LEARNING TO LIVE WITH CHRONIC PROSTATITIS

Dr. Jon Bernardes

Originally Published in an earlier Prostate Focus.

Dr Jon Bernardes is the Principal Lecturer in Sociology at The University of Wolverhampton

It is clear from sufferers themselves in their letters to the PHA and on the Internet (especially on the Internet Group - sci.med.prostate.prostatitis) that this disease is extremely variable. I may be a wimp, but I feel that it is much more painful for sufferers than medical literature suggests. 

In late 1993, I experienced two weeks of Acute Prostatitis with fever, passing blood in urine and terrible pain; during this time I was hospitalised and then sent home because the disease was diagnosed as Chronic Prostatitis which is  'difficult to treat ' (code for unusual, more or less untreatable and uninteresting).  I had 4 months off sick and returned to work in May 1994 having just about adjusted to Chronic Prostatitis.

I have managed to learn to live with this nightmare.  Without continuing medication, I feel really ill, tingly all over, sick, numb and in a lot of pain.  I have pains on urination, bowel movements, any kind of physical movement - pains range from penis and testicles, lower abdomen, low back, waist line etc. 

The treatments I have found that help me to manage the condition..

1. Pain control drugs - my GP put me on Coproxamol. Consumption varies day by day, week by week and month by month but less than 20 tablets a week is good, more than 40 is a really bad patch.

2. Acupuncture - I came across this in several articles and was fairly sceptical.  After the first treatment I felt much, much worse and was close to calling out the doctor, but it passed after two days and I had two much better days.  This cycle went on with weekly, then fortnightly, now three or four weekly treatments.   Effect is variable but I am sure that when the treatment 'takes well', it really can give me one or two weeks when my painkiller consumption drops.

3. NHS Pain Clinic - The Consultant tried 4 different anti-depressants on the grounds that one of these would 'get at' the part of my brain where I 'felt the pain'. The first 3 had awful side effects and did not seem to help.  For me, the fourth (75Mg Dothiepin) seems to help by ensuring uninterrupted sleep - I take one at 9.30, by 11.00 I can hardly stay awake. I have my last pee at 11.30 and generally sleep through to 6.30 when I get up anyway. I am not aware of any side effects and have been on these for around a year.

4. NHS Pain Clinic - Epidural Caudal Block (a long needle is used to put the steroid drug into the base of  the spine where it soothes the nerves which transmit the pain signals) and Sacral IMPAR (an even longer needle which goes around the tip of the spine to flood the nerves leaving the spine for the prostate with the drug) - using Triamcinolone.  Whilst I was sceptical about this, I have audited my drug consumption and conclude it has had a real 20-30% effect over 4 to 6 months. One in early 1996 made the Spring and Summer more bearable. I had one in April 1997 and by mid May was feeling measurably better. This is a day patient procedure and can be quite painful although this may be because my spine does not quite match the normal configuration.

5. Trimethoprim - I have also found that 100Mg daily of Trimethoprim (a low dose) serves to keep the infection in check - if I drop this (as I did a few weeks ago), the fever, chills, sweats, sickness and dizziness all return with a vengeance.  As one fellow sufferer put it - feeling 100% ill.

Having said this, I find myself (like every sufferer, I am sure) often really fed up with the limitations to lifestyle. I can manage to work (as long as there are loos around and not too many stairs) as a University Lecturer and Researcher; BUT, most evenings I am more or less immobile and often face the dull torment of  trying not to move to limit the pain. My social life, evenings out, time with my wife and children have all gone - so has any major travelling unless absolutely necessary.

Our research on sufferers of BPH and Prostatitis finds that many men (with either condition) suffer in all kinds of ways and many find different ways to learn to live with their condition.  The details above work for me (so far!) and may work for you.

    J. Bernardes

OUT WITH THE OLD IN WITH THE NEW

We still get comment from men who find that their surgeons recommend the TURP, (transurethral resection of the prostate), over the ‘newer’ treatments.  I say ‘newer’ but many have been around and given a thorough testing for over a decade.

So I appears that telling your medic you would like a Gyrus treatment, for instance, may fall on deaf ears even today.

It seems that not all the side effects of treatments are fully explained to men who are sent my their GP for a consultation.  Loss of blood with the TURP is certainly a factor which should loom high in any patients priorities. Yet the chances of such blood loss are minimal with laser and Gyrus type treatments. 

Deaths are reported directly following a prostate operation because of blood loss, this with an operation which is regarded by many in the medical profession as a routine treatment.  The TURP operation has a well documented mortality rate and can also produce such side effects as incontinence, impotence and infertility.  What is not usually pointed out to the patient is that the operation is not necessarily a permanent solution. Repeat operations may be needed.  This repetition ramps up the chances of death and possible side effects.

With drugs available to treat the enlarged prostate and treatment machines which cause minimal, side effects, produce no blood loss and indeed are normally out-patient treatments, it really is time that the medical profession as a whole took a hard look at the alternatives to the so called 'gold standard'  treatment which is expensive, time consuming and has been in use for over half a century.

Over a decade ago a Urology Journal article in 1995 showed that the majority of hospitals supply none or "generally poor" information to men about to have a prostate operation.   For instance only 33% mentioned impotence risks and only 9% gave patients any information about alternative treatments available. It seems there is still some way to go to ‘full disclosure’.  (PD)