This website uses cookies to allow us to understand our visitors and provide the best experience and information. If you prefer, you can turn off cookies in your browser.
Access to this website is also based on acceptance of our Terms of Use. |
If you live in Australia, it is unlikely you will receive a chronic UTI diagnosis. As it is an unrecognised form of UTI, there are no guidelines in Australia on how to treat chronic UTI. This page gives an overview of potential treatment options you can explore for chronic UTI, such as long-term antibiotic therapy, Hiprex, urinary bacteriotherapy, urinary vaccines, bacteriophage therapy and other alternative treatments (d-mannose, uva ursi, traditional Chinese medicine). We also look at some exciting future treatment options in the pipeline. We do not endorse any particular treatment, but we share the treatment options currently available, or treatments we are commonly asked about, as a starting point for you to research further.
If you present with symptoms of a UTI, treatment will most likely be a short course of first-line antibiotics, such as trimethoprim 300 mg orally at night for three days or nitrofurantoin 100 mg, six-hourly for five days. However, research has found that between 20–30 percent of patients will fail this treatment1 and may go on to develop complications of an embedded infection. For those who have standard culture tests that grow resistant pathogens, there are alternative antibiotics that can be prescribed. There are currently no treatment guidelines for the sub-group of patients who fail, or do not fully respond to, standard UTI therapy and fall outside these parameters (e.g. those whose MSU culture reports are interpreted as ‘negative’).
For someone in Australia with recurrent UTI (i.e. repeat UTIs that test positive using standard cultures), existing treatment guidelines include a trial of long-term prophylaxis (low-dose antibiotics to prevent further infections), self-start therapy or post-intercourse prophylaxis2.
In the United Kingdom and the United States, patients diagnosed with chronic UTI (by practitioners specially trained in diagnosing and treating the complex condition), are treated with long term, full dose, first-generation antibiotics. Due to the nature of the infection (with the bacteria embedded between and within bladder wall cells) the microbes causing the infection can remain safe from antibiotic or immune attack for long periods of time. It is when they become active—usually when the cells they are hiding in slowly shed into the urine—that the antibiotic effectively eradicates them. Therefore, antibiotic treatment protocols for chronic UTI require a constant level of antibiotics in the urine, over a lengthy period. This prevents active bacteria from escaping, reinfecting and colonising new cells in the bladder/urethral lining.
The treatment period for chronic UTI is individual and varies from patient to patient. If patients receive a diagnosis and treatment for chronic UTI early into the infection, treatment is usually complete within 6–12 months for reasons outlined above. However, by the time of diagnosis most patients have suffered a chronic infection for an average of six and a half years, so the infection is more complex and the treatment may take longer. CLICK HERE to find out more about the chronic UTI disease process.
This 2018 study is based on the chronic UTI treatment protocol developed by Professor James Malone-Lee and his team over many years.
Researchers from the University College London analysed the case studies of 624 women over ten years at the Lower Urinary Tract Symptoms (LUTS) Clinic at the Whittington Hospital, London. The patients had suffered their symptoms an average of six years, with no treatment having brought relief. The group included existing diagnoses of overactive bladder (OAB), bladder pain syndrome/interstitial cystitis (BPS/IC) and recurrent UTI (rUTI). Based on their symptoms and detection of pyuria (white blood cells) in microscopic analysis of immediately fresh urine, the patients were treated with a full dose of first-line, narrow spectrum oral antibiotics, such as cefalexin, nitrofurantoin or trimethoprim, along with the urinary antiseptic Hiprex, for an extended period.
Long-term antimicrobial treatment (for an average period of just over a year) resulted in significant reductions in patients’ urgency, pain, frequency and voiding symptoms, and a decrease in pyuria. The large majority (84 per cent) of the women who completed treatment experienced improvement: 64 per cent rated their condition as “very much better” and a further 20 per cent rated it as “better”. These improvements were achieved with a very low frequency of adverse effects and no increase in antibiotic resistance.
