Life with endometriosis involves at least one laparoscopy. Because adhesions can appear deep in the body, or hidden behind other organs, they often go undetected by imaging tests. This is why laparoscopies are the current standard when diagnosing the disease. Additionally, anyone undergoing treatment for endometriosis will likely receive laparoscopic surgery.

As an endometriosis patient, I’ve had two of these procedures. Before each surgery, I did plenty of research. I read medical journals and checked out endometriosis forums, yet found very little. I also bombarded the doctors and nurses treating me with questions. Sadly, the answers I received failed to prepare me for the reality of the procedure.

In hindsight, what did I wish I’d been told?

For starters, recovering from a laparoscopy can take a while.

Before my surgery, I was told I’d be back on my feet within a couple of days. For both of my laparoscopies, I was only able to leave my bed after a week. Even then, I was too wobbly and in pain to do anything strenuous. I required constant care, including help feeding me and taking me to the bathroom.

Another unpleasant surprise? Post-surgery shoulder pain.

During a laparoscopy, our abdomens are inflated with gas. This can leave a lot of residual carbon dioxide painfully lodged somewhere around our collarbones. Drinking peppermint tea can aid with the discomfort, yet this is something other endometriosis patients told me about, not health professionals.

There is also a huge emotional toll.

Any surgery involving a general anesthetic is a massive undertaking. Feelings of anxiety and dread can surface before surgery. During recovery, having to stay horizontal, inactive, and often alone, I experienced thoughts of uselessness and loneliness. Because my recovery took longer than anticipated, it ended up feeding my anxiety, which affected my mental health.

Additionally, if like me you suffer from omphalophobia, just thinking about a laparoscopy can be quite challenging.

What is omphalophobia?

It is the fear of seeing or touching a bellybutton. If I see anyone tugging at that part of their anatomy, I will scream. If anyone gets within an inch of my own, I will automatically jump, kick, and punch until my navel is clear of curious fingers. Having stitches there turned my post-surgery recovery into a nightmare. Fortunately, at the time I had a supporting partner. He helped me care for my wounds, and didn’t mind my deafening screams whenever my bandages needed to be changed.

For some, a laparoscopy may be an easy procedure.

Endometriosis patients can suffer from heightened levels of stress. Excessive worrying about a straightforward, generally low-risk procedure is not desirable. Yet, the little correlation between what I was told and how my laparoscopies turned out, made me feel inadequate. Why was I struggling so much? Why wasn’t I able to move around or drive my car two days later, as I’d been told?

Speaking to other endometriosis patients, I found a similar level of misinformation. Even the leaflets some patients receive minimize recovery times and levels of discomfort. Why is this happening? Is it lack of research, or lazy sexism? Is it because endometriosis is considered a female health issue, so any idea of struggle is minimized? Or, is it a case of “pull yourself together, woman”?

The same can be said of smear tests. Very few recognize how incredibly traumatizing they can be. Instead of finding a less barbaric health check, we blame women for not showing up to their appointments. Where is the research to move past these invasive procedures?

Recently, research pointed toward the existence of biomarkers to detect endometriosis without the need for a laparoscopy, but we are still waiting to see these advances put into practice.

Conversations about laparoscopies need no sugarcoating. Some people may have the easiest of experiences, but for a lot of us, these are no swift, hassle-free procedures. Telling anyone otherwise will only result in frustration and anxiety when their recovery isn’t as fast as anticipated.

Honesty and less invasive procedures — that’s my wish for 2021.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to endometriosis.