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Chelsey's Inspiring Interview: Finding ‘Beauty Among Pain’ whilst pursuing an Endometriosis Diagnosis.

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

"I am grateful for the opportunity to share Chelsey’s story, which she shared with us via TikTok by answering our standard questionnaire. Through this project, I have heard many accounts of endometriosis that follow a familiar path. Despite experiencing symptoms since her very first period at age twelve, Chelsey, now 18, is still waiting for a concrete diagnosis and an appointment with a gynaecologist.


Chelsey provides a detailed narrative about her pain and its impact on her life. However, I was incredibly inspired by how Chelsey has used her pain to start a small business called ‘Beauty Among Pain’ with two of her friends. Together, they create jewellery, mainly bracelets, in colours representing different conditions (purple for lupus, yellow for endometriosis, etc.). They donate a portion of their profits to charity, raising vital awareness and funds for chronic health causes.


I am inspired by Chelsey’s resilience and her efforts to use her pain to advocate for change, and I am honoured to share her story and hope it will inspire you too!" - Ellie Howe, creator and author of 'A Note of Hope.'

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A Note of Hope Inspiring Interviewee Chelsey (18, UK)
“I've always had painful periods since my first one at age 12, but I assumed they were normal. However, around June or July last year, the pain slowly got worse…”

At just eighteen, Chelsey’s life has been overshadowed by a painful condition that remains largely invisible to the outside world—a condition she is only now beginning to understand. After facing a relentless, invisible battle with chronic pain since her first period at age twelve, she initially dismissed the pain as normal—after all, many women experience period pain. It wasn't until last summer, when she was seventeen, that she realised something more serious might be at play.

 

Working nine hour shifts as a carer, Chelsey would return home utterly exhausted and in severe pain, struggling to find energy for college the next day. Despite multiple visits to her doctors, she was repeatedly told her symptoms were due to diet or irritable bowel syndrome (IBS). But the pain persisted daily, often flaring up unpredictably, especially when she overexerted herself. The physical demands of her job, combined with the stress of balancing work and education, exacerbated her condition, leaving her feeling isolated and frustrated by the lack of understanding from those around her.

 

A revelation from her mother shed light on what could be wrong: Chelsey's aunt had been diagnosed with endometriosis, and her late grandmother had also suffered from it, necessitating a hysterectomy at thirty-seven. Other family members, including another aunt and two cousins, exhibited symptoms but remained undiagnosed. With this new information, Chelsey began to see her struggles in a different light.

 

Endometriosis is a chronic condition where tissue similar to the lining inside the uterus, called the endometrium, grows outside the uterus. This tissue can spread to various pelvic organs, including the ovaries, fallopian tubes, and the pelvic lining, causing severe pain, especially during menstruation. Other symptoms include pain during intercourse, excessive bleeding, chronic fatigue, and gastrointestinal issues.


 
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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.


Click Here

 

“Whenever I'm on my period, the pain is so intense that it stops me from going out or doing anything.”

However, Chelsey's struggle with this undiagnosed pain has profoundly impacted her daily life and relationships. The severity of her symptoms often prevents her from going out or engaging in activities she once enjoyed. During her last relationship, the pain was especially challenging. Her ex-boyfriend, far from being supportive, would often belittle her, blaming her for "ruining" their time together because she was in pain. This emotional abuse compounded her physical suffering, leading to many tearful nights after being kicked out of his place early under the pretence of his need to study or work—a facade for his infidelity, as she later discovered.

 

Beyond the emotional toll, Chelsey faces constant physical challenges. She experiences relentless nausea and continuous pain in her lower abdomen, which intensifies during her menstrual periods. This chronic pain disrupts her sleep, leaving her perpetually exhausted despite getting 8-9 hours of rest. The result is chronic fatigue, a debilitating condition that saps her energy and makes even the simplest tasks feel insurmountable.

 

Despite being a condition that affects millions of women worldwide, according to Endometriosis UK it takes approximately 7.5 years for women to receive a diagnosis of endometriosis due to the widespread misunderstanding of the condition, a situation Chelsey describes as both frustrating and disheartening.


