top of page

Jess's Inspiring Interview: A Dublin nurse's decade-long battle for a diagnosis of Endometriosis, Adenomyosis, and Pudendal Neuralgia.

Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.

"I am proud to share Jess's story as a part of our project. Jess discovered our project on TikTok and reached out to me to share her experience with endometriosis. She filled out our standard questionnaire and provided such a detailed and impactful narrative of her journey that it honestly left me speechless.  


Endometriosis is a condition that is often misunderstood and overlooked, despite its silent but profound impact. As I read through Jess's story, I felt as though I had walked beside her over the last ten years of her life. Her words vividly painted a picture of everything she had been through, from frustration, heartbreak, and uncertainty, to resilience, hope, and unwavering determination. One striking aspect of Jess's story was her highlighting the fact that there are very few endometriosis specialists in Ireland (where Jess is an oncology nurse in Dublin). Given that millions of women worldwide are affected by this condition, this was very shocking for me to read. Jess's story highlights the urgent need for greater support, awareness, and understanding for individuals living with endometriosis.


I hope her story resonates with you and teaches you something new (Or many things!), just as it did for me!" - Ellie Howe, creator and author of 'A Note of Hope.'

A Note of Hope logo
 
Selfie of a girl smiling at the camera. She has shoulder length hair , blue eyes, and a tattoo of a heart beat on her right shoulder.
A Note of Hope Inspiring Interviewee Jess (25, Dublin)

In December 2020, Jess's life took a drastic turn when she was diagnosed with endometriosis, a condition in which tissue similar to the lining of the womb begins to grow outside of the uterus on several organs within the pelvis. In some rare cases, it can even spread beyond the pelvic region. Symptoms can vary widely from person to person but often include pelvic pain, painful menstrual cramps, excessive bleeding during periods, infertility, and digestive issues such as diarrhoea, constipation, or bloating. It is commonly misdiagnosed as IBS (Irritable Bowel Syndrome)  


Jess’s journey began at the age of thirteen when she experienced her first menstrual period. While this is usually a significant milestone for most girls, Jess's experience was quite different. Instead of the mild discomfort traditionally associated with menstruation, Jess experienced excruciating pain. She recalls this by saying, "I distinctly remember the pain of my first period and the shock of thinking that pain was a normal part of life and being a woman.”


Jess continued to grapple with heavy bleeding and debilitating pain throughout her teenage years. The severity of her symptoms often forced her to miss school and social activities, leaving her feeling markedly different from others her age. In a desperate search for answers about the large blood clots and pain she endured monthly, Jess recalls writing a letter to a health magazine asking for advice. However, the response she received was shockingly dismissive.


“I remember having huge blood clots the length of my finger each month. Along with my other symptoms, I was really worried. When I was fifteen, I wrote to a health magazine to ask if what I was experiencing was normal. They responded that I was probably just very fertile."

At the age of seventeen, approached her General Practitioner (GP) for support. This marked the beginning of Jess's journey with trying various hormonal contraceptives, which are often used in the treatment of gynaecological conditions such as endometriosis, as they are effective in modulating hormonal fluctuations and alleviating associated symptoms.

She was initially prescribed the combined pill, a form of oral contraceptive containing synthetic versions of oestrogen and progestin hormones, which, in addition to preventing pregnancy, can also help treat symptoms associated with endometriosis by regulating menstrual cycles and reducing menstrual cramps. Jess remained on the combined pill for two years until she began experiencing depressive episodes. Depression is a known but rare side effect of hormonal contraceptives, and Jess describes her experience as debilitating, affecting her mood, energy levels, and overall well-being.


Consequently, Jess decided to wean herself off and, following a brief period without contraception during which the pain became unbearable again, began to seek alternative options. A visit to a women's health centre led to the suggestion of the Jaydess coil, a type of IUD. An Intrauterine Device (IUD) is a small, T-shaped contraceptive device that is inserted into the uterus. There are two main types: hormonal and non-hormonal (copper). Similarly to the contraceptive pill, Hormonal IUDs regulate the menstrual cycle and reduce symptoms of conditions like endometriosis by thinning the uterine lining and suppressing ovulation.


Unfortunately, Jess's experience with the coil was, once again, far from positive. Over the course of eight months she found herself in the emergency department on three separate occasions due to complications. Eventually, on her third visit, they decided to remove it.

It's important to note that every individual's experience is different, and for many women with endometriosis and other conditions, these contraceptive treatments provide significant relief from their symptoms. However, as Jess's experience illustrates, managing endometriosis can be complex, and the effectiveness of hormonal contraceptives can vary depending on the individual.


