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When a Urinary Tract Infection Becomes Untreatable

My name is Caroline Sampson. In 2016, I had a gynaecological procedure to help manage symptoms linked to the menopause. The day after the procedure, I developed severe pain in my lower abdomen. Doctors told me I had a urinary tract infection and gave me a short course of antibiotics. Although the device used in the procedure was removed, the infection did not go away.

Over the following months, I continued to experience intense pain and discomfort. Repeated urine tests showed no clear signs of infection, and doctors struggled to find the cause of my symptoms. I was repeatedly prescribed short courses of antibiotics, but they did not work. At the same time, my bladder became extremely sensitive and inflamed. Everyday foods such as fruit, spicy meals, or acidic drinks could trigger severe pain. Eventually, I was only able to drink water comfortably.

As my condition worsened, I was referred to a specialist doctor for the urinary system (urologist). I was told there was no evidence of infection and was even advised to seek psychiatric help. This was devastating for me. I knew something was seriously wrong with my body, yet I felt unheard and dismissed.

Later that year, I finally met with a doctor in the United Kingdom who specialised in long-term urinary tract infections. He confirmed that I did, in fact, have a serious bladder infection. I learned that some commonly used urine tests can miss infections, meaning people may continue suffering even when test results appear normal. By this stage, the bacteria had become deeply embedded in the bladder lining, making the infection much harder to treat.

Over the years, I went through many different treatments, including strong antibiotics taken by mouth and medication placed directly into my bladder. None of these treatments cleared the infection. Instead, I found myself trapped in a cycle of ongoing pain, repeated antibiotic use, and severe side effects. The antibiotics damaged my gut health and caused nerve pain in my legs. Eventually, the side effects became so severe that I could no longer tolerate antibiotic treatment at all.

The illness changed every part of my life. I had worked for 25 years at a school I loved, but the pain and exhaustion forced me to leave my job because I could no longer travel or concentrate properly. I now work from home, teaching English to secondary school learners on a one-to-one basis. Many of the simple things I once enjoyed — going to the theatre, travelling, or spending time with friends — became impossible because of my illness.

One of the hardest parts of my condition is that it is invisible. To others, I may appear healthy, but behind the scenes I live with constant pain and exhaustion. The emotional toll has been enormous. Alongside the physical suffering, I have struggled with the mental strain of living with a chronic infection and coping with the harmful effects of years of antibiotic treatment. I attend regular counselling sessions to help manage the emotional impact.

Despite everything, I have become a strong advocate for people living with chronic urinary tract infections. I have worked with other campaigners to raise awareness and push for better recognition of these conditions. In 2022, the National Health Service officially acknowledged Chronic Urinary Tract Infections on its online health platform. I was also part of advocacy efforts that helped lead to a parliamentary debate on Chronic Urinary Tract Infections in 2025, followed by the first All Party Parliamentary Group (APPG) meeting on the condition in 2026.

For me, these milestones matter because they bring hope that people living with chronic infections will finally be taken seriously. I believe that earlier diagnosis, better testing, and improved treatment options could prevent many people from experiencing the years of suffering I have endured. I also hope that as antimicrobial resistance continues to grow around the world, more attention will be given to developing safer and more effective treatments for chronic infections.

Additional information from The AMR Narrative:
Urinary Tract Infections or UTIs are common infections that affect parts of the urinary system, including the bladder, kidneys, or urethra. Symptoms can include pain or burning when urinating, needing to urinate often, lower abdominal pain, fever, or cloudy urine. Many urinary tract infections can be treated successfully with the correct antibiotics, but some infections become more difficult to manage if they are not diagnosed or treated early. People with ongoing or severe symptoms should seek medical care and follow advice from qualified healthcare professionals

Disclaimer: This story is shared with permission of the individual(s) involved and is intended for educational and awareness purposes only. It does not represent medical advice and should not be used as a substitute for consultation with qualified healthcare professionals. Please do not share this story widely on social media or other digital, printed or traditional channels, reproduce, modify, or use any part of it without prior written consent from The AMR Narrative. To request permission, please contact us here.

Caroline Sampson

Caroline Sampson is a UK patient advocate whose life changed after developing a chronic Urinary Tract Infection (UTI) following a routine medical procedure in 2016. Since then, she has become a leading voice for people living with chronic and recurrent UTIs, advocating for improved diagnosis, better treatment options, increased research, and greater awareness of antimicrobial resistance (AMR). Caroline regularly shares her lived experience at conferences and through national campaigns to help improve care and outcomes for patients.

