Alison B's Story My experience of living with kidney pain, found to be caused by symptomatic nephroptosis, leading to loin pain haematuria syndrome In 2001 I had my first attack of agonising pain in my left loin, through to my left groin. I knew immediately that there was something wrong. It was to be the first of many such attacks. In the first few years the attacks lasted from two hours to two weeks and I had gaps of days, weeks or months between episodes of pain. Later the pain became more frequent until it was 24/7. The Pain The pain is severe. In my experience it is much, much worse than childbirth. It has different levels. It can be deep, bruised, dull nagging pain in the loin, a feeling as if I have been punched. It started on the left side then after a few years, both sides hurt. At this level I use heat packs and distraction. The next level is the dull, constant pain with intermittent severe colicky pain on top. This pain often goes through to the groin, commonly known as renal colic and I feel sick or (rarely) am sick. I also feel pain in my flank (side). At this levels I need to work harder/ I try to breathe deeply and rhythmically and focus on items around me. However, I learned that if I distract myself for too long and delay taking medication, the pain can be much harder to treat. It is easier to prevent pain than to treat it. I have learned all I can about pain psychology. I really dislike taking medication as it goes against my healthy living 'mantra'. I have tried many complementary therapies. I found that most helped a bit, though none cured. I often have to go to hospital. I carry a computer copy of any relevant paperwork (medical and surgical history, drug intolerances, allergies) as I find answering questions really hard when distracted by so much pain. My pain is usually under-treated until someone from the pain team is involved in my care. Hospital admissions were much more frequent in the years before an effective pain medication regime was found. Kidney pain often requires opiates and the longer I need these, the more tolerant I get and the higher dose required. This can get mistaken with addiction, which rarely happens when using opiates to treat pain. Since the pain is difficult to treat I am taking a mixture of different kinds of analgesics (opiates, neuropathic painkillers and anti-spasmodics). My nursing and midwifery background helps me to feel confident in my pain management. After about five years a London nephrologist diagnosed symptomatic nephroptosis - SN, commonly known as a hypermobile kidney, in my left kidney. This means that the kidney drops more than five cms, kinking the ureter at the same time. This is what causes the renal colic type pain. Since all kidney tests are done in the supine position, this condition gets missed. A lying and standing intravenous urogram is required to diagnose this condition. It can be normal to have a hypermobile kidney but not if it is associated with pain. I was given a nephropexy, where my left kidney was stitched to my rib. It was done under laparoscopy. This cured the left-sided pain, for a while. However, the pain was now in the right kidney. I was given a nephropexy on this side too, as the kidney was not draining properly. Urine trapped in the kidney was causing pain (hydronephrosis). Renal denervation was also performed, however the pain still remained. At this stage a diagnosis of loin pain haematuria (LPHS) was made by my nephrologist. There is unpublished release showing that SN can cause LPHS. However LPHS can also start out of the blue. It is often described as kidney stone type pain. By this time, both kidneys were hurting. The key to living with LPHS is in pain management. I am fortunate enough to be under a good pain team and I also have an excellent family doctor. Dealing with daily pain, often breaking through at severe levels 24/7, is a real challenge. Hospital admission causes disruption at home so I try my very best to manage my pain at home. I have adapted my life to live with LPHS. Simple tasks life self-care, can be exhausting, as is caring fro my family on top of that. I have learned that I only every have to take one moment at a time and that sounds manageable. I cannot work in my profession as a midwife, but I have recently been able to start some voluntary work as a street pastor in my local town and I am also training to be a La Leche League breastfeeding counsellor. I continue to raise awareness about SN and LPHS since early diagnosis of SN could prevent LPHS. Special thanks to my family and friends, my GP, local hospitals, King's College hospital, and the Royal Free hospital.