Amy Lyons is looking forward to Christmas and the New Year for the first time in years.
The 22-year-old from Leeds had become virtually a prisoner in her own home after her bladder failed and she suffered incontinence.
She even had to give up her university degree course in York. But she says she can now look forward to the future and to going back to her studies.
Amy is the first patient in the UK, outside of medical trials, to benefit from a new generation of urological implant surgery.
She received the Axonics sacral nerve stimulator which controls her bladder, with life-changing results, in an operation at The Spire Leeds Hospital.
Today she says she feels ‘fully fixed’ and is looking forward to rebuilding her future.
It’s been a harrowing journey for Amy. It would be a difficult condition for anyone to deal with but particularly so for a young woman.
“My grandma has bladder problems, but not someone in their early 20s. It is embarrassing and as a result people just don’t talk about it,” says Amy, who is speaking out to try to break this stigma.
She was just seven when she started suffering repeated water infections.
“I just thought it was part of my life and I have to deal with it.”
But, when Amy was 19, her bladder stopped working completely. She had been feeling unwell with fever and back pain for a few weeks.
“It got so bad I was waking up in the night screaming in agony.”
She eventually went to A&E where she was diagnosed with a kidney infection and urinary tract infection (UTI) which led to sepsis.
“I probably left it a bit late to seek help,” admits Amy. She spent three weeks in St James’s Hospital, by which time her kidneys started to fail and her stomach started to swell with urine. “It got so bad people thought I was pregnant. I was begging for nurses to catheterise me to remove urine from my bladder. I hadn’t passed water for three days.” says Amy, who also suffers from hypermobility, which means she dislocates joints easily, and Ehlers Danlos syndrome type 3, which affects internal organs as well as skin.
She was taught to self-catheterise and had to repeat this up to 10 times a day to ensure urine was removed from her bladder. But it had started to take its toll on her psychologically and once home she developed agoraphobia. She didn’t leave the house for months and felt deeply embarrassed about her condition. She didn’t feel any need to urinate and had no control over her bladder despite self-catheterising.
“I was so worried that I would leak or worse, especially during lectures as I knew people just wouldn’t understand and so I gave up uni and want back to live at home.
“I was taking up to 40 tablets a day, mostly painkillers. I was at my lowest point and thought this was how I was going to be for the rest of my life,” recalls Amy.
Her mum had private healthcare through her company and Amy was referred to see Neil Harris, consultant urological surgeon, at Spire Leeds Hospital.
Tests revealed that her bladder was not contracting and had completely failed, which could have been down to her hypermobility
“Mr Harris told me that sacral neuromodulation could treat my problem. There was an existing device, and also a new device, which I would have to wait six months for as it was still going through clinical trials. I decided to wait, because one of the new device’s benefits is that it lasts 15 years in the body before requiring surgical replacement,” says Amy.
The miniaturised, pocket-sized, implant is placed below the skin in the lower back area and works in a similar way to a pacemaker in the heart, sending mild pulses to the sacral nerve to restore normal bladder activity.
Remote-controlled and rechargeable via a wireless system, it only needs replacing every 15 years, as opposed to five years for traditional implants. It is designed to treat both urinary and bowel dysfunction, including overactive bladder, which as many as one in three people suffer from, and urinary retention.
Mr Harris explains: “This device is an important evolution in sacral neuromodulators. It is likely to be more suitable than the existing device for certain patients. The main advantages are that it is the first rechargeable technology designed to last 15 years in the body, it is smaller, and the programming software is more advanced than earlier devices.”
Patients are required to have a two-week trial to check if it works for them before having a permanent implant.
Amy received the implant in April. The night after surgery, she passed urine naturally, and gradually the normal urge to pass urine returned. She has not leaked since the implant, does not need to catheterise as often and has not had another UTI.
The implant needs charging once a week for less than one hour, which she does by placing a charging device against her skin, which is secured in position with a supplied belt.
“Amy has had an excellent result,” says Mr Harris. “She has gone from being completely reliant upon catheters in order to drain her bladder to being catheter-free. This has understandably led to a dramatic improvement in her quality of life.”
Amy, now hopes to return to her English and Linguistics studies at York University once her other health problems are sorted.
“This device has really given me my confidence back and everything now feels more achievable. It has really been life-changing. Finally, I can look forward to the future.”