Linda Reed-Enever is one of those energetic, effervescent people who barely misses a beat. She’s fun, lively, a successful businesswoman and effortlessly humorous, but she has also spent all her adult life grappling with endometriosis – a condition that affects one in 10 Australian women.
Linda is helping Dear Molly offer an insight into the condition, because what’s often written off as “women’s issues” has seen Linda undergo 11 surgeries in 20 years, nearly cost her a chance at motherhood, and at aged 19 came within hours of costing Linda her life.
This is her story, as told to Cass Charlesworth…
It was 20 years to the day between Linda’s first diagnosis of endometriosis and when she had a hysterectomy in a bid to manage the complications.
She remembers the day she learned the reason behind her heavy period and excruciating monthly pain with vivid clarity. Linda had initially presented to a local hospital in pain, but when investigations revealed nothing, she was told to go home.
Hours later a friend, who just happened to be a medical student, became concerned at her deteriorating colour.
“I was literally turning yellow,” Linda explains. “So, they took me back to hospital. At that stage doctors were looking for appendicitis, so they did a scan and took bloods which revealed I had peritonitis. Surgery became the next option and they told me they were looking for either appendicitis or a burst ovarian cyst.”
Linda woke up to find her next of kin had been called. The peritonitis had been so severe she had been hours from death, and what the doctors had discovered was a burst cyst caused by acute endometriosis.
That was surgery number one.
Aged 19, Linda was told if she wanted a chance at having children, she would need to consider it soon. The surgery had revealed her ovaries and fallopian tubes were riddled with plaques and patches of the endometrial tissue.
“In retrospect, I’d had the symptoms for years. I’d been living with extreme period pain since I was 13, but everyone kept telling me ‘it’s part of being a woman’.
“The surgery revealed I was covered in it, but my response was I didn’t know any different. I also felt at 19 I was too young to even entertain the thought of being a mum.”
Ultimately, Linda’s first burst cyst and the peritonitis led to further complications. She developed gallstones, her appendix also became inflamed and had to be removed.
Meanwhile, she underwent her first surgery with a specialist to have the patches of endometrial tissue removed.
A few years later, Linda met the man who would become her husband, and her thoughts turned to having children.
“We always knew if we couldn’t have children we would adopt, but the first option we went for was IVF.
“The first transfer didn’t take and that felt like a miscarriage. The second transfer didn’t defrost, which I took as a blessing at the time. I’d started bleeding mid cycle again, which didn’t seem right, so I knew it was time to get a second opinion.
“Still, we went through another four cycles before we checked the endometriosis, and yes it was back. So I had surgery to clear it out again and after that, it only took a further two cycles before I fell pregnant.”
Her advice to women with endometriosis considering pregnancy? Investigate having surgery to clear the tissue before you embark on the fertility journey.
Many women experience few issues with endometriosis during pregnancy, but for Linda, that wasn’t the case.
At 10 weeks she had a lower placental bleed while travelling to Melbourne, which doctors misdiagnosed as a failed pregnancy. A routine scan when she returned home revealed a tiny but beautiful heartbeat.
Her obstetrician advised this might just be the way her pregnancy journey would pan out, and at any time she felt worried, she could pop in for a “sanity scan”.
“I did take him up on that once or twice,” Linda laughs.
Linda’s daughter was born in 2009 after a three-year journey through IVF. She’s funny, vibrant and a social butterfly like her mum, and by the time she arrived Linda’s endometriosis was well and truly back.
“At that stage, they told me I’d have to make a decision about what to do next.”
Since her daughter’s arrival, Linda has undergone several surgeries to remove endometrial tissue. There have also been further burst ovarian cysts, and the time frame between the build-up of tissue began to shorten while the surgeries became longer.
“At this stage, I’d come to terms with not having another child and knew I just wanted my health back. I was advised to have a hysterectomy and honestly, I felt relief.”
Eighteen months ago Linda underwent her 11th surgery, this time to remove her uterus, and one ovary. The second ovary was left to ensure she doesn’t enter early menopause.
She says in the past 12 months, she’s managed to do more than she had for a long time prior. Although the minor ups and downs are still there, she has much more energy, less fatigue, and is no longer relegated to days spent curled up on the couch in acute pain.
Eventually, her second ovary will also be removed, so there’s at least one more surgery still to go, but in the meantime, she’s keen to see endometriosis discussed more openly.
“It’s both mentally and physically tough. For too long I was told the pain was just part of being a woman, so I simply pushed through.
“My advice to others is you know your body, you know the level of pain and you can feel it when it’s not right. Stand up and start talking to your doctor, seek a second opinion, and find a GP who’s willing to listen to your concerns.
“Many women experience different symptoms. Mine included intense fatigue, bruising from low iron, pain, heavy periods and weight gain each cycle.
“But I received my best treatment when I became my own advocate when I stood up for myself and said this isn’t right. I’m stubborn so I wasn’t going to let it win, but it’s tough enough to fight without people telling you it’s normal.
“Endometriosis is not normal, it is a disease, and it is not just another women’s issue.”
Image via Duvet Days
Linda Reed-Enever is a Publicist and Marketing Consultant who lives and breathes publicity with a passion for connecting everything; from people to ideas. Linda is the Principal Director at ThoughtSpot PR and Founder of Media Connections and Business Business Business.