Halifax doctor agrees endometriosis should be treated like cancer
New study published in Canadian medical journal says endometriosis patients should be taken more seriously
February 14, 2020, 10:00 am ASTLast Updated: February 14, 2020, 10:47 am
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.
“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.
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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.
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.
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.
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 teenager…in 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.
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 endometriosis…in 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 baby…in 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.
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.
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.
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.
I have suffered with severe Endometriosis since 1991, and was diagnosed by laparoscopy in 1994 with stage 4 Endometriosis. I had just completed my masters degree in school counseling and as a teacher, couldn’t even stand up to lead my class any longer. We tried IVF, multiple rounds, after 6 months of Lupron (chemotherapy drug) which made it worse Plus added fibromyalgia, CFS, and restless leg disorder to my list of conditions. . I would pass out regularly from the pain but each doctor I visited only would prescribe ibuprophen and antidepressants. Then one doctor said she thought it had become cancerous, in 2003, and did an emergency surgery where I woke up with no ovary on one side because she thought it was a cancerous tumor. It wasn’t. I also developed a staph infection with high fever a week after that one and almost died, waiting in the ER for 21 hours in horrible pain, vomiting and screaming for them to please help me. I was admitted and placed on strong antibiotics for weeks to help me fight the infection. After that my health went downhill. I have been to 29 ob-gyn doctors in the past 25 years. None of them helped me with pain. My husband left for a younger, more fertile wife. I was alone with our two adopted kids and couldn’t work. Now I am starting menopause and am bedridden for two years. I am on strong opioids to be able to get out of bed and outside once a week. It hurts to digest my food because it has grown throughout my abdomen with adhesions binding everything together in my bowel. It seems to be never ending. I’d i could just call it ‘cancer’ others would sympathize more, because the level of pain in cancer is nothing compared to this. I was never able to get pregnant but my current husband has never known me without this pain. He is a wonderful caregiver. My daughter stopped speaking to me 8 years ago because she said she was ‘tired of being around sick people.’ There is nothing but loss after loss with this disease. It’s good to see doctors taking it more seriously. It’s manmade from all the plastics, chlorine, and toxins in our food and water supply. Only diet change and supplements seem to make any difference at all in whether or not I am able to get out of bed each morning.
I was fortunate enough that my gynecologist knew what endometriosis looked like and diagnosed me while removing my fallopian tubes due to hydrosalpinx. Unfortunately he prescribed medication (vissane and orlissa) instead of referring me to a specialist. Luckily I found Nancy’s nook on Facebook not long after being diagnosed and i started researching. I immediately requested and recieved a referral to an excision specialist 2.5 hours away (the closest specialist) but the wait time is 18-36 MONTHS just for a consult let alone a surgery date. I fear the progression of my endometriosis and the symptoms it brings while I wait. We need more excision specialists in Canada. We need physicians to be better informed about this disease and the medication they prescribe that only mask the symptoms. Just because the pain may be gone while on the meds it is not a “win” while our bodies potentially endure the horrid long term side effects. I am one of the lucky ones who was diagnosed early and taken seriously right from the start but my journey with endometriosis is far from over. I agree with Dr. Mathew Leonardi in that endometriosis patients should experience the same care as a patient with gynecological cancer. Thank you for writing this article.
Dr Randle performed my hysterectomy for Adenomyosis and dense adhesions caused by c-sections and endometriosis. I am thankful for her work, and efforts to increase and diversify the care,but Nova Scotia has a long way to go! I was brushed off for 11 long agonizing years!! Even by a different doctor at the IWK in 2009! I have missed out on so much of my life suffering debilitating pain.
I am also very thankful for Nancy Peterson’s work through her FB page: Nancy’s Nook Endometriosis Education, it has been a wealth of useful information to make smart decisions about your own healthcare. We must be advocates for ourselves!
Missy, thanks for your comments, can you send me in. a PM in Nook, Dr Randle’s address or if she is on Facebook, alert her to Nook, we have now many physicians who have joined after AAGL and since they are looking at a multidisciplinary approach there may be others doing this that she would benefit from liking up with. thankss
Will do!
I live in Moncton, New Brunswick. I grew up in Saint John. I doubled over in pain as a teenager and told yo calm down that I was having a miscarriage. My mother slapped me… I was a virgin. Later I was told it was a cyst. My doctor had me on different birth control pills to help with my periods.
I’ve always had horrible periods. My nurse practitioner told me no one likes them, exercise and loose weight, I would avoid paps; they left me in tears. Again, told that no one enjoys them.
I started dating my husband and was put on depot shots. I was told because of my Mom and family history with breast cancer they this was my only birth control option. I gained major weight, on top of already being obese. I had lapband surgery; went off depot. Had an IUD; oh the pain,
Removed the IUD to try and start a family,.. no luck. 2017 had the lapband removed and had gastric bypass, On my own and with weight loss surgery I’ve lost 170lbs. When we tried again for children, we were referred to Conceptia. We waited a whole year and got there on my 40th birthday. I was asked about endometriosis and I said I didn’t know. I started to advise my history of infertility, pain with sex, horrible periods. I was told that if I had endometriosis I would know. My husband and I decided not to pursue IVF for financial reasons.
