After several years of treatment, Frank decided to take more control of his care.
I had been having issues with urination, which led me to have some of my prostate removed (also known as a TURP operation). This was recommended by a consultant, Mr H.
I had my operation in November, and everything went smoothly. However, I still found myself in pain and unable to pass urine. They discharged me home with a catheter.
A month later, I was back in A&E unable to pass urine and recommended to talk the consultant about my other options for treatment at my follow-up appointment.
In the meantime, I went back to my GP and was diagnosed with another infection, prescribed antibiotics and told that it would likely clear up once my catheter had been removed. A few days later the practice called to tell me the wrong antibiotics had been prescribed! And that I would have to go back in to get the right ones.
In January, I went for my follow-up appointment with Mr H., but was seen by his registrar. He advised that they may not have removed sufficient of the prostate in the operation in December. He suggested that there might still be a blockage and recommended repeating the operation.
I suggested that we should try one more trial without catheter before going down that route. He agreed. Unfortunately, the trial did no go as well as I had hoped.
With the catheter removed, I was urinating frequently and experiencing smarting and burning sensations. I made appointment to see GP and left urine sample at surgery. I received a telephone call from the surgery saying that they had detected an infection and asked me to collect a prescription that day to start taking antibiotics, which I did.
Yet again, a few days later, I was called and told that I had been prescribed the wrong antibiotics and asked to come in to get a new prescription.
Having experienced a further blockage I presented at my GP surgery only to be referred to A&E at Stoke Mandeville. I drove to Stoke but the A&E team couldn’t fit a catheter to drain the urine and insisted that I be transferred to Wycombe urology Department by ambulance bringing a wheelchair and stretcher to the A&E Department to transfer my to the ambulance.
I insisted on walking to the ambulance. I would have been perfectly able to drive myself to Wycombe rather tie up an ambulance and 2 paramedics for over an hour. I was left with the problem of retrieving my car and paying an overnight parking charge.
I saw Dr A. at Wycombe Hospital who on the second attempt fitted a catheter draining 2 litres of urine from the bladder. He said he thought the previous operation had been a success and also confirmed that there was no infection. He advised me not to start taking the antibiotics my doctor had prescribed.
He felt the most likely cause of the problem was a “floppy bladder”, so that the bladder was not working well with the prostate to force the urine out. If that was the case he advised that permanent catheterisation would be necessary. He said that they could try removing more prostate.
I suggested that I might wish to seek a second opinion before deciding how to proceed as permanent catheterisation was not an attractive option.
I went to Prof. TM at UCLH for a second opinion. He advised that the problem was more likely to be with the prostate rather than a floppy bladder as the symptoms didn’t quite match up. He recommended a video urodynamic investigation – a way of measuring bladder pressure. He dictated a letter to Dr. C and Mr. H about this suggestion.
After 6 weeks, and a lot of chasing Mr. H’s office about the letter, he told me that Dr. C and Mr H agreed that the investigation would be useful. They booked me in for June, after, again, needing to chase a few times for information about the exact date of my appointment.
Unfortunately, Dr. G, who was doing the investigation, couldn’t insert the probe, so he decided to abandon it. He suggested that there might be scar tissue from the previous operation causing a blockage. He also said that a cystoscopy investigation (a small camera inserted into the urethra) under general anaesthetic should be done. That way, if they found anything wrong, they could fix it there and then. He told me Mr H would be in touch to discuss next steps.
Mr H agreed, and I had the cystoscopy and operation in July. I had my outpatient appointment with Mr H.’s colleague, Mr P. He said that the cause of the problems was swelling of the prostate with cells increasing in size and number due to old age. He also stated that they had removed a blockage. After a few months, I felt well, and healed. In January 2018, I was discharged
I am grateful that the problem was eventually resolved and that the second operation removed the threat of permanent catheterisation.
During this process, I have lost confidence in one of the GP’s at my local surgery. This is because of the repeated mis-prescribing of antibiotics. Being told to start and then shortly after to stop taking the prescribed medication was distressing and shook my confidence in the GP concerned. It happened 3 times!
A really frustrating part of this journey was that I felt that I was getting nowhere at Wycombe hospital. I felt that the team there were giving up on me. I had contacts at UCLH and through them was seen by the senior Urology consultant who wrote to the team at Wycombe proposing an alternative and ultimately successful plan of action.
I felt that I had to take a degree of control of the process to get things done more quickly. I pushed for earlier appointments and to urge a response to the letter from the UCLH consultant. I don’t accept that that letter took 6 weeks from when I saw the consultant at UCLH to get to Wycombe. I never felt that I was a priority for the team at Wycombe hospital.
So overall, I was pleased it got sorted but it was 2 years of pain and distress which has left long term damage to my self-confidence. I have also been left with other side effects from the ops and would now be unable to sire children!
I was not impressed with the local services, I feel lots of mistakes were made and I never felt that the local team really understood the problem and the appropriate solution. I feel that if I hadn’t sought a second opinion I may well have been left with a catheter for the rest of my life.
Can you relate to Frank’s experience? Let us know in the comments.
*Name has been changed to preserve anonymity. The picture is a stock photo.
Published on 8 Aug, 2019 (updated 3 Sep, 2019)