Alexis's Inspiring Interview: "I haven’t been able to pee for two years due to Fowlers Syndrome...But I'm proud I kept advocating for my son and I."
- Ellie Howe
- May 9
- 10 min read
Growing up in Perth in Western Australia, Alexis has experienced painful, irregular, and heavy periods from a young age, but at the time she didn’t realise that what she was going through wasn’t ‘normal’. She admits that the topic of women’s health wasn’t as openly discussed then as it is today, creating a whole generation of women who believed their pain was something they simply had to accept or live with, often without hope for relief or answers.
However, this changed when Alexis was 16 and, after finishing a ten-hour shift operating a tractor at her job on a regional farm, was suddenly hit by a wave of pain so intense it felt as though her entire body was going to explode. As she had done for so many years, she initially tried to push through the pain, even as her co-workers began expressing their concern over how pale and unwell she looked. Eventually, however, the pain became so intense that Alexis was rushed to hospital, where doctors initially suspected that she had appendicitis.
But after being moved to a larger facility back in Perth, doctors told her that the cause of her pain wasn’t appendicitis after all, but Endometriosis - a chronic condition where tissue similar to the lining of the uterus grows outside of it, often attaching to other organs and causing severe pain, inflammation, and other ongoing symptoms.
To find out more about Endometriosis, click the link below:
Endometriosis
After years of suffering in silence, finally knowing what was causing her pain should have been a moment of relief for Alexis. But instead, the reality was far from comforting as she recalls what doctors said to her soon after she received this diagnosis.
“They basically said, ‘You’ve got it - but we can’t do anything’,” she explains, “They even told me I wouldn’t be able to have kids.”
While it's true that endometriosis can impact fertility, Endometriosis UK highlights that this is not a universal outcome - even though, as in Alexis’s case, it’s sometimes presented as though it is. In fact, just before her 18th birthday, Alexis became one of the estimated 60 - 70% of those with endometriosis who can conceive naturally when she found out she was pregnant. But while pregnancy was able to put a stop to her painful periods for 9 months, it didn’t put an end to her struggles.
Although there’s limited scientific research definitively linking endometriosis to specific pregnancy complications, the stories of thousands of women paint a different picture, many of which closely echo Alexis’s own traumatic birth experience.
“From 32 weeks, I was considered high-risk, after I went to the hospital due to reduced movements and found out I was in labour,” she explains, “I was having contractions every five minutes, but because I wasn’t dilated, they slowed it down, but I kept having contractions until I hit 39 weeks.”
“But, in May 2019, I gave birth to the most amazing little boy and named him Leo. But just like everything else with the pregnancy, my labour was also incredibly difficult,” she continues, “I ended up with multiple tears after giving birth which resulted in some complications. This was the first time I also experienced zero sensation of my bladder, but I didn’t have this looked at as I knew giving birth can do random things.”
These complications, however, would go on to foreshadow new health issues that would alter the course of Alexis’s life in ways she never would have imagined having to deal with as a new mum.
In March 2020, the world shut down due to the COVID-19 pandemic and, like many, Alexis had her vaccine when it was offered to her in 2021, but within 24 hours she noticed her feet turning purple. She was initially told by medical professionals that she’d likely had a reaction to the vaccine that would eventually pass, but from there her health only continued to spiral out control.
"I don't want to be sceptical or one of those, you know…” Alexis is sure to clarify, highlighting the conflict many people face when trying to make sense of the onset of sudden, unexplained health problems, “but I just can’t ignore how pretty much my issues all started from there, like my major issues.”
One of the most concerning issues Alexis faced was how she suddenly couldn’t eat without extreme pain and medical professionals began to worry that she had developed a condition called Gastroparesis, a condition where the stomach muscles stop functioning properly, preventing it from emptying food in a normal way and causing symptoms such as nausea, vomiting, bloating, and intense abdominal pain. For Alexis, this meant that even a few bites of food could leave her doubled over in agony and in the space of 3 months she had lost over 50kg because of this. But rather than raising alarm bells, her rapid weight loss was initially overlooked by medical professionals.
“The issue was that I was technically overweight prior to it all happening,” Alexis explains, “So, rather than being concerned I had lost so much weight in such a short space of time, it was more like, ‘oh, that's great! What are you doing?’ and I was like, ‘nothing, my body just is not working!’”.
Alexis’s health continued to deteriorate after she contracted COVID In March 2022. While her case wasn’t severe in the traditional sense, as she had no major respiratory symptoms, she began experiencing severe cardiovascular symptoms and every time she stood her heart rate would jump to around 200 beats per minute.
Because of this, doctors began suspecting she had Postural Orthostatic Tachycardia Syndrome, often shortened to POTS, where the body struggles to regulate blood flow and heart rate, leading to dizziness, palpitations, fatigue, and fainting. But before she could even begin to process this possibility, things took a critical turn as, during her long-awaited endometriosis surgery, Alexis experienced a cardiac arrest on the operating table after gas was introduced into her abdomen.
She recalls the experience: “I remember going in early that morning, fasting and waiting for pre-admission, when one of the nurses who had read through my history and heard what I’d been through, came up to me and said she was really glad I was finally getting the surgery and was hoping for a great outcome.” she explained, before continuing, “When I woke up in ICU, she was right there by my bedside and the first person to tell me that I had actually had a cardiac arrest during the operation.”
Following this, Alexis was officially diagnosed with Autonomic Dysfunction, a condition that affects the nervous system, which is responsible for regulating all the autonomic functions in the body, like heart rate, blood pressure, and temperature control. POTS, the conditions doctors initially suspected was causing her symptoms, is one of the many disorders to fall under this umbrella. But while this diagnosis helped make sense of many of her symptoms, it was far from the final answer.
