One year after my Endometriosis Diagnosis

One year ago my life changed after my Endometriosis Diagnosis.

One year ago today, at 29 years old, I was officially diagnosed with Endometriosis and had excision surgery by an Endometriosis Specialist.

I am one of 176 million women worldwide who live with this chronic pain condition.

It was around 15 years old when I first began to experience heavy periods, blood clots and severe pelvic, hip and back pain. On top of these pains, I suffered from chronic bladder infections. I would go 3 weeks every month in pain and have a week where the pain somewhat subsided. I wouldn’t sleep well and over the counter pain killers did not cut it.

It was having an effect on my career, my relationships, my mood and my life.

For years, doctors would dismiss my concerns and fed me hormones, creams and antibiotics. I pushed through life the best I could. I really had no other choice. I wasn’t ever told that being in chronic pain for so many years could have such an impact on my body and nervous system.

So why did it take me so long to get a Endometriosis diagnosis and correct treatment?

There are so many reasons in my own personal journey but the one thing that’s consistent in most Endometriosis patient stories is that their pain was never taken seriously enough or legitimized.

I personally was told by a female OBGyn that I couldn’t have Endometriosis and when I asked (after stating all of my painful symptoms) what I’m missing, she disregarded my pain and said “ you haven’t tried to conceive and failed.”

Apparently the only concern was if I could conceive… not the pain that effects my quality of life.

I am not the only woman to spend years having pain dismissed, or to be forced to advocate for myself to get answers and treatment for my pain.

A study that was published in the British Journal of ObGyn interviewed women with chronic pelvic pain and concluded that “most felt that their pain and suffering had not been legitimized by at least one doctor that they had seen.”

So many of us see doctor after doctor, being told that our pain or issues are to be expected because ‘it happens to many other women.’

Pain, however severe, has become normalized.

Over the past few decades, researchers have found that women’s pain is often taken less seriously than men’s and, as a result, it frequently goes untreated in Western medicine. This act of ignoring someones pain can do lasting damage, both physically and emotionally.

This has to change.

Although I had the most effective treatment for my Endometriosis, I am not cured and my healing doesn’t stop there. Just like so many other Endometriosis sufferers, I also have comorbid conditions like Interstitial Cystitis and Pelvic Floor Dysfunction. I have to consistently attend Pelvic Floor Physiotherapy every week to try to retrain my nervous system as it is is in a constant “fight or flight” mode due to years of under treated pelvic pain.

I know first hand, from my own Endometriosis diagnosis that Endometriosis treatment isn’t just excision, it’s a combination of therapies + a complete lifestyle change. And so many of us are not aware of this because our physicians (a) are not educated enough in pelvic pain or (b) we aren’t sent to a specialist because our pain is dismissed.

I personally believe that the first step to the solution is to better educate OBGYN’s and medical students about women’s pain and chronic pelvic pain. And the only way to start that ball rolling is to speak up about your pain and how it is impacting your life.

Speaking up about women’s pain and raising awareness can help seek support from lawmakers and the public to get research dollars. Getting more awareness out there to increase the education on Endometriosis and pelvic pain is definitely needed to try to find new and innovative ways to treat pelvic pain conditions, like Endometriosis.

Do you have Endometriosis? Are you trying to spread the word?

I’d love to hear from you!

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