“I have yet to get diagnosed, which is disheartening and makes me feel sad.”

In September, just a week into her apprenticeship at a nursery, Chelsey faced a significant health scare. After leaving early from a counselling session due to feeling extremely unwell and experiencing severe pain, she began vomiting, with traces of blood appearing later that night. Alone at home because her parents were away, Chelsey relied on her older brother to take her to the hospital the next day.

 

At the hospital, she was admitted to the paediatrics ward due to her age. The staff treated her with kindness and concern. Initially, there were fears of an inflamed appendix, leading to a series of tests, including a blood test and a consultation with an on-call GP. She was then transferred to the surgical assessment unit to wait for further evaluation by a surgeon. While waiting, Chelsey encountered several compassionate older women, who, once she confided her concerns about having endometriosis, shared their own experiences with the condition. These interactions provided Chelsey with emotional support and a sense of solidarity.

 

The following day, Chelsey underwent an ultrasound performed by three sonographers who initially suspected appendicitis. Despite not finding any conclusive evidence, one sonographer mentioned that endometriosis can be difficult to detect via ultrasound and reassured her that the hospital had top endometriosis specialists. Subsequently, she was referred to the gynaecology department, where another examination took place. However, the gynaecologist couldn't conduct a thorough exam due to the pain Chelsey was in. Although the gynaecologist couldn't offer immediate help beyond a sick note for two weeks off work, she assured Chelsey that they would continue investigating her condition.

 

A few weeks later, Chelsey experienced another severe episode after returning to work, nearly fainting and requiring an ambulance. The paramedics conducted a blood test and an EKG, expressing concern over her symptoms. During this time, Chelsey received a clinical diagnosis of endometriosis from a doctor, a significant step forward. However, she is currently still waiting for a formal appointment with a gynaecologist for a definitive diagnosis and a comprehensive treatment plan.


Chelsey is still waiting for an official diagnosis


“The biggest challenge is coming to terms with the possibility of having a chronic illness. I constantly worry about what will happen if I do have endometriosis.”

The biggest challenge for Chelsey has been coming to terms with the possibility of having a chronic illness. "I think every day about what happens if I do have endometriosis," she admits. "I have the constant fear I may not be able to have kids and that I'll have to undergo surgery to get fully diagnosed."

 

These fears are not unfounded - Endometriosis can significantly impact fertility, with estimates suggesting that 30-50% of women with endometriosis may experience infertility. The condition can cause scarring and blockages in the fallopian tubes, as well as inflammation in the pelvic area, all of which can interfere with the ability to conceive. This potential barrier to having children is a source of profound anxiety for Chelsey, amplifying her fear and uncertainty about the future.

 

Furthermore, a diagnosis of endometriosis is often confirmed through a laparoscopy, a surgical procedure where a camera is inserted into the pelvic cavity to visualise the extent of endometrial tissue growth. For someone as young as Chelsey, the prospect of undergoing surgery is daunting and frightening. This fear is compounded by the emotional burden of potentially receiving a definitive diagnosis of a chronic condition that could affect her for the rest of her life.

 

“I left my job at the nursery and as a carer and have been unemployed for a couple of months. It's hard to find a less demanding job because I know that if I get a physically demanding job, my health will deteriorate again. However, I'm hoping to start online university in October and then train to be a teacher.”

Additionally, reflecting on the most challenging parts of her journey, Chelsey frequently references how her health has impacted her work and college life. Unable to maintain demanding jobs due to her health, Chelsey bravely opens up about how she has been unemployed for several months and how the impact of her conditions means she had to take a step back from her education.

 

The decision to step back from her work placements and college course was one that weighed heavily on her heart. While her friends continued their academic journeys, the divergence in their paths made her acutely aware of her own struggles, creating a sense of isolation and difference that she couldn’t shake.