On one of her visits to the emergency room, Jess experienced a glimmer of hope when a compassionate consultant took the time to listen to her story. This encounter marked a turning point for Jess, who finally felt validated in her experiences.

"It was only when a consultant in A&E sat me down and asked me if anyone had ever mentioned endometriosis that I felt listened to. He spoke with me for about 20 minutes, explaining the symptoms and how they are often misdiagnosed."

The consultant's empathy and understanding prompted him to refer Jess to a gynaecologist within the hospital for further evaluation and treatment. Unfortunately, this gynaecologist would only go on to dismiss Jess’s symptoms once again.


After exhausting all options available within the public health system, Jess made the difficult decision to seek help and a complete diagnosis from a private healthcare provider. Unfortunately, she did not have medical insurance or substantial financial resources to cover the expenses, so in her desperation she had to take out a loan from her bank to do this. This reflects the experiences of countless others who are currently struggling to receive treatment for endometriosis, highlighting the risks people are willing to take to access the appropriate care.


After Jess's initial private appointment, she was quickly scheduled for an exploratory laparoscopy, a minimally invasive surgical procedure that is commonly used to diagnose and treat conditions in the pelvic region. During the procedure, endometriosis lesions were found not only on Jess's pelvic wall but also on her bowels and rectum. This was a breakthrough for Jess, who describes being overwhelmed with relief at finally having a concrete diagnosis to explain her years of suffering.


In addition to the diagnostic findings, the surgeon also inserted a Mirena coil, another hormonal intrauterine device (IUD) that releases a small amount of progestin to help reduce pain and inflammation from endometriosis. The Mirena coil is often used as a long-term treatment option for endometriosis, and despite her bad experience with the Jaydess coil, Jess hoped that it would provide her with the relief she so desperately needed.


The timing of Jess's surgery was particularly challenging, as it took place just under two weeks before she commenced her final year internship in Nursing. Despite the physical discomfort and the demanding schedule ahead of her, Jess felt euphoric in finally having answers and a plan for treatment.


A woman wearing nursing scrubs, taking a picture in a lift mirror.
Jess in her nursing scrubs.

After her surgery, Jess was also prescribed a medication called Decapeptyl, which belongs to a class of drugs called Gonadotropin-releasing hormone (GnRH) agonists. This type of medication temporarily suppresses the production of oestrogen, inducing a state of medical menopause. By reducing the levels of oestrogen, the hormone that stimulates the growth of endometrial tissue, these medications alleviate the symptoms associated with endometriosis.


Decapeptyl is a medication that is administered through an intramuscular injection (for women), which Jess was scheduled to receive every three months. Although medications like Decapeptyl can be effective in providing relief from endometriosis symptoms, they are generally recommended for short-term use due to potential side effects such as mood swings and decreased bone density. While Jess experienced some relief from her symptoms, she found the accompanying side effects too difficult to tolerate. She ultimately decided to discontinue the treatment after just one injection as the toll it took on her overall well-being outweighed the benefits.


Exhausted and frustrated by her experiences so far, Jess decided to shift to a more holistic approach. She sought the expertise of a kinesiologist, with the hope of identifying the underlying triggers of her endometriosis symptoms. Kinesiologists are experts in human movement and exercise, using scientific principles to understand how the body moves and functions. This helped Jess to delve into the complex connections between her body, mind, and overall well-being. This decision was a turning point in her journey, ultimately changing how she managed her health and well-being.


By eliminating trigger foods, incorporating nourishing, anti-inflammatory options, and focusing on improving her gut health, Jess noticed a remarkable reduction in the frequency and intensity of her flares. As she implemented these changes into her daily life, she began to experience remarkable improvements in her condition. The frequency and severity of her endometriosis flares reduced significantly, and she found herself enjoying more good days than bad.


“In 2022, I went to a Kinesiologist who helped me to identify my endometriosis triggers. Honestly, this is probably the best thing I’ve ever done for myself. I changed my diet and worked on improving my gut health; my flares reduced significantly and I had more good days than bad!”

For a while, it seemed Jess had finally found the key to managing her condition until her symptoms returned with a vengeance in late 2023, with no apparent triggers. To make matters worse, she also began experiencing new and alarming symptoms—shoulder pain, shortness of breath, and recurrent chest infections—that left her feeling utterly overwhelmed, defeated, and unsure of what to do next.


