22-year-old P.E.I. woman having hysterectomy in hopes of ending endometriosis pain

Rebecca McCourt says she's been in pain nearly every day, since she was 12 years old. 

When she was 14, McCourt had surgery for what her family and her doctors suspected was appendicitis. 

Doctors removed her appendix, but the surgery did not end her pain and not long after, in 2011, she was diagnosed with endometriosis. 

"At this point, I'm ready to move on with my life," McCourt says. 

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.

I feel like I was really … robbed of my teen and young adult years.— Rebecca McCourt

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.

Since 2011, McCourt said she has undergone eight laparoscopy procedures, during which doctors have burned off the painful, errant tissue from her pelvic area to offer her temporary relief. However, the tissue, McCourt said, always seems to come back. 

To recover from these procedures, McCourt has often been forced to take time off from school. 

That's in addition to about a week per month that she's been forced to take off to cope with pain and fatigue. 

"I feel like I was really … robbed of my teen and young adult years," she said. 

Hysterectomy 

In addition to the growth of endometrial tissue in her pelvic area, McCourt said, another symptom is ovarian cysts.

Each year, McCourt said she can expect between three and four cyst ruptures. These are sharp, painful episodes where cysts, which present on one or both ovaries, rupture and often result in hospital visits and pain medication. 

Now, McCourt and her doctors are taking the next step in trying to find her relief. The 22-year-old is scheduled to have a hysterectomy on Sept. 4. McCourt is also having both her fallopian tubes and one ovary removed.

"A hysterectomy is the removal of the uterine body," Williams said.  

When a hysterectomy is considered for endometriosis pain the uterus and the endometriosis found outside the uterus should be removed together according to SOGC recommendations, she said. 

Hysterectomies as a stand-alone treatment are not guaranteed to relieve patients of pain caused by endometriosis, according to Williams. 

McCourt said the decision to have a hysterectomy was made over a long time, with years of ongoing discussion between her and her doctor.

I don't think the general population has even a general understanding of the disease and what it does.— Rebecca McCourt

During that time, McCourt also went through several hormone treatments including oral contraceptives and hormone injections. 

When it comes to treating endometriosis, Williams said, hysterectomies are not the first line of treatment. 

"Most gynecologists agree that hormones should be used first because they're reversible. And that's the recommendation from the SOGC." 

McCourt wants people to know her story, to understand how difficult it's been. 

"It's important to have these conversations because I don't think the general population has even a general understanding of the disease and what it does," McCourt said. 

In the future, she said she'd like to see increased research, education, and awareness of endometriosis. 

No cure 

Currently, there is no cure for endometriosis and it is not considered to be a life-threatening condition, said Philippa Bridge-Cook, of the Endometriosis Network of Canada. 

The organization has been providing support and education for people living with endometriosis across the country since 2012.

"There was a real need for it because nobody was doing that sort of thing in Canada," she said. 

About one in 10 females has endometriosis, but it can also occur in the transgender community and in extremely rare cases, even men, Bridge-Cook and Williams agreed. 

A lot of women, at first, don't realize that what they're experiencing is abnormal— Philippa Bridge-Cook

Most women with endometriosis can expect to see several doctors over many years before a diagnosis is made, Bridge-Cook said. 

"It's not that there's a complete lack of research in Canada or around the world, but if you look at the cost of endometriosis in terms of health-care costs, lost work productivity and all of the costs all together it's comparable to other chronic diseases," Bridge-Cook said.

'Women's pain being dismissed'

"Pain with periods is a major symptom of endometriosis. A lot of women don't know what pain is normal for a period … and there isn't a lot of education," she said. 

"There's a lot of studies about women's pain being dismissed."

I am happy that I'm getting it done. But at the same time it's almost like a grieving process.— Rebecca McCourt

Williams said she's noticed a positive shift in research around the disease.

"So I believe there is room for improvement. But at least in the last 10 years, we've seen a definite increase in interest in learning where the pain is coming from," Williams said. 

'Urgent for me'

"It's not [considered] urgent. It feels like it's urgent for me but it's not seen that way," McCourt said. 

While McCourt is looking forward to the prospect of pain relief with her upcoming surgery, she said the decision has been "bittersweet."

By undergoing the procedure McCourt will not be able to have her own biological children.

"I am happy that I'm getting it done. But at the same time it's almost like a grieving process," she said. "But it's worth it, if it's going to help."

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