December 2016 – a business trip for the day, 100 miles from home – and suddenly I couldn’t pee!
For years I’d had the usual problems of an enlarged prostate – frequent need to urinate, especially in the night, and often, difficulty in getting started.
That December I had visited my doctor because I was fed up with getting up in the night as many as five times to pee. I’d been taking Tamsulosin for some years. Its purpose is to relax the muscle in the prostate, but it wasn’t doing much of a job anymore. The doctor gave me some Anticholinergic medication to calm the bladder – one in the morning and one at night but he advised me to just take the one at night. He told me that some people find it helpful to take one in the morning if they are going on a long journey. So, I took one each night and it certainly helped reduce the number of trips to the toilet. My GP also referred me urgently to see a Urinary Consultant.
Then came the day I had to travel 100 miles by car for a business trip. Remembering what my GP had said, I took a tablet ion the morning. What my GP hadn’t told me what that the drug could cause urinary retention. When I arrived at my destination, I needed to pee, but I couldn’t pass any urine. Throughout that morning I kept trying but with no success. By lunch time I was desperate and visited the local community hospital. After an hour of hanging around I was told that no one there could help me, and I needed to go to A&E which was about 12 miles away. They refused to call an ambulance on the grounds that it wasn’t an emergency. (I’ve since discovered that it is indeed a medical emergency because of potential damage to the kidneys). There was no way I could drive so I took a taxi which cost £50!
I was seen quickly at A&E and catheterised which provided instant relief. I had to stay there for a couple of hours waiting for blood test results to ensure there was no kidney damage. Fortunately, I was given the all clear but told I had to remain catheterised for a couple of weeks pending a Trial Without Catheter (TWOC) which would be done near my home.
I saw a Consultant and had an MRI scan to rule out cancer – no cancer thank goodness. I failed the TWOC and was told I would be put on the list for an operation – A Trans Urethral Resection of the Prostate (TERP). That was at the beginning of 2017.
My catheter was changed periodically by the District Nurses and every time it was changed, I developed Prostatitis – an infection and inflammation of the Prostate. I found these episodes very painful. I was reduced to tears on more than one occasion in spite of taking opiate painkillers. What was very difficult to cope with was the seemingly endless delay to the operation.
In June a friend of mine told me about a treatment called HOLEP – Holmium Laser Enucleation of the Prostate, which a friend of hers had undergone by a private surgeon in Cambridge. An operation that has much better results than TERP and with much less side effects. My response was that there was no way I could afford a private operation. My friend very very generously said she would pay for it! Such kindness – I was overcome.
The surgeon is based in Cambridge but also operates in London, so I arranged to be treated there in three weeks’ time. Whilst waiting I developed Prostatitis again and this time with a high fever. I was admitted to hospital locally and treated with intravenous antibiotics. Imagine my horror when the local consultant said she didn’t think my operation would go ahead because of the infection. Kindly, she contacted the surgeon in Cambridge who agreed to proceed provided I remained on oral anti biotics.
So, in July 2017 I underwent the HOLEP operation, 8 months after first being catheterised. After the operation a double catheter is used to flush the bladder. When it was removed the next day, I found I was completely incontinent. The surgeon said it would probably right itself within a couple of days. It didn’t! I had to wear incontinence pants until October! And the NHS don’t provide them!!
Incontinence after 8 months of suffering was like the straw that broke the camel’s back. I lost all self-esteem and self-confidence. At first, I was unable to go out because I could need a change of pants within minutes. When I could go out, I didn’t want to. From the earliest age we are taught to not soil our pants and here was I at 69 years old doing just that.
In October the surgeon asked my GP to prescribe Tolterodine to calm my bladder. With the medication and pelvic floor exercises I finally got control again almost a year after it all started.
My GP apologised to me for prescribing the drug which he thought may have triggered the urinary retention although he thought it was likely to have happened at some point anyway. I also discovered that the incontinence was because my bladder had become very muscular due to being catheterised for so long, and that is why I have to remain on the Tolterodine. Thank you, NHS, waiting lists. I also discovered that HOLEP is available on the NHS but not where I live. Pity I didn’t know that before.
So, after so much negative complaining what can I say that’s positive? The HOLEP has worked! I am now in full control of my bladder. I can pee like a teenager and I go right through the night. Because of the way HOLEP is done there is virtually no chance of my prostate enlarging again. I don’t hold any grudge against my doctor. I still think he’s a great GP; and all the NHS staff I encountered were lovely.
So, if you have the symptoms of an enlarged prostate – go see your GP and ask lots of questions. If you need an operation, I suggest you seriously consider HOLEP and find out where it’s performed.