Angela's Story

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Angela is my mom. She was diagnosed with endo in 2006. This is her story 🩷

I remember getting my first period. I was in 6th grade and on a field trip. It is etched in my brain in a way I will never forget. My mom was out of town; my grandma was in town visiting, and I was scared. I remember being on that field trip and begging to go sit somewhere. I remember crying in my room because I was in so much pain, but I had always been told that it would be ‘uncomfortable’ to get your first period… but this felt like so much more. I was too embarrassed to ask my dad or grandma about it, so I rolled toilet paper up as a pad and waited for my mom to come home. She immediately got me in with an OB/Gyn (perks of being a nurse’s daughter), and they said, “Yes, she started her period, but she also has a UTI. This is why she is in so much pain, not her period”. This started my long journey of never trusting doctors. 

When I was in 8th grade, I woke up one day feeling like I was dying. The pain was so bad I couldn’t stand; I couldn’t talk… I could only cry. My mom rushed me to the ER, fearing my appendix was rupturing. It wasn’t. It was my very first ovarian cyst rupture. It would be the first of many in my life. 

By the time I got to high school, my periods were so heavy I bled through a super tampon about every 1-2 hours. I would pass giant clots, struggle to walk and get the most insane migraines. And when it was time for my body to ovulate? I could tell you which side was releasing the egg that month based on the stabbing pains I would get. My mom took me back to drs. 

“She just has a heavy cycle.” 

“There is no way you can feel ovulation.” 

“Some women just make cysts often, we don’t know why.”

“It will get better once she has children.”

Spoiler alert. It didn’t. After my first child, I was quickly put on depo-provera for birth control, and my period completely stopped. It was the first time I felt some level of relief, but it wasn’t my body being healed. It was the medication hiding it. As I came off the Depo and switched to a pill form of birth control, it came raging back. I would be bedridden with pain. Taking pain medication around the clock just to function. At this point, I should point out, I had also been diagnosed with bladder malfunction and had several massive kidney infections that landed me in the hospital. Drs used this as an excuse for my pain. It wasn’t my reproductive system; it was my urinary system. I was diagnosed with Interstitial Cystitis (Painful Bladder Syndrome) and being a dysfunctional voider (I never empty my bladder). Another round of specialists later and I wasn’t any better. 

Then I got pregnant with Aria. I got a new OB/Gyn and after I gave birth to her, I came in for my annual exam. I apologized for being in so much pain and how heavy my period was that day… He took one look at me and said, “That’s not normal. I’m getting you in for surgery”. Surgery was 4 weeks later, and I came out with several diagnoses:

- Endometriosis

- Adenomyosis

- Interstitial Cystitis

I was immediately started on Lupron injections for 6 months, which threw me into menopause. Besides the menopause side effects, I felt great. But when I came off, all hell broke loose. Another round of surgeries, more pain meds. A miscarriage. I was told never to try to have another baby because my body wouldn’t be able to handle it. 

Then I got pregnant 1 week after my husband's Vasectomy consultation. 

And they were right, my body couldn’t handle it. I gave birth 5 weeks early. It was my hardest pregnancy ever, and it took me to my breaking point. My tubes were tied 6 weeks after he was born in conjunction with another endo surgery. 

Then another.

Then two endometrial ablations.

Then, finally, in 2010, I had a complete abdominal hysterectomy. They removed my uterus, my tubes, my ovaries, my cervix, and did a full bowel clean-up from the endo infiltration. 

My first period was in 1994. My first dr to listen and do surgery was in 2006. My hysterectomy was in 2010. 12 years for diagnosis. 16 years until hysterectomy. 

And the damage to my body? Forever.