Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.
"I am grateful to have the opportunity to share Jayde's journey with endometriosis after she reached out via TikTok and shared her story in writing.
Although this project focuses on sharing stories with a hopeful tone, living with a chronic illness can be difficult and not always hopeful. Jayde's story is a powerful example of this, as it is clear that her condition has taken away much of the happiness from her life. I felt a great sense of sadness as I read some of the most striking quotes from her story, one of which was, "You can't be positive in a body that destroys itself daily." I could relate to this feeling as I have experienced it myself during my worst health days.
Throughout Jayde's story, a common theme is the invalidation she has received from medical professionals. It is well-known that women's reproductive health issues, such as endometriosis, are often stigmatised, leading to delays in diagnosis and treatment. Jayde's story is a poignant reminder of the pressing need for the healthcare system to listen to and believe in women. I am grateful to share her story and inspired by her using her pain to advocate for change. It is time to break the bias and prioritise women's health with the urgency and respect it deserves." - Ellie Howe, creator and author of 'A Note of Hope.'
Jayde's journey with health challenges began when she was diagnosed with Type 1 diabetes at the age of four. Throughout her life, Jayde has struggled with frequent hypoglycemic episodes, which require her to carefully regulate her blood sugar levels with insulin injections and a strict diet. However, six years ago, Jayde received additional diagnoses that would significantly alter her path.
She was diagnosed with stage 4 endometriosis, a painful and debilitating condition characterised by uterine tissue growing outside the uterus. The condition causes excruciating pelvic pain and heavy periods and can result in fertility challenges. Additionally, Jayde also received a diagnosis of adenomyosis, a condition closely related to endometriosis, where uterine tissue infiltrates the muscular walls, causing severe cramps, heavy bleeding, and uterine enlargement.
Managing her diabetes has been a lifelong challenge for Jayde, but she says that it feels like "a walk in the park" compared to the relentless battle she faces with endometriosis and adenomyosis.
“I was diagnosed 6 years ago but have been going to the doctors regarding 'period pains' since I was 19. I'm now 37. There were many times when I was begging to be believed.”
Jayde's journey towards her diagnoses was a long and arduous one, marked by a series of challenges and obstacles. It all began when she first presented her symptoms to her GP at the age of 19. She had been experiencing severe pain, which she initially believed was due to menstrual cramps, a common experience for many women. However, as time went on, her pain only grew worse, and she began to experience other symptoms as well.
Despite her growing concerns, medical professionals were initially dismissive of Jayde's complaints, and she found herself facing disbelief and skepticism at every turn. This pattern unfortunately echoes the experiences of countless women who are navigating a similar path. For years, Jayde continued to struggle with her symptoms, seeking out medical attention whenever possible, but often finding herself met with frustration and disappointment.
Jayde was diagnosed with endometriosis only six years ago, which was 12 years after she had first presented with symptoms. This delay not only prolonged her suffering but also worsened her feelings of isolation and frustration. She was left grappling with the disheartening reality of feeling unheard and misunderstood by those entrusted with her care. Endometriosis is the second most common gynecological condition in the UK, affecting 1 in 10 women (1.5 million). Shockingly, however, it takes an average of 7.5 years to get diagnosed with endometriosis according to Endometriosis UK.
Endometriosis is a condition that currently has no cure. However, it is still crucial for women like Jayde to receive a timely diagnosis so that they can get the right treatment. This can help save them from years of living in constant pain and improve their quality of life. With proper treatment, women can manage their symptoms, continue to work or study, and live life without any restrictions. Furthermore, a diagnosis can provide validation for women's symptoms, preventing them from being dismissed. It can also help women make informed choices about fertility issues, as endometriosis can double the risk of infertility in women under 35 years old.
Finally, having a diagnosis of endometriosis can reduce the burden on the healthcare system by decreasing the number of unnecessary GP visits and treatments. However, despite the fact that it costs the UK economy £8.2 billion annually (Endometriosis UK, 2024), this issue of endometriosis taking so long to be diagnosed or not being taken seriously by many doctors is still prevalent in the UK. This is one of the reasons why Jayde is so passionate about sharing her experiences.
Endometriosis is so much more than just a "bad period". It's like your body isn't yours; it's always lurking in the background even on good days.
Jayde feels incredibly frustrated at the lack of support she has received over the last decade. During her interview, she shared a particularly distressing incident from her journey where her gynaecologist cancelled one of her surgeries for her endometriosis at the last moment, despite Jayde having worked diligently for over six months to ensure her blood levels were optimal for surgery under the guidance of her diabetes nurse. The gynaecologist was not satisfied with Jayde's blood test results, even though they were in the normal range, which was a considerable setback. She describes how she lost all hope and even refrained from seeking medical assistance from gynaecology for her conditions for the next three years.
Jayde's experiences in the healthcare system have taken a toll on her emotional health, and she is struggling not only with her physical pain and symptoms but also with the emotional scars left by years of invalidation. She has been diagnosed with Fibromyalgia and Complex Post-Traumatic Stress Disorder (C-PTSD), which she believes are the result of enduring years of disbelief and dismissal by medical professionals.
Jayde admits, "I'm a broken soul", which is a raw acknowledgement of the scars left by those who failed to see and acknowledge her pain.
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.
Jayde's decision to share her story with A Note of Hope was driven by her desire to dispel a common misconception about endometriosis. She wanted to emphasise that endometriosis is more than just painful periods and highlight the many ways in which it can impact a person's daily life. Her hope is that by sharing her story, she can raise awareness about this debilitating condition and help others who are going through the same experience.