 

"All of my friends are in college, and I'm not. It’s hard to go out with them and do something fun as I am always in pain.” She explains. While she acknowledges her friends are supportive and understanding of her situation, the pervasive feeling of not being able to keep pace with them cast a shadow over her confidence, exacerbating the emotional toll of her health challenges. 

 

Furthermore, the chronic pain and fatigue caused by her condition made it impossible for her to keep up with the physical and mental demands of her previous work placements, as a nursery assistant and as a carer. Each attempt to push through the pain only led to further health setbacks, making it clear that she needed to find a career path more compatible with her condition.

 

Recognising the need for a more flexible and less physically demanding career, Chelsey plans to start online university in October, hoping to train as a teacher—a career she believes will better accommodate her condition. "Finding a job that isn't so demanding is hard," she says. "I know if I get a very demanding job and have to lift things, my health will deteriorate again."

 

Chelsey’s decision to pursue an online university education is a strategic move to mitigate these challenges. Online education offers flexibility, allowing her to manage her studies around her health. If she has a particularly bad day, she can take the time she needs to rest and catch up on coursework later, without the pressure of strict attendance requirements.


 

“I think my biggest achievement is my small business, Beauty Among Pain. It's dedicated to raising awareness and funds for various chronic illnesses and mental health.”

In the meantime, Chelsey has taken matters into her own hands by starting a small business called Beauty Among Pain, which she considers her biggest achievement. The business focuses on raising awareness and money for different chronic illnesses and mental health.


Beauty Among Pain is not just a business for Chelsey; it’s a mission. Run alongside her friends Chantelle and Clara, whom she met on TikTok, the initiative aims to create a supportive community for those with chronic illnesses. "It's a safe place where anyone with or without a chronic illness can interact with our posts, ask questions, and leave advice for others," Chelsey explains. "There is no judgment. We want to grow this small business into something big and erase the stigma and lack of understanding towards chronic illnesses."


Starting Beauty Among Pain was not a simple endeavour; it required meticulous planning and dedication. Chelsey and her friends brainstormed product ideas, designed products, and developed a brand that resonates with people living with chronic illnesses. Currently, their products include bracelets in various colours, with each representing different causes and conditions. They are also hoping to expand into resin pieces in the near future. Each sale not only helps spread awareness but also funds important research and support services for those affected.


The impact of Beauty Among Pain extends beyond financial contributions. The business has become a beacon of hope and solidarity for many who feel isolated by their conditions. Chelsey often receives messages from customers expressing gratitude for the sense of community and understanding that Beauty Among Pain fosters. It’s incredibly rewarding for her to know that their efforts make others feel seen and supported.


Chelsey’s story is not only about her struggle but also about her strength and determination to create a supportive community for others. Despite being bullied from ages 7 to 16, she has turned her experiences into a source of empowerment. "I was in a dark place, but my friends got me through it," she reflects. "Now, I am raising awareness to let people know they are strong and that they'll be okay."


 

A girl in a garden with grass and trees, her back is to the camera and she’s looking over her should smiling at the camera
Chelsey says keep smiling!
“My note of hope to my past self - keep smiling and know it is all going to be ok! that things get better and that you made some amazing friends and are finally in a good place. don't give up and follow your dreams, don't let anyone stop you!”

In addition to her entrepreneurial skills, Chelsey finds joy in simple pleasures: spending time with friends, listening to music, reading a book, and watching Netflix or her favourite content creators like Max and Harvey, Alex Warren, and others. Her friends have been a pillar of support, understanding her limitations and standing by her side. These simple pleasures remind her that despite the hardships, there is still joy to be found in life.

 

In her note of hope she encourages others facing similar struggles to keep smiling and hold onto hope. "Don't give up and follow your dreams," she says. "Don't let anyone stop you."

 

Ultimately Chelsey's resilience and advocacy are paving the way for greater awareness and empathy, inspiring others to fight for their health and happiness despite the challenges they face. Her efforts with Beauty Among Pain demonstrate how personal adversity can be transformed into a beacon of hope and support for a broader community, emphasising that even in the face of chronic illness, it is possible to achieve great things and make a positive impact.


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


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