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Halifax doctor agrees endometriosis should be treated like cancer

New study published in Canadian medical journal says endometriosis patients should be taken more seriously

5 min read
caption Photo illustration of someone experiencing endometriosis pain
Lesli Tathum

Jennifer Sheppard never thought she would see herself having to have a hysterectomy at the age of 35.

She was 12 years old when she was told she might have endometriosis, a condition affecting one in 10 women. She was given the choice to start birth control but at the time her father said no.

“He just didn’t understand,” she said.

Over the years the speculation grew, and in 2008 she had her first surgery, an abdominal laparoscopy. This is a procedure that requires cutting small incisions in the abdomen and pelvis with a camera. The doctor actually diagnosed her with endometriosis, but never told her, until she found out from another doctor 10 years later. The diagnosis was mentioned in a footnote of the 2008 surgical report.

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“I had zero quality of life,” Sheppard recalled.

Ten years later, Sheppard lost her business due to the severity of her pain. She made an appointment with a local doctor in Cape Breton.

“I said to them ‘Either I am pregnant or I have a tumor,’” she said.

After an ultrasound, she was told for the first time she had endometriosis and cancer.

The World Endometriosis Society (WES) website describes it as “a condition in which tissue similar to the lining inside the uterus (called “the endometrium”), is found outside the uterus, where it induces a chronic inflammatory reaction that may result in scar tissue.”

WES states that symptoms of this condition include “painful periods, painful ovulation, pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, fatigue, and infertility.”

In 2018, Sheppard had surgery to remove an endometrioma, a cyst that forms on the ovary due to endometriosis. According to the WES, these cysts are not cancerous and can be found in 17 to 44 per cent of endometriosis patients and can create infertility.

Dr. Elizabeth Randle, a Halifax gynecologist, performed two of Sheppard’s surgeries. Randle said the wait time to meet with a gynecologist in Halifax is about nine months.

Sheppard thought all her problems were solved until she found herself in the operating room only six month later. She had hydrosalpinx, a blockage in the fallopian tube. She had the tube removed.

“I was a rapid regrower, so basically all of the adhesions and endometriosis that Dr. Randle removed was back,” she said.

She said she felt no relief.

‘I couldn’t do this anymore’

She said she and her husband tried to preserve her fertility as they had no children, but last month, she found herself back in the doctor’s office in Cape Breton.

“I told her I couldn’t do this anymore, so I had a radical hysterectomy at age 35,” she said.

Last month, an article was published in The Journal of Obstetricians and Gynaecologists of Canada (JOGC) by Dr. Mathew Leonardi, a gynecologist currently practicing in Australia. He said that endometriosis patients should experience the same care as a patient with gynecological cancer.

“We, as a medical system, are failing people with endometriosis,” Leonardi said in the article.

Leonardi said since endometriosis is non-cancerous, it has gone “under the radar” and has not required a gynecological specialist. He said the medical system should create an integrated multidisciplinary program to help those with endometriosis. The program would include: pain specialists, psychologists, physiotherapists and other specialities to help endometriosis patients.

He said “until endometriosis care is considered as high a priority as gynecological oncology management and this care predominantly takes place in centres of expertise…we will continue to fail our patients.”

Randle agrees. She said treating endometriosis patients as a more complex issue like cancer would work more effectively.

“I would 100 per cent agree that endometriosis patients will find better outcomes when treated with multidisciplinary expertise,” she said.

caption Dr. Mathew Leonardi is a gynecologist currently working in Australia.
Courtesy of Dr. Mathew Leonardi

Randle said endometriosis is a form of chronic pain and is not always seen as an urgent matter. She also said Nova Scotia currently does not have multidisciplinary programs for pelvic pain. There are only chronic pain clinics that cater to a variety of pain patients. This results in very long wait times.

Randle said she and Dr. Allana Munro, an anesthetist, received a Translating Research Into Care (TRIC) grant from the IWK Foundation to look into an integrated multidisciplinary program for chronic pelvic pain patients at the IWK Health Centre.

They hope to supply a program that will integrate gynecologic management and chronic pelvic pain from an anesthesia, physiotherapy and psychological standpoints.

In a Twitter message to The Signal regarding his recent journal article, Leonardi said “The response has been outstanding. There was such a demand to read the full article from people on social media and ResearchGate that JOGC made the article free access.”

He said there are two things that need to happen in order for places to make this change in management. First, there needs to be more training for the managing of endometriosis and other complex gynecological problems. Second, those without specific training and skill need to learn “it is better for the patient if the patient is referred to someone with expertise.”

“Regular residency training may be okay to manage some patients with endometriosis, but it is not enough for a lot of patients,” he said. “Our traditionally taught clinical and diagnostic tools are inadequate to aid gynecologists in determining whether a patient is actually an appropriate patient for them to treat.”

Sheppard said her hysterectomy was life changing, and for the first time in 23 years she has been without pain. She said she was aware of Leonardi’s article and had heard about it in passing.

“I think he is exactly right,” she said.

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About the author

Lesli Tathum

Lesli is from the Cayman Islands. She is in her fourth year of journalism at the University of King's College and is a member of the King's Women's...

