Perceptions
My experiences of living with kidney pain
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, bilateral 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). It is a diagnosis of exclusion.
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. 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.
The spasm and pain get worse and worse, the pain sometimes going from loin to groin and then between my legs. 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.
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 am under the care of a pain team. 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. Everyone requires different pain relief and it is important to have a supportive family doctor & pain team, as well as a Nephrologist & Urologist.
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.
An admission can last anything from 1-14 days roughly once every 2-8 weeks, after which the pain settles to a more manageable level. The pain is difficult to control as it is so variable. I find that a positive mind set and complementary therapies help to release endorphins.
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.I find the pain easier to control now it is constant.
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 all those years ago!). I had a left Nephropexy that immediately cured the pain on the left side. During this procedure the kidney is fixed to the rib. However, as I reduced the medication I found I still had the right sided pain.
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 manage to control my pain most of the time.
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 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. 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. I haven’t been able to work. The loss of potential income is difficult.
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; the staff at my local hospitals; Dr Woolfson, Nephrologist & the pain team at The Royal Free hospital, London; Mr Peter Thompson, Urologist King’s College Hospital, London; Dr A.N. Ghanem, Urologist.