Loin pain haematuria syndrome
This information is about an uncommon and uncomfortable, but not life-threatening, kidney disease.
Where is the pain felt?
Pain is usually felt in the loin or flank, that is the area above the belly button and around the sides of the body. The pain does not tend to come round to the front, and does not usually spread below this level, but can vary quite a lot from person to person. Pain in this area more usually comes from the muscles and the spine, rather than from the kidney. Loin pain can also be caused by kidney stones or by infection.
What else can cause loin pain?
What is haematuria?
Haematuria is the medical term for blood in the urine. The amount of blood in the urine is usually very small and may only be picked up on special tests. Sometimes people pass enough blood that they will actually see it in their urine. Haematuria always requires tests to investigate it, as it may sometimes be caused by a serious illness. To make the diagnosis of loin pain haematuria syndrome, any serious cause for haematuria must have been ruled out. More information is available on haematuria.
What tests are needed?
Tests are done to rule out serious causes for these symptoms. Blood tests are done to ensure that the kidneys function normally. Urine is examined to exclude infection. X-rays or scans are usually done to look for stones or other abnormalities. Some people may require a kidney biopsy or renal angiogram if there are pointers to suggest possible inflammation in the kidneys or problems with the blood vessels to the kidney.
What causes loin pain haematuria?
This is a difficult question to answer. Some doctors have suggested that spasm of blood vessels within the kidney causes the loin pain haematuria syndrome, but in most people who have tests looking for this, nothing is found. We know that the blood leaks into the urine within the kidney, but we do not know why the condition is so painful. One of the difficulties in treating this condition is that it is very variable between people who suffer it; it is not even certain if this is one condition or a group of similar diseases.
Does it harm the kidneys?
How bad can the pain be?
Pain is the biggest problem in this condition. In some people it can be nothing other than an ache that disappears with time, but in others it can be a severe pain that comes and goes for years. Some people can be incapacitated by the pain, requiring time off work and strong painkillers.
What treatment is there?
Unfortunately, no treatment has been found to cure the loin pain haematuria syndrome. There are occasional reports of people who have got better with particular medicines, but attempts to repeat these “cures” have not been successful. This has lead doctors to suspect that people who have benefited from treatment have actually gained what is called the “placebo effect ” or that the condition got better on its own.
Does surgery help?
Unfortunately not. Many different types of operation have been tried to treat this condition over the years, but none have met with permanent success. Surgery sometimes gives rise to a short period without pain, but it usually returns. If the pain is one sided, operations to remove the kidney from that side usually result in pain starting on the other side. Removal of one or both kidneys for a condition that does the kidney no harm in the long run, is not recommended.
What pain killers are used?
Any painkiller can be used for treating the loin pain haematuria syndrome. One of the biggest problems with regards this condition however is that the use of stronger and stronger painkillers can result in problems of drug habituation and dependency. Patients with this condition may become frustrated if they do not always get the strongest possible medicines, but the problem of drug side effects can be serious too.
Is the loin pain psychological?
Studies have shown that people with the loin pain haematuria syndrome have a higher rate of psychological problems than other people. This is also found in other types of chronic pain. These problems can be very varied and may have significant effects on the way in which the person deals with their pain. Treatment of these may make the pain easier to control. Input from counsellors or a psychologist or psychiatrist may help.
What is the long-term outlook?
There are no recorded cases in which the loin pain haematuria syndrome lasted for life. In most cases, the pain gradually starts to ease off without any medical or surgical therapy, and eventually disappears. The pain sometimes resolves in response to a change in social circumstances. This may take years in some cases, during which time life can be difficult.
The Internet has increased the amount of information about loin-pain haematuria and there are now some discussion groups that some may find helpful. However some of the experiences and comments on these sites can be very extreme, so please treat with great caution. Here is one.
- 12 steps to pain management, by Dr Rob Higgins, on the NKF(UK) site, is useful.
- Loin pain haematuria syndrome on the NKF(UK) site.
- Loin pain haematuria consists of loin or flank pain with blood in the urine.
- The cause of the condition is not known. It can improve with time.
- Loin pain haematuria does not damage the kidneys.
- It can be difficult to treat but strong painkillers should be avoided if possible. Surgery is not recommended.
Acknowledgements: The author of this page was Paddy Gibson. It was first published in November 2000. The date it was last modified is shown in the footer.