Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.
"I had the opportunity to hear Emily's story about her battle with Stage 4 Endometriosis, as well as her experiences with other women's health conditions such as PCOS and Adenomyosis, after she reached out to me on TikTok and answered our standard questionnaire to share her story. I always feel excited when people from different parts of the world participate in our project, and I am amazed by how far it has reached. On the other hand, it's also a powerful reminder that the issues surrounding women's health, which I continually hear about, are not isolated to specific locations but are part of a larger global concern.
Emily's journey with endometriosis truly highlights the immense challenges that many women face when dealing with this debilitating condition. Her unwavering determination to advocate for her own health and to be taken seriously by medical professionals left me deeply moved and inspired. Reading her story made it evident that her current state of health wouldn't have been possible without her persistent advocacy, which is disheartening considering the numerous times she has suffered due to her illness.
Emily's willingness to share her story and educate others about these often misunderstood conditions is not only commendable but also incredibly important. It's a reminder of the strength within the community of individuals facing similar health challenges and the power of raising awareness and advocating for better support and understanding." - Ellie Howe, creator and author of 'A Note of Hope.'
“My name is Emily, and I have stage 4 rare coloured endometriosis, suspected adenomyosis, pelvic congestion syndrome, PCOS, endometriomas on my ovaries, vaginismus, and a bleeding disorder called Von Willebrand's type 2.”
At just eight years old, Emily experienced a significant milestone in her young life: her first period. However, what should have been a normal rite of passage into womanhood quickly turned into a recurring nightmare of pain and discomfort. Despite confiding in professionals and the adults around her, Emily was consistently reassured that what she was experiencing was 'normal' period pain. Consequently, she grew up believing she had a low tolerance for pain—a misconception reflecting a recurring, widely recognised issue in healthcare systems worldwide, where women's symptoms are often dismissed or underestimated.
By the age of twelve, Emily had sought medical intervention to manage her relentless symptoms. She opted for a contraceptive implant, commonly known as "the bar" in Australia, along with the Femme-Ed pill, a hormonal contraceptive designed to regulate menstrual cycles. However, these measures only made her periods more erratic and unpredictable.
At sixteen, Emily decided to have the contraceptive implant removed, but she continued using the Femme-Ed pill. It was during this time, while living in Queensland that Emily finally received a diagnosis that shed some light on her long-term suffering: polycystic ovary syndrome (PCOS). PCOS is a hormonal disorder common among women of reproductive age, characterised by irregular menstrual periods, excess androgen levels (leading to acne and excessive hair growth), and polycystic ovaries (enlarged ovaries containing multiple small cysts). Despite this diagnosis, Emily's doctors continued to maintain that her pain was normal, reinforcing her belief that she was simply unable to handle pain well.
In 2021, after moving to Perth, Western Australia, Emily's health took a dramatic and concerning turn. Dedicated to her fitness routine, she worked out at the gym seven days a week. However, her routine was interrupted when her doctor decided to take her off the Femme-Ed pill for the first time in nearly seven years. One afternoon at the gym, Emily suddenly felt a sharp, excruciating pop in her ovary. Doubled over in pain, she knew something was seriously wrong, but after years of being dismissed by medical professionals, she didn't seek help immediately. It was only the following day, when the pain became unbearable that she decided to go to the hospital, and a scan revealed ruptured ovarian cysts, a kidney infection, and a urinary tract infection (UTI).
Had Emily not gone to the emergency room when she did, the consequences could have been dire. The ruptured cysts could have caused severe internal damage, the kidney infection could have escalated into a critical condition, and her overall health would have continued to deteriorate. This experience alone underscores the crucial need for a more empathetic approach to women's health issues. Ensuring that young girls like Emily do not grow up feeling unheard and invalidated in their pain is essential, as it can prevent them from seeking help in emergencies.
Unfortunately for Emily, however, her battle to get the help she needed was only beginning...
“After doing some research, I discovered endometriosis, and realised that all of my symptoms matched up."
