PCOS sufferer accused of 'blowing pain out of proportion' calls for better support at work
"After the giddy relief came the rush of anger. I've never been so angry before, or since. Since being 13-years-old, all the pains I'd had, all the symptoms, had been PCOS."
For more than a decade, Lina (she/they) had suffered with heavy, unpredictable periods, cramps and exhaustion. The pain became so bad at one point that they were convinced they must have broken their tailbone, and they were left taking a 'dangerous' amount of painkillers to try and make it through the day.
Lina believes at one point she was 'dangerously close to accidentally overdosing', but even after Googling her symptoms and suggesting polycystic ovarian syndrome (PCOS) to her doctor, she was brushed off.
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Had Lina been better supported throughout her health journey, she'd have known that the symptoms she'd experienced since her first period weren't entirely representative of normal menstruation.
"My flow was always very, very heavy, to the point where I would often feel faint, shaky, and would be prescribed iron tablets by my GP," Lina told Tyla.
"I had to change the highest absorbency pads every two hours because I'd bleed through them. I was always told that these symptoms were 'normal' whenever I mentioned this to my (at the time) male GP."
"As I got older, headaches and very painful abdominal cramps were added to my monthly symptoms. I would regularly be unable to take part in PE lessons at school because it was just so painful. As the years went by, I just accepted that this was what everyone went through who experienced having a period.
"I stopped complaining to my GP and just learnt to grin and bear the monthly symptoms."
At work, Lina would have to use the bathroom every couple of hours when she was on her period, allegedly leading the managers at one of her jobs to make what 'they thought were funny comments'.
"On more than one occasion when I did pluck up the courage to attempt to explain my reasonings for needing to use the bathroom more regularly, I was told that it 'wasn't appropriate' for me to discuss this with my managers or at work," Lina said.
The pain they experienced during their period began to linger longer than usual as they got older, to the point where it began a week before their period and continued for a week afterwards.
"This just got gradually worse until it was pretty much all the time, regardless of what time of the month it was," Lina said.
"On many occasions I would be bleeding for weeks at a time without any break. I'd often have to call in sick at work because I'd just feel so drained and lightheaded. I was just constantly exhausted."
Lina initially got some support from female managers at their job, but was often reminded that 'we all suffer with our periods'.
One day, Lina was forced to call in sick to the place she was working at the time after she slipped and fell down the stairs in an incident that led her to believe she'd broken her tailbone. She went to A&E, but was told that there 'wasn't anything that could be done' - a broken or bruised coccyx will usually heal on its own.
But for Lina, the pain 'just got worse and worse'. They were taking endless painkillers, using heat packs and ibuprofen gel, but 'nothing helped'.
Upon Googling her symptoms, she came across polycystic ovarian syndrome - one feature of which is when your ovaries become enlarged and contain many fluid-filled sacs that surround the eggs.
Lina noticed the symptoms listed were everything they had been experiencing, and they felt a 'lightbulb moment'. They shared their thoughts with the GP, but were told they didn't have symptoms such as weight gain and acne, and therefore likely didn't have PCOS.
The NHS notes that not all people with PCOS will have all of the symptoms, and each symptom can vary from mild to severe.
Lina was 'rediagnosed' with a possible 'anxiety' disorder, prompting her to start 'second guessing' what she was convinced was true: that she had PCOS.
A few weeks after this exchange, when Lina was around 25 years old, they woke up to find the pain 'the worst it had ever been'. They were working a double shift at a restaurant; a job which involved having to empty large barrels of glass bottles into the bin.
"As I lifted one of the barrels to pour it into the larger refuse bin, I [would] describe it as if someone had kicked me from behind," Lina recalled. "My hip just jolted and I bent over from a horrendous pain in my lower abdomen. It felt like a snap. It was the sort of pain that makes you cry out."
They told their manager they needed to go to A&E, but was allegedly ignored.
"Another hour or so went by before she came back in. She was incredibly angry with me because other members of staff had complained that I was 'moody, untalkative and I was bringing down the mood of all the staff'. I could only apologise," Lina said.
Eventually, the manager agreed to let her leave.
"When my coworker arrived and I was allowed to leave, the other members of staff made it very clear with their remarks, looks and body language that they all thought I was simply trying to get out of work early. It was such a horrible feeling, the sort of sick feeling when you have to stand up in class and read something out aloud," they said.
At A&E, for the first time, Lina found a doctor who really considered her self-diagnosis. He examined her and ordered blood tests and a pelvic ultrasound, which revealed a 'big hormonal imbalance' as well as a 'big black shape looming'.
Lina learned their ovaries had a lot of fluid-filled follicles, as well as a large ovarian cyst which had twisted to prevent blood getting to her ovary.
"Thankfully, something untwisted it before it turned necrotic or you'd be in here for septicemia," the doctor said.
Ovarian cysts are different to PCOS, but, as was the case with Lina, it is possible for people with PCOS to get them.
Having an answer for their pain felt to Lina like they were 'breaking through the surface', and they were flooded with relief. But they also felt anger at having spent years being made to feel they 'didn't understand [their] own anatomy'.
Lina admitted her diagnosis was confusing, noting some doctors use the terms relating to PCOS and ovarian cysts 'interchangeably'.
"The information needs to honestly be much clearer and the terms doctors use needs to be much more consistent. It's confusing for patients when they use different terminology interchangeably," they told Tyla.
Lina underwent operations to remove the ovarian cysts, which had the potential to become cancerous, but unfortunately they later had to have both their ovaries and fallopian tubes removed.
Their ovaries were no longer working, so sadly Lina was unable to harvest any eggs to give them the opportunity to have biological children in the future.
She struggled with finding support at work while going through her recovery, with managers allegedly complaining routinely about her 'availability'.
Lina described being 'pressured to return back to work earlier' than advised, and claimed she faced criticism from her managers that she had 'blown it all up out of proportion' or 'made a big deal out of it for sympathy'.
The stress she faced around the return to work, combined with her health issues and news that she was infertile, led Lina to suffer a nervous breakdown, and she was later diagnosed with PTSD.
Lina has since been classed as disabled due to PTSD, anxiety and developing Fibromyalgia, and she no longer works, despite 'genuinely missing' being part of a workplace.
After everything they'd gone through, Lina believes they should have been 'allowed to heal and recuperate properly', and expressed belief that better education across the board could have helped give them this opportunity.
"I try to be as outspoken and loud as I can be about the real life limiting symptoms people can have with PCOS and periods in general," Lina said.
"Unless you know what you're looking for, there's no way a lot of people would find out about PCOS."
Lina also called for the need for better support for people who 'may need time off work or school when it's their monthly cycle'. Even if she can help educate one person, she said she'll 'be happy'.
"I truly don't want anyone else to have to go through what I have."
When contacted for comment, the NHS recommended utilising the NHS UK website for advice about PCOS.
Emily Brown