With no clear answers or solutions in sight, she decided to take matters into her own hands and began researching specialists outside her country. After an extensive search, she found an endometriosis specialist in Romania and decided to reach out. To her surprise and relief, the doctor responded promptly and offered a glimmer of hope.


Based on her recent symptoms, they began to question whether Jess may also be suffering from pudendal neuralgia. The pudendal nerve transmits sensations in the genital, rectal, and perineal areas. When this nerve becomes compressed, inflamed, or damaged, it can cause a range of painful symptoms, including chronic pelvic pain. Recent research has suggested a link between pudendal neuralgia and endometriosis, which indicates that the inflammation and scarring caused by endometriosis can result in the compression or damage of the pudendal nerve.


In light of this news, Jess recently travelled to Bucharest for an MRI and an in-person consultation. The MRI scan revealed that Jess has not only pudendal neuralgia but also Adenomyosis and Pelvic Congestion Syndrome. Adenomyosis is a condition that occurs when the inner lining of the uterus breaks through the muscle wall of the uterus. Pelvic Congestion Syndrome, on the other hand, is a condition that causes chronic pain in the pelvic region due to varicose veins in the pelvic area.


Moreover, the MRI scan also revealed that Jess's right ovary is stuck on her pelvic wall and a part of her sigmoid bowel. This is a condition known as ovarian adhesion, which can cause chronic pain and discomfort. Jess is frustrated and heartbroken that she had to seek specialist help outside her country to get these answers after years of suffering. She describes how "It's been a mix of emotions receiving these diagnoses" as she reflects on her journey to get to this point.


Jess is scheduled for surgery in Romania in June, where doctors will attempt to remove the endometriosis tissue and decompress the pudendal nerve. The surgeon will also perform a Neurectomy and cut the nerve responsible for sending pain signals from the uterus to the brain, which will hopefully alleviate the Adenomyosis pain.   


While this procedure isn't a cure, Jess hopes it will provide some relief and enable her to improve her quality of life. The specialist has advised Jess that, down the line, she may need a hysterectomy, which is a surgical procedure that involves the removal of the uterus. However, he believes she is too young for this procedure as she may want to have children.

In the meantime, based on their advice, Jess has stopped intense exercise and weightlifting, which they suggested may be putting extra pressure on the pudendal nerve. She has already noticed a slight reduction in her pelvic flare-ups.


“I’ve tried so many things to help my pain – physio, acupuncture, diet, losing weight, surgery, pills, IUDs, GnRH, surgery, and more. Most of which haven’t helped. But I’m not giving up! I hope by sharing my story and experiences, I can help as many girls as I possibly can throughout their journey”.

Despite facing numerous setbacks and challenges on her journey, Jess remains determined to find relief and refuses to give up hope. Her experience echoes that of millions of women worldwide who have had their lives disrupted by endometriosis and its limiting symptoms.


 
A Note of Hope logo

To find out more about Endometriosis, click the links 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.


Click Here



 

Selfie of a woman in a hospital bed. shes giving a thumbs up to the camera.
Swapping her scrubs for a gown, Jess as an inpatient.

Jess says the biggest challenge she has faced has been the profound lack of understanding and recognition she has encountered throughout her journey. In a world where invisible illnesses are often dismissed or misunderstood, Jess's struggle to have her experiences validated and her pain acknowledged is all too common among individuals living with endometriosis as well as other invisible chronic conditions.


One of the most distressing aspects of Jess's experience has been the lack of validation and empathy from healthcare professionals. Despite her persistent efforts to seek help and relief from her debilitating symptoms, Jess recalls leaving appointments in tears, frustrated by the dismissive attitudes of medical professionals who minimised her pain and told her to simply "get over it" or "learn to live with it."


“No one can understand just how debilitating endometriosis is unless they have to live with it every day.”

Sadly, Jess's experiences are not unique. Endometriosis is a chronic condition that affects millions worldwide, and many individuals encounter significant challenges when it comes to seeking medical care. According to a report by Endometriosis UK, approximately one in ten women of reproductive age in the UK suffer from endometriosis, as well as ten percent of women worldwide. This means that over 1.5 million women in the UK and almost 200 million women worldwide are affected by endometriosis.


However, despite being the second most common gynaecological condition in the UK, a recent study has shown that the diagnosis times for endometriosis have significantly increased over the last three years, averaging at 8 years and 10 months (Endometriosis UK, 2024). The lack of awareness and understanding surrounding the condition often results in a delayed or incorrect diagnosis, as well as inadequate treatment. This can have serious repercussions for those who suffer from the condition. For Jess and countless others, these difficulties not only cause feelings of frustration and isolation but also contribute to the widespread misconception that endometriosis is a manageable inconvenience rather than a debilitating condition.


