Doctors told me that my pain was normal. Four months later I was diagnosed with stage three endometriosis

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I developed at a young age, younger than all of my friends. My period started soon after I turned ten and I had double d’s by the time that I was eleven.

All I’ve ever known is intense back pain, indescribable abdominal pain and a heavy blood flow when it comes to periods. My GP once asked me to describe my period pain and I felt too dramatic to describe the deep blunt force, almost like a knife, twisting in my abdomen.

Every girl has a period and no one had described it as a comfortable experience so who was I to assume that I had it worse than anyone else?

It should have raised alarm bells when the heavy blood loss led to anaemia and I was being prescribed a drug that was given to women in childbirth.

Trust me, any way to regulate a period, I tried it.

Friends would wonder why I couldn’t take part in everyday activities. I would make excuses, too embarrassed and ashamed that I wasn’t coping with a normal womanly function, in comparison to everyone else. I was struggling to be a teenage girl.

When I was eighteen, I was diagnosed with PCOS (Polycystic Ovary Syndrome.) What I assumed was a relieving diagnosis was only the start of a long troubling road.

Throughout the years, I began to experience uncomfortable ovulation pain. My GP said, “this is normal, live your life.” Little did I know that this overwhelming pain that was considered normality was my body crying for help, while the endometriosis was spreading.

In August 2020, I suddenly developed severe pain in my abdomen. I was transferred hospitals by ambulance after detection of a cyst and I was told that it would be removed with surgery. I was assured that this was the cause of my pain but I felt otherwise. I was later discharged from the hospital as doctors disagreed that surgery would be the best form of procedure.

Months later, I was still undiagnosed and the pain was only increasing. I felt helpless after the many more visits to the hospital and endless hours in A&E. My body was poked, prodded and scanned by a variety of professionals, whilst always lacking a diagnosis.

The cyst had dissolved but with each day the pain only grew stronger, even to the extent that I could barely walk or stand. I couldn’t drive, I couldn’t work, and I knew that I was sinking into the dark hole that is depression. Yet again, doctors and nurses were continuing to send me home with no diagnosis, telling me, “we can’t see anything wrong with you.”

One hospital nurse even suggested that it was passing gas.

It was worse than any pain I had ever experienced. My abdomen was aching with severe pain, radiating down my legs and eventually suffocating my entire body.

I was submerged with pain and I was simply left helpless.

As I assumed all hope was lost, a saving grace appeared.

I was finally able to meet with a gynaecologist after months of waiting. It’s when the word was first brought up to me, the one last resort of what my pain could be, “endometriosis.”

I was in complete denial. One of the biggest signs of endometriosis is heavy periods. “But I’ve always had heavy periods,” I thought. I almost refused to believe that this was the cause of my sudden and severe pain.

The worst part about an endometriosis diagnose is that no scan, no urine sample, no blood test, nothing, is able to confirm a diagnosis… from the outside. Therefore, I was booked in for a laparoscopy and procedure of surgery would be decided depending on what the surgeon saw.

Anxiety crept up on me, overwhelming me at times, leading up to the surgery date. My train of thought constantly gravitated to, “what if they find nothing?”

For months, I had waited for an answer, wondering if I would ever be cured of the intense pain so ultimately, I was terrified. I knew there was nowhere I could go from here.

I still reminisce waking up from surgery, having the surgeon tell me that he removed widespread stage three endometriosis from my bladder, bowel, uterus, vagina, ovaries and fallopian tubes. I cried tears of joy for a final diagnosis to the months of severe pain.

Despite the unimaginable relief, there were concerns that lay ahead due to the severity of the endometriosis.

Not only will the endometriosis come back but more operations lay ahead. Fortunately though, now that the diagnosis is confirmed, I have the ability to keep track on it more efficiently. But hearing how this will majorly affect my fertility was one of the most difficult things to comprehend, especially at the age of twenty-one.

I am a victim of the Gender Health Gap. As a young woman who is diagnosed with PCOS and endometriosis, I would tell you that it’s vital to speak out. This illness is not spoken about enough so the more we spread awareness, the less women will suffer.

My advise is listen to your body. If you are the only one who can feel the pain then ultimately, you know right from wrong.

Be persistent. Don’t take no for an answer. Don’t live in pain.


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