Episode 114: Loin Pain Haematuria Syndrome (LPHS): Katie’s Rare Kidney Disease Story

What is Loin Pain Haematuria Syndrome (LPHS), and what is it like to live with the severe, unpredictable pain of this rare kidney condition? In this episode of Diary of a Kidney Warrior Podcast, Dee Moore is joined by Katie Newell from Liverpool, England, who shares her experience of living with chronic kidney disease (CKD), renal stone disease and Loin Pain Haematuria Syndrome (LPHS). Katie’s kidney journey began at around 12 or 13 years old, when she developed persistent urinary tract infections. Further investigations eventually uncovered kidney problems and uric acid kidney stones. Despite treatment, Katie continued to produce and pass kidney stones and was diagnosed with renal stone disease and CKD. Her journey eventually led to a diagnosis of Loin Pain Haematuria Syndrome — a rare condition that has profoundly affected her everyday life. Katie shares candidly about: • Her journey from recurrent UTIs and kidney stones to an LPHS diagnosis • What Loin Pain Haematuria Syndrome is and the symptoms she experiences • Severe, unpredictable loin pain and visible blood in the urine (haematuria) • The lengthy process of ruling out other conditions before her LPHS diagnosis • Living with chronic pain and not knowing when an attack will happen • How LPHS has affected her independence and everyday activities • Pain management and learning to live with a condition that may not leave her completely pain-free • The impact of chronic kidney disease and chronic pain on mental health • Depression, anxiety and the importance of speaking openly about how you are feeling • Learning to ask for and accept help • Invisible disabilities and being judged because you “don’t look ill” • Why greater awareness of LPHS is needed among healthcare professionals • Turning her experience into advocacy and helping others living with rare conditions Katie describes attacks of excruciating pain that can appear without warning and last for hours or even days. She also explains how the unpredictability of LPHS has affected everything from shopping and driving to socialising and maintaining her independence. Mental health is another important part of Katie’s story. She speaks openly about experiencing depression and anxiety, seeking support and learning to adapt to a life she had not expected. Rather than focusing solely on what her condition has taken away, Katie has become passionate about raising awareness of LPHS, rare kidney diseases and invisible disabilities. She hopes that greater understanding — particularly among doctors, nurses and other healthcare professionals — will help others living with the condition feel less alone. Whether you are living with Loin Pain Haematuria Syndrome, chronic kidney disease, kidney stones, chronic pain or another invisible condition — or you support someone who is — Katie’s story offers insight, encouragement and an important reminder of the value of being heard. Disclaimer: This episode shares lived experience for educational and informational purposes and should not be used as a substitute for personalised medical advice. Symptoms and experiences can vary between individuals. Always speak with an appropriate healthcare professional about your own symptoms, diagnosis, medicines or treatment. Diary of a Kidney Warrior Podcast shares real stories and expert conversations to educate, empower and inspire people living with kidney disease and those who support them. Until next time, take care and choose to live.   Follow Diary of a Kidney Warrior:   📸Instagram: www.instagram.com/diaryofakidneywarrior  📘Facebook: www.facebook.com/diaryofakidneywarrior  🐦Twitter (X): www.twitter.com/diaryofakidneyw  🎵Tik Tok: @diaryofakidneywarrior  📺Youtube: https://www.youtube.com/channel/UChGUfib7lu9eKENlLJ6lafw 🔵 BlueSky: @diaryofakidneyw.bsky.social   💌 Join the Diary of a Kidney Warrior Family Mailing List Get updates on new episodes, vlogs, newsletters, and more! 👉🏽👉 Sign up here: https://diaryofakidneywarrior.getform.com/rjv47   📲 Follow Diary of a Kidney Warrior on WhatsApp Stay updated with new episodes and exclusive content! 👉🏽👉 Join here: https://whatsapp.com/channel/0029VaO3ms71iUxipp1eeh2r   Follow Katie on social media: 🎵TikTok @mizz_scouse & @lifewithlphs 📸Instagram & 🐦X (Twitter): @mizz_scouse   Kidney Care UK   💻 Website: www.kidneycareuk.org 📧 [email protected] 📞Tel: 01420 541 424 📘Facebook: www.facebook.com/kidneycareuk.org 📷Instagram: @kidneycareuk 🔵Blue Sky: https://bsky.app/profile/kidneycareuk.bsky.social 📺YouTube: https://www.youtube.com/channel/UCeqQTdAsEzXphqjHVtcTD-A   📩 To sign up to receive the Kidney Matters Quarterly Magazine Email: [email protected]     Kidney Care UK's Kidney Kitchen   Kidney Kitchen recipes are very carefully analysed and approved by the British Dietetic Association Renal Nutrition Specialist Group (RNG).   https://www.kidneycareuk.org/about-kidney-health/living-kidney-disease/kidney-kitchen/     Disclaimer: The information shared in this episode is for educational and informational purposes only and does not constitute medical advice. Always consult your doctor, consultant, or qualified healthcare professional regarding your individual health needs and before making any medical decisions. The views expressed by guests are their own and do not necessarily reflect those of the host, the Diary of a Kidney Warrior Podcast, or Kidney Care UK and are not intended to malign any religion, ethnic group, club, organisation, company, individual or anyone or anything.