endometriosis diagnosis

Endometriosis in Canada

Published on
4443 views
Erin Luyendyk

At 13 years old, the pain was sudden and intense; unlike anything I had ever experienced before. Bleeding followed three days after the onset of pain.  The ripping pain through my abdomen left me shaking, grey, vomiting and fainting on a predictable basis.  Every month it was the same story, crumpled into an incapacitated heap on the bathroom floor.  Over the counter pain medications offered no benefit.  I also developed a weak resistance to infection with suspiciously cyclical flare ups of throat infections, severe fatigue and viral illnesses.  I knew something was very wrong from the start, although the medical establishment did not believe me.

Doctor after doctor dismissed my symptoms.  “This is normal.  Get used to it.”  “You’re too sensitive.”  “It can’t possibly be that bad, you are being over dramatic.”  “You have penis envy.”  “You are a hypochondriac; it’s all in your head.” Futile doctor visit after futile doctor visit, I was caught in an unrelenting cycle of illness on a monthly basis.  I missed a great deal of high school due to illness and this unrelenting pain with seemingly no explanation.

Following high school graduation I moved to a major city to pursue my education.  I was very fortunate to find a new family doctor who did take my symptoms seriously and referred me to one of the country’s leading experts of the highly suspected disease.  Several months later, after laparoscopic excision with biopsy the diagnosis was certain: endometriosis.  I was 20 years old.

After my surgery I did improve for a while.  With continuous birth control pills and copious NSAIDs I was semi-functional; however it got to the point where I knew another surgery was imminent.  I had my second laparoscopy with a different doctor in Calgary AB eighteen months following my first surgery.  Immediately after surgery I developed a new severe stabbing pain in the lower right quadrant that never went away.  I later found out this doctor had lied to me and had actually performed a laparoscopic fulguration of endometriosis rather than the consented to excision procedure despite my very clear wishes that anything other than excision was not to be performed under any circumstances.  This doctor continued to lie to me the remainder of time I was under her care.  This kind of patient treatment and the complete disregard for patient consent is deemed to be perfectly acceptable and ethical by the Peter Lougheed Hospital and Alberta Health Services.

During this time as my pain was relentless I started learning everything I possibly could about diet and alternative treatments.  Although my vegetarian diet has always been quite healthy I found that certain foods absolutely triggered pain and inflammation.  As sick as I have been, certain foods make my symptoms a thousand times worse.  Dietary therapy and acupuncture were absolutely critical in my functioning in daily life for the next several years (as they continue to be) and inspired me to pursue an education and career in nutrition.  I personally and professionally believe an integrative approach to endometriosis (expert excision surgery, dietary therapy, pelvic floor physical therapy, acupuncture etc) is essential in the optimal treatment of endometriosis.

In the summer of 2008 I suddenly became very sick with fever, nausea and a sudden mysterious painful lump in my abdomen.  It was deep in the muscle just to the right of my navel and felt like a burning marble embedded in my tissue.  Upon seeking medical care, I was sent directly to the emergency room at Vancouver General Hospital for urgent testing.  After an eventful evening in the ER, they ruled out appendicitis and other emergent conditions and sent me home for the night to return for more testing the following day.  My ultrasound could have been a scene from the pregnant man episode from Grey’s Anatomy.  After my initial scan, doctor after doctor came in, followed by residents and students “just to take a look.”  It turned out I had what was believed to be (and later confirmed) an extremely rare abdominal wall endometrioma.

Several months later I had a repeat laparoscopy and mini laparotomy to remove the abdominal wall endometrioma with my initial surgeon.  I improved for a little while, although my stabbing lower right quadrant pain that started after my second surgery persisted relentlessly.  About a year and a half following this surgery I suddenly developed severe nausea and fevers again, along with other inflammatory symptoms that always seem to accompany my endo.  Around this time I also developed stomach ulcers and gastritis from years of taking NSAID medications daily like TicTacs and now can no longer use these medications.  After a couple of years of my worsening symptoms not being taken seriously by numerous specialists across the city with no treatment offers other than hormones (which I am not interested in due to their serious side effects and questionable efficacy) and various stomach medications I decided to look elsewhere for effective treatment to completely excise all of the endo once and for all.

