Jill’s Chronic UTI Story
Jill began experiencing recurrent UTIs when she was 60. Despite receiving standard antibiotic treatment for these acute attacks, the frequency of her infections soon increased, along with alarming lab findings of growing antibiotic resistances. After suffering severe gut problems from candida overgrowth, and with labs now consistently finding a resistant ESBL-producing E coli (ESBL-EC), she turned to Traditional Chinese Medicine (TCM) and completely turned her life around. Jill has been free from recurrent UTIs for three years and has now turned her attention to lobbying for change. In 2016 she established a campaign group, BladderAction UK, to put pressure on the UK government and relevant authorities to address current failures in the medical system, and to introduce better UTI testing and treatment protocols in the UK. Here is Jill’s story.
My recurrent UTIs started after turning 60
This is my story using Traditional Chinese Herbal Medicine with acupuncture to combat chronic urinary tract infections.
Ten years ago, a few months after turning 60, I began getting recurrent UTIs with around three or four months between attacks. Antibiotics always managed to clear the infection. Microbiology invariably reported a growth of E. coli.
As time went on the period between attacks decreased and my GP referred me to a urologist. Various urological investigations found nothing abnormal and for treatment I was offered a prophylactic nightly antibiotic for a maximum period of three months. This worked reasonably well, but during the ‘medically’ advised breaks the UTIs returned within weeks.
My infections grew more and more persistent with periods between attacks becoming as little as three weeks. Antibiotics were not always effective and it would often require more than one round to get things under control. My GP and I both felt that bacteria were likely embedded in my bladder cells in an intermittent quiescent state. In other words these episodes were not new infections, but ‘escapees’ from a bacterial reservoir deep within the bladder wall. It’s well known these days that E. coli can form an impenetrable niche (biofilm) where they are safe from immune and chemical attack. Alarmingly, lab reports were finding increased antibiotic resistance. The drug choice was diminishing rapidly.
Repeat courses of antibiotics cause a systemic candida overgrowth
I then started to have very severe gut pain and was referred to a gastrologist for investigation. I could hardly eat. An endoscopy revealed gastritis. My morale sank as I tried to cope with two extremely painful chronic conditions.
I saw an environmental doctor who diagnosed a candida overgrowth (likely a result of all the antibiotics). It took one and a half years of a strict medical and dietary regime to knock this new infection out. However the recurrent UTIs continued and microbiology was now reporting an ESBL infection – a superbug resistant to most antibiotics. My only oral option was Nitrofurantoin and it didn’t work. I was completely stymied and very frightened. Urology had exhausted all investigative avenues and finding nothing amiss signed me off as untreatable.
My infections grew more and more persistent with periods between attacks becoming as little as three weeks. Antibiotics were not always effective and it would often require more than one round to get things under control.
I discovered people having success treating UTIs with traditional Chinese medicine (TCM)
During this time I read and read and came across a few blogs from similarly affected women in the US who were experiencing relief taking Chinese herbs. By chance a Chinese doctor had started privately treating patients at my local GP practice in north London (UK) and I made an appointment. This was December 2011. My new doctor qualified in traditional Chinese (TCM) and Western medicine at Shanghai University and had been practicing for many years. She prescribed a blend of at least 12 herbs that were tailored weekly. At each visit she noted my tongue, and my pulses before the acupuncture. I found the latter extremely effective in reducing the pain of a burning bladder.
During 2012 I had many bouts of confirmed UTIs. Every time I had an attack my doctor upped the antimicrobial herbs, which were effective within three days. My symptoms were constant but manageable; the bacteria seemed to be weakening as my body strengthened and it felt as though the inflammation and damage from countless attacks of UTI were slowly healing. By the end of that year my doctor risked reducing the amount of killer herbs and thankfully I held my own. I had gone a whole year without antibiotics!
I continued this weekly treatment and in time more and more days became pain-free. From time to time I would flare, with a positive dipstick test, so my GP felt justified in requesting a urine test. These tests continued consistently to grow e-coli, for which I was given antibiotics but didn’t take them. To my surprise, each test showed that the various resistances had disappeared, including, finally, the ESBL infection. The ever lurking E. coli had now become sensitive to the full spectrum of common UTI antibiotics. Throughout 2013 I had no truly major UTIs, but was still bladder aware with slow flow and mild to medium urgency .
