Halifax doctor agrees endometriosis should be treated like cancer

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.

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.

Join the conversation

1. M

   Millicent Prince

   Feb 14, 2020 | 12:00AM
   It’s sad being a Canadian and seeing all the research and funding put into endometriosis in other countries, I’m grateful for the ladies there but for the woman in Canada it’s very hard, wait times for any appointments are excruciatingly long, & because of the doctors being overworked we don’t get examined properly! A lot of the times out symptoms will be shrugged off as G.I issues, which makes the wait even longer. Thank you for bringing the much needed awareness!

2. L

   Lynn

   Feb 14, 2020 | 12:00AM
   I am a Canadian member of Nancy Peterson's FB page, "Nancy's Nook " which is where I learned everything I needed to know about endometriosis and found an expert surgeon. Endometriosis was never suggested to me as a reason for my chronic pelvic pain which I spent about 4 years investigating and visiting various doctors. Most gynaecologists know very little about the condition and are quick to offer various drugs , birth control or Lupron, none of which are effective in treating endo. Wait times to see any specialists in Canada are outrageously long, but a 9 month plus waiting time at the Pelvic Pain clinic at BC Women's hospital is a perfect example. Surgery wait times even longer. A hysterectomy is not a cure for Endometriosis unfortunately, and what the article fails to mention is that excision surgery is the gold standard. After finding out the wait time in BC just to get an appointment at the pelvic pain clinic, I decided to go to the US 6 months ago and have excision surgery with an endometriosis expert with years of experience. I was tired of being in excruciating pain much of the time, not able to function and spending days in bed. I have been pain free since and am thankful every day. Another flaw in the article; although rare, endometriomas can be malignant which is in my case was what was found at surgery. Here in Canada, there is an great need for better education for GP and gynaecologists and incentive for gynaecologists to learn how to do excision surgery ( not ablation)Women's health concerns and especially chronic pelvic pain are not taken seriously by doctors .

3. D

   Deborah Weiland

   Feb 14, 2020 | 12:00AM
   Not only frustration, but desperation in getting ANY care. The long wait time to be actually diagnosed, then the even longer wait time to actually have a surgical procedure. Only most of the time to find out much of the disease was left behind, because it was in too sensitive of an area. Or the excision surgery was actually ablation. Frustration when you try to talk to your physician and they ignore your request for more information on the scope of care they can provide and what their surgical limits might be. To be left feeling so desperate that the first opportunity to get surgery you have to jump on; in the hope to regain ANY small part of the quality of life you used to have. Only to find out post surgery you actually feel worse. When the surgery fails, requesting more information or to be referred else where and to only be offered pain medications, because they say “there’s nothing more that can be done for you” When some of our gynaecologist here in Canada are advocating and educating retrograde bleeding being the cause for Endometriosis & that Orissa & Visane are the drugs to treat / cure. This is our state of affairs right now. This is why we are left feeling frustrated & desperate. We can read, we can educate our selves, but for most of us it still only affords us substandard health care with undereducated physicians learning information from 50 yrs ago & not current medical facts. On top of still teaching inadequate surgical procedures with our government system not paying for enough OR time or office consultation time to provide the care that should be standard. We need all the advocacy we can muster! The advocacy to be confident enough to say to our care providers, no that drug/ or procedure did NOT work it made me sicker (etc) And yes this surgery & process did work! Then requesting “Please as a physician can you be open & learn from my experience?” They also have to be open to the idea that offering pharmaceuticals for a first line of defence for this disease is only a bandaid and not an actual fix. We have so many remarkable physicians that want to help - and those are our allies in this advocacy for the total REFORM that needs to happen in Canada with not only the way we diagnose, but how we treat and how we eventually learn to live with Endometriosis. Thank you for writing this article our community needs all the support and advocacy we can get! Deborah Weiland Endo Educational Organization of Canada

4. T

   Teresita Trahan

   Feb 14, 2020 | 12:00AM
   A very interesting read. I wish more doctors will start to pay better attention to these matters. I will be looking into what Dr Leonardi article. Miss Tathum’s articles is always an interesting read.

5. n

   nancy petersen

   Feb 14, 2020 | 12:00AM
   I have an estimated 30 K Canadians on my 95,000 member Facebook page for endometriosis education. Their situation in many cases is deplorable, trying to access effective care. Many report being denied effective care unless they want to get pregnant. Leaving them with severe pain "treated" only partially with drugs that do not treat, only suppress all the while the disease progresses. Living with endometriosis is like living with acute appendicitis all of the time, sharing similar peritoneal signs and symptoms. The few surgeons who offer effective treatment are swamped with wait times often reported by patients over a year. Many report that they have lost jobs, partners, families, ability to have children and are left in despair. It is a world wide problem but progress is being made in some countries and needs to be accelerated everywhere. This is real suffering, all too often falling on deaf ears but frequently ignored despite the ability to help.