I consulted with three global endometriosis excision specialists, all based in the United States.  All of whom opined that my endometriosis had not been completed excised and diagnosed additional problems that had been missed completely by my leading Canadian specialists. Despite my worsening symptoms, recurrence of the abdominal wall endometrioma and new symptoms suggestive of sciatic endometriosis the doctors here and Health Insurance BC refuse to admit that my rare and complicated case requires a level of expertise that exceeds the present capacities of the Canadian medical system.   They would rather pay considerably more to continue ineffective care here than cover likely curative surgery in the United States.  My case has remained ignored by the BC Ministry of Health despite having caught the attention of the Vancouver Sun in February 2013.  It doesn’t make sense on any level: fiscally, medically or ethically and begs the question does ego matter more than patient care in the province of British Columbia and in Canada as a whole?

I am still locked in a battle with Health Insurance BC and my doctors trying to advocate for the level of expertise I know I need.  Trying to decide if I should just have yet another palliative laparoscopic excision in Canada and submit to a lifetime of pain, suffering and surgery or take my fight to the next level so they will hopefully finally realize that covering optimal care is in the best interest of all involved – myself, physicians, politicians and the tax payers.  So for now I stick with green juice.  As much as I want to believe that the future for other women and girls with endometriosis in Canada is going to be better than it has been for me I remain unconvinced.  The politics and attitudes lag far behind the science.  This is why it is so important for empowered and educated patients and health professionals to speak up and make our voices heard.  Without our united voices nothing will ever change.

 

Related posts:

Endometriosis, Lupron, Fluoroquinolones and DysautonomiaEndometriosis, Lupron, and Fluoroquinolones: A Recipe for Autonomic Disintegration endometriosisThe Reality of Endometriosis in the ER

You might be interested in

Misunderstanding and Misdiagnosis: Journey Towards Endometriosis Diagnosis

Published on
3271 views
Rachel Cohen

Try this experiment: Google the words ‘endometriosis’ and ‘misunderstood’ and see how many results you get. Care to make an educated guess of how many you would find? 300? 3,000? Try 62,600! For those who don’t have any experience with endo this number might be shocking. But we who have suffered through the long and arduous journey of trying to find a diagnosis, 62,600 is not as staggering as it sounds.

For me, misunderstanding has been a huge part of my life with endo. Although my symptoms began at age fifteen, I was not diagnosed with endo until I was twenty six. Instead, I was misdiagnosed with chronic fatigue syndrome, migraines, bladder infections, urinary tract infections, epiploic appendigitis, kidney stones, pelvic separation syndrome, interstitial cystitis, polycistic ovaries, degenerative disks, a hernia, and the very worst, hypochondria.

Common Misdiagnoses

As I have come to understand over the years, my experience of misunderstanding and misdiagnosis is not one of a kind. In fact, according to the Endometriosis Foundation of America, most women with endometriosis have pain and present symptoms up to a full decade before being diagnosed.  While symptoms have been documented as beginning in girls as early as twelve years of age, the average age of diagnosis is twenty-seven. Additionally, the National Endometriosis Society claims around two million women worldwide have undiagnosed endometriosis.

Like myself, women with endometriosis have been misdiagnosed as having a host of different diseases including interstitial cystitis and polycistic ovaries. Abdominal and bowel endometriosis is often mislabeled as inflammatory bowel syndrome (IBS) while pelvic endometriosis is confused with pelvic inflammatory disease (PID) or pelvic congestion.

Misdiagnosing Endometriosis as a Psychological Disease

Every instance in which a woman is misdiagnosed as having a different medical illness is a potential tragedy, especially because pushing off a diagnosis can place a women in greater danger of losing her fertility.  Being misunderstood and called a hypochondriac, or being told that our symptoms are solely psychologically based is undeniably traumatic. Historically, the idea of blaming the patient for her symptoms has been described by Indian doctors as early as 800 BC. Doctors believed that endometriosis was a psychological issue that could be cured by a positive attitude. According to the Endometriosis Association, 70 percent of women diagnosed with endometriosis were initially told there was no physical cause for their pain, and in 1995 an average of 50 percent of women with pelvic pain were found to have no organic basis for it.

