Navigating Endometriosis: A Limerick Woman’s Personal Journey

Endometriosis Nightmare: Irish Woman’s Decade-Long Battle Reveals Heartbreaking Reality of Delayed diagnosis

By Archyde News Staff

March 19, 2025

For years, Lisa, a woman from Limerick, Ireland, was dismissed by healthcare professionals while suffering from increasingly debilitating pain. Her story highlights a critical issue impacting women worldwide, including teh United States: the agonizingly long delays in diagnosing endometriosis, often leading too advanced stages and severe complications. In Lisa’s case, the endometriosis spread extensively, reaching her diaphragm and, tragically, her heart.

A Decade of Dismissal

Lisa’s ordeal began nearly a decade ago with persistent shoulder and neck pain. She navigated a frustrating maze of medical consultations: GPs, an orthopedic surgeon, a neurologist, and a pain consultant. The dismissive response from one consultant – that she “needed to go to the gym and lift weights” because she “just has a weak shoulder” – encapsulates the lack of understanding and empathy many women with endometriosis face.

Driven by her own research, Lisa requested a referral to a gynecologist in Limerick. even then, despite the severity of her symptoms, she was told she was “too young” to have diaphragm endometriosis. This dismissal, Lisa recalls, led her to question her own intuition:

I went about my way, I believed him. he’s the professional, so surely he’d no. After that, I didn’t really bother fighting it anymore. I’ve been to all of these people, all of these specialists, nobody seemed to know what is causing this pain.

this highlights a systemic problem: the underestimation of endometriosis risk in younger women and the failure to recognize the diverse and often non-specific symptoms of the disease.

Endometriosis: By the Numbers

Statistic	Details
Diagnosis Delay	A study published in february 2024 indicates endometriosis diagnosis reportedly faces delays of up to 10 years.
Prevalence	Endometriosis affects roughly 1 in 10 women of reproductive age in the U.S., according to the American College of Obstetricians and Gynecologists (ACOG).
Economic Impact	Endometriosis costs the U.S. healthcare system billions annually, factoring in medical expenses and lost productivity.

A Tumultuous Search for answers

In 2023, Lisa’s health took another turn when she was hospitalized with intense pain around her ribcage.Scans revealed a liver lesion initially suspected to be cancerous. While further examination revealed the lesion was benign, the presence of blood products around it raised the possibility of endometriosis.

Undeterred, Lisa sought a second opinion from another gynecologist in Limerick. A laparoscopy finally led to a diagnosis of stage 4 diaphragm endometriosis, a severe form of the disease. Excision surgery followed in a Dublin hospital, along with induced menopause to manage her symptoms.

Initially, the induced menopause provided relief. as Lisa describes,

I was absolutely flying it after the excision surgery because I was obviously still in menopause. I had no symptoms and I thought that I was fixed.

Though, this respite was short-lived. As the effects of the induced menopause wore off, the debilitating shoulder and neck pain returned, signaling that the endometriosis was still active.

Her Voice Project: A Beacon of Hope and awareness

Frustrated and desperate for answers, Lisa launched “Her Voice Project,” an online platform designed to share her journey and connect with other women facing similar struggles. This initiative proved pivotal. through “Her Voice Project,” Lisa connected with Dr.Francesco Di Chiara, a surgeon at oxford university Hospitals specializing in thoracic endometriosis.

A consultation with Dr. Di Chiara led to further surgery, initially intended to address a few remaining spots of endometriosis on the diaphragm. Though, the reality was far more shocking.

During the surgery, Dr. Di Chiara discovered that the endometriosis was far more extensive than initially believed. As Lisa recounts,

He said that the disease was one of the most extensive he’d ever seen, that the right diaphragm was completely covered in disease and would require a major surgery, which would leave me partially disabled.

To fully assess the extent of the disease, Dr. Di Chiara ordered an MRI of Lisa’s heart, chest, and pelvis. The results were devastating: the endometriosis had spread to her heart.

Facing Impractical Choices

The discovery of endometriosis on Lisa’s heart presented her with an agonizing dilemma. The necessary surgery would be major, life-altering, and debilitating, perhaps requiring the removal of her diaphragm and a procedure on her heart.

It’s a question now of quality of life, so we were discussing whether or not my quality of life is really bad right now to warrant that big of a surgery, and thankfully it’s not.

Alternatively, Lisa could opt for hormone therapy to slow the progression of the disease, but this would only be a temporary solution.

The severity of her condition considerably impacts Lisa’s daily life. Simple tasks exhaust her, forcing her to rest frequently.

I need to lie down and rest a lot. A lot of people might think it’s lazy, but it’s just the fact that my body can’t cope. Because my body is too busy fighting off this inflammation that’s not meant to be there.

Lisa credits Dr. Di Chiara for providing extraordinary care and exploring all possible treatment options.

He’s been absolutely fantastic. I’ve been blessed with him, he’s looking for help from his colleagues. He’s looking for people’s opinions to see what they think is the best route, to weigh up all the options.

The Broader Implications for Women in the U.S.

Lisa’s story resonates deeply with the experiences of countless women in the United States who struggle to receive timely and accurate endometriosis diagnoses. The delay in diagnosis, which can average between 6 and 10 years, often leads to more advanced stages of the disease, requiring more aggressive treatments and negatively impacting quality of life.the February 2024 study underscores the urgency of this issue: “Endometriosis diagnosis reportedly faces delays of up to 10 years.”

The challenges faced by women like Lisa highlight the need for increased awareness, improved diagnostic tools, and greater empathy within the healthcare system. Common misdiagnoses in the U.S. include Irritable Bowel Syndrome (IBS),Pelvic Inflammatory Disease (PID),and even mental health conditions,reflecting a lack of understanding of the multifaceted symptoms of endometriosis.

