The Mighty Logo

If You Want to Hear a Scary Story, Talk to Women With Endometriosis

The most helpful emails in health
Browse our free newsletters

Editor's Note

If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741.

This time of year, a lot of people enjoy being scared by watching a horror movie, visiting haunted houses or reading creepy books. I wanted to share something with you that is truly scary and may actually be happening to a woman you know — the struggle of being diagnosed with endometriosis and the horrific toll it’s taking on them physically and mentally.

BBC news in the UK recently released this powerful video with a simple call to action to our healthcare community, “Endometriosis care across the UK needs urgent improvement and diagnosis times need to be cut in half, a report by MPs says.” 

While I understand this news story is concentrating on the UK, I believe this message needs to expand worldwide. The delay in diagnosis stats may vary, but the average delay for diagnosis is years — not days or months. No simple tests can diagnose endometriosis, it requires surgery from suspicious tissue and confirmation by a pathologist.

“For many women, the journey to endometriosis diagnosis is long and fraught with barriers and misdiagnoses. Inherent challenges include a gold standard based on an invasive surgical procedure (laparoscopy) and diverse symptomatology, contributing to the well-established delay of 4–11 years from first symptom onset to surgical diagnosis.” — Nancy’s Nook Endo

My main concern in this delay in diagnosis is what happens to women during this time. This BBC video states these powerful comments from women with endometriosis to show you just a mere glimpse of what we endure:

  • “Pain. Insanity. Invisibleness. Loneliness and pure hell.”
  • “I’ve tried to kill myself more than once. Not living is so much better than the idea of continuing to live with pain.”
  • “You look fine on the outside, but on the inside you are bleeding. You are broken.”
  • “It really doesn’t care what dreams you have.”
  • “I may not be dying, but it has killed my soul.”
  • “It is just constantly an uphill struggle to get people to take the condition seriously and not just think this is a bad period and think that you are over-exaggerating.”
  • “I am at the hospital at least once a week, on morphine injection, and now morphine is not even working.”
  • “There are some serious drugs that we are put on and they do affect you mentally. The surgery itself affects you mentally.”

I’m one of the lucky ones — I was diagnosed with endometriosis within eight months after a sudden onset of pain that became chronic and symptoms. This is not the norm by any means and even within my eight months of being undiagnosed, this is what I went through:

  • I felt like I was physically dying and no one really seemed to care but me.
  • I was scared — scared that I wouldn’t be able to handle the pain for another day or that my answers wouldn’t come until it was too late and extensive damage had already been done.
  • I was frustrated that my healthcare team did not believe the pain I was in and what it was doing to me because all of my tests, invasive procedures and scans came back “normal.”
  • I was angry because the pain forced me to be let go from my job and the insurance benefits that came with it.
  • I hated it when people suggested my pain and symptoms might be from too much stress, anxiety or depression.
  • I felt so guilty asking for help or needing extra care — as a 30-year-old woman, I shouldn’t need to ask for help or feel like I need to be monitored, but some days I literally thought I may just pass out from the pain or hardly had the energy to wash my hair.
  • My bladder test for interstitial cystitis left me in so many painful contractions and spasms that I debated on having my boyfriend take me to the ER on our way home.
  • I lost who I was because I didn’t care anymore nor have the energy to care — all I wanted to do was survive and make it to tomorrow.
  • My heating pad was my daily crutch to try and ease my pelvic pain — and left me with erythema ab igne (aka heating pad burns or scarring) which I didn’t even know was possible to get.
  • Eating was so hard because I would often experience even more pain after I ate something.
  • My mental state shifted into something I struggled to recognize — anxiety swept into my mind and stayed there, spiking every time I had to go in to see any doctors or specialists or labs to get tests.
  • In the mirror, I didn’t see me — I saw a shell of me or a zombie of sorts, I didn’t know who that person was but I also didn’t care enough to try and do anything about it because I just needed to find something — anything — to deal with this pain or figure out what was happening to my body so I could try to feel better and get my life back on track.

That all happened to me within eight months — I cannot imagine going through that pain, lack of answers or a treatment plan (which should include excision surgery by a vetted specialist if possible) for a year — let alone up to double digits of years.

How are these women surviving? How have they not given up? How long can someone endure this kind of thing without breaking?

It’s not right. It’s not OK. And something needs to be done now. Not a year from now, not a month from now — today.

We need to start making endometriosis required with in-depth learning to all OB-GYNs in training so that our future generation of women can have their lives back before it’s lost or they simply give up because the wait for answers about endometriosis is too long and agonizing.

This is a horror story that one in 10 women are living every single day — how’s that for a scary Halloween story?

Ending Note: For women seeking help with being diagnosed with endometriosis or suspect they may have it, I highly encourage you to visit Nancy’s Nook website to learn more about this disease and how to get the best possible treatment. Stay strong and know you are not alone.

Originally published: October 28, 2020
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home