My experiences of living with kidney pain

by Alison Banister

A fuller account of Alison’s experiences can be viewed in the Perceptions area (Click here to go to that page).

Note from Editor: Loin pain haematuria syndrome (LPHS) is a variable condition, and the majority of people with the condition experience mild or infrequent pain. However, some people experience severe pain for which there is not any fully effective treatment. Information on LPHS and 12 steps to pain control is available in the NKF Medical Information zone (just click on the links above).

Five years ago I had the first attack of agonising pain in my left loin. It was to be the first of many such attacks. In the first few years the attacks lasted from 2 hours to 2 weeks and I had gaps of days, weeks or months between episodes of pain. The pain then became more frequent and now I do not have gaps in the pain.

The Pain is absolutely agonising. Apparently it originates at the join of the kidney and ureter and causes the ureter to go into spasm. It is renal colic. The pain is caused by blood clots in the kidney but no one knows why it happens and, because it is rare, there is little research, if any.

When the pain is moderate, I use heat packs, a TENS machine (which stimulates nerve endings to produce endorphins; the bodys natural painkillers) and distraction. When the pain gets much stronger the spasm and pain get worse and worse, the pain sometimes going from loin to groin. It never ceases to amaze me how bad the pain is. It is over-whelming. It’s agony! It is at this stage that I have to go to hospital, having taken all that I can at home.

The only pain medications that help kidney pain are opiates. Anyone who has had morphine will appreciate that I spend all the time in a drugged haze. LPHS sufferers need huge amounts of opiates to control the pain.

As a family we try to carry on as normally as possible, but its hard. Everything seems hard when drugged or in pain. I do not look ill. People often think I am fine. I can even smile when I am in pain. I need lifts if I want to go out and I do not feel like walking far because I feel drugged and am no longer full of energy.

I miss seeing my friends so much and we have to cancel many plans. We do have holidays despite everything, but it is not nice being drugged on the beach or giving myself an injection on our small boat.

LPHS has been described as pain from hell. I hope that one day I will be cured.

POSTSCRIPT – Since writing the above article I have seen a different Consultant who suggested I have a lying & standing intravenous urogram (IVU). This found that when I stand up my left kidney drops 5cms (called a hyper mobile kidney)! I therefore had an operation to sort this out. Post Op I was on 400mgs opiates and I am now down to 80mgs and the pain is much reduced.

NKF Controlled Document No. 199, My experiences of living with kidney pain, written 24 August 2006. Last reviewed 5 November 2008.

The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.

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