After moving to a new town to be with her girlfriend, frequent visits to the local hospital became part of Emily's routine as she continued to seek answers and relief from her debilitating symptoms. Through her research, Emily discovered Endometriosis, a chronic condition where tissue similar to the lining inside the uterus grows outside of it, causing severe pain and other complications. Convinced that her symptoms matched the description perfectly, Emily brought her findings to one of her hospital appointments and persuaded the doctors to perform a diagnostic laparoscopy. This surgical procedure, often used to diagnose Endometriosis, involves examining the organs inside the abdomen. Despite pathology reports from the biopsies taken during the surgery confirming the presence of Endometriosis, Emily's gynaecologist dismissed the diagnosis, insisting - despite the evidence categorically suggesting otherwise - she did not have Endometriosis.
Refusing to accept this injustice, Emily took matters into her own hands, persistently emphasising the inconsistencies between her surgery notes and scan results until the medical professionals had no choice but to listen. One thing Emily is particularly proud of throughout her journey is her perseverance in the face of overwhelming challenges and scepticism from medical professionals. Despite enduring constant pain and having her symptoms frequently dismissed, Emily trusted her instincts and fought hard to ensure she received the care she knew she needed. After her first surgery with a gynaecologist, she sensed something was still wrong. Rather than accepting the reassurances that her condition was normal or that her pain might be psychosomatic, she continued to advocate for herself.
Emily's determination led her to push for a second surgery. Her advocacy efforts paid off when, just eleven weeks later, she underwent another procedure, this time with an endometriosis specialist, which uncovered the true severity of Emily's condition.
This specialist confirmed that Emily had stage 4 endometriosis, with extensive lesions, deep implants, adhesions between pelvic organs, as well as a large cyst on her left ovary (known as endometriomas, or 'chocolate cysts,' which are created when endometrial tissue grows in the ovaries and fills with old, dark blood). Furthermore, the surgery also revealed that Emily had rare coloured Endometriosis, where lesions can appear in various colours, such as red, black, blue, white, yellow, or clear.
In addition to these diagnostic findings, the specialist uncovered several severe complications. Deep infiltrating endometriosis nodules were discovered behind her left ovary, causing significant pain and discomfort. Additionally, she was found to have severe bladder endometriosis, which further contributed to her symptoms. The specialist also identified numerous areas of Endometriosis, including Allen-Masters window endometriosis and lesions on her ovaries. Fortunately, the specialist surgically removed these lesions, providing Emily with some relief.
Post-surgery, Emily experienced a brief respite from the chronic pain that had plagued her for years. Unfortunately, this relief was short-lived. Merely two months after the operation, the pain returned with a vengeance. A follow-up scan revealed the presence of a 6cm endometrioma, a type of cyst caused by endometrial tissue growing in the ovaries. This usually requires urgent removal. However, despite the critical nature of her condition, nearly a year later, the endometrioma has now grown to 7.5cm, and Emily is still awaiting surgery.
To find out more about Endometriosis, click the link below:
Endometriosis
Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.
“My biggest challenge throughout this has been to continuously advocate for myself, even after many doctors tried to convince me that the pain was all in my head."
Emily's latest scans have continued to paint a grim picture, revealing the severe extent of her condition. The scans show increased deep infiltrating Endometriosis, now involving her bladder and bowel. This has raised the alarming possibility that she may require a temporary colostomy bag to manage the symptoms and complications arising from the affected bowel. Furthermore, both of Emily's ovaries are tethered to her pelvic sidewalls due to extensive adhesions, limiting their mobility and function.
The scans also indicate that the pouch of Douglas, a space between the uterus and rectum, has been completely obliterated by deep infiltrating Endometriosis. This severe condition not only exacerbates her pain but also complicates potential surgical interventions. Additionally, a large cyst has displaced one of her ovaries, compressing surrounding organs and further intensifying her discomfort and symptoms.