The study findings are important because, under standard diagnostic criteria, these patients would have been told they had no infection or an infection that was resistant to certain antimicrobial agents.
This second study looked at patients at the same UTI specialist treatment centre in London and how 122 patients responded when their treatment was suddenly stopped for four weeks. The study concludes that the “unplanned cessation of antibiotic therapy produced a resurgence of symptoms and lower urinary tract inflammation in patients with chronic LUTS, supporting an infective aetiology below the level of routine detection.”
There are practitioners in the United Kingdom and the United States who offer long-term antibiotic therapy to treat chronic UTI. Most of these practitioners will treat international patients who come to visit them in-clinic. The following website shares some information about chronic UTI practitioners based in the United Kingdom and United States. You can also learn more about the treatment offered at the NHS LUTS Clinic in London, which is the same treatment used at the private Harley Street Chronic UTI Clinic.
There are a growing number of General Practitioners in Australia who are treating chronic UTI with the treatment protocol described in the 2018 study outlined above. Contact us if you need help connecting with other chronic UTI patients who are being treated or who are researching their treatment options.
Hiprex is an old antibacterial agent that acts as a urinary antiseptic. It’s main function is to clear planktonic bacteria that release into the urine during the bacterial ‘release-replicate-reinfect’ shedding cycle. Therefore, it can play a supportive role and is often prescribed by chronic UTI specialists in conjunction with long-term antibiotics. Although it is considered safe, some patients report uncomfortable bladder symptoms when introducing Hiprex early on into treatment. Others have reported developing gastric discomfort. Patients have also found it is helpful to take vitamin C to enhance the mechanism of Hiprex by acidifying the urine.
In 2022, Harding et al. published a study in the British Medical Journal that compared methenamine hippurate (Hiprex) with the current standard prophylaxis (low dose antibiotics) for prevention of recurrent urinary tract infections in a group of 240 women aged 18 and over. The treatment period spanned 12-months with an additional 6-month follow up. The research concluded methenamine hippurate was non-inferior to prophylactic low-dose antibiotic therapy in helping prevent recurrence of infection and might be an appropriate alternative for women with a history of recurrent UTI.
The diagnosis of UTI was paramount in this study. The primary clinical outcome measure for UTI was defined as “the presence of at least one symptom reported by patients or clinicians from a predefined list produced by Public Health England, together with the taking of a discrete treatment course of antibiotics for UTI.” According to Professor Harding, who is a consultant urological surgeon with the NHS Trust, this meant that 48 percent of UTI episodes were not missed due to limitations of discredited urine culture tests.
On social media, Professor Harding said applying a clinical definition to UTI is one of the main strengths of the trial and he hopes it gives researchers the confidence to define UTI clinically rather than microbiologically.
Hiprex can be purchased over-the-counter in Australian pharmacies. More information can be found on the Hiprex website and this comprehensive information sheet along with this New Zealand Hiprex data sheet.
When women reach peri or post menopause their estrogen levels start to decrease. Some of these women may start to get recurrent UTIs. It is becoming more common for vaginal estrogen to be prescribed to help manage symptoms.
“The female hormone estrogen may protect against urinary tract infections in postmenopausal women by improving two of the body’s defense mechanisms, a new study found.” https://www.livescience.com/37563-uti-estrogen-menopause.html
US Urologist Dr. Rachel Rubin discusses the importance of vaginal hormone treatments for women over 45 https://www.urologytimes.com/view/dr-rubin-on-the-importance-of-vaginal-hormone-treatments-for-women-over-45
UK Urogynaecoligist Dr Rajvinder Khasriya discusses the role of hormones in treating UTIs https://www.balance-menopause.com/menopause-library/unpicking-utis-and-the-role-of-hormones-with-dr-rajvinder-khasriya/
This study examines the case of a 64 year old lady with menopausal symptoms and recurrent UTIs.