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Cameron Prior

Cameron Prior

BVSc MSc PgCert CertAVP DipECVIM-CA MRCVS

RCVS Recognised Specialist in Small Animal Medicine

Cameron is a European Diplomate in Small Animal Internal Medicine. Passionate about fungal disease, antimicrobial stewardship, endocrinopathy, and facilitating multiple studies to enhance the evidence base of veterinary medicine. Keen to build collaborative projects with colleagues across Europe and to promote clinical research in practice.

Abi Mc Alester

Abi Mc Alester

I am a graduate from the National University of Galway with an Honours BSc in Pharmacology, and a recent graduate from Maynooth University with a MSc in Immunology & Global Health. Throughout university, I was an active member of the Global Health Network, which was a student-led group focusing on health, equity, and international development. Here is where I became interested in the global impact of AMR and the multiple factors that influence its spread. I chose to focus my studies on the mechanisms behind resistance and vaccination design; however, I understand that in order to have a global impact, there needs to be global awareness.

The AMR Narrative provides lived experiences and stories from those affected by resistance, something I believe is so important and why I wanted to help share these stories on social media. Translating scientific knowledge into digestible and understandable language is critical for fighting resistance.

Nduta Kamere

Nduta is a global health pharmacist and AMR consultant recognised for her leadership in antimicrobial stewardship, One Health, and healthcare equity. She has shaped AMR strategies and advanced healthcare accessibility across Africa, with a significant portfolio that includes contributions to the Commonwealth Partnerships for Antimicrobial Stewardship (CwPAMS) programmes. As Technical Lead, she oversaw the co-development of the Quadripartite Antimicrobial Resistance Toolkit for Youth Engagement, now used globally to drive advocacy and behaviour change.

Her expertise spans supply chains, pricing, and substandard and falsified medicines, and her research is published in the WHO Bulletin and peer-reviewed journals, informing regional and global AMR policy and practice.

Dr Marie-Anne Bouldouyre

Dr Marie-Anne Bouldouyre is an infectious diseases physician and hospital practitioner in Paris. Twelve years of clinical work in a suburban hospital shaped her understanding of access to care, patient relationships, and the daily reality of antimicrobial resistance.

Since 2022, she has led the Regional Antibiotic Stewardship Centre in Île-de-France and coordinates the national network, working with a multidisciplinary team to promote responsible antibiotic use and strengthen collaboration among healthcare professionals. She also continues to manage complex infections at Saint-Louis Hospital.

Convinced that antimicrobial resistance cannot be tackled by healthcare workers alone, she advocates for the active involvement of patients : understanding, questioning, and taking part in decisions about antibiotics. Their stories are essential to making this issue visible and concrete.

She is proud to collaborate with initiatives such as The AMR Narrative and hopes to foster similar projects in France to give patients a voice in this shared fight.

Dr Erva Cinar

Dr Erva Cinar is a London based paediatric resident doctor and clinical researcher with interest in infectious diseases.

She is currently completing a Master’s in Public Health at the London School of Hygiene & Tropical Medicine. Through the World Medical Association’s Junior Doctor’s Network (WMA-JDN) AMR Working Group, she engages in policy and advocacy on antimicrobial resistance and stewardship at global level.

Alongside her clinical and academic roles, she works with the Royal College of Paediatrics and Child Health (RCPCH) and the International Child Health Group (ICHG); leads on organising teaching resources and educational events to improve research skills for UK paediatric trainees and for global child health professionals.

Hamu Madzedze

Hamu Madzedze is a seasoned Zimbabwean journalist with over 15 years’ experience.

She previously worked for the Zimbabwe Broadcasting Corporation as a reporter and sub-editor, before establishing an independent website, 365HealthDiaries, which focuses on health and gender issues.

She holds a BA in Media Studies and a BA (Special Honours) in Communication and Media from the Zimbabwe Open University, as well as a diploma from the Christian College of Southern Africa.

Her work has been recognised with several awards, including the Global AMR Special Mention Award (2024), the Sexual Health Rights and Equity Fellowship Special Mention Award (2025), and the Merck Foundation Award (2024) for outstanding coverage of health issues, gender, infertility, and genital mutilation, where she achieved third position in the Online Category.

Hamu is passionate about addressing AMR through the media.

Jomana F. Musmar

Dr. Jomana Musmar is a distinguished global policy expert and proactive leader with over fifteen years of government experience in strategic planning, operational design, and policy execution. Renowned for simplifying complex topics with expertise and diplomacy, she has spearheaded innovative solutions to global health challenges, shaped impactful policies, and advanced national and international missions.

