Endometriosis affects approximately 1 in 10 women in the UK, a condition where tissue similar to the lining of the uterus grows outside of it. This disorder not only causes intense pain but can also result in infertility, fatigue, gastrointestinal issues, and feelings of loneliness and depression. Emma, a patient at Wessex Fertility, has battled endometriosis since she was 13 years old but received her diagnosis of stage 4 extensive endometriosis over four years later. In honor of Endometriosis Awareness Week, Emma courageously shares her journey to help raise awareness about this life-altering condition.
First Signs of Trouble
“I began experiencing symptoms around the age of 13. I had just started my periods, and between them, I suffered from terrible abdominal pain that often left me curled up on the couch, missing school. The pain became a regular occurrence, accompanied by dizzy spells and fainting. I also dealt with frequent urinary tract infections, about once every month or two. After visiting the doctor, I was referred for an ultrasound, but they found nothing wrong, insisting it was just normal period pain. Hearing that was devastating. As a young girl in so much pain, missing school affected my friendships and academic performance.
Despite my pleas for help, my situation only worsened. I returned to the doctor multiple times, and they prescribed different contraceptive pills starting at 14. Sadly, each pill made me feel worse, causing fainting spells and nausea. I was warned that these medications might affect my fertility in the future, which terrified me, but I felt powerless to change my situation.
As time went by, my symptoms escalated. I experienced excruciating periods, sometimes going months without one and then suddenly bleeding for weeks. This unpredictability caused significant anxiety at school, as I never knew when my period would strike. By the time I was 15, I was struggling with severe depression and anxiety, which led to missing a lot of school. My friends couldn’t comprehend what I was experiencing, and I didn’t even know how to explain it!
The pain was so debilitating that I needed Diazepam just to attend my 16th birthday party, and I can hardly recall what happened that day. I ended up studying for my GCSEs from home because the pain, anxiety, and fatigue were overwhelming—I often fell asleep while doing homework and struggled to get out of bed in the mornings.
The pain was relentless, and I relied on strong painkillers around the clock. I was diagnosed with severe IBS, which added to my distress. I often found myself hunched over in agony, feeling utterly lost.
In August 2017, at 16, I collapsed at home due to unbearable pain. I felt like I was dying and called an ambulance. At the hospital, they dismissed me again, saying it was just period pain and wanted to send me home to wait four weeks for an ultrasound. I refused to leave and was eventually admitted. The following day, an ultrasound revealed a 7cm endometrial cyst that was bleeding into my pelvic cavity, leading to emergency surgery that same day.
The Road to a Diagnosis
Post-surgery, I saw my consultant again, who shockingly claimed I didn’t have endometriosis despite the cyst. She suggested that my pain was all in my head, which was devastating at 16. Just when I should have been enjoying college life, I was stuck on heavy painkillers and frequently hospitalized.
Feeling hopeless, my family took me to a renowned specialist in London. I had high hopes, but he told me I was too young for endometriosis and that I would need to rely on painkillers and antidepressants for life. Hearing that at 17 was disheartening, and I felt ready to give up.
However, I refused to lose hope. In January, I consulted another expert in Portsmouth who specialized in endometriosis. Immediately, he ordered an MRI scan, and I burst into tears of relief, finally feeling like someone was taking me seriously. The scan revealed stage 4 extensive endometriosis; I had multiple cysts, and the tissue was deeply embedded in my pelvis. He scheduled surgery for March, and for the first time, I felt hopeful.
After surgery, I experienced more pain than I had ever felt. My consultant inserted a Mirena Coil to keep the endometriosis dormant, but I continued to suffer. After several consultations, we realized the surgery hadn’t alleviated my symptoms. My hormones might be causing the pain rather than the endometriosis itself.
My next option was Zoladex injections, which essentially turned off my hormones. At that point, I was desperate for relief. If successful, it was possible I would need a hysterectomy, a daunting thought at 17, especially as I wanted children. It was a heartbreaking decision between my quality of life and my future family. I decided to proceed with the injections, and for the first time, I experienced life without pain.
Facing Fertility Challenges
After extensive discussions with my consultant and family, I chose to undergo IVF with donor sperm as soon as I turned 18. This decision would allow me to have a child before potentially needing a hysterectomy, leaving me without regrets. I began IVF in January 2018, and by October 2018, my beautiful daughter was born.
The journey to diagnosis and treatment has been incredibly tough. Endometriosis is a devastating and debilitating condition, and there’s not enough awareness about it. While my story has a happy ending, many others do not. We need to discuss endometriosis in schools and raise awareness through GP surgeries, hospitals, and media.
No one should have to endure such hardships at a young age or make life-altering decisions before they even become adults.
For more information and support, visit Endometriosis UK. If you’re looking for helpful resources, check out this excellent guide on pregnancy and home insemination.
In addition, if you’re prepping for a new arrival, don’t miss our blog post on must-have nursery items on Amazon!
Summary
Emma’s story highlights the struggles faced by those living with endometriosis, from debilitating pain and misdiagnoses to pursuing IVF. Her journey underscores the need for greater awareness of this condition and the importance of advocating for oneself in the medical system.