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Woman with ‘debilitating’ chronic pain waits decades for endometriosis diagnosis | Globalnews.ca

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After battling debilitating pain her entire life, Tara DeMerchant is grateful to finally have answers, but angry it took nearly 30 years to get help.

The 44-year-old from Bala, Ont., an hour north of Barrie, was recently diagnosed with endometriosis.

DeMerchant says she has struggled with pain since she was 14, self-medicating with cannabis to deal with pain that only got worse over time.

“It’s debilitating. There are days when I can’t get out of bed. I vomited for weeks and I wouldn’t wish that on anyone,” she says.

For years, she says doctors dismissed her pain as just her period, even though in some cases it lasted the entire month.

“About nine years ago, the pain became daily. I couldn’t get any help. I have been refused treatment at least twice. I had a doctor put his finger in my face and tell me I was doing this to myself and no doctor was going to help me, and that was the only thing he was right about because ‘no doctor helped me after that. DeMerchant remembers.

She says in some cases doctors tried to attribute her symptoms to cannabis use.

“At least four doctors told me that since marijuana was legalized, they had seen an increase in this type of illness, and I tried to tell them it had nothing to do with me.”

The Endometriosis Network Canada reports that the average time to diagnose endometriosis in Canada is five and a half years, but it can be as long as 20 years in some cases. In DeMerchant’s case, she says it took almost 30 years.

Endometriosis is a chronic, debilitating disease that occurs when tissue similar to the lining of the uterus abnormally implants outside the uterus to form lesions, cysts, nodules and other growths.

This disease can cause chronic pain and internal scarring in sufferers, as well as infertility and other medical complications.

DeMerchant says she began demanding answers and consulted several doctors before the one in Bracebridge finally took her concerns more seriously about a year ago.

She says the doctor wrote a letter saying endometriosis needed to be investigated by a specialist as a possible cause of her pain.

She then went to the Royal Victoria Regional Health Center in Barrie, where she says she was able to consult a gynecologist at the end of 2023 and then an endometriosis specialist.

DeMerchant recently received the official diagnosis but says it is being considered at an advanced stage due to the long wait.

“I find out about it at least in the third or fourth stage, because that’s when endometriosis develops. So this is either the final phase or the beginning of deep infiltrating endometriosis,” she says.

“I definitely wouldn’t be at this point if I was taken seriously to begin with.”

While DeMerchant is still waiting for a treatment plan, she says because of the long wait, she faces a possible hysterectomy and invasive procedures and biopsies to treat the disease.

Endometriosis statistics.

Infographic by Fasai Sivieng

The Endometriosis Network estimates that approximately one in 10 girls and women, as well as countless numbers of transgender, non-binary and gender diverse people, will develop endometriosis in their lifetime.

The average person sees between five and seven doctors before being diagnosed with endometriosis.

“We hear all the time in the community that people go to their GP and then they end up feeling even more isolated, invalidated, being told it’s completely normal what they’re going through just to take a little bit of Advil, and it’s in their head,” says Katie Luciani, executive director of the Endometriosis Network Canada. “These are such common stories within the community.”

Luciani says that in general, menstrual health and periods are considered a taboo subject and more needs to be done to educate people to combat the stigma associated with it.

DeMerchant hopes speaking out will create more awareness.

“I think it’s disgusting. There is no reason for anyone to suffer like this. If they have severe cramps, heavy bleeding, and are vomiting, something is wrong. This is not a normal period. This must be taken seriously.


Click to play the video: “Understanding Endometriosis”


Understanding endometriosis




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