If You Know 10 Women, You Need to Know About Endometriosis
We need more awareness and open conversations.
In 2019, I was diagnosed with endometriosis — a condition that I didn’t even know existed until I was sitting in the gynaecologist’s office 8 years after I first started having symptoms. And yet the illness impacts the lives of 1 in 10 women.
I was strongly advised to have surgery and was told it would make me better, but I wasn’t prepared for what followed…
What is Endometriosis?
Endometriosis is an inflammatory condition where tissue, similar to the lining of the uterus, grows in other parts of the body. The disease has no cure and was recently rated by the NHS as one of the most painful conditions people are most likely to suffer from. Endometriosis impacts the entire body, not just a persons’ “time of the month”.
Unfortunately, endometriosis can only officially be diagnosed via laparoscopic surgery. Due to the invisible nature of the illness and lack of awareness, diagnosis can be a long and difficult journey. Not only is diagnosis via surgery invasive, expensive and risky, but many women experience different symptoms and levels of pain. This has led to the disease commonly going undetected or misdiagnosed for years, with the average wait time between the onset of symptoms and diagnosis being 7 to 12 years.
How It All Started For Me
My journey with endometriosis started when I got my first period at the age of 13. For days I couldn’t move from my bed and was continually dealing with waves of pain and nausea. But I was told by healthcare professionals that period pain was “normal” and “pain was apart of every woman’s life” — but this is not true.
At the age of 21, I began to ask friends what their periods were like and started to realize what I was enduring approximately 3 weeks a month wasn’t normal. Some of which included: excruciating period pain which prevented me from sitting up, let alone attending school or university, along with, brain fog and overwhelming fatigue.
Although I complained about my symptoms and sought medical help for these issues — I didn’t receive a diagnosis until it was too late. By the time I received diagnosis my life was heavily impacted by symptoms after battling with the condition for 8 long years.
The Problems After Surgery
Before having surgery I was told the procedure would help me get better. I was reassured that everything would be for the best and that I would be okay but I wasn’t prepared for what followed.
It is now one year since my surgery. But it is in only the last few weeks that I have felt an improvement. I had the expensive excision surgery (which is regarded as the gold standard treatment for endometriosis) but other new problems ensued after my procedure.
Not only did I have rare physical complications and intense pain for months after surgery but I had also endured my worst bout of depression. Complications after surgery also forced me to quit my job and reduce university study because of the pain I was in.
I was completely unaware and unprepared for the complex emotions which followed the procedure. I faced the reality of a delayed diagnosis, doctors dismissing my symptoms for years and grief for the life I had, could have had, and lost.
Surgery was meant to make me better?
I felt so disheartened because I was told it would help me feel better and that things would change. I thought this surgery would make me feel more ‘normal’.
I was hoping to feel like my old self again but I felt further from that than I ever felt in my entire life.
I felt incredibly confused by everything and very alone. Even though I had family and friends to support me, they just didn’t understand what I felt and what I had gone through.
Why We Desperately Need to Talk More About Women’s Health
In Everyday Life
I was never taught about menstruation in school. The topic of periods was always brushed aside because it seemed to make people uncomfortable. Due to the stigma around women’s health — it wasn’t until I had suffered for 8 years that I even thought to ask my friends what their periods were like.
We need more open conversations because many women haven’t even heard of endometriosis and yet it impacts the lives of so many.
In Mainstream Media
I had never read or seen something that showed or explained how it feels to go through or experience surgery, let alone endometriosis. Recently when I was watching The Bold Type, I came across an episode where one of the main characters, Jane, has preventative surgery for breast cancer due to a genetic issue.
Although this wasn’t about endometriosis, the way the show depicted her pain and struggles overcoming surgery brought me to tears, because I truly had never felt so understood before. Jane explains that after surgery she thought she’d go back to herself again and feel normal but she really doesn’t. Having gone through this myself, no one can really prepare you for what comes after surgery.
Awareness is Key
Awareness and education are needed to decrease the delay in diagnosis for endometriosis sufferers. Women and girls deserve to understand and be informed. Some pain with periods is normal but pain that stops you from living your normal life is not. The normalization of pain needs to stop.
But There is Hope
More people are speaking up and sharing their stories in the hopes that the next generation will know more and be treated better. Although there is no cure, there are some treatments which can help ease symptoms.
For me, after I dropped my job and rested up, I started my own business. I also increased my university workload last semester and have been diligently working on my mental health after reading Martin Seligman's book Flourish. Regardless of all the bad that can come my way, there is hope.
This piece is not designed attention-seeking or written for pity but for others who have been medically gaslighted and endured surgery, endometriosis related or not, to feel comfort in knowing they’re not alone and to raise awareness. Time heals all wounds — physical or not.
