Aircraft engineer and mum, Nicola Carter, had long suffered with agonising periods before eventually getting her endometriosis and adenomyosis diagnoses. But, getting there proved more than a challenge as her pain was normalised and she was left to push through debilitating symptoms. This is her story.
“I have always had painful, heavy periods, I just thought that was normal,” The 41-year-old said.
Nicola says she was initially misdiagnosed with IBS, while her heavy periods were overlooked.
“When I was a teenager, my symptoms were diagnosed as IBS by a male doctor and told my heavy periods were just heavy. I was officially diagnosed with endometriosis when I was 32.”
The aircraft engineer credits her female military doctor for actually taking her pain seriously and sending for the necessary tests.
Nicola says, “When I went to her complaining of exhaustion and low mood, results came back as no iron, she sent me for a scan after I told her about my periods.
“I felt listened to for the first time.”
It wasn’t until she was “rushed to the hospital with extreme bleeding” that Nicola first learned about adenomyosis.
“The specialist I spoke to (male), said it could be adenomyosis, but they had no way of finding out. I had never heard of it before that point.”
Adenomyosis is a condition that involves the growth of cells similar to those found in the uterine lining in the muscle wall of the uterus. While adenomyosis is considered more common in women in their 40s, some research has found the average age of patients to be around 26 years of age, indicating that the disease often shows up early. The symptoms can include heavy or abnormal menstrual bleeding, painful cramps, pelvic pain, blood clots during periods, pain during sexual intercourse and infertility, among others. A whopping 1 in 5 women are afflicted with the condition, with the National Library of Medicine Journal finding research to be lagging woefully behind, leaving many women with debilitating symptoms and little support – oftentimes, they may be misdiagnosed with conditions like endometriosis, though for many others like Nicola, both diseases may be present. A study from 2017 found around 42% of those with the condition also had endometriosis, while another study found a prevalence of endometriosis in a whopping 80% of adenomyosis patients. Unfortunately, many people remain undiagnosed, and while endometriosis sufferers have a long history of late diagnoses – or never receiving a diagnosis – those with adenomyosis are even less likely to get that diagnosis.
After years of pain, Nicola finally underwent surgery – and what they found proved what she had been telling them all along about her debilitating pain.
“I had a hysterectomy when I was 34,” Nicola says. “After, the specialist told me that they had to remove everything as it was definitely adenomyosis and was so extensive.”
Let’s wind back for a moment – prior to her surgery and diagnosis, Nicola says there was a particular incident that led to Nicola starting the pill.
“In Afghanistan, I had a mortifying incident on the place home where I fell asleep and leaked all over my trousers, they were a light brown colour,” she said. “The military doctors put me on the pill and have me a medication that helped reduce the flow and super strong painkillers, that was how I lived until I had my son in 2013.”
These heavy periods are one of the major symptoms of endometriosis and adenomyosis, leaving many women with low iron levels, low energy and poor mental health – evidently, improper and late diagnoses for these conditions can be detrimental to one’s whole-body health.
“There is 100% a lack of awareness as I’d never heard of it, nor had any of my friends or family,” Nicola shares. “Not being listened to for so many years, the embarrassing symptoms and stress massively affected my health.”
While the pill helped Nicola manage her symptoms a little better, it didn’t resolve the problem. After getting off the pill, the English mum says her debilitating periods came back with a vengeance.
“I would have to use extra absorbent tampons and pads together, which for the first 3 days I’d have to change every hour,” Nicola says. “I would also wear dark clothes and carry extra underwear; I would get extreme pain where I’d rock myself to sleep and throw up.”
Nicola says one of the major setbacks for women with adenomyosis and other reproductive conditions is the stigma and societal attitude towards menstruation.
The aircraft engineer knows firsthand how damaging these attitudes can be, with many women left to suffer in silence with debilitating pain.
“I don’t think women talk about it enough because there’s still such a stigma about it – ‘gross don’t about periods!’”, Nicola says, adding that having more female specialists could also help address the problem.
Her advice to women in the same boat is to keep speaking out, even in the midst inadequate support and understanding.
“Women need to shout louder about their symptoms, don’t be embarrassed,” Nicola says. “You are not just complaining like most uninformed people lead you to believe; it’s a very debilitating condition.”