“The patient was offered treatment with vaginal estrogen therapy for her genitourinary syndrome of menopause (GSM). She was initiated on a 2-week course of nightly estradiol cream followed by maintenance therapy twice weekly. She was educated on the potential benefits of vaginal hormone treatment, including improvements in dryness and vaginal epithelial elasticity, and lowering of vaginal pH to premenopausal levels. The clinical benefits of improved lubrication, reduced or eliminated dyspareunia, and restoration of the vaginal microbiome to reduce UTI risk were also explained. Most important, the difference between systemic HRT and vaginal estrogen therapy was discussed, including the risks and benefits.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8058921/
If recurrent UTIs do not respond to vaginal estrogen therapy then some doctors prescribe vaginal DHEA in some women.
Dehydroepiandrosterone (DHEA) is a hormone produced by the body’s adrenal glands. The body uses DHEA to make androgens and estrogens, the male and female sex hormones. DHEA levels peak at about age 25, then go down steadily as you get older.
The brand name for vaginal DHEA is Intrarosa. It has been widely used in the UK and the US and is approved by the TGA for use in Australia https://www.tga.gov.au/resources/auspmd/intrarosa. It will be available from Australian pharmacies by prescription from June 2024.
Currently, very few Australian doctors are prescribing vaginal DHEA for the treatment of recurrent UTIs. However, the Australian Menopausal Society and the WHRIA discuss the use of vaginal DHEA for the treatment of vaginal atrophy. Its use has been shown to estrogenise the vaginal tissue and thus improve the vaginal microbiome https://www.menopause.org.au/members/ims-menopause-live/dhea-given-to-healthy-postmenopausal-women
“… there may be a role for giving low doses of DHEA vaginally. The vagina has all the enzyme systems necessary to convert DHEA into estrogens and androgens. Labrie and colleagues have shown that daily DHEA 6.5 mg given vaginally, estrogenizes the vagina and clinically improves menopause-induced vaginal atrophy.“
“Topical low-dose DHEA (6.5mg daily) applied to the vagina does result in oestrogenic effects, with no measurable circulatory levels of oestrogenic or androgenic steroids.” https://www.whria.com.au/for-patients/hormones/menopause-2/
The treatments we cover below are based on common enquiries we receive. There is little scientific evidence that we are aware of supporting their use or effectiveness in chronic UTI. The basic information we share can be a starting point for further research based on your own personal situation and preferences.
Immunomodulation is a treatment approach that aims to use the body’s own immune system to fight infection. The treatment works to stimulate the production of antibodies (proteins that the immune system produces to target and counteract specific bacterial or viral ‘antigens’), to strengthen the immune system’s attack on the disease producing-antigen. They are prepared from a form of the antigen that does not induce disease. Chronic UTI Australia Incorporated is aware of two on the market for UTI:
Uro-vaxom is an immuno-modulater designed to strengthen the immune system’s response to E.coli bacteria6. Research in animals has demonstrated a protective effect against experimental infections. The preventative treatment regimen consists of one capsule daily on an empty stomach for three consecutive months. Uro-vaxom can also be used as a 10+ day course of treatment for acute UTI episodes, in conjunction with antibiotics.
Uromune (MV140) is a vaccine marketed as a preventative treatment against four types of UTI-causing bacteria: E.coli, K. Pnuemoniae, P. Vulgaris and E. Faecalis. It is sprayed under the tongue (sublingual) daily for at least three consecutive months. In a 2022 randomised, placebo controlled, double blinded clinical trial, 240 women with a history or recurrent UTI received either Uromune (MV140) for three or six months, or placebo. During the follow-up period, the placebo patients experienced a median (IR) of three infections compared to a median (IR) of 0 infections for the Uromune patients. Among women treated with placebo, 25 percent remained free of UTIs compared with 56 and 58 percent of patients treated with three or six months of Uromune respectively. It is important to understand that the study focused on uncomplicated UTIs, and UTI episodes in the study were decided by positive urine culture (which is flawed), regardless of symptoms experienced.
