Endometriosis Symptoms Ignored: Molly’s Story of Gaslighting and Surgery

Molly’s endometriosis journey is one that many women will find all too familiar—years of unexplained pain, medical gaslighting, and an eventual diagnosis that changed everything.

This is not intended to provide medical advice. The interview has been edited for clarity and length. Please consult your doctor for any health-related concerns.

Despite countless visits to doctors and specialists, her symptoms were often dismissed or misunderstood, leading to worsening physical and mental health. It wasn’t until Molly underwent excision surgery that she finally found relief and validation. In her own words, Molly shares her journey to diagnosis, the toll it took on her mental health, and how excision surgery changed her life.

"I was gaslit so, so badly when I knew internally there was something wrong."

Early Endometriosis Symptoms and the Search for Answers

Molly’s symptoms began early in her life, but getting a diagnosis proved to be a long, difficult process in the United Kingdom, where she lives. "My symptoms actually started back when I was 16. It didn’t get bad until about 16, and it was just excruciating pelvic pain. Painful, but only if it's really, really bad. Upper back pain and chest pain. Problems kind of all over."

Despite frequent hospital visits, doctors struggled to figure out what was wrong. "I was going in and out of A&E a lot... they couldn’t ever really figure out what these symptoms were."

In addition to pelvic pain, Molly experienced severe gastrointestinal issues, including a bowel obstruction at age 16, which was initially misdiagnosed.

"I had an adhesion grow on my intestine... they just thought, ‘oh, she’s had a bowel obstruction, we’ll do emergency surgery.’"

It wasn’t until years later that she discovered the obstruction was caused by endometriosis.

Molly's Endometriosis Symptoms

• Severe pelvic pain

• Chronic lower back pain

• Upper back pain

• Hip pain

• Leg pain

• Nerve pain in various areas

• Chest pain

• Painful, heavy periods

• Gastrointestinal issues (including nausea, bloating, and bowel obstruction)

• Constipation and gas pain, especially before menstruation

• Pain during ovulation

• Sensitivity to certain foods, causing nausea

• Fatigue and dizziness

• Joint pain and possible hypermobility (related to Ehlers-Danlos syndrome)

• Diaphragm and chest issues, including shortness of breath

Medical Gaslighting and Dismissal

Like many with endometriosis, Molly encountered medical professionals who dismissed her pain or misattributed it to mental health issues. "I spent about four or five years just trying to get a doctor to believe me," she shares. "I was told by pain clinics that it was in my head, that my mental health was affecting my pain, and it was giving me psychosomatic pain."

"I read through my hospital notes and all the notes are saying, ‘Molly is just screaming and crying, we don’t know what to do with her.'"

Her symptoms worsened over time, and the lack of validation from the medical community was frustrating.

"I read through my hospital notes and all the notes are saying, ‘Molly is just screaming and crying, we don’t know what to do with her,’ and it’s like I was in so much pain."The constant gaslighting made it difficult for Molly to get the care she needed.

"I was gaslit so, so badly when I knew internally there was something wrong."

Medical Gaslighting's impact on her Mental Health

The combination of chronic pain and medical dismissal took a toll on Molly’s mental health, especially when doctors prescribed hormonal treatments that worsened her mental state."I was first put on the progestin-only pill, and that affected my mental health."

"I had all of the terrible side effects that you get from it, like depression and suicidal thoughts, and it really messed with my mind," she says. Molly felt stuck between managing her physical symptoms and preserving her mental well-being - a choice nobody should have to face.

When she brought the issue to her doctors, she says she was largely ignored. "They pretty much said, ‘You either pick pain or mental health.’ It’s so terrible."

Excision Surgery: A Turning Point

After years of searching for answers, Molly finally took matters into her own hands. She sought out a private specialist for excision surgery. "I found a private specialist," she says. "It was the best decision I’ve ever made in my life. We were so lucky to be able to go privately."

Her specialist confirmed what she had suspected all along—her pain was caused by endometriosis.

"My surgeon says that both of my ovaries were stuck on the left side... a lot of my organs were in places they shouldn’t have been, which suggested lots of adhesions."

Although she felt validated by the findings, Molly's endometriosis would likely not have advanced so terribly had she been believed earlier by her doctors.

The excision surgery finally brought some relief. "My pelvic pain is pretty much gone. I don’t suffer with really, really painful periods anymore."

Despite a challenging recovery, the surgery significantly improved Molly’s quality of life. "It wasn’t really until the eight- or nine-week point that I started to feel myself again," she says.

Advocacy and Self-Empowerment

Molly’s experience has reinforced the importance of self-advocacy, especially when dealing with a condition like endometriosis, which is often misunderstood or dismissed by the medical community. On average, it takes seven years to get an endometriosis diagnosis after symptoms start to appear according to Yale Medicine.

"I think we have to, especially as women, we have to advocate for ourselves, really, really stand up for our health and our rights because we deserve better care," says Molly.

Molly also stresses that no one should be made to feel that their pain is invalid. "Your pain is valid, even if doctors tell you it’s not."

Today, Molly is grateful for the diagnosis that finally validated years of suffering and for the community, she’s found online, where she connects with others who have faced similar challenges.

"I built an amazing community online. It’s just wonderful being able to share similar experiences with other women who’ve gone through the same thing."