“Other than my family, the person I spent the most time with was my GP.”

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If you’re suffering from Endometriosis or experiencing symptoms, always seek medical advice from your doctor for diagnosis and treatment options.

Uterus. There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis. Awkward.

Use of the above words are often avoided. Slipping them into a conversation causes tension and awkwardness. I do not intend to be vulgar. I do not want to be rude. But these words simply refer to elements of biology and anatomy.

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Yet, we stay silent and others remain ignorant. Silence is (usually) easier than talking about a disease that affects 10 per cent of females worldwide. If I don’t help end the silence, I will never see an end or cure.

These uncomfortable words have all been part of many conversations I’ve had; conversations that cost me hundreds of dollars. Conversations that occur during painful, vulnerable, demoralising, awkward and uncomfortable internal examinations (that make a pap-smear like a walk in the park).

Alexandra Ellen. Image supplied.

Next, a plethora of in-depth questions about the most intimate details of my life – sex, bowel movements, stools, contraception, pregnancy, urination, PMS, trauma, body weight, fractured relationships and a mood disorder... with complete strangers. Repeat, over and over again. This process started 10 years ago, and I've now had daily pain for five years and two months.

I first got acne when I was 11 years old, courtesy of PCOS, then as puberty kicked in, my face looked like a pepperoni pizza. By the time I was 15, I had started taking Roaccutane – a potent pharmaceutical to treat cystic acne. If a female falls pregnant while taking it, guaranteed the child would be deformed. So the dermatologist refused to prescribe it without putting me on the pill (which never made sense; I wasn't sexually active).

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These were my five stages of endo:

1. Faking it

Within a few months, the chronic abdominal pain started. The result: x-rays, ultrasounds, specialists, painkillers, frequent school absences, a colonoscopy and never finishing the course of Roaccutane. The diagnosis: psycho-semantic pain. It was all in my head. Prognosis: psychology. The word at school was that I was faking it – maybe it was so I could miss school or to get attention?

 

It didn't take long before I started to spiral into a dark, damp hole I couldn't escape. I was in pain all the time and there was no visible cause. I was a perfectionist falling behind in my schoolwork and an extrovert isolated from most of my peers. No one suspected that the pill was the culprit.

2. Diagnostic Conundrum

Fast-forward five years and the pain returned less than three weeks after my wedding and four months after starting hormonal contraception. Again; scans, ultrasounds, specialists, painkillers, dramatic weight gain, isolation, three months sick-leave and deferring my third semester at college. Again: no diagnosis. I was a diagnostic conundrum.'

3. Diagnosis

After an ovarian cyst eventually showed up on an ultrasound; I booked in for a cystectomy, but the cyst resolved itself. After six months on the waiting list, I had a diagnostic laparoscopy (keyhole surgery of the pelvis) where the gyno found endometriosis, a tissue similar to the lining of the uterus found outside the uterus.

"With no diagnosis, I was a diagnostic conundrum." (Image iStock)

Not long after that, a naturopath led me to a diagnosis of PCOS. Unfortunately, surgical removal of the endo and diagnosis did not stop the pain... However a name, a diagnosis, meant I wasn't crazy. There was a reason I was in constant pain that was compounded with chronic fatigue, cervical cramping, nausea, bloating and painful urination, bowel movements and sex. I now understood why I had persistent acne, headaches, heavy periods, skin tags, great difficulty losing weight, erratic mood swings and a dodgy immune system.

4. Grief

What followed was a three-year process of watching the things I deeply valued in this world fall away. I lost control of body; my mind was overworked with pain signals and dulled with painkillers. The depression worsened. I spent thousands of dollars on specialists and alternate therapies. I had to leave my amazing job and eventually my marriage completely dissolved. I left the life I had built - friends, career, family - to share a bed with my mum (who I adore).

I was 24, divorced, obese, unemployed, severely depressed, incapable of doing my laundry, living off frozen meals, dropping and breaking everything of monetary value, constantly losing items I used daily and I lived in the same bedroom as my mum.

"Silence is (usually) easier than talking about a disease that affects 10 per cent of females worldwide." (Image iStock)

Other than my family (who I was living with), the person I spent the most time with was my GP. By the worlds standards, I was a complete failure. I spent five years grieving the death of my dreams, goals, hopes and desires because there is no cure. I was living in a dark, damp pit and couldn't come up with an exit plan.

5. Acceptance and Healing

Through mourning the loss of life as I knew it, I was able to reduce most of my symptoms. After a third surgery, a new progesterone-based pill, managing my depression and an intensive chronic pain workshop through my local hospital, I was okay. I still feel uncomfortable. I am still in pain. I still cramp. I still bloat. I still want to vomit regularly. I am still tired 99% of the time. But I have stopped reacting emotionally and as a result, my flare-ups are less frequent, and my depression is under control.

Acceptance led to healing: physical, spiritual and emotional. The result: I can now do my laundry, I have a part-time job, I have friends, I can exercise, I've been able to lose weight and I've travelled. I've grown.

"Through acceptance, I've come to heal." (Image iStock)

It saddens me that this process has taken ten years and I still have a long way to go. It saddens me that my experience is far too common in women. This will only change when Endo sisters speak up, so I don't care if I make you feel a bit uncomfortable.

For the sake of 178 million women around the world with Endo I will advocate and educate. On behalf of the 11-16 year old girls who are being told the same thing today: their symptoms aren't real. There is nothing wrong with them. It's all in their head.

So, here I am. My uterus hurts, my ovaries have cysts, my cervix cramps and my periods almost unbearable. Urinating is painful, but so is a full bladder. I've had a tennis ball size of endo removed from between my rectum and cervix. See, its not that horrible to read.

Your turn. Go on! Say it, ut-er-us. Just once. I dare you... see, it’s liberating!

 

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Mamamia's Endo Awareness Week, curated by Founder of EndoActive Syl Freedman, shines a light on a disease suffered by one in 10 Australian women. To read more from Endo Awareness Week, click here. If you'd like to find out more information on Endometriosis, Syl's story or Endo Active, visit endoactive.org.au and keep up to date on their Facebook page.

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