As the Executive Director of the Presidential Advisory Council on Combating Antibiotic-Resistant Bacteria, she established and led the council’s operations, liaising with over 600 experts, worldwide, across government, industry, and academia. Her efforts culminated in the development of critical recommendations addressing antimicrobial resistance and interrelated One Health issues, influencing both domestic and global health strategies.

In her tenure as Deputy Director of Strategic Initiatives for the Office of Infectious Diseases and HIV/AIDS Policy, at the US Department of Health and Human Services, Dr. Musmar oversaw the formulation and implementation of national health strategies for vaccines and a range of infectious diseases including HIV/AIDS and viral hepatitis. Her leadership and technical expertise facilitated groundbreaking policies during national emergencies, including responses to the COVID-19 pandemic, and initiatives to combat congenital syphilis and childhood vaccination disruptions. Dr. Musmar holds a Ph.D. in Biodefense from George Mason University, a Master’s degree in Biomedical Science policy and Advocacy from Georgetown University, and is a Lean Six Sigma Black Belt. Fluent in English and Arabic, she is a sought-after speaker and advisor, having represented the United States at premier global health conferences.

Her published works on antimicrobial resistance, pandemic preparedness, and national health security underscore her reputation as a thought leader and innovator in public health and biodefense.

Chris Shaffer

Chris Shaffer was a music, special education teacher, and high school principal for 45 years. At the end of his educational career, he was thrust into the world of AMR infections when a number of abdominal surgeries left him with an E-coli infection which failed to respond to antibiotics. After doctors in the USA left him with little hope for a cure, diminishing health, and a bleak prognosis, he set out on his own.

Chris found success in phage therapy at the Eliava Phage Therapy Center in Tbilisi, Georgia. With phage therapy giving Chris his life back, he has dedicated his retirement years to advocating for and helping raise awareness of phage therapy used for AMR infections. He tells the story of his phage journey in a book titled, Finding Phage: How I Partnered with a Friendly Virus to Cure My Deadly Bacterial Superinfection. His website, phagetherpyusa.com helps others learn to understand the healing power of phage therapy.

Demi Christofi

Demi is an Associate Scientific Director at a medical communications agency, with a background in microbiology and a longstanding focus on antimicrobial resistance. She holds an MSc in Microbiology, where she first became interested in the global challenge of resistance and the need to bring scientific understanding to wider audiences.

Demi’s career has centred on a simple but powerful belief: that how we communicate science matters. Her work focuses on making complex data clear, engaging, and accessible – whether for healthcare professionals, policy makers, or the patients most affected by infection and resistance. She has contributed to a wide range of AMR-focused projects, including educational programmes, congress communications and stewardship initiatives.

A central thread in Demi’s work is the importance of the patient voice. She is passionate about making sure real-world experiences of treatment failure, recurrent infections, and the anxiety surrounding resistance are not lost in the data. She believes that listening to patients and involving them meaningfully is essential for shaping more effective, human-centred responses to AMR.

Demi is also a strong advocate of the One Health approach, recognising AMR as a complex, interconnected issue that spans human health, animal health, and the environment. She is particularly drawn to efforts that move beyond siloed thinking and focus on practical, joined-up solutions.

In 2025, Demi joined The AMR Narrative as an Independent Advisor, where she supports the charity’s mission to centre communication, community, and inclusion in the global AMR response.

Outside of work, she is a Girlguiding unit leader and a qualified yoga teacher. These roles reflect her commitment to care, learning, and creating supportive spaces for others.

Andrea Hartley

Andrea has worked in health communications and campaigning for 3 decades. She is committed to fighting AMR through timely and appropriate communications globally,.

Andrea set up Skating Panda, the creative social and environmental impact consultancy, over a decade ago and drives its impact and growth. Focused on original and lasting public interest communications as well as issue strategy and advocacy, the Panda team has a track record of prompting tipping points in the status quo that drive better social and planetary outcomes.

Andrea’s combination of commercial marketing and development experience with deep issue knowledge have been sought by decision-makers at global summits, corporate and NGO board members, and have enabled her to set up multi-million fundraising platforms and push through policies that change and save lives. 

Andrea is Vice Chair of mothers2mothers, the world’s largest employer of women living with HIV, and a Board Director of Maymessy, a food poverty social enterprise.

A lifelong advocate for gender equality, she played a key role in establishing the UK’s Women’s Equality Party.

Esmita Charani

Professor Esmita Charani is a pharmacist and researcher investigating how we use antibiotics in different cultural and social contexts. She works with teams in the UK, India, and South Africa to develop research programmes investigating all aspects of antimicrobial resistance in human populations with a focus in hospital settings.

She has experience in communicating her research with patients and the public through various media including animations, blogs, and educational videos.