In a 2024 interview, Dr Jennifer Rohn, a cellular microbiologist at University College London and head of the Chronic UTI Group said the study was small, focused on people with “relatively simple UTIs” and had not been peer-reviewed. She said the vaccine would not work for everyone due to the variation of how UTI develops, but potentially could help a lot of people. Dr Rohn is looking forward to more research involving larger numbers of people and more complicated UTI cases.
Uromune (MV140) can be accessed in Australia by a GP or specialist through the Therapeutic Goods Administration (TGA) Special Access Scheme (SAS) category b or the Authorised Prescriber pathway. Once approval is given by the TGA, Uromune can be ordered directly from the manufacturer, Immunotek. In Australia, a treatment program costs around $320 + delivery. Immunotek can be contacted by email: info@inmunotek.com.au
For more information outlining the steps involved in the approval and ordering process:
While these treatments appear to be safe, with only mild side-effects in a small proportion of people, we have heard mixed reports of their effectiveness. However, some patients have found this treatment useful when used in conjunction with another treatment. We have several anecdotal reports from chronic UTI patients who have had one or more courses of Uromune (MV140) while also being treated with full-dose antibiotics for a protracted period, who found they experienced fewer UTI flare-up while taking the treatment.
However, it appears neither vaccine/immunomodulation treatments described above is curative for chronic UTI. Our community patient experience suggests that, at present, vaccines and immuno-modulaters are probably best thought of as an adjunct to other treatments, rather than a stand-alone treatment for chronic, embedded UTI.
Dr Malcolm Starkey, an immunologist at Monash Univeristy, Melbourne, says a vaccine for UTI will be a game changer due to the way it will enable the host immune response to deal with the infection. In this 2024 Triple J radio interview, Dr Starkey explains his research team’s work in developing an immune therapy that targets componets of the immune response to provide a more personalised approach, rather than a broad sweeping vaccine (the interview starts at around 20:20).
Other UTI vaccine research we are following is by Dr Soman Abraham, Duke University in the United States. His team is working on a vaccine administered directly into the bladder that works by ‘teaching’ the bladder to more effectively fight off bacteria, while also clearing bladder cells infected by ‘persister’ bacteria.
Further information and patient experiences can be found in the online patient information and support groups. Please contact us if you would like a list of online groups we currently know about.
‘Bacteriophages’ (commonly called ‘phages’) are a type of virus that invade and infect bacteria. Phage therapy can be used instead of antibiotics or in combination with them.
Phages are a natural and essential part of the human microbiome. Each phage is highly specific to a given species, or even a certain few strains, of bacteria. The phage ‘feeds’ on the nutrients of the bacteria: when nutrients run out, the phage bursts open the bacterial cell and invades other bacterial cells of that type. When the bacteria run out, the phage disappears.
Phage therapy is the use of phages to treat disease-causing bacteria. Phage therapy was a promising area of UTI treatment in the early 20th century but was abandoned—at least in the United States and Western Europe—when antibiotics became commercially available 3. However, phage therapy has continued to be used in some Eastern European countries.
As part of phage treatment, tests are conducted to try to identify the specific pathogen causing the patients’ symptoms (and hence which phage might kill it). While the required laboratory analysis can be quite expensive, it means that—unlike antibiotics—the phage will kill only the intended pathogen and will not affect the rest of the person’s microbiome. However, as testing for chronic UTI (including DNA) is being heavily debated in the scientific community, some say there is no proof the identified pathogens in the urinary tract are responsible for the infection. This puts a question mark over the phages developed and if they are targeting the right bacteria.
The emergence of multiple antibiotic resistant organisms in the general community has led to renewed interest in and scientific research on phages. A recent review of research relevant to UTI is freely available online by searching for the following article:
Garretto, A., Miller-Ensminger, T., Wolfe, A.J. and Putonti, C., 2019. Bacteriophages of the lower urinary tract. Nature Reviews Urology, 16(7), pp.422-432.
