Emma was diagnosed with endometriosis when she was 20 years old. It took seven years of painful endometriosis symptoms to get her to this diagnosis.
For those seven years, Emma had to convince herself that the pain was all in her head. That she was crazy. That she was just being dramatic. Now she shares her story to bring awareness to endometriosis and to support other women going through a similar struggle.
Symptoms got worse and worse
As Emma shares on Love What Matters, she was a typical crazy kid growing up – loved animals, babies and making people laugh. When she got her first period at age 13, everything changed.
For Emma, the symptoms included intense pain and cramping, but also lower back pain, fatigue, bloating, constipation and nausea – things she was told were ‘normal’ and ‘part of being a girl’.
“Each month, my symptoms got worse and worse,” Emma shared.
When I got my period, I found myself living in the nurse’s office at school. My teachers would even punish me for ‘skipping’ class. At this time, I noticed all of my friends seemed to get through their periods effortlessly. It was just an annoyance for them. They could use a tampon and would be set for the day. Let’s just say, this wasn’t the case for me.”
For two years she suffered behind closed doors before speaking to a doctor about it. He put her on birth control with a promise to fix it. She was placed on 10 different birth controls over the next three years, none of which did much to help with the pain.
My doctors told me I ‘just had a bad period’ and ‘it’s a part of being a girl’
For seven years, this pain took over my life. For seven years, I felt like I was going crazy. My pain was brushed off by doctors, specialists, my friends, and even myself.
I completely lost touch with myself and my body. I truly believed the debilitating pain I was experiencing was all in my head.
I felt alone and misunderstood. Why doesn’t anyone believe me? What was wrong with me? Why were all of my test results coming back telling me I was fine? Why didn’t any of my friends have these issues? Was I just different? Everybody I had previously sought help from solidified the very thought nothing was wrong with me.”
After graduation, it got worse. Emma was wiped out during her period and in pain the majority of the time. She lost a lot of weight, was severely constipated and was unable to eat or drink without pain.
I always looked six months pregnant. My anxiety and depression spiked, and my period pain seemed to never subside. I was missing days of work, becoming unreliable, and I just wasn’t myself. Everything seemed to be going downhill, and fast.
It felt like a sharp blade slicing through my insides. My joints were sore and achy. My back felt like it was burning and internally bleeding. Everything hurt.”
Emma read an article about endometriosis online and presented the possibility to her doctor when she was 17.
She had already been through MRIs, blood tests, ultrasounds, and x-rays. She was also diagnosed with IBS and severe constipation, but none of the medications helped. Everything looked normal. But it wasn’t.
‘All in my head’
In addition to the chronic pain, Emma also struggled mentally. She lost two of her best friends, she was getting in trouble at work for missing shifts, and she began to lose hope in ever figuring out what was happening to her.
After countless unfortunate and unhelpful interactions with my health providers, I sort of lost hope in the doctors. I fell into the mindset that it was all in my head. My pain wasn’t real. I was just being overly dramatic — my nickname was drama queen, after all.”
Finally, a diagnosis
Emma made one more call for help – to an OBGYN who knew straight away what she was experiencing. Endometriosis symptoms.
“I told him I didn’t have it. I explained how I was tested by my primary care physician and it all came back normal. He then informed me the only way to diagnose endometriosis was to have laparoscopic surgery.”
The surgery confirmed that Emma did have endometriosis – a diagnosis that validated all those years in pain.
Endometriosis is a chronic condition where the lining of the uterus grows elsewhere in the body. Endometriosis symptoms include extreme pain, intense cramps, fatigue, bloating, constipation and more. Two types of problems can occur when endometriosis is present – pain and infertility.
It’s something that affects 1 in 9 women, More than 830,000 (or just over 11%) of Australian women suffer from endometriosis at some point in their life. More often than not, the disease starts in the teenage years.
‘I never want anyone to have to suffer’
For Emma, being diagnosed wasn’t the end of the journey. Even after surgery, Emma experienced even more pain, weight gain, and more surgeries.
The average time it takes for a woman to be diagnosed with endometriosis is seven years [12 in Australia].
Seven years of misdiagnoses, of heartache, of hopelessness. I simply didn’t understand why anybody didn’t know what it was when millions of women around the world struggled.
I want to clarify now having painful periods is NOT normal and it is time we stop normalizing such pain—your pain is real and your pain is valid, sisters.”
Endometriosis doesn’t just go away. Emma still experiences symptoms and attends pelvic floor physical therapy which has helped her immensely. Now she advocates for awareness.
“I never want anybody to have to struggle the way many of us endo warriors have. I want to be the person who actually believes their pain and guides them toward a diagnosis. The one who gives them hope. I want to be the one who sparks up conversation about uncomfortable things and spread as much awareness as possible.”
You can follow Emma at @endometriosisem