In addition to this, Jess has also faced scepticism and invalidation from friends and family members regarding her condition of endometriosis. Despite her efforts to explain how debilitating it is, she has encountered well-meaning but misguided advice and remarks such as "Have you tried yoga?" or "You'll be fine; just push through it" which trivialise Jess's experiences and fail to acknowledge the profound impact that endometriosis has had on her life.


This is an everyday reality for many people as the invisible nature of this condition often leads others to underestimate its impact on people's physical and emotional well-being.


Women crying, with her head resting in her hands.
Jess' conditions impact her physical and emotional wellbeing.
“The biggest challenge for me is being listened to. I’ve had countless doctors tell me that I have to get over it and learn to live with the pain. I’ve had friends tell me it's probably something else causing my pain, not my endo. I’m sure it's frustrating for my friends and family when I’m not my old ‘full of energy’ self anymore, but comments like “Now what's wrong with you?” or “Just come out, you’ll be fine. You can rest another time!” really aren’t helpful.”

Despite her challenges, Jess remains committed to supporting and empowering other women on their journeys with endometriosis. She is committed to educating those around her about the realities of the condition and advocating for greater recognition and support, which have become integral components towards her healing and empowerment.


As Jess's journey continues to unfold, her story serves as a powerful reminder that no one should ever feel alone or invalidated in their struggles with endometriosis or any chronic condition. By sharing her story with A Note of Hope, Jess hopes to encourage greater understanding, empathy, and support for individuals living with this invisible and misunderstood condition.


 

During difficult times, Jess has found inspiration in one of her favourite quotes, "The grass is greener where you water it," which reminds her to focus on the present and appreciate the good things in her life.


Despite dealing with chronic pain and fatigue for the majority of her life, Jess has learned to cultivate gratitude for the beauty and blessings that surround her. From the companionship of her beloved dachshund Winston to her mother's unwavering support, Jess finds comfort and happiness in the love and connections surrounding her. Jess also finds joy in the small moments, such as reading, relaxing, and enjoying music and television. She treasures the warmth of the sun on her face, discovering new artists, and laughing at funny TikTok videos. She believes that the simplest things in life often bring the most joy, a universal truth that many people don't realise until they face difficult times.


Throughout it all, Jess has remained optimistic and determined to live her life to the fullest, and her experiences with endometriosis have made her a stronger and more compassionate person.


Reflecting on her proudest achievements, Jess recalls the resilience that carried her through the trials of pursuing her nursing degree despite enduring years of pain. However, her hard work and determination paid off when she landed her dream job as an oncology nurse. Jess recalls her sense of accomplishment when she first stepped into the nursing field and the satisfaction of knowing she would make a difference in people's lives - patients just like her! Furthermore, Jess cherishes the friendships she has formed through her nursing career. She speaks fondly of her colleagues who have become lifelong friends and how grateful she is for the bonds she has formed with them.


More recently, Jess embarked on a journey to overcome her physical limitations and push her boundaries. Despite the initial obstacles, she persevered and successfully ran her first 5km without any breaks! This accomplishment, once deemed impossible, stands as a testament to her unwavering determination and resilience. As she looks to the future, now under the care of the Romanian specialist, Jess dreams of setting new goals for herself and achieving them with the same dedication and hard work that helped her complete her first 5km run. With surgery potentially on the horizon, she believes she will soon be able to get back on her feet and continue pursuing her passion for running.


Women sitting at a dinner table, holding a drink and smiling at the camera.
Jess reamins hopeful and positive for the future!

In a note of hope to her past self, Jess offers words of encouragement to herself and others facing similar challenges. "Everything will be okay. Everything will work out the way it's supposed to," she says, embodying kindness and compassion for herself and others. You are loved and supported, and you will get through this."


With faith in the journey and trust in her own resilience, Jess embraces the challenges ahead with optimism and grace. She believes every trial is a stepping stone to growth and resilience and embraces the idea that beauty can emerge from adversity, just like the flowers that bloom after the rain. She reminds herself to trust in the journey and the strength within.


“If I could write a note to my past self, it would say something like: Everything will be okay. Everything will work out the way it’s supposed to. You are loved. You are supported, and you will get through this. Without rain, there are no flowers, and the flowers are growing; just give them time."

 

A Note of Hope logo

Thank you Jess for sharing your inspiring story for the 'A Note of Hope' project.


Comentários


Comments

Share Your ThoughtsBe the first to write a comment.
bottom of page