On a personal level, I was told that my physical pain was due to anxiety and depression caused by a past traumatic incident that I had yet to achieve closure on. I was placed on a low dose of tricyclics and instructed to “learn to relax”. The sad part is, both myself and my family accepted this diagnoses as truth and delayed focusing on receiving a genuine diagnosis for many months.

Why is Endometriosis Misdiagnosed?

In a qualitative interview-based study done by Karen Ballard et. al, five main reasons for misdiagnosis or delays in diagnosis were identified.

  1. Unlucky, not ill: Many girls and women who initially experience symptoms assume that they are just unlucky to have painful periods but have no real illness.This assumption leads them to hold back on asking for help or speaking to a doctor for fear that the will just be seen as weak. This incorrect belief is often confirmed by family members who also suffer.
  2. Symptoms normalized: When women finally do gather the strength to ask for help from their doctors, they are often told their symptoms are a normal part of being a women and do not need to be checked out.
  3. Hormones delay diagnosis: Aside from telling women that their symptoms are normal, some doctors prescribe hormones to their patients. This causes an unfortunate situation, as the hormones suppress the symptoms and cause women to believe their symptoms have improved. Women then neglect to get themselves checked out, which causes a delay in diagnosis.
  4. Inadequate diagnostic methods: Recently, it has come to light that the best way to diagnose endometriosis is through laparosopic surgery. Unfortunately, doctors who are uneducated about this are still using other diagnostic methods, such a trasvaginal sonograms. While sonograms can identify endometriomas, they cannot diagnose endometriosis. Utilizing inadequate diagnostic methods can cause a very large delay in diagnosis, or even worse, an incorrect one.
  5. Vague symptoms: Endometriosis manifests in a variety of symptoms. Those symptoms, such as pain, fatigue, bowel and bladder difficulties, and pain during sex are also symptoms of other diseases. Pelvic inflammatory disease, pelvic congestion, irritable bowel syndrome, and interstitial cystitis are a few of the many diseases that have some of the same symptoms as endometriosis. Due to this, endometriosis is often misdiagnosed as one of these other diseases.

How do we prevent misdiagnosis and delayed diagnosis in the future?

  1. Self-education: It is our jobs as strong, independent women to fortify ourselves with knowledge and information about our bodies, minds, and health. The more we know about ourselves, the less likely it is for us to be convinced that we are something that we’re not.
  2. Spread the word: Do you suffer from endometriosis? Have you stocked your brain with all there is to know about it? Let the world know! Share your experiences, knowledge and information with other women who don’t know much about the subject. The more girls and women know about endometriosis, the better their chances of receiving a correct diagnosis.
  3. Inform the medical community: It may come as a surprise to know that not all doctors and nurses are experts at every medical malady. Too often, when it comes to endometriosis, they have a superficial grasp of what it entails. This is due to misinformation coming from the internet, media, and even medical books. We need to take it upon ourselves to inform the medical community what we are really dealing with when we say we have endometriosis.

It’s Up to Us

While endometriosis misdiagnosis and delayed diagnosis are problems that are much more common than they should be, there are ways that we can help ourselves, and others, prevent them from happening. As long as we continue to stand up for ourselves and advocate for the rights of all women and girls with endometriosis, we are on the right track. United together, there is nothing that we endo-sisters cannot overcome in the future.

About the author. Rachel Cohen is technically a special education teacher, specializing in working with children who have autism; or at least she was until endometriosis took over her life. Now she writes, blogs and tweets about endo while taking care of her miraculous two children that she has with her equally miraculous husband; not to brag or anything. Rachel is currently gathering stories from women with endo from around the world to put together into a book. You can share your story with her, or read her blog at Endo from the Heart.

Related posts:

Endometriosis, Lupron, Fluoroquinolones and DysautonomiaEndometriosis, Lupron, and Fluoroquinolones: A Recipe for Autonomic Disintegration endometriosisThe Reality of Endometriosis in the ER reflection of diseaseShattering the Mirror: Becoming More Than the Reflection of a Disease

You might be interested in