There are several reasons contributing to delayed diagnoses, including:

• lack of awareness among both patients and healthcare providers.

• Normalization of period pain, leading women to believe their symptoms are normal.

• Limited access to specialists and advanced diagnostic techniques, especially in rural areas.

• The invasive nature of the gold standard diagnosis, laparoscopy, which requires surgery.

Several organizations in the U.S. are working to address these challenges, including the Endometriosis Foundation of America and the American Association of Gynecologic Laparoscopists. These groups advocate for increased research funding,improved educational resources for healthcare professionals,and greater access to specialized care for women with endometriosis.

Hope for the Future: Advances in Diagnosis and Treatment

While there is no cure for endometriosis, ongoing research is yielding promising advancements in both diagnosis and treatment. Non-invasive diagnostic tools, such as imaging techniques and biomarkers, are being developed to reduce the need for surgery.

In terms of treatment, researchers are exploring targeted therapies that can specifically address the underlying mechanisms of endometriosis without causing critically important side effects. These include:

• Novel hormonal therapies with fewer side effects than conventional options.

• Immunomodulatory drugs to reduce inflammation and disease progression.

• Angiogenesis inhibitors to prevent the growth of new blood vessels that feed endometriosis lesions.

Lisa’s story underscores the importance of early diagnosis and intervention in managing endometriosis.

The damage is done to the organs, there’s no cure. This is what I’m left with. If I was listened to by that guy in 2022 who said I was too young, these mightn’t be my options right now. It could have been caught earlier, the damage might have been as extensive. My body was ripping itself apart from inside out.

By sharing her experience through “Her Voice Project,” Lisa is empowering other women to advocate for their health and demand the care they deserve. Her courage serves as a reminder that early diagnosis and appropriate treatment can significantly improve the lives of women living with endometriosis.

what advice would you give to women who suspect they might have endometriosis but are struggling to get a diagnosis?

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Endometriosis: A Conversation with Dr. Evelyn Reed on Diagnosis Delays and patient Advocacy

Archyde News: Welcome, Dr. reed. Thank you for joining us today to discuss the critical issue of delayed endometriosis diagnoses.

Dr.Reed’s Perspective

Dr. Evelyn Reed: Thank you for having me. It’s a crucial conversation, and I’m glad to be here.

archyde News: Lisa’s story is a powerful example of the struggles many women face.According to the article, diagnosis delays can average between 6 to 10 years. As a specialist, what factors contribute to these lengthy delays in diagnosing endometriosis?

Dr. Evelyn Reed: Sadly, several factors contribute to the challenge. Firstly, lack of awareness is notable. Many women, and even some healthcare providers, may not fully understand the diverse symptoms of endometriosis, leading to misdiagnoses. Secondly, the normalization of period pain means that women frequently enough believe their severe symptoms are “normal,” delaying them from seeking medical help. Additionally, access to specialists and advanced diagnostic tools can be limited, especially in certain areas. even the gold standard diagnosis, laparoscopy, is an invasive procedure, wich creates an added barrier.

Archyde News: Lisa’s case highlights the devastating effects of this delay, with the disease spreading to her diaphragm and even her heart. What are the long-term health risks associated with undiagnosed or late-stage endometriosis?

Dr. Evelyn Reed: The longer endometriosis goes undiagnosed, the more the lesions can proliferate and spread.This can lead to chronic pain, infertility, and damage to various organs, as we saw in Lisa’s case, where it affected her diaphragm and heart. Advanced stages frequently enough require more aggressive treatments and can considerably impact a woman’s quality of life.

Archyde News: The article mentions the advancement of non-invasive diagnostic tools. Can you elaborate on these advancements and what impact they might have?

Dr.Evelyn Reed: Ongoing research offers hope. Non-invasive tools like advanced imaging techniques, and the identification of specific biomarkers, are being explored. these advancements could perhaps reduce the need for invasive procedures like laparoscopy for initial diagnosis, allowing for earlier detection and intervention.

Archyde News: Lisa’s story also reveals the importance of advocacy. She launched “Her Voice Project” to support others. What role does patient advocacy play in improving the lives of women with endometriosis?

Dr. Evelyn Reed: Patient advocacy is absolutely crucial. By sharing their stories, women with endometriosis help raise awareness among both the medical community and the broader public. It empowers other women to advocate for their health, demand accurate diagnoses, and seek specialized care. Groups like the Endometriosis Foundation of America are vital because of this very reason. Their voice can improve education and support for those affected.

Archyde news: Considering the scope of the problem and the impact on women’s lives, what would you say is the single most important step that the healthcare system and society as a whole, can do to address the issue of delayed diagnosis?

Dr. Evelyn Reed: increased education across the board.We need to educate women, primary care physicians, and other healthcare professionals. More training and awareness regarding endometriosis symptoms and management could make a massive difference. Early detection and appropriate treatment significantly improve the long-term outcomes for women with endometriosis.

Archyde News: That’s a very powerful insight Dr. Reed, thank you.considering Lisa’s experience which involved multiple specialists,what advice would you give to women who suspect they might have endometriosis and are struggling to get a diagnosis?

Dr. Evelyn Reed: First, trust your instincts. If you feel something isn’t right, be persistent in seeking answers. Keep detailed records of your symptoms, their timing, and severity. Seek out specialists experienced in endometriosis, as experience creates expertise.Second opinions are also critical. Lastly, find support groups and online communities where you can connect with other women who understand and can offer guidance.

Archyde News: Dr. Reed, thank you for your time and for sharing your insights on this critical issue.

Dr. Evelyn Reed: Thank you for having me.

Archyde news: Now, we’d like to hear from our readers. Have you or someone you know experienced delays in