*Not scientifically proven.
By Alexandra Ellen
These words are avoided. They’re not ‘kosher.’ Slipping them into a conversation causes tension, but if we stay silent, society remains ignorant.
For me, these ‘uncomfortable’ words are normal conversation starters. Conversations that cost hundreds of dollars and occur during painful, exposing, and demoralising ‘internal examinations’ that make a pap test/cervical smear feel like a stroll in the park. Conversations with a plethora of in-depth questions about the most intimate details of my life – sex, bowel movements, urination, contraception, pregnancy, PMS, weight, fractured relationships and mental illness… Oh, did I mention they’re with complete strangers?
I have found that conversations about religion, Jesus and politics are easier than talking about a disease that affects the reproductive organs of 1 in 10 females worldwide.
Endometriosis Stage 1: Faking it
Courtesy of PCOS, acne sprouted when I was 11 and once puberty kicked in, my face resembled a pepperoni pizza. At 15 I started taking Roaccutane – a potent pharmaceutical to treat cystic acne. Falling pregnant while taking Roaccutane guarantees a deformed foetus, so the dermatologist refused to prescribe it unless I also took the pill (which never made sense; I wasn’t sexually active).
Within a few months, the chronic abdominal pain started. The result: x-rays, ultrasounds, specialists, painkillers, frequent school absences and a colonoscopy. Diagnosis: psycho-sematic pain. It was all in my head. Treatment: psychology and cease taking Roaccutane. I was a perfectionist falling behind at school and an extrovert isolated from most of my peers. Rumour was that I was “faking it” and it wasn’t long before I started to spiral into a dark, damp hole that I couldn’t escape. I was in pain all the time and there was no physiological cause. I never finished the course of Roaccutane and I stopped taking the pill. A few months later the pain resolved, but ovulation and menstruation had become hell. No one suspected a gynaecological condition or that ‘the pill’ was the culprit.
Endometriosis Stage 2: Diagnostic Conundrum
Fast-forward 5 years: the pain returned less than three months after my wedding (and four months of hormonal contraception). I took over three months sick leave and deferred my third semester at college. Again: scans, ultrasounds, blood tests, specialists, painkillers, weight gain, isolation. Again: no answers. I was a ‘diagnostic conundrum.’
Endometriosis Stage 3: Diagnosis
An ovarian cyst eventually showed up on an ultrasound, so I booked in for a cystectomy. After six months on the surgical waiting list the cyst resolved itself. Instead, 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 womb. Turns out I also have PCOS. Unfortunately, treatment did not stop the pain, but I had a name! Oh, the relief and closure.
A diagnosis meant I wasn’t crazy! There were legitimate, medical reasons for the constant pain, chronic fatigue, cramping, nausea and bloating. I finally understood why I had persistent acne, headaches, heavy periods, skin tags, difficulty losing weight, erratic mood swings, a dodgy immune system and pain during urination, bowel movements and sex.
Endometriosis Stage 4: Grief
What followed was a three-year process of watching all I deeply valued in this world fall away. I lost control of body; my nervous system was overworked and my mind was dulled with painkillers. The depression worsened and my financial security vanished. I had to leave my amazing job and eventually my marriage completely dissolved. I left the life I had built in the city to return to my hometown and share a bed with my mum.
I ceased being an independent adult. I was 24, divorced, obese, unemployed, suicidal, incapable of doing housework, eating frozen meals, dropping and breaking my valuables, constantly losing stuff and sharing a bedroom with my mother. I was like a dependent child, living in a dark, damp pit with no exit plan. I had such regular appointment, my GP became like a best friend.
By the world’s standards I was a complete failure, Darwinism says I should have died years ago. I spent five years grieving the death of my dreams, goals and hopes for my life because there is no cure for endometriosis.
I never stopped fighting for my health. After ten years of symptoms and five and a half years of non-stop pain, I eventually reduced the severity of my symptoms. It took
- permission to grieve,
- three surgeries,
- trialling Visanne,
- thousands of dollars in (conventional and alternative) specialist fee’s,
- improving my mental health,
- forming emotional and medical support teams,
- participating in the endometriosis sisterhood, including the documentary “Endo & Us,”
- engaging with endometriosis creatively,
- 100% dedication to an intensive chronic pain program,
- faith, hope and acceptance
to finally be ‘okay.’
I still feel uncomfortable, crampy, bloated and nauseous. I am still tired and in pain 99% of the time. But my flare-ups are less intense and frequent because I no longer react emotionally to the symptoms.
Acceptance led to physical, spiritual and emotional healing. I can now do basic housework, cook, socialise and exercise. I have a part-time job, studying again, lost weight and travelled.
It saddens me that ten years for a diagnosis and recovery is common and it will only change by ‘ending the silence.’ So, for the sake of 178 million women around the world, I will fight, advocate and educate. I will continue to engage in awkward conversations on behalf of other adolescent girls who are being told the same thing – there is nothing wrong with them. It’s all in their head.
But this is me, Alex. I have endometriosis. Some was removed from my rectum and cervix. My uterus aches, my ovaries have cysts, my cervix cramps, urinating hurts and my period sucks.
Now your turn – go on! Say it, just once. I dare you. ‘yoo-ter-uhs’ … see, it’s not that scary.
If Alex’s story has inspired, you please leave comment and share the blog with other people. If you would like to share your story, please contact me at firstname.lastname@example.org to discuss the possibility of you being a guest blogger.