Too long to hear the ‘e word’

March 21, 2019 3:56pm
For years, Lindsay suffered with endometriosis in silence. Now she’s encouraging others to take charge of their own health.

Like many people living with endometriosis, Lindsay suffered for years without answers. Endless ER visits, exams, ultrasounds, and CT scans only resulted in the phrase ‘you just have bad periods’. So from age 13 to 34 – that’s what she believed.

She masked the pain with a variety of hormonal birth controls. The small relief those medications offered was negated by crippling migraines and constant spotting. As the years went on she suffered one miscarriage but was fortunate to have two happy, healthy children.

Gradually, the pain took over her life. She lived with a heating pad pressed against her, stayed in bed, and popped Advil until her stomach hurt. She isolated herself. And at times felt she couldn’t go on any longer.

During a visit to a nurse practitioner for an unrelated matter the nurse took one look at Lindsay, who was in visible pain, and asked if she was okay. After giving a brief history of her problems, the nurse asked, “have you heard of endometriosis?” Just like that, Lindsay had hope.

After years of being dismissed, Lindsay felt vindicated. She was determined to get answers. She scoured the web, joined support groups and subscribed to numerous social media pages. Armed with knowledge and full of hope, Lindsay walked into her first appointment with a gynecologist.

She was soon told a hysterectomy would solve all her problems. From all her research, Lindsay knew endometriosis could grow outside the uterus so when she asked what would be done if this happened, her gynecologist replied “we’d put you on hormone therapy.” Reluctantly, Lindsay agreed to the hysterectomy and was put on the waitlist. But it didn’t feel right.

She decided to seek a second opinion from BC Women’s Hospital. This meant she would have to wait another six months for an appointment, cancel the scheduled hysterectomy, and then wait to be scheduled for a new surgery. Lindsay explained, “it was an agonizing decision at a time when I sincerely considered whether ending my life would be preferable to continuing in my current state.”

Months later, at her first appointment with Dr. Christina Williams at the Centre for Pelvic Pain & Endometriosis at BC Women’s Hospital, it was clear she made the right decision. “I can’t explain the complete sense of relief I felt after my first appointment with Dr. Williams. I knew I was in good hands and would receive the best care available.”

Fast forward to the moment Lindsay woke up after surgery. “I instantly felt better than I had in years.”

Dr. Williams found pigmented and atypical endometriosis along the sidewalls of Lindsay’s pelvic cavity, on her uterosacral ligament, and both sides of her cul de sac. Given the location of Lindsay’s endometriosis existing outside of her uterus and its atypical colouring, it is unlikely her former gynecologist would have recognized the endometriosis… let alone remove it.

Today, nearly 10 months after surgery Lindsay has her life back. “The absence of pain has made room for joy again.”

"It took too long for me to hear the ‘e word’. But I’m grateful I finally did.” Her advice for others considering how to proceed with their care,

listen to your gut, do your research, ask the hard questions and push for the best care possible – you deserve it.”

Read more about BC Women’s Centre for Pelvic Pain & Endometriosis.