I’d read a lot about multi-bacterial infections so found a lab that could do a private broth culture, and this more sensitive test confirmed my suspicion that other bacteria were likely involved. Enterococcus grew as well as the usual E. coli. This lab simultaneously cultured using a standard National Health Service (NHS) test, which grew nothing. I’ve since found out that the standard test misses 50 percent of genuine UTIs, and have seen plenty of studies that back this up. Health authorities are well aware of this but, in spite of the growing evidence, continue to advise against antibiotic treatment if tests show negative; even in the face of overwhelming symptoms.
During 2012 I had many bouts of confirmed UTIs. Every time I had an attack my doctor upped the antimicrobial herbs, which were effective within three days. My symptoms were constant but manageable; the bacteria seemed to be weakening as my body strengthened and it felt as though the inflammation and damage from countless attacks of UTI were slowly healing.
The Chinese herbs and acupuncture was gradually working
Gradually my symptoms improved: urine cleared, bladder capacity increased and ‘latch-key urgency’ (the need to pee as soon as returning home) became a thing of the past. Only urine flow remained weak.
For the past three years I’ve been virtually symptom-free. I’ve had a couple of uncomplicated UTIs for which I’ve taken two weeks of antibiotics. Standard tests for these attacks are often negative now, in spite of urine having a classic cloudy appearance and odour of infection. Fortunately my GP, by this time, had become better informed on the inadequate NHS tests and has thus felt comfortable to prescribe antibiotics.
I continue to have weekly acupuncture and prescription Chinese herbs. When I’m away, as well as herbs, I take Hiprex as a kind of fail safe.
These days I occasionally experience some random transient burning which passes very quickly, usually within an hour or so. In the past this type of symptom always heralded an acute UTI. That I occasionally get these niggles makes me think it likely I still have an embedded infection, but the herbs and a stronger immune system are doing a good job now.
For the past three years I’ve been virtually symptom-free. I’ve had a couple of uncomplicated UTIs for which I’ve taken two weeks of antibiotics. Standard tests for these attacks are often negative now, in spite of urine having a classic cloudy appearance and odour of infection.
Traditional Chinese medicine cured more than my chronic UTI
Incidentally the side effects of TCM can be very beneficial. A life-long bad back hasn’t bothered me in years and aging rheumatic joints have improved no end.
When I began this treatment I was diagnosed with a hyperactive thyroid. The endocrinologist wanted to prescribe the standard treatment and warned that it might take some time to achieve the right balance. I put her off and consulted my Chinese doctor who warned me not to take the standard drugs as there are very effective herbs that can deal with this problem. Six months later a re-test showed normal thyroid levels and they remain so to this day. My endocrinologist was lost for words!
My treatment came in three phases
I look upon my treatment as in three phases, with acupuncture provoking an additional healing process through inflicting ‘mini injuries’ that stimulate blood flow to injured areas.
Phase 1:
High, lethal doses to control the active, virulent condition.
Reduction of inflammation.
Repair of damage to bladder.
Phase 2:
Reduction in lethal dosage.
Boost the immune system.
Stimulate body defences.
Phase 3:
Continue with immune work.
Maintain a killing presence
My doctor frequently modifies the lethal cocktail to confound the bacteria. Occasionally they win, but thankfully not often.
Phase two was hard as the adjustments in prescription would occasionally flare my condition, but by then these attacks had become far less virulent and were generally short-lived. It took me a while to accept the rationale here – I wanted the safety of the lethal concoction all the time. Looking back though I know that this was short-term thinking and, to be healthy again, it was my own body that needed to work/strengthen and eliminate bacterial attacks.
In my opinion TCM requires loads of patience and a degree of faith. In experienced hands it is a potent alternative to antibiotics. I am now so profoundly glad that I stuck with it.
For anyone considering this treatment, I think it important to point out that in the UK practitioners of TCM are essentially unregulated, thus it is extremely important to check thoroughly that a practitioner is qualified.
Hi Jill,
Thank you for sharing your story. Wow, you have been on quite the journey. I am so pleased to hear that you have recovered. I too have also suffered with UTI’s- under the care of a Professor Malone Lee who prescribes high dose antibiotics..I am very interested though in natural remedies and was wondering if you would mind sharing the details of your chinese practioner. I am in London, so would like to make an appointment with her?
Thanks
Lana
Hi Jill,
Thanks for an inspiring story! May I ask if your symptoms got worse on Chinese herbs before they got better?