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  1. K


    In Halifax my OBG told me my extreme back and abdominal pain 8/10, extreme pain with sex and OBG exams and swelling couldn't be endometriosis. Eventually I moved and we learned it was bad adenomyosis (the cousin to endometriosis). I kept asking my OBG if it would be endometriosis or hormone related and she laughed and eventually sent me to a surgeon who talked me out of the surgery. I'd gotten testosterone from another hormone doctor and they both said that taking hormones was dangerous and they didn't want to be part of it and the surgeon said that the fact that the testosterone was helping my pain meant it couldn't be endometriosis. I could do the surgery but there was a long wait list and people who really needed it. My new doctor in the US did a laproscopy and found extensive uterine damage to the point I can't have kids and said the damage is all around a nerve or something that links right to the place on the sacrum I was having all the back pain. He said the reason the hormone balancing from testosterone worked before was because testosterone can be used as a treatment for adenomyosis.
  2. E


    Endometriosis care in Canada is cruel. Women suffering through unimaginable wait times, getting sicker and sicker, and eventually unable to work or enjoy any quality of life. After I was diagnosed through laparoscopy and treated with ineffective ablation, I got a referral to see one of the best specialists in Ontario. The wait to see this doctor was way too long. My family doctor didn't understand the urgency of my situation and told me that I'm just depressed. I gave her a list of symptoms, and she didn't even review it, treating me like crazy person instead. I am one of the lucky ones who was at least able to get a referral, but when I finally did get in to see this "specialist," he was terrible! He refused surgery and offered lupron instead. He won't do surgery unless the endometriosis gets bad enough to show up on an ultrasound, even though we all know that endometriosis very rarely shows up on ultrasounds. I can't work anymore, and no one takes this seriously. I've since learned that this highly respected specialist is opposed to patient advocacy groups and receives payments from the makers of lupron. There's no law in Canada requiring that he disclose the amount of these payments. The best specialists in Canada are way behind the best specialists in other countries. 1 in 10 Canadian women are suffering through pain and/or infertility, all while being denied effective surgery and care. The drugs being offered have serious long term side effects, and many women aren't being informed about the consequences of these drugs. I guess it's just easier to prescribe an ineffective drug than get time in the OR with skilled surgeons. Thank you for that, Canada! Too many Canadian women are spending their life savings getting surgery in the States. Canada has so far to go.
  3. D


    I was diagnosed 10 years ago in my early 20's with endometriosis that had basically encased my kidney, ureter and bladder. I have also been ovulating twice a month and have ovarian cysts that rupture almost every time. I had been given hormone therapy, birth control and now an IUD, none of which worked. The IUD is the closest thing to working because it at least stops the bleeding but nothing else. I've been asking for a hysterectomy since my son was born, only to be told they cant because I may want more children, or I may split up from my husband and my new boyfriend may want children...the one thing I've learned about since I got diagnosed with endometriosis is that my reproductive system doesnt belong to me.
  4. w


    Hysterectomy is not a cure either, as Nancy ( comment above ) can tell you. I’m Curious if this patient also had fibroids, as that was my issue and caused me to have a partial hysterectomy 10 years ago. I was also pain-free after the surgery for quite a while but soon the pain returned curious if this patient also had fibroids, as that was my issue and caused me to have a partial hysterectomy 10 years ago. I was also pain-free after the surgery for quite a while but soon the pain returned and not one doctor I’ve seen believes it’s possible to still have endometriosis after the partial hysterectomy and medically induced menopause. It’s not just frustrating, I want to give up at times. 30 years of pain and infertility before the surgery and now as a 56 year old I’m back to where I was as a 2020. the multiple doctors I’ve seen in the last year all say the same thing- “ it’s probably just IBS, take ibuprofen and Tylenol” same thing I heard in the ‘80’s, 90’s and early 2000’s.
  5. S

    Samantha Evans

    My doctor and 2 pediatrician obstetrician gynecologists here in Alberta have denied me laparoscopy because I refuse to get a second surgery to make it "worth their time"(offers were hysterectomy or tubal ligation or other surgery that removes some of my reproductive organs). Yet I've been diagnosed with stage 4 particular bowel endometriosis. They also know I want to get pregnant but dismiss me when I say excising endometrial adhesions actually increases (albeit very little) a woman's fertility rate/chance to get pregnant slightly. Plus they have already determined that I am too old to have a their minds pregnancy should happen before 35, and better before 30. So yes let's just wait till my bowels become completely blocked and I have a rupture that spills feces into my abdomen and I get septic shock...because that's obviously the safest route to go. I guess I should look on the bright side they will have to do emergency surgery to save my life at that point...maybe they will do the laprascopy while they are in there removing sections of my diseased bowels and closing up the wall of my bowels/intestines, so it can be more than 1 surgery("at least 2surgeries to make it worth our time") and finally be worth their time.
    • A

      Angela Busha

      Please see a fertility specialist or an endocrinologist. Most Drs don't know anything about Endo. It makes a huge difference to see the right Dr. Don't give up.
      • K


        I asked my OBG if she was a fertility specialist and he said yes but I think she was referring to herself as a baby specialist ...and she likely was a delivery expert but not a reproductive specialist.
        • A


          Doctors do not have a clue about the torturous pain this disease causes. It should be treated as cancer; that would reduce a lot of the confusion and lack of empathy by society if it were treated as such. It is not even considered disabling although I have many friends who have lost jobs because of work time missed from being unable to function. Hormones make it worse. The only relief I have found is wearing a fentanyl patch for over fifteen years. I’ve changed my diet but the severe pain has only diminished slightly. Cannabis oil has also helped. If it had been legal sooner I may not have resorted to fentanyl.
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