Endometriosis Journey – The Underdiagnosis of Menstrual Issues

We need to talk about something serious. And I’m not asking you to converse with me about your humourless uncle. No, I’m referring specifically to the underdiagnosis of menstrual issues like PCOS (polycystic ovarian syndrome) and endometriosis.

According to the Endometriosis Network Canada, it is estimated that 1 in 10 women has endometriosis. The prevalence of PCOS cases is roughly the same, as well. And yet, when we complain of severe menstrual pain, we’re told that we have PMS or dysmenorrhea, and that we should be taking the pill.

This issue is very personal to me.

My endometriosis journey

The teenage years

The first few years of my period presented with the expected mood swings a teenager would experience, and “average” cramps (though it should be noted that average does NOT mean healthy). But a few years in, something started to go seriously wrong. When my period came around, I found myself curled up in pain on the bathroom floor, ready to vomit.

Visits to the doctor informed me that it was “just PMS”. I was prescribed a high dose of painkillers. And I continued to take them until I had built a tolerance, and found that they no longer had an effect on me. I was then told to take the pill to “fix” my symptoms. When I eventually did start taking synthetic hormones, all seemed to be better. However, a correlation has been observed between some types of oral contraceptives and IBS.

The digestive issues and stress

Of course, I did develop IBS. I even had an acute bout of colitis and discovered a bunch of food sensitivities. Did you know that digestive problems can worsen menstrual issues? And the hormonal medication that was supposed to help my PMS was worsening my digestion. It’s a vicious cycle!

In my early twenties, I finally came off of hormonal contraceptives after 5-6 years of use. My digestive issues did improve a bit. However, it quickly became clear that the pill had only been a band-aid solution for my menstrual issues.

Under the recommendations of my Naturopathic Doctor, I made lots of changes to my health. These changes showed varying degrees of improvement on my PMS symptoms. They did, however, help my digestion.

In nutrition school, I learned a wealth of information that I could directly apply to my health. I was in heaven. Once again, my period was manageable. But again, “manageable” doesn’t mean healthy.

After I graduated from nutrition school came the challenge of starting my nutrition practice. Let me say that starting a business is not a stress-free endeavour! But when the body produces a lot of stress hormone, it ends up messing up the body’s entire balance of hormones.

It was like I had been transported back 10 years. The pain came back in full force. Once again, I was curling up on the bathroom floor on the worst days of my period. I was unable to be mentally present during social gatherings because I was busy willing the pain to go away.

Testing for menstrual issues

Because my mother had PCOS, I pushed hard to get an ultrasound and some hormone tests done. But when those tests showed no PCOS, I was told it was only dysmenorrhea. As a healthcare professional who works mainly with menstrual issues, I knew that something had to be wrong for my body to react that way. But had I been a layperson, I would have accepted that explanation and continued suffering.

Once I found out I didn’t have PCOS, I continued to try to figure out what could be wrong with my body. My symptoms were suggesting endometriosis. But endometriosis is a condition which is a bit tricky to diagnose because it doesn’t show up on blood tests or most ultrasounds. It usually requires a laparoscopy, which involves filling the abdomen with air, and inserting a camera through an incision near the navel. Diagnosis or not, I want this issue taken care of as soon as possible.

Last week, I went in for my physical and brought up my concerns. As someone who doesn’t automatically choose conventional medical interventions, my concerns don’t always get taken as seriously. My doctor told me that since I am not looking to conceive in the next 6 months and I don’t plan on going back on synthetic hormones, there’s no point in looking further into my menstrual issues. But upon doing the actual physical portion of the appointment, she was convinced.

An optimistic future

I received a referral for a gynecologist so that we can discuss my options. Endometriosis is one of those conditions that, when left untreated, can get worse. But I am choosing alternative treatments that focus on bringing balance back into my body, rather than simply dealing with the symptoms. Bringing balance back into my body will also reduce my chances of having ovarian cancer, since endometriosis puts women at a higher risk.

After struggling for 13 years, I’m finally starting to get answers. Sadly, this is not out of the norm. In Canada, it takes an average of 7 to 9 years of complaining of symptoms to get a diagnosis.

Will I be able to reverse the issue? Who knows! But I certainly won’t give up until I do. And not only will I fight for my own health, but I also plan to help as many women as I can along the way.

Edit 01/22 – Since I first wrote this post, there have been more developments. I had appointments with a specialist a few years ago. She decided I didn’t have endometriosis because I wasn’t in pain when she ran a q-tip on my abdomen with the weight of a feather. She told me my only option was to take more synthetic hormones or take medication to induce menopause. As I have chosen not to mask the issue by creating new ones, I am no longer receiving medical support. Unfortunately, there is only one clinic in Ottawa equipped to diagnose endometriosis. The frustration of this situation led me go to back to school for acupuncture so that I could provide other options for those in the same situation.