Laurene Agnew, 35, said she was told her debilitating periods were nothing to worry about for two decades
From the age of 13, Laurene Agnew suffered through agonising periods, but for two decades her pain was brushed aside by doctors who insisted nothing was amiss.
“It was assumed I just had a low pain threshold and I was looking for attention as a teenager,” said Laurene, a project manager from Bangor, Northern Ireland. Now, at 35, Laurene has been left without her fallopian tubes, appendix, uterus and cervix – organs she’s lost in her gruelling battle with endometriosis.
At 16, Laurene’s first exploratory laparoscopy yielded no answers, with the consultant claiming to find nothing troubling.
“But looking back, I think it was just an unskilled surgeon who didn’t know what they were doing with endometriosis,” Laurene said. “And had it been different, maybe they could have picked it up then.”
Her suffering was consistently ignored, leading her to blame herself for the pain.
“So from the ages of about 16 to 22, I just believed that there was just something wrong with me, that I just felt pain in ways that other people didn’t,” she confessed. “And I was weak. I had really horribly low self-esteem and sense of self-worth. And I hated being a woman. I resented it. I thought I was bad at it.”
It wasn’t until she turned 22 that the tide began to turn, thanks to her now-husband Chris, who meticulously recorded her symptoms. Despite this detailed account, her pleas for help continued to be dismissed by medical professionals.
Laurene was initially dismissed when she sought help for her symptoms, being told they were likely due to her weight. “And to be honest, most of it he batted away as at the time I was bigger,” she said.
She was given various reasons for her pain: “So it was because I was too big. It was because I had a bad pain threshold. It was because I wasn’t eating healthy. There was always a reason.”
Yet, her concerns were finally taken seriously after she reported bleeding during intercourse. “Suddenly when it impacts the man in my life, it becomes something important,” Laurene said.
“But that is the symptom they took seriously.”
A consultant agreed to perform surgery, suggesting it might reveal mild endometriosis at worst. However, the operation uncovered that Laurene’s organs were “completely covered” in stage four endometriosis.
This discovery led to a long cycle of surgeries from the age of 23 to 35, as she explained: “And then that started a cycle from when I was 23 years old to 35 of having surgery every couple of years to try and cut it back, try and fix it.”
Despite repeated procedures to excise endometrial tissue, Laurene continued to suffer pain, while her consultant insisted all was well.
She said: “And he said, and this is verbatim, ‘I am the gold standard. There are Maseratis and there’s a Formula 1 car. I am the Formula 1 car. If I say you’re fine, you’re fine’.”
Frustrated with ongoing pain, Laurene sought another opinion, leading to the discovery of more endometriosis and yet another round of surgery.
Following multiple surgical procedures and the birth of two children – something doctors had initially suggested was improbable – Laurene had a hysterectomy in 2020. While she understood it wouldn’t be a complete cure, she remained hopeful it might ease her suffering.
Yet the operation’s aftermath presented unexpected difficulties.
“So I had my hysterectomy in 2020 when Alex was four months old and I couldn’t have imagined how much of a negative impact that would have on my standard of care and how seriously I would be taken,” she said. “Because it’s hard enough to be taken seriously with menstrual pain and bleeding when you have a uterus.”
Laurene continued: “They talk about hysterectomy as if it’s like just getting a mole removed.”
Even without a womb, Laurene’s monthly bleeding persisted following the operation. Three months after surgery, she returned to her physician.
“So on the third month I went back and I was like there’s something wrong and they done an MRI and there was a full endometriosis nodule that they had missed during the hysterectomy going from the inside to the outside,” she revealed.
Half a year on, she found herself back under the surgeon’s knife to have the nodule excised. Nevertheless, the agony remained.
As her children grew, managing daily life while enduring relentless discomfort became progressively more challenging. “I was still having a lot of persistent pain and I was not involved with my kids and I was becoming really sedentary – I hadn’t realised it was happening,” she said.
“It’s really insidious when you slowly at a young age lose your health.”
In search of solutions, Laurene journeyed to a specialist endometriosis centre in London, where she encountered surgeon Peter Barton Smith, who managed to fix the damage from her earlier procedures in Northern Ireland.
Laurene described this as the first occasion she felt “treated like a human being in a hospital rather than a number or just women’s problems”.
For 18 months following her London surgery, her circumstances started to get better. However, fresh symptoms then appeared: serious bloating, discomfort during bowel movements, and the inability to consume food without vomiting.
Between May and August last year, Laurene lost 22lb (10kg) and required hospitalisation with a nasogastric tube.
“And at that time, I put up a fight to be seen by gynaecology,” she said. “And they saw me and they just didn’t know how this was all tallying up. And they didn’t care. They were just kind of treating it as ‘you have endometriosis, you will never be pain free’.”
By this point, Laurene had undergone eight operations and her mental wellbeing was deteriorating due to relentless pain and repeated dismissals from medical professionals.
Following consultations with countless specialists across Northern Ireland, Laurene took matters into her own hands, researching extensively before discovering Dr Gabriel Mitroi in Romania and making contact.
“And he emailed back that evening being like, yeah, your nerves are damaged,” she said. “And I was like, no, no, I have endometriosis. And he was like, that may be true, but that’s not your problem.”
What Laurene anticipated would be a brief discussion with the surgeon turned into an in-depth examination of her pain’s root cause. Following Dr Mitroi’s assessment that nerve damage was likely the culprit, he offered to treat her if she was prepared to make the journey to Romania.
Laurene subsequently launched a GoFundMe campaign to help fund the travel and treatment expenses, and was stunned when she managed to collect £24,000 within just four days. “It was huge, honestly, people’s generosity… people were so kind,” she reflected.
Upon reaching Romania, medical imaging confirmed Laurene’s worst fears – she was suffering from severe nerve damage, with swollen muscles pressing against the nerves that control her bowel, bladder, sexual function and right leg.
“And nerve death comes in three stages. And it was at stage three of nerve death,” she explained. “And if it had been going on much longer, it wouldn’t have come back.”
Dr Mitroi successfully operated on her, and since the surgery, Laurene has been experiencing much-needed relief.
“Everything was very heavy. And now I’m like, I can actually stand,” she said, now six months into her recovery. “I’m not in agony. And that was from the morning after the surgery.”
Laurene acknowledged that she’s still healing post-surgery but is thankful to be free from pain at last.
“I’d take this any day over not having bowel control… I couldn’t lift my own kids physically,” she said. Despite the challenges, Laurene is aware her experience is not uncommon.
“My story is not beyond the realm of what most people with endometriosis encounter,” she said. “I’m just fortunate enough that I can be quite articulate when I want. And people have taken an interest when I have shared.”
Through Instagram, Laurene recounts her journey and campaigns for improved treatment of women in healthcare.
“People need to be aware of how horrendously women’s medicine is treated and women within the medical environment, how the misogyny that exists, how we’re just taught that our pain doesn’t matter and that pain is okay,” she said.
“Even these horribly invasive, brutal, intimate, procedures that they’re doing and women are just expected to tolerate it.”