A few months later I started bleeding from my belly button. After a year of blood work, X-rays, various versions of ultra sounds, and a biopsy, I was referred to gynaecologist got the first time in my life. Who said I most likely have endometriosis. He attempted an internal exam that cause me to scream and instant tears. He put me on Zoladex and said 6 months will dry up the endometriosis and I’ll be cured.
Those 6 months… I was pain free and no periods, I had hot flashes, moods, no sex drive. Honestly because of the pain; I’m not a fan of sex. Well, 6 months up.., 2 months later and my period comes back with all the pain and bleeding belly button,. It’s even worse now because after pain free for 6 months it’s hell. Now waiting to see the gyno again after 3 months because he wanted another mri.
I experience pain every day. My periods leave me curled up in tears. I’ve been told to just take ibuprofen. I’ve had my knees buckle in pain. I’ve taken oxy, naproxen, Motrin. I’ve never done cannabis but I wonder if it would help.
I’ve never been doing my own research since the Zoladex was a lie. I was never offered a lap or excision. Nancy Nook and the Canadian Facebook site show no options in Atlantic Canada. I asked for a hysterectomy and was told that’s a last option and they don’t like doing them.
During my periods it is excruciating to have a bowel movement. I bleed through overnight pads. I have pain in my groin, hips, and down my leg right to my heel. Plus I bleed through my belly button. It stinks, becomes sore and raw a week before, during, and after my period.
I feel like my issues were ignored because I’m fat. Now I’m not sure if the gynaecologist I was assigned is even qualified or knowledgeable enough to treat me because they don’t seem to care that I’m in pain. I’m sick and tired of being told take a pill and suck it up.
By the way my threshold for pain let me pass 24 kidney stones with 1 oxy pill…. but my period or ovulation that leaves me popping pills and barely walking is just “normal.” Or something to live with.
Frustrated in New Brunswick
More doctors need to be properly informed of endometriosis. I have seen so many doctors that have very little or incorrect knowledge on endo…. Saying if they can’t feel it, it’s not there, or it’s just a pulled muscle, it’s “just period pain, part of being a woman”.
I have left doctors offices in tears from the horrible comments they make, saying it’s all in your head or that your creating the pain and anxiety… It’s hard enough to have pain daily but for doctors to treat you like you are crazy and blow you off… Then they wonder why we are depressed!
Seriously. The medical community should be ashamed of this situation and want to change, as opposed to a few outspoken doctors that we all have to fight to see. At the VERY least they should be willing to admit they aren’t skilled or informed enough to deal with endo and refer them elsewhere, as opposed to just shoving useless pills at them…or worse, operating on them when they have absolutely no business doing so. It’s just so incredibly frustrating and horrible!
I started having issues at about age 15. I was finally diagnosed at age 30. I am now 46 and heading out of province for help. It is a crying shame that there are so few doctors who are trained, knowledgeable and experienced with diagnosis and effective treatment of endometriosis. So many people suffer for far too long!!
I should add that the process of seeing a true expert is a very long one in Canada. I am approaching 2 years since my initial referral. I have met with the doctor once where it was determined that I needed surgery. I knew at the time that I would be waiting up to a year again for that surgery that was deemed the “first step”.
This is just one of the many reasons why Nova Scotia needs an IVF funding program. Endometriosis lowers chances of successful conception and live birth rates, with time being of the essence.
But infertility aside, the condition is hell. One of my recent periods left me bed ridden for three days, and using Dilaudid (not a regular occurrence for me, but I am one of the lucky ones). I can’t even imagine what it’s like to be in that much pain for several days every single period, or, chronically. The only reason endometriosis is neglected so badly is because it’s predominantly and traditionally a “women’s issue”. Absolutely disgusting and shameful.
A lot of us go for years or decades without even being taken seriously enough to get a lap! If you complain the pain is effecting your life they don’t seem to take it seriously and assume it’s a bad period. Something needs to change.
people are being left down and in alot of cases being left unable to have a child, going through IVF with a lower chance of success rate. heartbreaking
I live in the UK and it’s just as bad
I live in ontario. I first started experiencing chronic pelvic pain when I was 13 years old. I’m 24 in a week and I was only diagnosed with endometriosis 2 years ago. 9 years is what i spent attending countless doctors appointments, seeing gynecologist after gynecologist, being told that I dont know my own body and that there was nothing wrong with me. I had my first laparoscopy in november of 2017 and my symptoms have all since returned. I’m now waiting on a referral for another laparoscopy, except I dont get the choice of seeing an expert in this field, my options are limited to what my doctor deems appropriate, as opposed to Nancy’s Nook who has vetted the doctors and found the ones with the highest success rates. This system is exhausting. It is dehumanizing, and I am so, so tired of it.
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!
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 .
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
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.
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.