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Following on from our series of blogs about chronic pain, we opened the floor to you, our Members, to tell us how chronic pain affects your lives. We are delighted to share our second guest blog, this time from a different person, about their life with chronic pain.
One of many conditions is called hypospadias, which is a type of variation in foetal development that affects the penis. At a young age, I required major external and internal reconstruction to my genitals. I had my first surgery at the age of ten. Twenty-five years later, I started experiencing problems.
In 2001, I suffered respiratory failure due to a strain of pneumonia. Because I was in an ICU, I was provided with a suprapubic catheter (a catheter inserted through the belly into the bladder to allow urine to drain from the body). I could not have the usual catheter, as I had a stricture in my urethra. This was why I would spend so long on the loo; I dribbled. I still use the suprapubic catheter today.
About a year after I left the ICU, I started to experience blockages; I couldn’t pass urine. The pain was excruciating. I kept trying to go, over and over again, but to my agony and dismay, I just couldn’t. I suffered with bladder spasms, and my catheter constantly required changing and washing out. I sought counselling due to the distress I was under.
Then, in 2008, I was in such constant pain that I was referred to Urology. After having an x-ray, I discovered that I had bladder stones, and felt relief in finally knowing what was causing all the pain I was in. A year later, I had a unique surgery called a perineal urethrostomy which would allow me to pee without the need for a catheter. At the time, I couldn’t have been more excited. The surgery involves a procedure where the urethra is rerouted, so that its opening is between the scrotum and the rectum. I had the surgery, and it went successfully. The only issue I had now was a physiological one; I wondered what I would do if I ever needed the toilet on a long journey or the like.
In 2010, there were a few times I found that I couldn’t pee, causing me immense amounts of pain. After a second visit to Urology, I was catheterised again, but this time, the catheter was kept in until I had physiology test, which I eventually had. As a result of the test, I was diagnosed with an overactive bladder. This is where the bladder spasms, meaning that you can’t pee regardless of whether you have a catheter. The spasms can last from fifteen minutes to a few hours.
In the end, I needed catheter changes every two weeks and daily bladder washouts, partly due to there being a lot of debris in my bladder, including build-ups of bladder stones. The washouts were but a temporary relief. The only other way I found I could truly help ease the pain was to go to bed, seek the support of my ventilator, and relax – or, at least, try to. Much of the time, this is exactly what I did.
By 2014, the constant on/off pains were really getting to me. I felt frustrated and stressed that I had to keep withdrawing from meetings, both those I was invited to attend and those I organised. I felt guilty of letting people down, and, not to mention, I had to keep cancelling on the PA I had at the time. My physical health was having such an affect on my mental health and that of those around me, trying to help me to the best of their ability. I ended up in the counsellor’s office again.
Then, finally, in 2017, after being diagnosed with more stones (I had been having a procedure every eighteen months to get rid of them), surgeons provided me with a new suprapubic catheter, to see if it would help. It did, but only until late 2020. I started having pains again and so went to the GP.
I was diagnosed with prostatitis and was prescribed medication. It helped. But then, in early 2021, the pain came back once more. I had the same symptoms. I had more antibiotics. I was referred to Urology again. Low and behold, the cystoscopy showed that there were more stones. Rocks, even. I needed an ultrasound and a CT scan to confirm the sizes of them, to determine the way forward. I waited an entire year to have these, mainly because of the COVID-19 pandemic.
Forward to February 2022. I’m seeing the Urology Consultant, who confirms that I have several ‘rocks’ and discusses the options available for removing them. As in the past, I was to have a spinal block and the stones zapped with a laser. It would be in June or July when I’d be able to have the stones taken out, and it was in March the NHS could restart general surgeries.
However, by early May, I deteriorated, finding myself in hospital with urosepsis. I spent eleven days receiving treatment. My condition improved but I felt far from perfect. Meanwhile, I was still without a date for my surgery.
I was admitted to hospital again ten days after the first instance. On this occasion, the doctors discovered that I had kidney trouble and needed a bilateral nephrostomy, which is having a drainage tube inserted into each kidney. Because of the extreme pain I’d been in, particularly the two months’ prior, I was taking every painkiller going: paracetamol, naproxen, and even morphine. It was regularly taking naproxen that caused the kidney trouble.
I stopped all social and volunteering work because the pain was simply too much, but then, there came a light at the end of the tunnel. I had a date for surgery, the 24th June 2022.
The procedure wasn’t as straightforward as I had expected. I went into theatre and had a spinal block, but about half hour into the surgery, it became apparent that it was going to be more complicated than first thought. Not only was my bowel squashing my bladder, but the surgeons were having to navigate scarring from previous surgeries that I’d had. I put under general anaesthetic, and after coming round, I learnt I had been in theatre for seven hours.
Initially, I was still leaking, but after a few weeks, the condition began to settle down. I was still weak but doing much better than before. For the first time in years, I required no bladder washouts. Because of having history of bladder stones and being prone to them, I’m now constantly monitored to make sure that they don’t become rocks again.
One way or another, I’ll always be at risk of chronic pain. It’s part of the nature of the disabilities and medical conditions that I have. It is difficult to try to live with it; I still take painkillers and retreat to my ventilator in order to relax. Extraordinarily, having severe scoliosis, I’m fortunate to not be living with back pain, however I sometimes have issues with my organs, such as my lungs.
Written by a Member of Equal Lives
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