sharing the ME in Endometriosis

"Do you know that most medical schools and residency programs do not include Endometriosis in their curriculum? It's not mandated.

Think about that.

A disease that causes you or your loved one excruciating pain every day, alters the way you live your life, that messes with your psyche, that causes you to miss large chunks of work or school, that negatively affects your friendships and your partnership...

isn't required to be discussed in medical school. Are you insulted? I am..."

• Tamer Seckin, MD - excerpt from The Doctor Will See You Now

On average it takes a woman 10 years to receive the proper diagnosis for Endometriosis. Often written off as irritable bowel syndrome , appendicitis, ovarian cancer, pelvic inflammatory disease, fibroids, ovarian cysts, etc.

My Endo-Journey began when I went in for a lumbar MRI after a car accident in 2022. Although looking back I am sure my Endo-Journey started many years prior. I started with a very heavy period in my pre-teen years. I remember having to stay home from school and when I did go to school on my period I would often bleed through my clothes and have to call my mom to bring me a change or borrow gym clothes from friends. I'll always remember the embarrassment of bleeding through my clothes onto my classroom chair when my (female) teacher wouldn't let me get up to go to the restroom during a test or the time I was on a road trip with my dad and brother. Although I thought I was changing often enough I still bled onto the car seats of my dad's car. Into adulthood, I had very painful bowel movements that would make me feel like I would pass out from the pain but I never thought twice about these things. Just figured every woman felt this way. This is normal. This is what it's like for everyone. No one speaks about periods enough to educate what is "normal" and what is not. Yes mild painful period cramps, are normal. Killer period cramps that put you in a debilitating state not being able to move off the couch or curled up on the bathroom floor... are NOT normal.

In my lumbar MRI, a pelvic cyst was shown.

When I was referred to the obgyn to further investigate this pelvic mass. The team was unsure what it was, I had labs done and my CA-125 (tumor marker) was 108 when it is supposed to be 0-35 U/mL before they could rule out ovarian cancer I was sent to GYN Oncology. Many women who have endometriosis find their CA-125 high.

The GYN Oncology set up my laparoscopic unilateral ovarian cystectomy (Robotic-assisted right ovarian cystectomy) He mentioned there was a possibility of losing my ovary due to the large size of the cyst but I was happy post-surgery to find out he only removed what was necessary and I was still left with a partial right ovary. The 10 cm cyst was completely removed and the scattered endometriosis implants (the tissue that grew/attached/functioned outside my uterus) were identified and removed (ablated) with cautery. After pathology, it was confirmed the cyst was an ovarian endometrioma (chocolate cyst/blood-filled)

I had deep endometriotic implants in the posterior cul-de-sac (bladder/uterus area) , rectovaginal region and at the uterosacral (uterus/spine) ligaments. Rectovaginal endometriosis is one of the most severe and painful forms of endometriosis. This puts me at Stage IV endometriosis and there I was at age 30 completely unaware of this disease.

• Stage 1: Minimal. There are some isolated areas of endometrium-like tissue.

• Stage 2: Mild. The tissue is mostly on the surface of organs without scarring

• Stage 3: Moderate. More organs are involved, with some areas of scarring.

• Stage 4: Severe. There are multiple organs involved with extensive areas of endometrium-like tissue and scarring.

With the car accident, I had strong post-traumatic headaches, a mild traumatic brain injury affecting both my occipital lobes and my left frontal lobe, sprained ligaments of the cervical spine, traumatic rupture of the cervical intervertebral disc, injury of nerve root of the cervical spine, sprained ligaments of thoracic spine, traumatic rupture of lumbar intervertebral disc, sprained ligaments of the lumbar spine, PTSD, severe anxiety and depression. When your body goes through a shock like that all at once it is so so hard. Even harder to keep a grasp of why did that have to happen to me?

At the end of the day; my diagnosis was caught because I got into an unfortunate car accident, I had a doctor who ordered the lumbar MRI (not just the cervical MRI), and I had family, friends and childhood doctors coaching me through this, a team that referred me to the correct doctors to help me figure out what this was and got me into surgery as soon as possible. There's no telling when this disease started for me but it is true that many women knew something wasn't right with their bodies, only to be dismissed and lose their uterus/chances of having kids later on in life because of a misdiagnosis.

In December 2023 I had a walnut-sized complex cyst rupture and put me in the most excruciating pain crying outside the ER... I cannot imagine what would have happened if that grapefruit-sized monster had ruptured in me. God was looking out for me in mysterious ways.

If you or a loved one is feeling pain and no one seems to be listening... please always advocate for yourself and find a Dr. who cares.

Your pain is REAL

You are NOT crazy

and yes there is HOPE

I hope my story brings awareness to this "not talked about enough" disease...

so let's talk about it.

Endometriosis Materials:

Books- The Doctor Will See You Now; Recognizing and Treating Endometriosis by Tamer Seckin MD https://a.co/d/8a7rmdF

Websites- https://www.endofound.org/

Movie- https://www.belowthebelt.film/

Movie- https://www.endowhat.com/

Find a support group through social media

I am so thankful to you all for being a part of my health journey these past 2 years. It has not been easy but it is so important to be honest and have a support group around you to lean on. Shout out to my amazing husband for going through the ups and downs that this disease brings along with all the chaos of the year that came with it. My parents, especially my mom, for not hesitating to come help post-surgery, my dad for being my biggest advocate and nurse, and for the endless phone calls with my brother (& sister in law) always checking in. The flowers, texts, and cards from sweet family and friends. I could not go through life without you.

My hope for this disease is that one day there will be a cure, that education will be mandatory in medical schools, that women of all ages are listened to (and believed) in the medical field, and hopefully one day, possibly with a daughter of my own, I can see the changes first hand of how far we've come with endometriosis.

My hope for you, if you are suffering with a chronic or invisible illness, is that you know you are not alone. Your pain is real. Your feelings are valid. You can do this just take it one step at a time.

My hope for anyone who knows someone suffering with a chronic or invisible illness is that you remember to give grace when it comes to someone not feeling their best self, just because we look "fine" on the outside doesn't mean everyone is "okay" on the inside.

The feelings that come with endometriosis or any other chronic illness are heavy please pay attention to how you are feeling and know there is help.

Crisis Help- https://afsp.org/

988 Suicide and Crisis Lifeline