While endometriosis is commonly associated with menstrual health, it is an ongoing battle that can significantly diminish the quality of life for millions of women daily. It is a painful and unpredictable condition that can cause fatigue, chronic pain, fertility issues and more. Jayde's story highlights the need for greater awareness and understanding of this condition, so that those affected can receive the support and care they need to manage the symptoms and improve their quality of life.
"Living with a condition like Endometriosis isn't just about the physical effects. It also harms your mental health, relationships with partners, friendships, and aspirations for the future. It's way more powerful than most people think."
The invisible nature of conditions like endometriosis, where symptoms may not always be outwardly visible, can make it particularly challenging for others to understand the magnitude of the suffering experienced by those affected. This can lead to misconceptions and dismissive attitudes, where individuals may trivialise the condition's impact or attribute a person's symptoms to mere exaggeration or weakness.
Jayde's story sheds light on this issue. She shares that one of the most challenging aspects of living with endometriosis isn't just the physical pain of her condition but also the emotional turmoil stemming from disbelief and abandonment by friends and family. In addition to her challenging encounters with medical professionals, Jayde opens up about reaching out to those closest to her, seeking understanding and support during vulnerable moments. Instead, she faced skepticism and dismissal. Her family and friends, unable or unwilling to grasp the depth of her suffering, turned away, leaving Jayde to navigate some of her darkest moments alone. Some even went as far as suggesting she wasn't truly sick, which was particularly devastating. This absence of expected support has left deep scars, fuelling a sense of self-doubt and self-blame within Jayde.
"My biggest challenge has been when people didn't believe me and left me alone when I needed them the most. I have been through some dark times with my family and friends, and I feel that part of the reason I hate myself and my body is because they made me feel like it was somehow my fault."
Jayde openly acknowledges the pervasive influence that chronic pain and fatigue can have on someone's life. She recognises that living with a chronic illness like endometriosis can cause individuals to be in a constant state of survival mode, making it easy to overlook the beauty and joy in life that others often take for granted. Vulnerably, Jayde reveals that this is her current state of mind, which highlights a harsh reality for many people living with endometriosis and other invisible illnesses. With limited treatment options and no cure in sight, this burden can weigh heavily on individuals dealing with such chronic conditions. It's important to recognise that endometriosis and other chronic illnesses not only cause physical pain but can also have a significant impact on a person's mental and emotional well-being.
Therefore, it's essential to have a support system in place. Understanding and support from loved ones can make a significant difference in managing the condition and maintaining a positive outlook. Sometimes just having someone to talk to and share your struggles with can make all the difference in the world.
One of the most common concerns associated with endometriosis is its impact on fertility. When a person with endometriosis tries to conceive, the tissue growth outside of the uterus can interfere with the fertilisation of the egg, or the implantation and development of the embryo, making it difficult to get pregnant. This association with fertility problems can be a source of great concern for many women who have always dreamed of starting a family. Receiving a diagnosis of endometriosis can be devastating and heart-wrenching for them as they fear they may not be able to conceive.
However, it is important to note that endometriosis is not a direct cause of infertility, and many women with endometriosis can and do become pregnant without any medical assistance. It is also important to note that treatment for endometriosis can significantly improve a person's chances of getting pregnant.
Despite this, the emotional toll of receiving a diagnosis of endometriosis and the uncertainty it brings cannot be underestimated. It can evoke feelings of anxiety, despair, and hopelessness. Jayde, who has personally gone through this experience, understands this all too well. She knows that her condition could have easily overshadowed her dreams of motherhood. That's why she feels incredibly fortunate and blessed to have been able to have conceived and had her daughter, who she describes as a precious gift amidst all the hardships and setbacks she has faced in her life.
"Though my pain and fatigue can be overwhelming, spending time with my daughter, dogs, and mum brings me joy. I also enjoy journalling."
Jayde has faced many challenges on her journey but she has also discovered some key sources of comfort and happiness. One of the biggest sources of support for Jayde is her mother, who has been a constant presence throughout her journey. Her mother's unwavering support and encouragement have been invaluable to Jayde, especially during the most difficult times.
Aside from her mother, Jayde also finds solace in her two dogs. These furry companions offer her much-needed companionship and unconditional love, which helps her feel less alone. Spending time with her dogs has become an essential part of Jayde's daily routine, and she cherishes every moment she spends with them.
In addition to her support system, Jayde has discovered a profound love for journalling. Writing down her thoughts and emotions has become an incredibly cathartic outlet for her, and she has found that it helps her process her experiences in a healthy way. Journalling has also played a pivotal role in encouraging Jayde to document more of her journey.
"When others doubt you, do not doubt yourself. When others do not believe in you, believe in yourself. Your body is your home, and no one else knows it better than you."
As Jayde looks back on her journey and the challenges she has faced, she offers a heartfelt message of hope to her younger self. She encourages herself to believe in her own worth, nourish her soul, and embrace the obstacles that lie ahead.
Ultimately, Jayde's story is a powerful testament to the significance of speaking up and advocating for better healthcare and support. It highlights the profound impact that this can have in the struggle for increased access to quality healthcare, especially in the area of women's health. It also emphasises how such advocacy can provide solace to others going through similar situations, helping them feel less isolated and alone.
Thank you Jayde for sharing your inspiring story for the 'A Note of Hope' project.
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