3 lessons NHS Urology have taught me

 

Last week I shared the news that I was in Urinary Retention and living with an indwelling catheter. It was writing the post last week that reminded me that this current experience hasn’t been a fluke and has been one that’s lasted for the whole of this year. In January, I began complaining about back pain and bloating, always dismissing it being hormonal; although April was the shift in accessing medical assistance I have learnt the following.

Urinary Retention is far more common in men than women

Over the course of a five-year-period, approximately 1 in 10 men over the age of 70 and almost 1 in three men in their 80s will experience urinary retention. When I attended my first trial without catheter and urology clinic, I was the only female patient and youngest patient in that clinic. I later, learnt that I was the only female on my Urologist’s case load. But, how does that present itself in statistics. Female speaking, 3 in 100,000 women develop acute urinary retention. Retention can be caused by neurological causes like MS but it can also be a fluke, the science in women experiencing retention remains open to discussion. Most cases, urinary retention comes on gradually and while at breaking point a number of weeks ago, I rung the hospital to seek support with a nasty infection that wasn’t clearing from the existing antibiotic. The on-call urologist I spoke to, said I was their only female patient and youngest patient in fact he wasn’t even overseeing my care. The urologist even knew about my case despite never meeting me or being on my case. When I explained my history to the urologist he recognised the gender factor playing havoc in me receiving adequate assistance in primary care. He said, for the majority, women are more likely to experience regular UTIs with many GPs often down playing the significance of them on the patient. TV Presenter, Cherry Healey spoke of the damage her GP had done in not considering the detrimental impact her reoccurring UTIs were having on her body and life.

an you tell where I am going with this one? Yep, you guessed it, gender health gap. The urologist, has surprised me, because rather than telling me to think positively and distract myself he gave me validation ahead of sharing his prognosis based on the notes. He advised that when women my age go into retention its usually the start of a condition called Fowlers Syndrome. First described in 1985, it is a cause of urinary retention (inability to pass water normally) in young women. Urinary retention in young women is not common but can be quite debilitating. The abnormality lies in the urethral sphincter (the muscle that keeps you continent). The problem is caused by the sphincter’s failure to relax to allow urine to be passed normally. There is no neurological disorder associated with the condition. My last urine, 10th April.

Taboo

The world has begun to accept stories of men women and children requiring a stoma bag, yet people continue to look uncomfortable around catheters collecting your urine. I will always use Dame Deborah James as the example here, she not only redefined living with terminal cancer but challenged our ick towards bowel habits. I remember her saying, everyone poops, even Beyonce. In the last three months of life of a catheter, I have frequently had awkward conversations, people finding it peculiar that I’m emptying my bladder through a valve. In UK, there are approx 120,000 people in the UK living with a stoma often off the back of colorectal cancer, inflammatory bowel disease, and other gastrointestinal conditions. Urological conditions like, incontinence and UTIs are incredibly prominent in the UK  but do not have the status in the British press. It was only recently, that I came to learn that there is a bladder equivalent of a stoma bag. I don’t care what anyone says, the idea of getting your female parts out to a health professional is daunting for anyone, even if you do flash your bits every weekend. Yesterday, I experienced yet more indwelling catheter complications leaving me back in hospital, the fear of having to have someone look at Margaret (Vagina’s nickname) I turned to my default setting – crack a joke. I said, “I’m sorry you’ve got to look at my private bits, and she said ‘I can promise you that we do not discuss patients gentiles or judge them’ and  I replied ‘You’ve surely got to write on your group chat you’ve met a patient with a funny shaped labia?” She said, no we don’t. We moan about our pay or working hours, not the patients.” Even with the reassurance from my health professionals, I continue to ask, why do urological conditions carry so much awkwardness?  Unfortunately, there are two reasons this is happening. The first, we see medical devices like catheters only existing in hospitals. I always got cannulas and catheters mixed up, so if I’m confused I can’t blame my friends looking at my catheter with so much confusion. Second, no bloody person speaks of bladder problems. We all have a person in our lives who is constantly needing the loo, but we laugh this off. A bit like when someone says “I’m a bit OCD”. OCD is not an adjective. It’s a condition. I would say, I hear or read about someone living with IBS at least once in a day. Yet, I have never seen bladder content up until now.

Pain is discomfort why are they never included together?

I’ve had more procedures in three months than I’ve had in my life lifetime; two enemas, four catheters with more scheduled for the later part of July. More latterly I had a camera go up my catheter but the vast amount of numbing jelly he gave me I was lunging for England afterwards. But, pain still exists. A catheter is in a hole that’s a one way zone, you don’t go the wrong way on the motorway like you don’t put anything up your water pipe. If it helps, there are two holes which neither me nor half a dozen of my friends.

Pain: an unpleasant sensory and emotional experience associated it’s more intense, while discomfort is less intense, less severe and generalised with unease or distress. All of my procedures, the NHS class as causing mild discomfort. but some are just painful. One example, I had a four hour self catheter lesson which left me in chuffing agony during the lesson and the insertion of a new catheter. As a Nation, are we scared to admit that some procedures are painful? Pain, unfortunately has been plagued by the Daily Mail and GB News readers as being for the woke community, pain is what Rish puts in the sick note culture motions. When my GP was later informed of my current situation, he asked if my current medication had triggered my retention, this week that theory was quashed when they reviewed my dose and the prescription duration. At one point, the urologist asked if I could stop taking the medication, but when I explained my rationale of ‘this has been the only drug to have allowed me to have respite from nerve pain and muscle weakness. I can’t withdraw from the drug when it’s give me so much back. And, I am as shocked as you are that I am holding amitrpyline in such high regards.

If you’re living with an undiagnosed and untreated condition, what have you learnt?

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