While phages appear to have been used successfully to treat UTIs in many patients, and in optimising results from combined therapies, it is not a miracle cure and does not work for everyone. New approaches to using phages to treat UTIs are being investigated but are in the early stages of development 4.
Chronic UTI Australia Incorporated has limited experience of patients being treated with phage therapy. At present, phage preparations are classified as investigational drugs in Australia and are not widely available 5.
Melbourne’s Associate Professor Patrick Charles is an infectious disease specialist treating patients with frequent recurrent UTIs (confirmed by positive urine cultures) using urinary bacteriotherapy. This involves colonising the bladder with ‘good’ bacteria to prevent ‘bad’ bacteria from taking over and causing symptoms.
The bacterial solution is instilled direct into the bladder through a catheter over three consecutive days. Each procedure is brief and the solution needs to remain in the bladder for several hours before voiding. It does not require hospitilisation.
Urinary bacteriotherapy is said to work best for people with frequent recurrent UTIs (confirmed by positive urine cultures) just involving the bladder. It is not suited for infections involving the kidneys, infections caused by stents, catheters or kidney stones, people with low immune function or people taking antibiotics.
We currently have no patient reports on how effective this treatment has been for people with recurrent or chronic UTI. We have been told Dr Charles will only work with people who have culture-proven UTI.
For more information about urinary bacteriotherapy and if you are eligible for this treatment, you can contact the Austin Health Infectious Disease Department in Melbourne.
Some patients will pursue alternative treatments for their chronic UTI for a variety of reasons. They may not have access to a diagnosis or antibiotic treatment; some may not be able to tolerate antibiotics; and others simply prefer to follow a more natural treatment path. Popular alternative treatments reported by patients include natural products like d-mannose and uva ursi, other natural antimicrobials (ie allicin, oil of oregano, colloidal silver), traditional Chinese medicine, ozone therapy and dietary changes.
Success using alternative treatments varies between individuals and often involves trial and error. What works for one person might not work for the next. Reported success is based on anecdotal evidence, so exploring this treatment approach requires good research and communication with others who have successfully treated their own chronic infections. When you find the right treatment approach for you, it is important to realise that due to the nature of the embedded infection, any treatment is going to take a considerable amount of time and you need to be patient and persistent.
Please always do your own research on any potential treatment, including medicines that are considered ‘natural’, and discuss the information further with your healthcare professional.
Some people find the natural supplement d-mannose provides relief from some UTI symptoms. D-mannose is a naturally occurring sugar found in some foods, but the supplement form is sourced from trees such as the birch. Mannose is found throughout the human body and in the cells lining the bladder wall. Free floating bacteria, such as e. coli, are said to attach to the d-mannose that has made its way to your bladder and are then flushed out when you empty. The Sweet Cures website gives recommendations on how to dose d-mannose to treat UTIs and also as a preventative. The Australian D Mannose Info website also provides good information for those wanting to read more.
In updated NICE guidelines for treating recurrent UTIs, published in October 2018, information about d-mannose was included as a self-care option: “…some women with recurrent UTI may wish to try D‑mannose if they are not pregnant” as well as “The evidence was based on a study where D‑mannose was taken as 200 ml of 1% solution once daily in the evening. D‑mannose is a sugar that is available to buy as powder or tablets; it is not a medicine.” The supporting study quoted can be read here. More information detailing the committee’s discussion around self-care can be found here.
Professor Scott Hultgren’s research team at Washington University School of Medicine in St. Louis, USA, is working on a mannose UTI treatment that is many times more powerful than D-Mannose. His team has “chemically modified mannose to create a group of molecules, called mannosides, that are similar to mannose but changed in a way that the bacteria latch onto them more tightly with their pili. Unlike mannose receptors, though, these mannosides are not attached to the bladder wall, so bacteria that take hold of mannosides instead of mannose receptors are flushed out with urine’.
