consultant, for a kidney infection I couldn't get rid of. Resolved eventually.

Just posted this on another thread:

I re-registered just to reply to this, as I had multiple, embedded UTIs. I did a lot of reading and research, and this has been my experience/advice:

• Get a urologist. Go privately and pay on a card if you need to. GPs just aren't equipped to deal with the complex issues women face in this area of medicine, and their tests are for shit. My urine sample came back negative at the doctors, but the very sensitive testing done at the urologist's showed inflammation markers 700x higher than normal.
• You will probably need weeks of antibiotics - maybe different kinds. I was on all of them: macrobid, trimethroprim, ciprofloxacin. At one point I was on them for over three months at a time.
• I had a cystoscopy, which showed a "snowstorm" of pus, which they flushed out. I had my urethra stretched, which has actually helped, but you then need to maintain urinary health to stop it from contracting again.
• I changed my diet as per PPs above.
• I was put on Hiprex 2 x per day, and I now use it 1 x per day, with D-Mannose.
• Sachets are not advised by my urologist. The problem was that my urine was too alkaline, which he said was complex given that acid is also a problem! He told me to avoid them like the plague.
• HRT. The great, often unspoken, truth is that many UTIs are meno/perimeno related, as the skin around the vulva thins and shrinks. So I am now on HRT (patches/progresterone/testosterone), including topical oestrogen (cream and pessaries).

All of this has gradually helped - in spite of going totally off the rails, diet wise, over the holidays, which is causing some mild discomfort and a short course of ABs, but several months ago, this would have had far more severe consequences. It can get better. It might not go away completely, but it can get better. But get a cystoscopy so that you can gauge the extent of any problems.

Thank you so much for taking the time. I have an appointment with an embedded uti specialist at the end of Jan. I hope I have cottoned onto the right path quickly as I know some women suffer for years before getting the right treatment. It’s just so disheartening. Did you feel the dietary changes really helped? I have been wondering if sugar might be making things worse.

Sugar is the single biggest scourge. It is oil on the flames of UTIs, in my experience. I may have broken my diet over Christmas, but I only ate sugar once. That is how bad it is.

I hope you start to feel better soon!

I feel your pain. It may also be worth trying antihistamine as some of my issues stem from also having mast cell activation syndrome (shown up on cystoscopy when they filled my bladder and the walls started to bleed!) Mine is also triggered by having hypertonic pelvic floor so I have to consciously try and relax my pelvic floor. It really helps with the awful pressure feeling in the bladder area and makes me actually able to urinate properly. But good luck. I had to see a urogynae privately to really get properly diagnosed

Thank you, I’ve heard of the antihistamine thing, will try. I don’t have any pressure or pain in the bladder at all, it’s just burning in the urethra. Which is hellish on its own!

I totally relate to the hypertonic pelvic floor, which would often see me sitting bolt upright without even knowing it. When I wee now and I think I've finished, I have to deliberately relax, exhale, and then I realise how much urine I was previously retaining. There is definitely some somatic retraining needed.

How old are you? Depending on your age, it might be worth investigating topical estrogen too.

Yes! That’s another thing on my list. I’m 38….I’ve wondered if it could be perimenopause though I’m young for that. Do I need to get a blood test to confirm? And is it only on prescription?!

Peri can start years before meno sets in. Looking back, I was edging into perimeno in my late 30s. I was told by my menopause doctor that blood tests are often questionable because hormone levels fluctuate across hours, let alone days. I think you can get topical estrogen otc now, but it might be for post-meno women only (which is ridiculous, given vaginal atrophy starts pre-meno).

So much about how women’s issues are treated is just ridiculous in my opinion. 3 days abx for a UTI is a joke for starters. I’ll look into the peri thing further.

I also decided to try Fluconazole in case the burning is actually thrush not UTI. I have no discharge or itching but the fact that my symptom is just burning after voiding does suggest it is a possibility.

It's definitely worth ruling out - and it's simple to do.

I agree: women's health issues are not only overlooked - they're minimised. Ignorance of and contempt towards our bodies and symptomatology are rife and threaded through every part of the system.

This is a bit of a long shot, but I had vaginal and urinary pain for over a year and it turned out to be coeliac disease (which is where your body responds badly to eating gluten). I went gluten free and the pain stopped and never came back. Not the usual symptoms of coeliac disease but that’s what was causing my problem!

Is your appointment with Harley Street @Rochyella84? I'm in treatment with them currently. I've been on antibiotics for just over a year now and feel 90% better. If it's possible for you to go at short notice, ask them to let you know if they get any cancellations, I did this and got to see them much quicker.

In the meantime, ask your Dr for amitriptyline, this helps calm things down and will help you sleep better at night. Antihistamines can help a bit too and DMannose. Antibiotics are the only thing that will get rid of it though. I really feel for you as it's awful, but you should start to feel better quite quickly once you're in treatment.

