Stage 4 Endometriosis: Rebecca’s Decade-Long Fight for Answers and Relief

Jenna Jones
Jun 27
4 min read

Updated: Jul 7

Rebecca spent more than ten years searching for answers to the mysterious pain, heavy periods, and fatigue that regularly disrupted her life. It wasn’t until she was 30 years old that she finally received an accurate diagnosis: stage 4 endometriosis.

Her journey to that point was marked by emergency room visits, misdiagnoses, medical gaslighting, and a series of invasive procedures that didn’t bring the relief she hoped for.

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The First Signs of Endometriosis

"I started having symptoms back in 2011, when I was a freshman in college," Rebecca recalls. "One of the first moments I now recognize as endometriosis was when I ended up in the ER with sharp radiating pain in my abdomen and pelvis." Despite extensive imaging and blood work, doctors didn’t find anything and never asked about her menstrual cycle or considered it a gynecological issue.

Her early periods were irregular, heavy, and unpredictable. "I was 16 when I got my first period, and everyone told me it was because I was skinny and athletic. But looking back, I should have been changing tampons every hour. I just didn’t know that wasn’t normal," she adds.

A Decade of Being Dismissed

Over the next ten years, Rebecca experienced flare-ups of abdominal and pelvic pain, bloating, and unpredictable bleeding. She was often told to eat more fiber, drink more water, or that her pain was caused by ovarian cysts or digestive issues. It wasn’t until 2020, when she and her husband began trying to conceive, that she started tracking her symptoms more closely and realized something was seriously wrong.

"But doctors kept saying, 'You’re young, don’t worry about it.'"

"When you’re trying to get pregnant, you become very aware of your cycle," she explains. "My periods were heavier than ever. I’d bleed for three days, think I was done, and then days five through seven it would start again. But doctors kept saying, 'You’re young, don’t worry about it.' I wasn’t anxious. I was frustrated that no one was listening."

A Painful Wake-Up Call

In November 2020, Rebecca collapsed at work with excruciating pain. A CT scan couldn’t visualize her appendix, and an ultrasound found ovarian cysts, but doctors weren’t sure what was causing her symptoms.

"I told him I was 30 and trying to get pregnant. It was humiliating."

She was told to follow up with an OB/GYN. "It was COVID, so they couldn’t admit me. We just went home and waited," she remembers.

Multiple follow-up appointments brought more frustration. Some doctors didn’t read her chart. One male OB told her she was likely having her first period and then proceeded to explain how menstruation works. "I told him I was 30 and trying to get pregnant. It was humiliating," she says.

Her husband stepped in and wrote a letter to a provider they trusted. That Sunday evening, the doctor called. "She said, 'I think you might have endometriosis,' and explained we could only confirm it through a laparoscopy."

Stage 4 Endometriosis Diagnosis, But Not Relief

Rebecca had her first surgery in January 2021. Her OB removed some lesions and confirmed endometriosis, but left behind significant scar tissue. Despite being warned her appendix was in bad shape, it was not removed because the surgeon wasn’t available.

When her pain continued, she was prescribed Lupron, a hormone-suppressing drug. But due to a mix-up between the clinic and pharmacy, she was given the wrong dose of add-back therapy to offset side effects. For nearly three months, she suffered memory loss, hot flashes, joint pain, and worsening endo symptoms.

"I felt like I was holding my organs in place. It was terrifying," she admits. "Then the doctor finally told me, 'You’ve basically had no hormone support and I'm surprised you made it this long.'"

It took three more months for the medication to leave her system. An ultrasound tech eventually referred her to a true endometriosis specialist, Dr. Megan Menny, at Ohio Health. "She looked at my surgical photos and said, 'I’m afraid you have stage 4 endometriosis.' And then she told me she couldn’t even tell what my previous surgeon had done," Rebecca recalls.

Excision Surgery and the Path to Healing

Rebecca underwent robotic-assisted excision surgery in November 2022. The surgeon spent six hours removing lesions from her bladder, rectum, pelvic walls, round ligament, both ovaries, and appendix. "My uterus was actually being pulled to the right side. It explained so much," she shares.

Two people in hiking attire smile near a small waterfall. They're wearing blue shirts and hats. The background features rocks and flowing water.

Two months later, she finally felt relief. "I could pee without pain. I could go to the bathroom without feeling like I was being stabbed. And I could run again. That hadn’t been possible in years."

She now sees her specialist every six months and remains symptom-free.

Her Advice to Others

"If you're experiencing chronic abdominal or pelvic pain, especially if it’s around your cycle, you have to advocate for yourself," Rebecca urges.

She emphasizes the importance of finding a specialist in endometriosis excision surgery. "It shouldn’t take 10 years. And you shouldn’t have to bring a man with you to be believed. But if that’s what it takes, bring the support. Keep pushing until someone listens."