If possible, I would also like to know the details of your practitioner, I am a patient of dr Malone’s. I have also seen a Chinese herbalist that many of the professor’s patients are using, but his first batch of herbs intensified my urgency. I’ll try to stick with his treatment for a while, but if it does not work, I’d like to try another practitioner.
Thanks!
Lana,
I actually found the information on the CUTIC site. see here http://www.chronicutiinfo.com/natural-treatment-options/alternative-practitioners-uk/
Hi,
I too also suffer with recurrent esbl infections and always send off private samples. I am about to see a homeopath as I’m keen to try natural remedies, I currently have steroids injected into my bladder which brings down pain levels until I get another bad infection. I think this is a route I’m keen to try.
Thanks for your message and your interest in Jill’s story. She’s happy to answer questions, so I’ll make contact with you and put you in touch.
Anyone who has suffered from recurrent urinary tract infections recognizes the symptoms. When I get the first signs of the UTI, I take the XXXX XXXX Cranberry Concentrate and it nips it in the bud and provides relief. It contains methenamine, a substance that arrests the growth of bacteria in urine, and sodium salicylate, a mild analgesic. I take them like they say on the package and these pills work quickly providing much needed relief from the burning and pain of a UTI.
Hi Simone, thanks for your comments on Jill’s story. It’s great you’ve found something that works for you. Our shared patient experience hasn’t shown as much success using cranberry to manage or prevent symptoms. There are many women who find d-mannose can be helpful, however research shows it works best for UTI symptoms caused by an E.coli infection. I hope you continue to get good results with what you’re using.
Hi Jill
It’s really interesting to read your story. Im 31 and have been struggling with UTIs since 18. In the last 2 months, I’ve had 3 infections and taken numerous amount of antibiotics.
I live in North London – would I be able to get the name practitioner?
Hi Jessica, thanks for your interest in Jill’s story. We can report that she’s still doing very well. We will put you in touch.
Hi Jessica, thanks for your message. We can report that she’s still doing very well. We will put you in touch.
As an Acupuncturist and Herbalist myself – I’m delighted to hear that you stuck with treatment and earned a great success! Congratulations ! I recommend reading up on the lifestyle habits to strengthen your kidney yin. Once kidney yin is restored your bladder will no longer be subject to frequent infections. Regardless of microbe. Enjoy the journey!
Hello Matthew, thank you very much for your comment on Jill’s story. We would be most happy to hear more from you regarding your treatment for chronic UTI. Please feel free to contact us here or via our contact page.
Hi I have been diagnosed with ebsl too and have had 15 chronic utis in the past twelve months, screamingly painful, and always with blood..I will try a chinese practitioner too, frankly if it cured it I would stand on my head and drink a bottle of bleach to a band playing..we have all been there and so terribly desperate..I am on selexid now, and next one I get will be iv in hospital which I am desperately trying to avoid.I wonder where you get private urine cultures done, as I know when I am really heavy with bad infection my cultures, when the gp can be bothered to send them off for me..often show no infection..The government should really provide funding for new antibiotics, as the ones we have are very old indeed, but drug companies are not interested in laying out the money for new drugs, it is all profit for them at the end of the day..I will try hiprex, I saw it on the web, and hope it helps me..thanks for sharing your experiences, everyone, sue
Hi Sue, thanks for sharing your story. It’s a dreadful situation and much too common. There is information on our Treatment page about Andrew Flower in the UK who is a TCM practitioner with a special interest in chronic UTI http://www.chronicutiaustralia.org.au/treatment/ (this is not who Jill saw).
Also, please look at the chronic UTI specialists listed here: http://www.chronicutiaustralia.org.au/chronic-uti/chronic-uti-practitioners/
and here: http://www.chronicutiinfo.com/intro-key-info/treatment-uk-specialists/
You can also look for more information and support from one of the Facebook UTI chat groups available. Do a search in Facebook or contact us and we can point you in the right direction.
We hope you find some good help so you can get on top of your chronic UTI. Come back sometime and let us know how you get on.
I wanted to write a post here to confirm that I also have found success using Chinese herbs. To this day I can’t tell you exactly why but I knew that the antibiotics were screwing with my gut and making me feel dependent and afraid of lifelong use and worse, immunity to treatment. My father died from antibiotic resistance and I felt my medical practitioners have never seriously contemplated my reluctance to longstanding antibiotic use. I was in my early 30s and had 8 years of on and off antibiotic treatment.