No, it’s with a urologist recommended on the Harley st website though. He accepts insurance which makes it cheaper for me. He apparently treats in a similar way.
Im so pleased you are doing better, did you find out what bacteria you have? My cultures are all negative so I have no idea.
Ive heard of that drug but thankfully I don’t think I’m so severe that I need it. I can sleep, I don’t have bladder pain or pressure or urgency. It’s just the burning feeling after voiding. Which can be mild or severe but mostly just so consistent, irritating and makes me so aware of the area.

Jumping on to say that I suffered with this for a few years in my late 20s and again after having children in my mid thirties. It is now under control in my late thirties, but in my case it appeared to be a combination of lichen schlerosis, early vaginal atrophy due to progesterone only hormonal contraception and pelvic floor dysfunction. The burning occasionally returns if I have not drunk enough water or drink alcohol, but I manage to keep it under control through D-Mannose and watching my diet. The biggest impact was using topical oestrogen - I was also proscribed oestrogen pessaries which are the gold standard for treating bladder issues caused by peri. My gynae admitted that many women in their late 30s experience drying out of the tissues around the bladder and vagina, prior to the classic mid-40s onset.

In my case, this all started with a UTI which was over treated with ABs, and I went on a wild goose chase for years trying all sorts of therapies and getting very unhappy. It massively impacted my mental health. I don't know if it is unrelated but taking sertraline for anxiety also helped with my symptoms, possibly because I was hyper focused on bodily sensations. Yoga is now a big part of my life for similar reasons.

That's just my experience and I have friends who had cystoscopies / bladder flush and found that helpful. It is miserable and as other posters have said, Womens urology and the interaction between hormones, ageing and well-being is very poorly understood (though getting better now thankfully). Good luck!

So similar, @zapeze! After the year of bladder hell and scopes, and antibiotics, and pain, it's good to know that while we may all go through this individually, there are quite a few of us 'in it together'. At times, it felt like I was the only one, and it did take a little while for my urologist to impress upon me the fact that this is by no means an uncommon syndrome with peri/menopausal women.

early vaginal atrophy due to progesterone only hormonal contraception

This was me too. I didn't know that. I found that the pessaries and topical creams started working slowly, and only after several weeks, so I can only really appreciate the difference looking back and remembering how I was in February this year: constant burning and stabbing in my urethra, lower back and abdominal pain, bloating, permanent muscle-spasms in my pelvic region, drip-drip-drip incontinence - not to mention the infection flare-ups that put me in bed several times.

Now, as you say, it's about management, and mitigating any overindulgences and understanding their impact.

Thank you so much for this. I’m not on progesterone only pill but I have been on a combined pill for the best part of 20 years aside from pregnancy.
I do feel like it’s a wild goose chase as you say. The very specific urethral burning only makes me think maybe it’s not an active UTI but a combination of other factors including things like yeast, low estrogen etc. It’s so hard to know where to start looking for answers. Did you have your estrogen checked or did the gynae know just from looking? I’m seeing a urologist soon but I’m not 100% sure if I’m picking the right specialist!

Did you get prescribed the estrogen by the GP or a specialist?

Don’t lose hope op! I suffered with what the GP diagnosed as chronic UTI’s for around a year which never really went away until I went on a long course of nitrofurantoin (28 days).

This finally shifted it and I now haven’t had one since summer last year which feels like a miracle! Strongly recommend pushing your GP for a long course, I believe my UTI was embedded and without that course of antibiotics it would not have gone away.

I see a doctor at the Newson Clinic (online), who appears to be very well-versed in the UTI issues women face. She prescribed estrogen for me. Sometimes you need different experts to fill in the blanks when it comes to finding out what's going on. I had to. My urologist is great, but gynaecology isn't his forté so it is ancillary to his thinking. If you can get a urologist who specialises in women's urology/hormones, then you've hit the jackpot.

@Blueberry40 that really does give me hope, its the sort of thing I needed to hear. That just a slightly longer course might be all it needs. All these stories of 1-4 years on antibiotics are so scary.

@Bionesque thank you. Its been so helpful. I definitely realise now I need to think beyond just antibiotics for UTI and think about what might be causing it and addressing those issues too. its all a big puzzle isn't it. Ive stayed off sugar and caffeine all day....now I just have to stay off them for longer!

I had UTIs for about 5 years in my late 20s and early 30s and have been mostly clear for 5 years now. D-mannose made a huge difference to me, have you tried it? I also cut out coffee and alcohol for about a year, tried to minimise sugar, and made sure that I drank a lot of water any time I did have any of those things, as well as staying hydrated in general. But I attribute most of my getting over it to D-mannose, I'd been on and off antibiotics for years, and they never cleared it up, but D-mannose relieved the symptoms in a couple of days and chased off twinges when they came up in the following months. I wish I'd known about it earlier because the antibiotics weren't good for me, still have some lingering side-effects from one of them.