After Rachel Ingrim gave birth to her second child in October 2012 she could no longer go for a wee.
The 31-year-old mother-of-two birthed her daughter Isla, now 10, and after labour she found that no matter how much water she drank, she couldn’t pass urine.
She was seen urgently in hospital and says doctors told her she had two litres of urine in her bladder.
Women’s bladders are usually able to hold up to 500ml and men’s 700ml.
Rachel claimed she looked ‘six months pregnant’ due to the build-up of fluid and says she was in ‘absolute agony’.
Doctors simply emptied Rachel’s bladder and sent her home.
Her inability to wee continued for more than five years, but Rachel was simply told by doctors to ‘sit in the bathroom and run the tap’.
She was fitted with a catheter – a flexible tube used to empty the bladder and collect urine in a drainage bag – which she used before finally being diagnosed with Fowler’s syndrome in April 2015.
Fowler’s syndrome is urine retention or the inability to pass water normally and Rachel suffered with it for years before going private to get the diagnosis.
In May 2015 she had a sacral nerve stimulator fitted. A sacral neuromodulator is a pacemaker device implanted into the body. Instead of stimulating the heart, it controls better urination.
But after a fall which dislodged the device, Rachel was back to square one and unable to wee again.
After a major operation to remove the pacemaker, Rachel had a Mitrofanoff procedure which took four hours.
It uses part of the appendix to form a channel between the bladder and tummy skin. The patient passes a catheter through the channel to drain urine.
Once it was fitted in March 2019, Rachel says her life was ‘complete’.
Rachel, a teaching assistant from Ashford, Kent, said: ‘Initially after the operation, the first six months were hell.
‘I was so poorly, I ended up with a blood clot in my leg, and multiple different chest infections, my body was so weak and run down – I didn’t think I would get better.
‘It has given me my life back, I had no life, I didn’t want to be here. I didn’t think it was fair on my family but now they have got me back.’
She added: ‘The doctors didn’t know what was wrong with me they hadn’t seen it before.
‘My life is completely different – I am back at work and have trained to be a teaching assistant and have started going gym.
‘Don’t get me wrong it is not completely problem-free, and I still have the odd bump in the road.’
Rachel described her ordeal in more detail claiming she felt ‘fobbed off’ when she initially went to the doctors. She said hospital staff even told her she was ‘too young’ to have bladder issues.
After initially having her bladder drained, Rachel found herself in the same situation just five hours later and headed back to the hospital.
She said: ‘The nurse ended up catheterising me and left it in so I could wee. They told me that they would speak to urology and get back to me.
‘I was seen by a urologist within a couple of weeks after going private. I was told I would have to wait years for an appointment on the NHS.’
Fowler’s Syndrome UK explains that only 30% of GPs are aware of the condition – meaning a diagnosis can take years.
Rachel said: ‘I was told I might have MS – I was told it might be problems with my spine – I was given all sorts of tests.
‘When I finally had the private appointment, I remember crying. The doctor asked me what was wrong, and I said how I finally felt listened to.
‘To finally have an answer was such a relief that I could move forward with my life.’
Fowler’s Syndrome symptoms and tests:
- Inability to urinate
- Inability to feel the bladder is full
- Pain in the stomach, bladder, pelvis, back and kidneys
- Infection, fever or blood in the urine
- Increased risk of sepsis
- A sphincter Electromyogram (EMG): A small needle is used to take recordings from the sphincter.
- Ultrasound Sphincter Volume Measurement: A small probe is placed in the vagina and measurements are taken.
- Urethral Pressure Profile: A catheter is inserted into the urethra and saline is infused slowly through the catheter. The catheter is then withdrawn and re-inserted into the bladder six times, whilst the pressure of the urethral sphincter is measured.
- Urodynamics: Also known as a cytometry, this involves placing two small catheters (tubes), one in the bladder and one in the rectum. The bladder is slowly filled with saline and is monitored for any irregular spasms. Once the bladder is full, you are asked to pass urine with the catheters in.
- Flow Rate: If you can pass urine, you sit on special lavatory that measures the speed of your stream and how long it takes you to pass urine. The computer measures the flow rate of urine. It then draws a graph. We can use this to see if your stream is interrupted and the severity.
Source: Fowler’s Syndrome UK
According to Fowlers Syndrome UK, 85% of women with the disease say the condition has had a severe or devastating impact on their life.
Now, Rachel is using her experience with the disease to support other women living with Fowler’s Syndrome.
She said: ‘When Dani – Fowler’s Syndrome UK CEO – contacted me before the charity was registered, it was a no-brainer for me as I knew how desperate I was for help and support.
‘Having the charity has been a life support for people.’
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