Read this article to learn more https://medicine.wustl.edu/news/uti-treatment-lowers-numbers-gut-e-coli-may-offer-alternative-antibiotics/
Some patients have reported finding uva ursi helpful in relieving UTI symptoms. The leaves of the evergreen uva ursi shrub (also referred to as bearberry) are said to have been used by Native American Indians to treat urinary infections. Uva ursi contains several chemicals and tannins that are effective in reducing inflammation and fighting infection. Uva Ursi is recommended for short-term use only and comes with some strong precautions and possible interactions. Like all potential treatments, uva ursi should be researched thoroughly and discussed with your healthcare practitioner to see if it is a right fit for you. Further information on usage and side effects can be found here.
Watch this video testimonial from one Australian who shares how she cured her chronic UTI by treating herself over a period of time with a combination of d-mannose and uva ursi.
There are anecdotal reports of people curing their chronic UTI using Chinese medicine, independently or in combination with mainstream antibiotics. In 2017 a London TCM practitioner ran a small trial treating people with recurrent/chronic UTI using Chinese herbal medicine. If you can access a good TCM practitioner locally, Andrew Flower of London will email them the formula used in the trial. You can contact Andrew Flower by emailing: andrewflower24@gmail.com
For more from patients who have used TCM, please read Jean’s story, Jill’s story and Naomi’s story on our recovery blog.
Please always do your own research on any potential treatment and discuss the information further with your healthcare professional.
The University College London’s (UCL) Chronic UTI Research Group is involved in developing an innovative new treatment for chronic UTI designed to put an end to the need for long-term, oral antibiotics. The technology involves filling micro-bubbles with high-dose antibiotics which are delivered directly into the bladder where they can penetrate the bladder wall. Once in place, the bubbles are activated and antibiotics are released at the source of the infection where they can eradicate the intracellular bacterial reservoirs. This exciting new technology has the potential to be used to treat a wide range of serious conditions, with clinical trials for chronic UTI taking place in 2019. The Atocap website states the following about chronic UTI:
“AtoCap’s development of penetrating nano-or microcapsules may offer a solution to all of these problems – introduced directly into the bladder in a simple, painless outpatient procedure. It offers a unique way to repurpose already-approved therapeutics for a renewed utility.”
More information about micro-bubble treatment can be found at: https://atocap.co.uk/ Along with this September 2020 paper Novel particles conferring eradication of deep tissue bacterial reservoirs for the treatment for chronic urinary tract infection.
The following Youtube video features Eleanor Stride, Professor of Engineering at Oxford University and joint Founder of Atocap. Professor Stride explains how microbubble technology works as a targeted drug delivery system and the exciting potential of this treatment beyond treating Chronic UTI.
– Read Next: What To Do If You think You have a Chronic UTI –
Table of Contents
×A young adult writes of her experiences as a child:
“I developed a chronic UTI as a result of recurrent childhood urinary infections which were repeatedly misdiagnosed and left untreated, resulting in severe bladder and kidney symptoms which left me with a diagnosis of interstitial cystitis. I am now 22 years old and this condition has stripped me of my entire childhood.
“I started to develop symptoms of severe urinary frequency and urgency when I was 6 years old. When my parents initially took me to see my GP, a urine dipstick was carried out and showed no signs of infection. A subsequent culture showed insignificant bacterial growth, resulting in no further treatment. When my symptoms subsequently worsened over the next 3 months, further negative dipsticks and cultures were carried out and I was misdiagnosed with overactive bladder syndrome. By this time, my urinary frequency had progressed to the point where I was urinating every 10 minutes and could not be away from a toilet for any length of time. My parents and school teachers were advised to encourage me to train my bladder to hold more urine by withholding access to a toilet, which resulted in such severe pain and embarrassment that I became terrified of going to school and missed a significant amount of my primary school education.
