I was referred to a nephrologist in London who made a working diagnosis of Loin Pain Haematuria Syndrome (LPHS) as other causes had been excluded. I was told that I would grow out of it.
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).
In 2001 I had my 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 became more frequent and now I have severe pain every day.
I was referred to a nephrologist in London who made a working diagnosis of Loin Pain Haematuria Syndrome (LPHS) as other causes had been excluded. I was told that I would grow out of it.
I have learned that LPHS does not show up on any tests except kidney biopsy (& not always on biopsy). I was advised that this could make the pain worse and as there is no cure it was felt to be inadvisable action to take.
The Pain is absolutely agonising. In my experience childbirth was nowhere near as bad. It has different levels. Apparently it originates at the join of the kidney and ureter and causes the ureter to go into spasm. It is renal colic. It can be caused by blood clots in the kidney tubules or as I later found, by kinking of the ureter. It is the same pain that people feel when they get kidney stones, but I feel it every day.
It can be a deep, dull nagging pain in the loin, a feeling as if I have been punched. It started off with just the left side but over the last few years both or either sides hurt.
At this level I use heat packs and distraction.
The next level is the dull, constant pain with intermittent colicky pain on top. This pain often goes through to the groin and I feel sick or am sick. I also feel pain in my side (flank). I sometimes have a low-grade pyrexia. At this level I need to work harder. More mind games and oral opiate pain relief.
Then comes the unbearable bit. The spasm and pain get worse and worse, the pain sometimes going from loin to groin and then between my legs. It never ceases to amaze me how bad it is. It’s over-whelming. IT HURTS SO MUCH. It’s AGONY. At this stage I need intramuscular or intravenous drugs to even touch the pain. I cannot keep still and find myself in strange positions!
It is at this stage that I go to hospital, having taken all that I can at home (Voltarol, Paracetamol, Oxycodone in its fast & slow release form) & having taken intramuscular Diamorphine. If all this fails, that’s when I go to hospital.
It’s very hard to talk, think straight or remember anything when in severe pain so I find answering questions really hard. I carry a computer copy of any relevant paperwork (ie.medical, surgical history, drug reactions and investigations), as I would never be able to remember this information.
Following previous experiences of inappropriate care a PALS representative organised for me to carry letters written by my Consultant Urologist and Anaesthetist explaining the care I need, but unfortunately these too have been ignored at times.
My intention is always to get rid of the pain and to get better. We have spent all of our savings on complementary therapies in the hope of avoiding the use of drugs. I have learned all that I can about pain psychology. I hate taking drugs. Before this started I didn’t even like taking Paracetamol tablets. I have seen 2 pain psychologists and I see a pain consultant. I need to alter my medication doses each day to suit the level of pain as it varies greatly. My nurse training means that I can do this with confidence & I am happy to give myself intramuscular injections at home.
My pain is usually under-treated until someone from the pain team is involved in my care. Unfortunately they only work in the daytime and often it is late afternoon or evening when I am most likely to need admission.
I need big doses of opiates to even touch the pain at its worse. For me, Pethidine doesn’t work at all and Morphine doesn’t work as well as Diamorphine. I can no longer take Voltarol as it has caused PR bleeding and it only helped when the pain was at a low level anyway. Paracetamol does not help at all. Everyone requires different pain relief.
There seems to be an over-whelming reluctance amongst doctors, to give opiates and an unrealistic fear of addiction. Whilst I applaud caution with patients who are opiate naïve I cannot condone how I have been left in agony with ineffective analgesia for hours on end. Inappropriate care is less frequent, as I continue to help the local hospital staff to understand the condition.
An admission can last anything from 1-14 days roughly once every 6-8 weeks, after which the pain settles to a more manageable level. The pain is difficult to control as it is so variable.
If I get pain every day for a long period of time my body gets tolerant of the drugs and I need higher doses to control the pain. If I get gaps in the pain I have to reduce the drugs gradually otherwise I get withdrawal symptoms. These symptoms are really horrible, the closest you may get to know how it feels is how you feel when you have a bad dose of flu, but it’s worse than that. What often happens is that just when I have got off the drugs, the gap in pain finishes and the pain returns.
After 5 years I was referred to a different Consultant who thought that I might have Nephroptosis (a hyper-mobile kidney). A lying & standing IVU confirmed this. The pain was caused by kinking of the ureter (just as I had sensed!). I had a left Nephropexy that immediately cured the pain on the left side but as I reduced the medication I found I was left with right sided pain which has developed over the past 2 years. During this operation the kidney is stitched in its correct place.
It was found on a repeat Mag 3 scan (one had been done 4 years previously but had been normal) that the right kidney did not empty properly & this was thought to be causing the pain. 6 months after the left-sided Nephropexy I had the same operation done on the right side, as well as renal deneravation (cutting the nerve to the kidney). However this has not resulted in curing the pain.
The left kidney has started hurting again, although much less than before the operation. Overall there has been an improvement & I have managed to reduce my medication.
As a family we try to carry on as normally as possible. I don’t look ill. I cannot drive because the drugs make me drowsy. I don’t feel like walking far because I feel drugged and am no longer full of energy. The smallest things seem huge (like emptying the dishwasher). Some days I have so little energy that I cannot even get up. Some days I can get up & washed & some days I can even get dressed too. Everything seems a struggle at times. This has improved since stopping Oxynorm. I just take Diamorphine now with a background of Oxycontin.
I deal with pain every day and it’s really hard. When I have to go to hospital I hate it as it disrupts the family and it’s always a last resort. A few years ago I did manage to do my Return to Nursing course in a gap between episodes of pain, but I haven’t been able to work since. The loss of potential income is difficult. I have found that complementary therapies help me to feel better but they are too expensive to sustain. The most helpful treatment has been physiotherapy & McTimmoney Chiropractic treatments as these help to reduce the associated muscle spasm.
Through all of this suffering I have learned that we only ever have to deal with one moment at a time & I try very hard to stay ‘in the moment’. In addition to this, my faith helps me to cope with the pain.
Special thanks to my family & friends who support me; My local hospitals; The Middlesex hospital, London; The Royal Free hospital, London (Dr. Woolfson & Prof. Neild-retired); King’s College Hospital, London (Mr. Grange & Mr Thompson); Dr. Ahmed Ghanem (Google search his research on LPHS & Nephroptosis). Dr. Ghanem feels that there may be a link between LPHS & Nephroptosis.
Hypermobile kidneys are being left undiagnosed as Intravenous Urograms (IVU’s) are usually done in the supine position. An erect & supine IVU is required to diagnose this condition.
Page created: 24 August 2006
Last updated: 18 April 2008
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