Amy Meets Endo
One woman's journey to receiving and recovering from the elusive endometriosis diagnosis : amy cross
I never knew periods weren’t supposed to be painful. When I got mine at 12, I figured the horrendous cramps, vomiting, and passing out were all part of this feminine right of passage. By that logic, so too was the heavy flow that regularly stained my jeans. I was the 7th grade queen of the sweatshirt-tied-around-the-waist look.
It took about a year of that torture before my mom had me put on birth control. This seemed to assuage her fear of the pain I was in and my budding sexuality. Jokes on her though, I’d remain a virgin for 7 more years—but fear not, that course of hormones was doing something. In this case, slightly lessening the monthly pain of my cycle while causing who knows what other side effects. In the late 90’s, we called that a WIN.
In reality, relief was still a world away. I had many instances of pelvic pain that had me in ER. My pain and symptoms were dismissed as just bad cramps. One time I passed out on the pool deck of my very important lifeguarding job, got to the ER and was told a cyst had ruptured on my ovary. No reason for concern, see ya later.
In Pain. Period.
I accepted this as part of my identity, assuming all women had some form of pain beyond the minor inconvenience of a period. I never talked about it with my friends though, after all, periods were taboo. They were dirty, secret and shameful. Having one that was heavy and hurt? I was taking that secret to the grave.
I soldiered on through my teens and twenties, relying on some form of birth control or another and a Costco-sized thing of Midol to survive. This was a band-aid solution, and as I approached thirty, it started to peel off.
The heavy periods were back with a vengeance. I had to sneak out to Target on my lunch hour to buy new tights on more than one occasion. The pain shifted from dull and achey to searing and came with some fun new symptoms, namely exhaustion, weight gain and painful intercourse.
Amy Meets Endo
My sister was the first to mention endometriosis to me. She’d been diagnosed two years earlier and had had ablation surgery to burn off lesions in her pelvic and abdomen. Sounded graphic. I was not interested in suffering the same fate. Like any little sister would do, I ignored her suggestion.
By this time, I was married though, so while I was choosing avoidance, it was next to impossible to hide the impact this was having on my life from my partner. So…I followed back up with my sister. By this point she’d had her second surgery, this time excision—the gold standard of endometriosis treatment—to scrape the lesions out from between her organs.
Stepping Up and Speaking Up
My sister was truly my guide on this journey. I figured I’d go to my gynecologist and say “Hey, here are my symptoms. I have a family history of this disease. Let’s do this.” Not so much. She laid it out for me: I had to find a specialist, pretty much plead my case, and pray. To find the specialist, I had to be part of this Facebook group where a random nurse lady vetted surgeons. I’d be lying if I said I felt confident about this approach.
To add another angle to it all, I’d just moved to a new city and didn’t have much of a relationship with my new OB/GYN practice here. It just so happened that one of those Facebook-identified specialists was in the same practice, though. All I had to do was convince them that I needed to see this person and that my case deserved consideration.
My first attempt did not go as planned. I laid out all my symptoms (again) and requested referral to the specialist in the practice. No such luck. The practitioner I saw that day suggested we change my birth control or put me on a drug that’s also used to treat prostate cancer. I couldn’t believe these were the only options presented. I cried in that office and felt completely dismissed. But I stood my ground.
With my older sister’s voice in my ear, I advocated for myself. Through tears, I refused those as solutions and didn’t back down on getting a referral to the specialist. I succeeded. A few weeks later, I was seen by the specialist who described my case as “classic.” Surgery was scheduled for the following month.
The Next Chapter
I wish I could say that that’s where my endometriosis journey ended—with a diagnosis and a successful six-hour surgery. Instead, its where my healing journey started. I learned to speak up for myself in medical settings and I gained confidence to ask questions and ask for help.
Things resolved for a blissful year and a half before new issues emerged. This time, aching in my legs and back, severe constipation, and more pain. Just a few more of the hallmarks of endometriosis. The hardest part of finding myself back in pain was the realization that what I’d been experiencing my whole life wasn’t a collection of symptoms, but rather a chronic disease. One that I’ll always have.
This new bout of pain got so bad that my husband and I had stopped having sex. Major problem when you want to start a family. Even if I didn’t scream in pain with penetration, we knew we faced an uphill battle when it came to conceiving and carrying a child to term. Just more of the joys of endometriosis.
Building a Team
I didn’t want to be in pain though, I wanted to keep living. So, with the confidence I’d amassed since my last foray into finding treatment for this disease, I set out to add to my team. I found myself an amazing pelvic floor physical therapist who helped me with daily exercises, and even had me bring in my husband in for some hands-on guidance to help us get frisky again.
In addition, I sought out a massage therapist who has a solid understanding of the needs a body with endo has. Add to that a fantastic therapist, and of course the guidance of my OB/GYN, and I finally felt heard and supported.
I don’t know what lies ahead for me or how this disease will shape my life next. Right now, I’m enjoying a lull in symptoms as I head into my 37th week of pregnancy. Yup. That baby that felt so far out of reach will be joining us shortly.
What I do know now is that there’s no shame in talking about periods and all their bloody realities. That women’s pain is real and deserves attention and consideration. And that I will advocate for myself and for others to get the treatment and validation they need.
