'It's still possible': 23-year-old P.E.I. woman reimagines life and motherhood after hysterectomy

For the first time in her life, Rebecca McCourt says she can sleep through the night free from fear of waking up in pain.

In September, the 23-year-old had her uterus, both fallopian tubes and one ovary removed to offer relief from a battle with endometriosis that spanned more than a decade. Before the hysterectomy, McCourt said she'd been in pain every day since around the age of 12.

"I'm feeling good, my general pain level has gone down a lot. There's still some bad days but for the most part I'm back to ... what I should be for someone my age." 

Endometriosis is a disease where endometrial tissue, which lines the uterus, is found in other parts of the body, said Dr. Christina Williams, with the B.C. Women's Centre for Pelvic Pain and Endometriosis. She specializes in pelvic ultrasounds and surgical management of gynecological conditions.

If the endometrial tissue is found outside of the uterus it's most commonly found within the pelvic area, but in some cases it has been found in other areas of the body, Williams said.

The symptoms can include severe pain with periods, chronic pelvic pain, pain during intercourse and pain with bowel movements — especially during periods, she said.

'A safe place that you can turn to'

While the surgery has made McCourt feel less "limited" by her body and her health, she said the recovery has also been somewhat of a "grieving process." 

"I didn't realize after the surgery and after, like, everything settled down how much of a toll it would take. I went through a period where I would forget that I'd got it done — and then I would remember," she said.

"There were times that I would get angry that I can't carry children or that it's a big process to have a biological kid … And then there are some people who say, 'You're never going to have kids', and I think that's what hurts most out of anything." 

While she doesn't struggle emotionally every day, especially as her pain has decreased, McCourt does turn to Facebook groups and online forums for peer support on the difficult days.  

Some online peer support groups have thousands of women who also suffer from endometriosis, or who have had to confront the losses and challenges that come with hysterectomies — including the daunting task of imagining a future with children.

There were times that I would get angry that I can't carry children or that it's a big process to have a biological kid.— Rebecca McCourt

"Knowing people who went through the entire process and people are there to answer any questions that you may have post-op or if you're not having a good mental health day regarding it ... you can post so it's kind of a safe place that you can turn to."

She hopes to one day have a hand in creating an online peer support group for women living with endometriosis or similar conditions in Atlantic Canada.

"The thing with peer support, you're not only helping them, you're also helping yourself. It gives you an opportunity to get out what you're feeling as well as validate and kind of comfort other women who are going through the same types of things," she said.

"For a lot of people it's the place that they turn to when they need help most."

Weighing the options

Sometimes, McCourt browses the internet for doctors who specialize in-vitro fertilization. While she isn't ready to have children yet, she says just exploring her options gives her hope for the future.  

"Usually when I get the feelings of sadness or anger, that's how I talk myself down. I think about the pain level being decreased and the fact that it's still possible."

The process of having children through IVF is often a long and expensive road, said Dr. Faez Faruqi, the medical director at Elite IVF based in Toronto. Faruqi has been a physician since 1987 and a certified gynecologist since 1991, and he also specializes in endometriosis treatment.

He said the number one barrier facing patients on their IVF journey is finances, but he's never had a patient tell him it wasn't worth it in the end.

"Whatever voyage that they had to go through, it's worth it when they have their children."

McCourt has also considered adoption as an option she might explore one day.

In Canada, prospective parents can adopt domestically through either the public child welfare system or privately through licensed adoption agencies, or choose to adopt internationally through licensed adoption programs. 

Cathy Murphy, the executive director of the Adoption Council of Canada and an adoptive mother herself, says there's a key difference between the IVF route and that of adoption. 

"I personally see adoption as a service to the child or youth. We have to work in their best interest to ensure that they are placed with a family who is willing to go above and beyond to meet their needs," she said.

"One is focusing on really trying to give birth to a child. And another is focusing on the adoption of the child."

Next steps

At the age of 23, McCourt says thinking about her fertility and children is "kind of a lot" but ultimately necessary. 

"I have to think about these kinds of things when for other people, it's spontaneous. Mine has to take a lot of planning," she said.

A big fear was I was going to get halfway through my program or a little bit into a job and have the pain flare up and miss a good chunk.— Rebecca McCourt

Before the hysterectomy, McCourt said she felt "robbed of her teen and adult years" and unable to make plans, from small things like a day at the beach with friends to major milestones like finishing her nursing degree in pursuit of a career in pediatrics. 

"When I was having a lot of pain, a big fear was I was going to get halfway through my program or a little bit into a job and have the pain flare up and miss a good chunk," she said.

While the surgery isn't a cure for endometriosis, McCourt says she's grateful it's afforded her the luxury of looking to the future.

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