Emily is now bracing herself for her third surgery, a critical step in her ongoing battle with Endometriosis. Despite the overwhelming and constant pain she has experienced, however, she attributes the most difficult part of her journey to advocating for herself in the face of scepticism from the medical professionals who have continually questioned the validity of her pain. This challenge became especially pronounced after her last two surgeries when she began experiencing familiar pains indicating her Endometriosis had returned.
After her second surgery, the resurgence of pain was both disheartening and alarming. Emily, already weary from her long battle, found her pain once again dismissed by some medical professionals as they suggested that her symptoms might be psychosomatic. This suggestion even went as far as leading to a referral to a psychologist, which was particularly crushing for Emily as it undermined the genuine and intense pain she was enduring.
Despite her initial doubts and frustrations, Emily attended two sessions with the psychologist. These sessions conclusively affirmed that her pain was undeniably physical. The psychologist recognised Emily's strong mental resilience throughout her ordeal and swiftly dismissed any notion that her pain was psychologically driven. Instead, the psychologist confirmed the necessity of Emily's impending third surgery. This validation was deeply gratifying for Emily. It reinforced her unwavering determination to advocate for the medical attention she urgently required. With renewed resolve, Emily prepares for her third surgery, hopeful that this critical intervention will finally bring her the relief she has been desperately seeking.
Beyond this imminent procedure, however, Emily continues to grapple with additional health challenges. Including suspected Adenomyosis, a condition closely related to Endometriosis, which occurs when endometrial tissue grows into the muscular wall of the uterus, leading to enlargement of the uterus and severe pain during menstruation. Additionally, Emily contends with Von Willebrand disease, type 2, a genetic bleeding disorder arising from a deficiency or dysfunction of the von Willebrand factor, crucial for blood clotting. Individuals with this condition often experience frequent nosebleeds, heavy menstrual bleeding, and prolonged bleeding from minor cuts or injuries. Managing Von Willebrand's disease in conjunction with her other conditions necessitates careful coordination of treatment strategies to mitigate bleeding episodes and maintain her health.
Despite these overwhelming challenges and an uncertain future, Emily's resilience and determination remain steadfast, inspiring others and underscoring the importance of comprehensive care and support for those with complex health conditions.
“An achievement that I'm proud of is that after my first surgery with a gynaecologist, I knew something still wasn't right. So, I fought hard and advocated for myself. I will continue to fight for myself and others too.
Most of Emily's conditions, including Endometriosis, Adenomyosis, PCOS, and vaginismus, are related to women's reproductive health—an area that is often under-researched and underfunded. Despite affecting a significant number of women, many of these conditions have no cure and limited treatment options, leaving women like Emily to navigate a complex and often frustrating healthcare landscape. This can be an incredibly isolating experience.
Emily's ability to stand up for herself, even when faced with disbelief and dismissal from those who were supposed to help her, is a testament to her strength and resilience. Her story is not just about her battle with a debilitating condition but also about the critical need for self-advocacy in the healthcare system. Her story underscores the importance of listening to one's body and instincts, and it serves as an inspiring example for others facing similar struggles.
In her darkest days, Emily found immense joy in knowing she had the unwavering support of her caring girlfriend. Having her girlfriend by her side gave Emily much-needed emotional support and the courage to keep fighting through even the most challenging moments.
As she continues to fight, not only for her health but also for the recognition and proper treatment of all those who have Endometriosis and other under-recognised conditions, the advice Emily would give to anyone going through a similar journey is clear: never give up. Encouraging others to continue fighting and advocating for themselves, Emily emphasises the importance of conducting thorough research. She firmly believes that each person knows their body best and should trust their instincts throughout their healthcare journey.
"The advice I'd give to anyone going through this journey or a similar situation is to never give up. Continue to fight and advocate for yourself and others. Spend many hours doing research so you can advocate for yourself against the medical professionals who seem to think they know our bodies better than us when they don't. We know our bodies best."
Thank you Emily for sharing your inspiring story for the 'A Note of Hope' project.
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