From a referral from a friend, I saw Steven Clavey at Apricot Grove in Melbourne. I was highly skeptical but my partner encouraged me to stick with it. Within weeks I was able to have sex without an antibiotic prophylactic (Steven advised me to avoid preventative antibiotics). It was 8 months of morning and night herbal use before I weaned myself off.
This was 3 years ago. I’ve since had a few infections that became medically undiagnosable as they were negative in cultures. I was sent to a uro-gynaecologist who once again put me on antibiotics (fosfomycin and Hiprex). I am grateful to her in getting this infection under control, but once again found the antibiotics playing up with my gut. She suggested I would need Hiprex long term. After a month of taking them I decided to go back to my Chinese medicine specialist to build back in a prevention method. I hadn’t seen him at all this time around because I had started to find the herbs hard to ingest. He switched up the herbs to counteract my gag reflex (they really are quite horrible), and I’m off antibiotics again completely.
The reason I advocate Chinese medicine to my friends, despite my skeptical and Western science-based nature, is because I really think the research and practices for recurring UTI’s or Interstitial Cystitis are outdated and underfunded. When we are left to advocate on our own we have no option but to try other methods. I’d rather engage a potential placebo effect than deal with whole-body repercussions of long term antibiotic use. Western medicine tends to look at organs, not overall health, and I believe women are being given a raw deal with this approach. From the latest research I’ve seen, the microbiome of the bladder is as important as the microbiome of the gut. An overproduction of E. Coli in the gut from antibiotic use can increase likelihood of transferral to the bladder, and if the microbiome of the gut has been cleansed, there’s nothing to fight off this bacteria. New research also suggests bladder E. Coli has become “super E. Coli”, through antibiotic resistance and ill-health. They’re now trying to utilise the ‘glue’ of this biofilm for innovation. I’m sure they’ll utilise our gluey bacteria before they help us remove it.
Please try Chinese Medicine. Be discerning and be skeptical, but it might be your best option if like me, you’ve been put through the specialist merry-go-round.
May, thanks so much for sharing your experience with Chinese herbs. It’s wonderful you’ve had the same type of success Jill had treating UTIs this way. You’re welcome to contact us at contact@chronicutiaustralia.org.au if you want to talk further.
Hi there fellow sufferers,
I have had recurrent cystitus for over 6 years, every 3 months. I have now another bacteria super resistant to antibiotics.
I live in place between Lisbon and Cascais in Portugal and was wondering whether you have a register on Chinese Medicine Specialists here that specifically focus this.
With many thanks for your wonderful website and everyone’s contributions. So great to know that we are not alone.
Thanks for your message Rose. We don’t have a lot of information on traditional Chinese medicine (TCM) but we do have a little bit on our Treatment page. Scroll down to ‘Alternative Treatments’ https://newsite.diydigital.com.au/treatment/
Alternatively, most of our authors (like Jill) can be contacted. If you email us we will be happy to connect you: contact@chronicutiaustralia.org.au
You also might be interested in these patient recovery stories
Jean https://newsite.diydigital.com.au/jeans-chronic-uti-story/
Naomi https://newsite.diydigital.com.au/naomis-chronic-uti-story/
Hi Rose, please email us and we will try to connect you with others who may be able to help E. contact@chronicutiaustralia.org.au
Hello Jill, thank you so much for sharing your story. I’m 58 and have a chronic UTI that flares the minute I stop taking antibiotics. Trouble is, I am running out of antibiotic options because I get so many side effects so I know that I won’t be able to tolerate them for another year. I have been with two specialists in the last year in the UK and start with profs clinic next week. A few months ago one of my distant cousins told me she had been labelled with IC and the NHS left her with painkillers and nothing else. She told me that TCM and acupuncture was her cure. Today I started searching, trying to work out who a reputable one locally would be, and up came your story. I’m so pleased you have managed to find a solution and that you are beating this condition bit by bit. I too would love to know who your doctor is, but, as I am south of London it may be too far, have you got any idea what sort of qualifications I should be looking for? Your doctor may know of someone so perhaps I could ask. Sorry, lots of questions! Hope that’s OK x
Hi Cate, thanks for commenting on Jill’s story. If you email us, we will try to put you in touch with Jill so you can ask her some questions 🙂
Hello, could I get put through to Jill please, would really like to explore TCM. Thanks 🙂
Jill, you have so much resilience and strength to go through all that. Thank you for sharing your story. Would the administrators be able to give me the name of the practitioner she used as I live in North London.
Hi Angela, please email us so we can try to help you https://newsite.diydigital.com.au/contact/