woman jumping over many hurdles

Getting Diagnosed With Endometriosis Is No Easy Feat

For most endometriosis patients, it takes an average of 7.5 years to be diagnosed.1 For many women, this involves countless invasive tests, mis-diagnoses, and hearing “it’s probably just stress”.

Just like many endometriosis sufferers, I look pretty healthy. On the inside, I’m fighting chronic fatigue, strong levels of pain, debilitating mood swings, and a super fun, mixed bag of other symptoms. And just like many other woman with endometriosis, me and this illness go way back.

From the beginning…

In my case, endometriosis became a somewhat hidden participant in my life. It gave me glaring signals for years, it’s just that no one seemed to care to look for it. When my first period arrived, I lost so much blood that I had to be rushed to the emergency room, and spent several days in hospital. My aunts told me how two of them had “entered womanhood” in this same over-dramatic way. No one thought any more of it. Yet, during my teenage years, having my period meant spending days in bed, in excruciating pain, while my parents watched over me, completely lost as to what to do to help.

As an adult, I dragged myself to yearly gynecological tests, listing symptom after symptom. I’d ask about the discomfort, the heavy bleeding, and would get no clear answers. Most health professionals would tell me “it’s probably nothing” or mention stress as the culprit. Others offered diagnoses quite casually, without looking further. I was once told I had polycystic ovaries, and then had to find two more doctors to refute this claim.

Knowing what to ask for

After almost 15 years watching my health deteriorate and my career take a massive hit, I went to the doctors once more. Only this time there was a huge difference. A friend of mine, having heard all of my symptoms told me it sounded like what she had: endometriosis. I finally knew what to ask doctors, and I argued and pleaded for it.

After several scans and numerous other tests, a doctor finally agreed to perform a laparoscopy. This procedure would confirm I had severe endometriosis. That diagnosis changed my life completely. It wasn’t all in my head, I was officially, chronically ill.

My story is not unique

The funny thing is that my story is not unique. Talk to many woman with endometriosis and they will recount similar experiences. It still puzzles me how an illness that affects 1 in 10 women1 – making it almost as common as diabetes – is still so hard to diagnose. Yes, a laparoscopy – currently the main form of diagnosis2,3 – is not a simple procedure, as it involves general anesthetic. However, the lack of guidance towards a diagnosis, the fact that doctors that mention this disease are still a minority, makes me want to throw my hot water bottle out of the window – along with my TENS machine and the several boxes of painkillers currently by my bedside.

Women deserve better

Waiting almost a decade to be told you have a life-altering disease is not enough. Telling someone that excruciating levels of pain are “normal” is misguided and can have long-term consequences.

That is why I am sharing my own diagnosis story publicly. The more we talk about our complicated journeys, the easier it will be for young girls to receive the guidance that will help them manage life with endometriosis.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
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