“Coincidentally, recurrent ear infections throughout my childhood meant that I was prescribed numerous short courses of antibiotics, which somewhat helped to reduce my bladder symptoms. However, my symptoms would recur quickly after the antibiotic course was finished. Despite this clear correlation in symptoms, any suggestion of an infection was dismissed repeatedly by my GP.
“I battled through my teenage years with fluctuating bladder symptoms that often left me leaving the classroom several times during school lessons and avoiding school trips and social interaction for fear of suffering bladder symptoms. When I was 17, I suddenly developed a severe worsening of symptoms, resulting in immense burning during urination, severe urgency, severe bladder pain and a sensation that I had a boiling hot marble stuck in my urethra. I saw my GP, who diagnosed me with a UTI based on my symptoms and prescribed me with a week-long course of antibiotics. However, despite a slight improvement in my symptoms during this time, the symptoms continued to linger. When my GP subsequently sent my urine off for culture, it revealed mixed growth of doubtful significance, and I was diagnosed with “post-UTI irritation” and placed on oxybutynin. This pattern of events continued to repeat over the next 3 months, with numerous short 3-day courses of antibiotics, oxybutynin, Vesicare and amitriptyline being prescribed in an attempt to relieve my pain.
“Over the course of the next 2 years, my symptoms continued to worsen. I saw my GP hundreds of times and was referred to a total of two urogynaecologists and two urologists, all of whom either diagnosed me with overactive bladder or interstitial cystitis, and one of who claimed that my symptoms were psychological in nature and that my brain was simply “wired differently” to everyone else. I underwent two urodynamic studies, three KUB ultrasounds and two rigid cystoscopies under anaesthetic, the second of which I also underwent a ureteroscopy, retrograde study, urethral dilation, ureter dilation and bladder distension following a misdiagnosis of kidney stones after a poor-quality CT scan. Unfortunately, these investigations caused a massive deterioration in my symptoms and I was hospitalised on multiple occasions with severe uncontrollable pain and vomiting, kidney infections, urinary retention and passing frank blood clots that were so thick that I was unable to pass urine. Each time I was admitted to hospital and given IV antibiotics, my symptoms would improve dramatically, only to relapse as soon as the course had finished.
“By the time I self-referred to ***** private clinic in 2015, I was near suicidal with pain. My symptoms included severe, debilitating pain in my urethra, bladder, kidneys and vagina, urine retention that frequently left me unable to pass urine for 24 hours at a time, significant voiding issues and incredible urgency which felt as though my bladder was tying itself in knots. I frequently passed thick blood clots, and the immense urethral burning that plagued me with this condition felt as though someone had filled my urethra with petrol and set it on fire. I often awoke at night screaming with pain because the pain of leaking urine in my sleep was so terrifying that I often thought I was being attacked.
“[The clinic] diagnosed me with a chronic UTI via microscopy on a fresh, unspun urine sample and immediately placed me on an extended course of antibiotics. Although my progress has been slow as a result of so many years of inadequate treatment resulting in a deeply embedded infection, I have finally reached the stage where my symptoms are under control and I do not require the care of urologists or my GP with regards to my bladder symptoms. I am now able to live a relatively normal life with minimal bladder symptoms, and I have returned to work and university. However, as a result of the extensive strain that my untreated chronic UTI has placed on my autonomic nervous system over the past 16 years, I have been diagnosed with postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia and gastrointestinal motility problems, thought to be due to gastroparesis, which are likely to be ongoing issues throughout my life.
“My greatest regret is that so many opportunities were missed to treat my symptoms when I was a child. Had I been given early access to treatment, my lifelong suffering could have been entirely preventable. I can only hope that in the future, children like myself will not be confined to the suffering and trauma that I have experienced.” [i]
[i] Malone-Lee, J., Cystitis Unmasked, 2021, pp241-244, tfm Publishing Limited, Castle Hill Barns, Harley, Shrewsbury, UK https://www.tfmpublishing.com/cystitis-unmasked