Kildare woman blames ‘medical gaslighting’ for three-year battle with endometriosis
Saoirse Hederman from Robertstown: 'I felt like I was constantly trying to prove how much pain I was in'
A KILDARE woman has described enduring years of debilitating pain, repeated hospital visits and costly surgery abroad as she sought answers for her endometriosis, a condition that has dramatically altered her health, career and future plans.
Saoirse Hederman (29) from Robertstown said she has spent more than three years trying to get answers for severe pelvic pain that left her unable to work and forced her to seek specialist treatment overseas. After years of what Saoirse described as “medical gaslighting” by Irish doctors, she has decided to make her story public to continue the conversation around endometriosis advocacy in this country.
Saoirse’s symptoms began at the age of 26, after she stopped taking the contraceptive pill, which she had used for around a decade to manage heavy periods, which she believes was likely a treatment for endometriosis symptoms all along. What followed was a prolonged struggle with intense pain, repeated hospital visits and medical investigations that failed to provide the answers she needed.
“I was in agony,” she said, describing severe pelvic and ovarian pain that affected her ability to carry out everyday activities for a consecutive 463 days.
Saoirse said she attended several hospital A&E departments but was discharged without any explanation for the severity of her symptoms.
In December 2023, she was finally recognised as having endometriosis and underwent exploratory surgery at an Irish hospital, which involved a process whereby endometriosis tissue is medically burnt off. However, she says her pain significantly worsened afterwards.
Over the following months, she underwent numerous investigations, including 12 ultrasounds and five MRI scans, while consulting several specialists. Although one specialist diagnosed her with stage two endometriosis, she says she continued to experience severe symptoms and struggled to find a treatment that brought her any relief.
She believes that the medical interventions by Irish doctors may actually have worsened her condition overall.
“Because it’s an invisible illness, I feel like there’s a lot of stigma,” said Saoirse. “People just think, well, she’s just being dramatic.”
Endometriosis is a chronic condition in which tissue similar to the lining of the womb grows elsewhere in the body. It can cause severe period pain, persistent pelvic pain, fatigue, pain during sex, bowel or bladder symptoms and fertility difficulties. Symptoms vary widely, and the severity of a person’s pain does not always correspond to the apparent extent of the disease.
Saoirse said that she was placed into medically-induced menopause at the age of 27 in an attempt to manage her symptoms. She experienced significant side effects, including brain fog and osteoporosis, and said the treatment still did not ease her pain.
She also recalls being asked by a doctor whether pregnancy might improve her symptoms – a suggestion that was extremely ridiculous and distressing to hear while single, unable to work and worried about the possible impact of the condition on her fertility.
“I felt like I was constantly trying to prove how much pain I was in,” she said. “They just kept telling me you can’t have that level of pain and it’s in your head.
“My last discharge letter said, ‘the patient is severely anxious’.”
After years of trying to navigate the Irish healthcare system without satisfaction, Saoirse began looking outside Ireland.
She contacted a specialist endometriosis centre in Bucharest, Romania, where she underwent a more detailed pelvic MRI.
She says the scan identified stage four deep infiltrating endometriosis, adenomyosis and left pudendal neuralgia. According to Saoirse, her left ovary and fallopian tube had become trapped behind her uterus by scar tissue, which had not been flagged by Irish doctors. She subsequently underwent complex surgery to remove endometriosis, release adhesions and affected nerves, and reposition her ovaries.
The procedure brought some improvement to her quality of life, but recovery has been difficult and she remains unable to return to work.
Saoirse said she had to relearn how to walk following the release of a nerve affecting her left leg. She continues to experience limitations that make prolonged sitting, standing and driving difficult.
“Working is a luxury,” she said, explaining that those with chronic illnesses just want to live a normal life, go to work and engage in ordinary daily activities.
She told the that even small plans such as going out to get a coffee require careful planning around her symptoms and energy levels. She called her experience “isolating”, for how much she has had to spend at home and said that she feels like “watching life go on without you”.
She estimates that she has spent more than €15,000 on treatment and related costs during the last number of years, which has been extremely challenging financially as she has not been able to work.
While she says some eligible surgical costs may be reimbursed through a cross-border healthcare scheme, patients may have to pay upfront, with travel and accommodation adding to the financial burden.
Saoirse is now undergoing egg freezing, adding another layer of emotional, physical and financial pressure to an already difficult experience.
The possibility that endometriosis could affect fertility has been a significant concern throughout her journey. She said the condition has affected not only her physical health, but also her friendships, career, mental wellbeing and ability to make plans for the future.
She hopes that, as her health improves, she will eventually be able to return to work and regain more independence.
Endometriosis can take years to diagnose, with international research indicating that many patients experience lengthy delays before receiving a diagnosis. The condition can be difficult to identify because symptoms overlap with other conditions and may not always be visible on routine investigations.
For Saoirse, the experience has reinforced the importance of listening to patients when they describe persistent or severe pain.
“I want people to listen to women and believe them when they say something is wrong,” she said.
She hopes that sharing her experience will help others who are struggling with similar symptoms, and advises women who believe they might have endometriosis to do some research into who will be providing their care.
“Don’t just trust anybody here in this country,” she said.
