For Endometriosis Awareness Day, a woman named Alicia has taken to social media to share her nine-year struggle to get an endometriosis diagnosis, which eventually led to her developing a neurological disorder.
As a disability advocate, Alicia uses her TikTok platform to raise awareness about her conditions and the lengthy process it took to receive a diagnosis.
In one video, she revealed: “I had to go to the doctors after my first period because my mumwas concerned about my bleeding. I had my first period at 12 years old and heard the word ‘endometriosis‘ for the first time.”
She continued: “I first showed symptoms of endometriosis on my first period and it still took me nine years to be diagnosed with stage 4 endometriosis disease in my cervix, womb, pelvic wall, and bowel.”
In the caption of the video, she further explained: “It took me 9 years to be diagnosed with stage 4 endometriosis disease after showing signs of endometriosis since my first period. Period pain is often minimised, disregarded and ignored by doctors. However, the reality is endometriosis pain is intense, debilitating and unbearable.”
She added: “Endometriosis disease is more than “just a bad period”, it a long-term chronic menstrual condition that has no cure and hardly any medical research.”
In a second video, Alicia also shared that due to the delay in her diagnosis, her endometriosis caused so much nerve damage that her brain began to rewire itself incorrectly, leading to Functional neurological disorder (FND).
Functional Neurological Disorder (FND) is a neurological condition that stems from changes in the way brain networks function, rather than structural changes within the brain itself, as per the National Institute of Neurological Disorders and Stroke. Often triggered by exposure to psychological stressors, FND can manifest in symptoms such as seizure-like episodes, movement issues, and cognitive function problems.
What is Endometriosis?
Endometriosis is a condition where cells akin to those lining the womb grow in other parts of the body, including the ovaries, fallopian tubes, and pelvic lining, according to the NHS. It can also affect organs like the bladder and bowel.
The most common symptoms include severe period pains, heavy periods, and pain when using the toilet. Less common symptoms encompass lower tummy and back pain, pain during or after sex, extreme fatigue, and pain or bleeding in other areas, such as the chest, leading to shortness of breath and coughing up blood.
If you experience any of these symptoms and suspect you may have endometriosis, the NHS advises contacting your GP. Diagnosis may take some time as several tests may be required to confirm the presence of endometriosis.
While there is currently no cure for endometriosis, treatments are available to help manage the symptoms. These include painkillers or hormonal treatments like the contraceptive pill to manage pain.
If these methods prove ineffective, surgery to remove the endometriosis tissue may be offered.