In early 2023, Alexis was diagnosed with another rare condition called Fowler's Syndrome.
When she first woke to find she couldn’t urinate, Alexis recalls how she wasn't overly concerned, assuming it might be stress-related or a side effect of one of her medications. But concern soon began to creep in as hours turned into days where she still couldn’t go to the toilet. When she eventually decided to go to the hospital, doctors ended up draining a shocking two litres of urine from her bladder. For context, a healthy adult bladder typically holds around 400 to 500 millilitres when full, and most people begin to feel the urge to go at around 200 to 300 millilitres, meaning Alexis's bladder was holding more than four times the normal amount.
It was after this extreme experience that Alexis was diagnosed with Fowlers Syndrome, a condition which causes full or partial urinary retention in young women. Essentially, while the bladder itself is healthy, there is a disruption in the communication between the brain and bladder muscles, causing them to remain contracted even when the bladder is full. While some people with Fowlers experience only mild or intermittent symptoms, Alexis's case is so severe that she hasn't been able to urinate on her own for more than two years and now lives without any sensation or awareness of her bladder at all.
To find out more about Fowlers Syndrome, click the links below:
Fowlers Syndrome
According to Alexis, she is currently one of only around 50-100 people in Australia with a confirmed diagnosis of Fowler's Syndrome, which has made it particularly hard to find doctors who understand the condition and know how to manage such a severe case.
Initially, she was trained to self-catheterise, which is the most common treatment for mild cases of Fowler's Syndrome. This process involves inserting a thin, flexible tube into the urethra several times a day to manually drain the bladder. While this method worked for a while, the severity of Alexis's condition eventually led to her muscles remaining so tightly contracted that her urethra, as well as her bladder, became completely blocked, meaning she could no longer insert the tube at all and would often end up in hospital to have emergency bladder drains instead.
As a result, doctors decided to insert a permanent suprapubic catheter (SPC), which is a tube inserted directly into the bladder through a small incision in the abdomen. This allows urine to drain continuously into a catheter bag, and over the last year, it has provided a more stable way for Alexis to manage her condition. However, the SPC brings its own set of challenges, including frequent infections.
In May 2024, Alexis had a sacral neuromodulator implanted to try and stimulate her bladder and improve her overall condition. Like a pacemaker, the device sends gentle electrical impulses to the sacral nerves that control bladder and bowel function with the aim to restore communication between the nerves and the muscles they control. Unlike catheterisation or a suprapubic catheter, which are forms of symptom management, this was considered a potential treatment which has been successful for those with less severe symptoms.
However, given how severe and sudden Alexis’s symptoms had been, her urologist was estimated there was only a 1% chance it would help her and, unfortunately, he was right. In fact, almost immediately after the device was implanted, Alexis’s bowel function also completely shut down. As a result, the modulator was removed in January 2025, and Alexis has since found herself losing more and more hope each day.
“I think the hardest thing I’ve had to accept is that, at 22 years old, I lost my ability to pee,”
It’s a sentence that most people never imagine themselves saying, especially not at such a young age. But for Alexis, this simple truth reflects the overwhelming reality she faces every day.
“At times, I feel like I’ve lost complete hope in the healthcare system and in my health,” she admits, before going on to highlight what should have been a routine experience which left her not only in physical pain but emotionally scarred, “One nurse changed my catheter just hours after I had my modulator put in. She pulled it out, then applied numbing gel, but the passage was already closing quickly. She tried to force it back in after five minutes, even though I was still in pain from the surgery I’d had less than 24 hours ago. It was my second catheter change, and it traumatised me.”
But despite everything Alexis has endured, she refuses to give up - especially for her son, Leo, who remains one of her biggest motivations.
Alexis and her son Leo.
At her lowest point, Alexis had to move back in with her mum because her health had deteriorated so much that she needed extra support during hospital stays. While she is eternally grateful for the unwavering support her family has provided during these times, Alexis admits it was a painful experience to be in hospital so often and, during those periods, be away from Leo and unable to care for him herself.
“When Leo was three, he was obsessed with the human body. He’d watch educational videos for hours,” she shares, highlighting the impact this has had not just on her but her family, “Now when people ask him what he wants to be when he grows up, he says, ‘I want to be a doctor, so I can help Mummy.’”
Reflecting on her journey, while Alexis acknowledges the lows she has been through and the immense pain she has endured, she also chooses to honour the strength she’s had to build to carry herself and her family through it.
“If there’s one thing, I’m proud of it’s that I kept advocating.” She shares, “Not just for me, but for my son too.”
Unsatisfied with the treatment she has received so far, Alexis reached out to another urologist in Australia who has more knowledge and experience of treating complex cases of Fowlers Syndrome like hers. Based on his assessment, Alexis is now actively fundraising for a urostomy, which involves creating a small opening in the abdomen to create a passage for urine to exit the body whilst bypassing the bladder entirely. This new passage, called a stoma, is connected to a urostomy bag that collects the urine. For most people, this type of surgery is viewed as a last resort. However, for Alexis, whose quality of life has been stolen due to the impact of this condition, it offers a rare sense of hope towards reclaiming her life and reducing the daily pain, infections, and complications that she currently endures.
The possibility this surgery offers is currently helping Alexis find the strength to keep going, especially after all she has endured with her health. It is something she wishes she could’ve shared with her younger self, and she hopes that her story will inspire others to find the strength to keep going, even when all seems dark.
“I know it’s not easy, and there will be days when it feels like the world is working against you,” She says, “But don’t give up. Even if 99% of the people around you - especially in the medical world - tell you that “nothing’s wrong”, eventually you’ll find that 1% who listens.”
Thank you Alexis for sharing your inspiring story for the 'A Note of Hope' project!
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