Ignored, misdiagnosed and denied surgery: My endometriosis journey

Ignored, misdiagnosed and denied surgery: My endometriosis journey

Shyla Barry13:32, Feb 07 2019

One day, at the tender age of 13, I was in class when I was suddenly crippled by the most excruciating sharp pain in my stomach and left screaming and breathless.

At the time I had no experience with menstrual cramps and didn’t realise this was going to become one of my biggest battles in life. My body was waging a war against itself.

What followed was years of irregular periods that became more frequent, longer and heavier every month. I remember thinking it was a normal part of being a women and I needed to harden up and deal with it like everyone else. But I couldn’t ignore the severity and frequency of the pain I was experiencing deep inside my pelvis, which felt like a red hot iron rod prodding inside me.

The pain fluctuated between sharp burning and hot aching for more days of the month than non-pain days and by the time I was 21 years old, I had visited numerous GPs. During that time I had undertaken full-time study and my symptoms progressed to the point where I was fainting in class.

I was bleeding for three weeks of the month and felt completely isolated as several doctors kept putting my pain down to dysmenorrhoea (painful periods). I couldn’t help but feel completely and utterly alone as my pleas for help from medical professionals fell on deaf ears.

In 2012, things finally came to a head. I was 23 years old and almost completely debilitated by what was being referred to as ‘pelvic pain’. It was suggested I had Irritable Bowel Syndrome, however, that diagnosis failed to account for why I was experiencing periods for most of the month or why intercourse was painful.

I had stopped having any form of sexual relations; the mere thought of the pain petrified me. My last sexual encounter resulted in extreme pain and muscle spasms that rendered me bed-bound for two weeks.

Not long after this I was admitted to Middlemore Hospital for the first of four emergency department visits in a month.  My GP sent a referral for a laparoscopy but was informed I didn’t meet the criteria to have the procedure. I was devastated.

I already had an ultrasound that picked up a cyst on my right kidney but no endometriosis. The hospital continued to tell me to return to the ED if my pain worsened, so I had to kept returning again and again only to be sent home in agony every time without a clue as to why this was happening.

Luckily, my GP specialised in colorectal diseases and advocated for me by calling in a favour. I had my first laparoscopic operation and was excited at the prospect of a diagnosis, but also fearful about what it would mean for me.

Still, nothing could be worse than living on pain killers, not to mention the immeasurable emotional suffering. The doctors couldn’t remove the endometriosis as it was far more advanced than what they originally thought and I was diagnosed with stage four (deeply infiltrative) endometriosis that was deeply embedded into my bowel, recto-uterine pouch  and the utero sacral ligament.

I finally had a diagnosis and I was so relieved, but what was to come next wasn’t so much of a relief.

After my surgery I was informed I needed another operation to remove the endo on my bowel. I was told it was a very high-risk operation with the possibility I would require a colostomy bag for at least three months . As a young, full-time student I was terrified but the pain was unbearable and the effect it had on my mental health was immense so I went ahead with the operation. It was successful but I was back at the hospital within a week with blood clots in my stomach and a ruptured cyst and infection on my right ovary.

I have since been advised to have children early on, consider having a hysterectomy, or continue to have operations for this terrible disease that continues to wage war on my body. Now, I am much more focused on reclaiming my life by accepting my personal limits, practicing self-care, and minimising stress as much as possible. I’ve also become more aware that endometriosis is an entire body condition and have continued to advocate for building awareness around the disease.

For those of us with endometriosis, our bodies are defying us in ways that sometimes cannot be explained. It’s important for people to understand that a woman with endometriosis is not simply more prone to being sick or suffering from ‘bad periods’, she’s bleeding into areas of her body each month where there is no outlet, and as a result, her body is responding by fighting itself to try and contain this foreign tissue.

We are fighting battles many don’t see while facing stereotyping and judgement. Many of us don’t feel as though we can show how deeply the condition affects us, so there’s one thing others should know. Our brave appearance doesn’t mean we’re not in pain, we do it because of the judgement and stigma from surrounding chronic pain. Minimising the appearance of the pain is much worse than showing how much it actually affects us.

This is my story but my battle is not won. I am in pain everyday, however, I will face you all tomorrow with a smile and I will fight the chronic pain battle again. It will not beat me.