Endometriosis – A Disease of the Shadows

Natalie Shew

Natalie is the CEO and Co-founder of EmployWell, Inc., a Burnover Management Platform to humanize complex care.

I’d always had painful periods, but like many girls and women, I was told that painful cramps were normal. I was a really good basketball player before my period started. Parents and fans commented on how fast I was on the court – I’d wear my opponents down until they practically gave me the ball. But after my period started, everything changed. I slowed down, wasn’t as quick on my feet. I remember this gnawing pain started up every month around my period. I found myself increasingly making excuses to my parents about being sick and needing to stay home during my period. Over time, the gnawing pain and headaches turned into stabbing pain and migraines. I continued to play sports and push myself, but it wasn’t the same. I had to work so much harder to perform. I hated my body for turning on me.

Things worsened over time, and there were points when my parents tried to intervene. I struggled with depression my senior year of high school and into college. As I look back, I remember feeling physically depleted most of the time. Reluctantly, I went to an OBGYN in college for the first time after a traumatic experience trying to insert a tampon. I had never been able to use tampons because it hurt too much. Not only was I embarrassed, but also afraid something was seriously wrong with me. After a terrifying and painful visit, I ended up being diagnosed with a microperforate hymen and vaginismus. No one really explained what any of that meant, and it was mostly Greek to me, but I clearly remember the doctor saying I might have issues getting pregnant one day. What did that mean? 

After a few more traumatic experiences at the OBGYN due to extremely painful pelvic exams, I quit going. No one said a word about Endometriosis despite my flood of tears and complaints about severe pelvic pain. Sure, there was a recommendation to get on birth control or see a pelvic therapist, but nothing beyond that. And nothing helped. 

Years went by, and every month, I’d curl up on the cool bathroom floor while lesions on my pelvic organs bled, pooling in my abdomen. I had no clue that a dense web of tissue had formed around my bladder, covered my uterus, infiltrated my intestines, colon, ovaries, cul-de-sac, and stomach lining. I’d finally go back to the OBGYN after things hit a breaking point – vomiting during my period and immobilized from cramping that would start at ovulation and last until after my period ended. My husband was the one who forced me to go, and I’m glad he did.

I remember walking into my new doctor and saying, “I can’t deal with this pain anymore. I’m done, and nothing helps.” He was the first doctor who even mentioned Endometriosis to me. Two surgeries later, the diagnosis was stage 4 Endometriosis that was near impossible to remove, a large blood-filled cyst in my ovary, then a partial Oophorectomy, and a future of painkillers, hormonal drugs, and chronic inflammation. I tried 6 different hormone inhibiting drugs, anti-inflammatory diets, chiropractic, PT, yoga, running, naturopath – none bringing lasting relief, others causing further damage to my physical and mental health. I dealt with severe migraines and joint issues from forcing my body into a drug-induced menopause.

I’d come home from work each day, exhausted from 9 hours of holding it all together, only to collapse on our giant floor pillows – their round shape supporting my aching body. I felt ancient and broken. Pain was always there. I needed to stop all these meds and get my body back on track. 

After telling my doctor I needed to get off the meds, he recommended I get pregnant. This would supposedly make all the Endo pain go away. Oh boy, this was the start of another very frustrating journey. At this point, I’d built a solid network of Endo sisters, many of whom had conceived with very little issue. I guess I thought this would be my story too. Six months rolled by – nothing. One year – Clomid and one miscarriage. Two years – Letrozole and nothing. Three years – another miscarriage and a new Endo drug called Orilissa. By year four, we were finally referred to a reproductive endocrinologist who performed a number of tests. 

Ultimately, I went through IVF, a story I’ll share another time, but we ended up with a precious baby boy at the end of that journey. There’s a myth going around that pregnancy cures Endo – I’m here to tell you that’s not the case for many of us. I did find relief during pregnancy and breastfeeding, which I was fortunate enough to do for a year (not without immense struggle). The pressure to breastfeed when you have Endo is even higher than for people without it because it puts your body in temporary state of menopause, suppressing your estrogen, which is what Endo feeds on. 

I write this story 18 months postpartum, and my painful periods have returned, along with the migraines and fatigue. C’est la vie for us Endo people. The disease is always lurking in the shadows. I don’t know what my next steps are. I’ve considered all the things – excision surgery, hysterectomy, another IVF transfer. I long for better treatment options, enhanced fundamental research, faster diagnosis, and intervention. This pain is the catalyst for my work and my fight to elevate women’s health innovation and empower women to lead the charge. 

To those of you out there struggling with Endometriosis, pelvic pain, or any of the issues I’ve discussed above, you are not alone. I’m a good listener, so please reach out. 

About Nathalie and EmployWell, Inc.

Natalie is the CEO and Co-founder of EmployWell, Inc., a Burnover Management Platform to humanize complex care. Our mission is to build cultures of dignity in healthcare to improve care experiences. We’re securing the future of healthcare by reducing employee burnout and turnover through meaningful recognition.