Living With Endometriosis: A 12-Year Journey

For 12 years, Crystal Richardson went from doctor to doctor to understand what was causing the debilitating period pain she’d been living with since her late 20s. “I had very sharp pains during my period. It felt like my whole pelvic region was being squeezed,” says Crystal, who is now 40 and lives in Brooklyn with her 19-year-old daughter and partner. “It was excruciating.”

Over the years, Crystal’s pain became chronic. It was not uncommon for her to visit the emergency room for cortisone shots and pain medicine to ease the clenching feeling and tightness during her periods. Her menstrual flow was so heavy that she was anemic, making her fatigued, dizzy, and light-headed.

An appointment with gynecologic surgeon Dr. Eung-Mi Lee changed everything.

“When I first saw Crystal, it was clear she was in a lot of pain,” says Dr. Lee. “What struck me was that it had a huge impact on her quality of life in a way that made it hard for her to work and carry out normal activities.”

A Delayed Diagnosis

After her visit with Dr. Lee in September 2023, Crystal learned that she had endometriosis, in which tissue similar to the lining of the uterus, called the endometrium, grows outside the uterus. Endometriosis also can cause difficulty getting pregnant, inflammation, and scarring, and affect nearby organs like the appendix, bladder, and bowel if it spreads.

Compounding her pain, Crystal also had adenomyosis, which Dr. Lee describes as “a cousin to endometriosis.” With endometriosis, the endometrial-like tissue finds its way to outside of the uterus, while with adenomyosis the tissue grows into the uterine muscle.

Adenomyosis can cause painful and heavy periods, pelvic pain, pain during sex, and a feeling of fullness or bloating. It can also cause the uterus to enlarge.

Over the years, Crystal consulted with numerous doctors. Some suspected endometriosis and performed ultrasounds. “I was told, ‘we didn’t find anything,’” Crystal says. “I was even getting, ‘maybe it could be in your mind.’”

Delayed diagnosis is not uncommon, says Dr. Lee. Research shows that endometriosis is characterized by delays of up to 11 years from the onset of symptoms to a diagnosis.

Dr. Lee explains that while ultrasounds are helpful and rule out other conditions, “It can’t tell us whether or not people have endometriosis,” she says. “Unfortunately, there are no great screening tools, and confirmation of the disease is made by surgery.

“A lot of this pain gets normalized,” she adds. “Unfortunately, this leads many to deal with the pain in silence.”

Crystal Richardson, left, credits Dr. Eung-Mi Lee, right, for a life-changing  diagnosis of endometriosis.

The Road to Treatment

Dr. Lee took Crystal’s medical history and performed a pelvic exam and ultrasound as the first steps toward a diagnosis. Crystal also had a magnetic resonance imaging, which showed adenomyosis and enabled Dr. Lee to see if Crystal’s nearby organs were affected by her condition.

Treatment ultimately is case-specific. For mild endometriosis and adenomyosis, non-steroidal anti-inflammatory drugs like ibuprofen can help manage pain, and hormonal therapy can help control bleeding and reduce pain. Over the years, Crystal was put on birth control pills and pain relievers but never found relief.

For those who do not find relief with medical therapy, laparoscopic surgery is a good next step, says Dr. Lee.

Because Crystal wanted to be finished with her periods and her adenomyosis was significant, she chose a hysterectomy. Crystal was not interested in having more children, so this worked for her. Dr. Lee notes, however, that a hysterectomy for endometriosis or adenomyosis is typically reserved for cases in which other treatments have failed, and there are fertility-sparing options for those who wish to become pregnant.

In November 2023, Dr. Lee performed Crystal’s hysterectomy — removing her uterus, cervix, and fallopian tubes.

During the surgery, she saw that Crystal’s endometriosis lined the surfaces inside her pelvis, and that her adenomyosis was so advanced that “she had a very enlarged and rounded uterus the shape of a grapefruit — which is not typical in a normal uterus. She also had a lot of scarring, likely from the combination of endometriosis, adenomyosis, and her previous cesarean section.

“I could see as soon as we went in for surgery,” says Dr. Lee, “why this would have the impact that it would.”

Living Life Without Pain

Today, Crystal no longer wakes up with anxiety about her pain, which is almost completely gone. She feels good enough to take daily walks, hit the gym, and run errands. She works as a school lunch helper and is excited to get back into hobbies like cycling.