After 31 years of unbearable pain, I was diagnosed less than two months ago at age 43 with stage IV endometriosis. Though the surgeon excised a huge amount of the disease from my pelvic region and believes he got it all, I’m still in pain today. It likely stems from a fist-sized fibroid found inside my uterus that he couldn’t remove during that surgery. He will address that issue in the coming months. For now, I at least have some peace knowing what’s happening inside of me and that I’m not crazy.
I was 11 when I got my first period, and 12 when it started hurting far worse than what I’d felt that first year. When my cycle hit, the pain nearly knocked me out. I struggled to get out of bed. I lived with my grandma, who had to pick me up from school at that time every month because of the agony I was in.
“You know, I remember that I used to have that kind of pain,” my grandma once told me. She was so understanding and empathetic, and I felt a little better knowing she’d experienced it, but she didn’t know what to do. It wasn’t something anyone in her generation discussed or knew how to handle. She just pushed through it, so I did too.
My friends didn’t know how to handle it either, since none of them could relate to that level of pain. I hardly had a social life. I couldn’t participate in most school extracurriculars. My stomach bloated at times to the point where I looked six months pregnant. My bowels hurt. I was anxious and depressed. I had to arrange trips to the beach around my period because I bled so much.
I bounced from doctor to doctor, at least seven over the years. They were all genuinely nice, but uninformed and unsure of what to do for me. They each told me it was normal, part of being a teenager. “But it’s supposed to hurt this badly?” I asked repeatedly. The answer was always yes, and birth control was their only solution, which never helped. They wouldn’t order blood tests, ultrasounds, or any other scans. I didn’t get my first scan until about two years ago. They said I had cysts, but that they’d go away on their own.
I fought through my symptoms with high doses of whatever over-the-counter pain medication I could find. In my 20s, I found that an occasional glass of liquor often eased the pain, not exactly an ideal remedy. I accepted this as my life for five to six days every month.
It was horrendous. Terrorizing. Disheartening. Emotional. Isolating.
I had my first miscarriage in my 20s. I had a second one in my 30s. Through each heartbreak, I assumed it was just something that happened because it happened, with no real explanation. Like so much of what I’d been through, I accepted it as the way I was and that having kids was something I wouldn’t be able to do. I didn’t know there was potentially a disease behind it.
Not until a couple of years ago, after I was diagnosed with the cysts, did I learn through my own research about endometriosis. But even then, I was afraid to bring it up to my doctors. Why would they even listen to me? They never did before. They aren’t going to know what I’m talking about. That’s how much their years of dismissing my pain got into my head.
This year, I finally found a new doctor near my home who told me before he did an ultrasound and surgery that I likely had endometriosis. The surgery confirmed it. When I woke up in recovery, I felt angry, confused, sad, and relieved all at once.
Angry that I’d been dismissed for more than 30 years.
Confused that I was still in pain.
Sad that so many women have to suffer as I have.
And relieved that I could at least attach a name to my suffering.
I’m looking forward to my next appointment soon, where we will see if I’ve recovered any better and discuss all options for removing the fibroid, including a hysterectomy. Whatever it takes to end my pain and bleeding, I’m on board. I need this to end.
With a long road still ahead, and while I continue to fight for myself, I’m sharing my story now to help you fight for yourself. We need more voices, and I’m eager to share mine. You may not know me, but I know what you’re going through, and I care about you! You shouldn’t have to suffer this way. Keep fighting to be heard. Keep fighting for that diagnosis. Keep fighting for that validation. You are brave, bold, and beautiful, and you deserve only the best!
*Patient stories submitted to EndoFound.org are the patient's views, not necessarily those of the foundation. All testimonials are from real patients, may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.
