"The threat of unecessary surgery"

After repeated urinary infections my doctor examined me in late summer 2015. I was subject to a rectal exam which found nothing untoward and a blood test for prostate cancer which raised no concerns. The doctor referred me to Raigmore Hospital for an ultra sound.

Some while later that ultra sound found that my 'empty' bladder contained two to two and half litres of urine and that there were cysts in my kidneys. The radiologist was visibly shocked, exclaimed at the size of my bladder and asked if I was being treated or had appointments for treatment. I had neither at the time.

Some weeks went by leaving me in this situation.

I was given an appointment at the urology department at Raigmore. I saw a nurse there who was to show me how to self catheterise to empty my bladder on a day to day basis. I noticed on my typed medical notes a manuscript note (which I cannot remember the precise wording of) which said something like 'if no improvement – prostectomy'. The notion of going direct from ultra scan to an assumption of an operation stayed with me.

The nurse did a further ultrasound scan before proceeding. She was shocked to find the same two and half litres of urine in my bladder. I found that disconcerting since that was the very reason I was there and she had my notes. I cannot fathom why she was so shocked but it did not boost my confidence when teamed with the assumption of an operation on my notes.

The nurse at once called for the assistance of a doctor who was concerned for my kidneys and admitted me while they took first half the urine away waited an hour or so and then emptied me and waited some more for fear my kidneys would show distress. I was fitted with a permanent catheter and discharged to make the most of it.

I do not know why such 'emergency' admission and concerns for my health were not taken when first the hospital saw my condition on ultra sound some weeks earlier.

I was placed in the care of local nurses. That was not a good experience. They were short of catheter bags and I was fitted with short bags and I was left too long with full bags which had no tap to empty them and no replacements. The bags they gave to me were, I understand, female bags with short lead tubes which hardly reached my thigh. These had to be left under the bed clothes at night instead of properly outside the bed at a low level to drain effectively. The short tubing allowed no space for a man's erection or the sex life that NHS websites says should be possible. That was painful and I think dangerous as morning erections hurt the penis and pulled hard on the balloon in the bladder – I was left with a bag full of one and half litres of urine dangling from and hard against my erect penis. The local nurses refused to accept they were using the wrong bags with too short lead tubes and would not accept such a notion of male and female bags or that one could have erections with a catheter inserted – despite that information being freely available on NHS websites which advises sex is possible when catheterised by folding the tubing back along the penis before sexual intercourse. In my case a bag of urine would need to be inserted in the vagina before I could get a penis near it! !

Eventually I was able to self catheterise as needed. No function has returned to my bladder which in lay terms could be described as paralysed. I obtain catheters by post from the NHS when needed and that works well.

In March 2016 I was admitted as an emergency case to Raigmore with intense pain and very high temperature. Eventually a kidney abscess was diagnosed, drained and after some time on too many drips to count I was discharged well some 8 days later.

I cannot complain about my treatment; all staff were really good although I did have irritating experiences where the bedside table was moved and food and drink placed on it out of my reach.

I was impressed by the consultant team especially, one who was first rate; open, honest, straightforward, knowledgeable and who treated me as an equal and did not talk down to me. I also saw another consultant whose name has since escaped me who was good too.

During that time I had a chest X-Ray and a CT scan and innumerable blood samples were taken.

Despite asking, no one ever seemed to know what happened with the chest X-Ray and I was left with an impression that medical staff were avoiding the subject, which remains disconcerting, and no NHS staff member has ever refereed to it since.

No prostate examinations were performed in hospital. I presume some testing for cancer was carried out on my bloods. No problems were reported to me bar the infection from the kidney.

After being discharged, I felt forgotten.

I was supposed to return for check scans with a month or two but that did not happen. After some six months my notes re-emerged and I went for a consultation with the doctor who was apologetic that I had been left to fend for myself. No known harm had apparently come from that thankfully.

What happened during that consultation has worried me but more so now due to things which have been reported in the media recently.

I felt that the consultation was conducted on the assumption that I was going to be operated upon to free the 'blockage'/prostectomy. I knew by then the difficulties this might give me after the operation. I explained that I was quite content with matters as they stood but the doctor was persuasive that an operation would enable me to urinate without a catheter. I might need, the doctor said, to press hard on my stomach to empty my bladder and I might experience erectile dysfunction or retro ejaculation. Asked about the risk of a kidney reinfection by self catheterisation I was told that was slight. Urinary tract infections from catheters might come about once in two years or so and there was a remote chance of some 'very nasty' cancer from irritation of the bladder by long term use of the catheter. It didn't appear to me that any of this was much of a risk and seemed preferable to going under the knife.

I queried the reasoning for assuming an operation was needed. No one had examined me physically for prostate problems since autumn 2015 (and now in 2017 no one else has) and the two exams, one by doctor one by nurse, had found nothing untoward. No blood test had indicated the presence of cancer and I was not aware that any ultrasound or CT scan had provided evidence of prostate or urinary tract problems. It seemed to me that there existed no evidence to suggest an operation was required. Why, I asked were no tests being done, why no exams, why no internal examination prior to the decision to operate. There was no evidence to suggest a urinary tract blockage. On this basis I said I would not agree to surgery.

It was agreed that I would undergo a cystoscopy.

When, eventually I had that cystoscopy it showed nothing unusual or anything of concern. There had been no need for anyone to consider operating on me.

I am greatly concerned.

Had I been less knowledgeable, less assertive, less questioning, or felt unable to confront the doctor, then it appears to me that I would have undergone unnecessary surgery for which there existed no clinical evidence of need. That lack of evidence was confirmed by cystoscopic exam findings of nothing untoward. It also seems to me that the presumption of surgical intervention was taken as early as 2015 on only the evidence of an ultrasound which had found a grossly distended bladder and kidney cysts: that presumption was as seen on my notes, in manuscript, when I first met a nurse for catheter training in late 2015.

My experience, of being assumed to need and being told I needed surgery, when there was no clinical evidence of need, cannot be unique.