Katie's story: living with CKD and LPHS

From delayed diagnoses to new medication, Katie discusses how living with LPHS and CKD has taken its toll and how she's striving to help others living with the condition.

My diagnosis of LPHS and CKD

"It's taken about 23 years to get a formal diagnosis of loin pain haematuria syndrome (LPHS). LPHS is a condition that causes severe pain around the loin and results in blood in the urine. When I was a young girl, I used to get water infections that turned into kidney infections. My mum would take me to the GP, but they would just tell her it was hormones, or periods, or puberty.

"Eventually I saw a different doctor who sent me to urology, and I was diagnosed with pelvic ureteric junction obstruction in my kidneys. I had various surgeries and at about 16 I was transferred to nephrology and at 17 I was diagnosed with chronic kidney disease (CKD) stage 1.

"About a decade later, after more infections and issues, I was diagnosed with CKD stage 2 and by pure chance, in the last two years, I've seen a consultant, Dr Goldsmith, who explained that I might have LPHS. I had heard of LPHS, and I’d read about it, but there isn’t a lot of information out there. Dr Goldsmith said that he needed to check what I didn't have, just to make sure it definitely was LPHS. I had months of tests: 24-hour urine collections, checks that I didn't have tuberculosis in my kidneys, issues that I didn’t know existed. After about 12 months I was formally diagnosed with LPHS."

Katie Newell - 13th birthday, after CKD diagnosis
Katie on her 13th birthday

Living with LPHS and CKD

"I've been living with chronic pain for over 20 years. The pain from LPHS can be horrendous, and it gets you down. Even a few years ago, I was able to work full time, drive a manual car, go out to the theatre or the cinema, on holidays with mates. I can't really do any of that now – it’s the things most people wouldn’t even think of being a challenge.

"My pain is mostly on my left side, so I've had to swap to an automatic car because changing gear can be really painful. I get anxious and worried that the pain will start if I am on my own, so I have someone with me at all times if I go out. If the pain is bad, I can't sleep in bed, I have to sit up in a chair. Sometimes it’s difficult lifting my left leg up to get dressed, and I struggle walking. Jeans are too restrictive. It's the silly things that people take for granted that add up.

"LPHS has taken away my independence. If I get invited to go somewhere, I always have to ask where and for how long. I couldn't go to see the Taylor Swift concert recently because I knew I wouldn’t be able to stand for 3 hours. It's the unpredictability, the pain can come on so quickly and can last for weeks at a time. You never know day to day what the pain will be like, what you'll be able to do."

Raising awareness of LPHS

"I missed an awful lot of my last year at school, from the pain, and I remember the school ringing mum and threatening her about attendance. My urologist – he was always lovely – wrote a really strongly worded letter to my head of year saying that he would let me come in to do my GCSEs if the school would pay for the bed I was supposed to be in, for all the nurses to help me, for the medication I was on. After that letter, I got my predicted grades! I understand LPHS is a rare condition, but people just don’t know anything about it.

"I've found since being diagnosed with LPHS that I am happy to educate other healthcare professionals. Because the condition is so rare, they don’t really how much pain you can be in. When you speak with doctors about it, especially GPs, they don’t have a clue."

  • Katie Newell - with mum
  • Katie Newell - with niece

Katie with her mum and niece

"In 2016, I claimed disability benefits and I was awarded the low rate of Personal Independence Payment (PIP). I had no official diagnosis then, even though I was in so much pain, and I went to tribunal to challenge the low rate. During the tribunal, the panel said, ‘Miss Newell, remember that we can take away as well as give. You can leave here with nothing, so you may want to rethink your situation’. It felt like I was begging.

"I sat in front of three men at the tribunal and told them that for years, all I wanted to be was a nurse like my mum. I had been at university, starting to achieve that goal, but in my second year I had to stop and drop out because of the pain. I watched all the other nurses graduate, knowing I should have been there. All I wanted to do was to be a healthcare professional and help people. Their response was to say that I could help people in 'another way'. They just didn’t understand.

"After the tribunal, I received a phone call from a PIP assessor who told me she felt I wasn’t getting enough help. She was really lovely and went through all questions with me and I explained everything to her. Thankfully I get the full rate of PIP now, but it took about three years to resolve."

*Kidney Care UK's PIP Helper is a free tool that may be able to help you in your PIP application.

  • Katie Newell - with brother on his wedding day - cropped
  • Katie Newell - with dad on brother's wedding day

Katie with her brother and her dad, on her brother's wedding day

New medication and building a community

"When Dr Goldsmith diagnosed me with LPHS, he told me there was a medication that had been trialled in men in the UK, and that only other option was a renal autotransplant where the surgeon removes the kidney that's causing pain and implants it in a different part of the body. I chose to try the medication first. It took six weeks for Dr Goldsmith to get sign off and he is the only person who can prescribe it to me currently, but it has been phenomenal in the last few months. There is no research in the UK about women being on the medication I am on, but I’m hopeful that it will help other women (and men) very soon. Since I’ve started, the pain hasn't completely gone but I'm able to do more. Even walking my dogs for a short distance and not having to stop is a massive thing.

"I want to be living. I don’t want to just be existing, and I want to help other people with LPHS. I want to embrace my condition and turn it into a positive, to create a community of people living with LPHS. I started a TikTok page when I got the formal diagnosis and I had a woman from the Netherlands message me saying that her medical team hadn’t heard of LPHS until she saw my page, and now she is getting treatment after her consultant chatted to mine. I’ve also spoken on the Diary of a Kidney Warrior podcast, to raise awareness.

"Getting a diagnosis of CKD and LPHS is life-changing, it’s raw and painful. But I think it is also beautiful in a way: it makes you, you, and there is no one else like you in the world.

"Finally, I just want to thank Dr Goldsmith and my pain consultant, Dr Jones, for their amazing care and treatment. They have both gone above and beyond for me over the years."

Rare Kidney Diseases: Katie's Journey with Loin Pain Haematuria Syndrome

Episode 114

Rare Kidney Diseases: Katie's Journey with Loin Pain Haematuria Syndrome

Katie Newell shares her journey with rare kidney condition Loin Pain Haematuria Syndrome (LPHS). Katie discusses the impact of LPHS on her physical and mental health, and her mission to raise awareness around this painful and often misunderstood condition.