WASHINGTON — By the time Victoria Makinde finished her story of pain, unanswered questions and confusion, there were tears and sniffles throughout the room of roughly 100 people gathered in the auditorium.
The 33-year-old Washington graphic designer told the mostly female group of the excessive bleeding and debilitating pain that stunned even her doctors. She had struggled with the illness from age 12. Most frustrating, she said, was her doctors’ inability to diagnose her problem.
“At times, I doubted myself,” Makinde said, “and I listened to the doctors who told me there was nothing wrong and it was all in my head.”
Makinde suffers with endometriosis, a disease many people have never heard of that strikes one in every ten women.
Eight other women joined her on stage at Howard University College of Medicine Saturday to tell their own stories of struggles with the disease as part of a worldwide effort to focus attention on the ailment.
The event was the local effort of the thousands of people around the world – from Argentina to Australia to France – who participated on the same day in what was called the EndoMarch. The march was founded in the District three years ago by three brothers, Drs. Camran, Farr, Ceana Nezhat, and their niece, Dr. Azadeh Nezhat.
After Makinde told her story, other women from the audience were invited to speak.
One woman, 29, told of how the disease had robbed her of the ability to have children. A 17-year-old said she was diagnosed with the disease two years ago. The pain causes her to miss school, she said.
Dr. Vanessa Nunes, a medical resident at Howard University Hospital, said she and her husband haven’t been able to have children so far because of the disease.
Dr. Hal Lawrence, a North Carolina obstetrician and gynecologist, told the audience of a young lady who had so much pain during her menstrual cycle because of endometriosis, “she actually became uncontrollable.”
“(Doctors) thought she had a psychiatric illness,” Lawrence said. “They wanted her to go see a psychiatrist.”
After doctors did a thorough examination, they discovered endometriosis had taken over one of the woman’s ovaries, he said, and after removing the endometriosis, her psychosis was cured.
Endometriosis occurs when tissue similar to the lining of the uterus is found outside the uterus on other parts of the body. It causes pain, excessive bleeding and can lead to infertility. It affects girls and women during their most productive years, and can impact all aspects of their lives – school, careers, finances, relationships and overall well-being.
Generally, the disease is found in the pelvic cavity. It can attach to any of the female reproductive organs, or any of the spaces between the bladder, uterus, vagina, and rectum. It can also be found also on the bladder, bowel, intestines, appendix or rectum.
Dr. James Robinson, director of Minimally Invasive Gynecologic Surgery at the MedStar Washington Hospital Center, talked about symptoms for women to watch.
“If you have nose bleeds that happen only when you’re on your period, you’ve got endometriosis in your nasal passages,” Robinson said.
Other symptoms that can occur during the menstrual cycle include blindness, bloody coughs and skin rashes.
Unfortunately, many doctors are unclear as to how endometriosis presents itself, he said.
“These are things that we have to teach our other doctors that don’t think about women’s health care to start thinking about,” he said.
Women may go years without being diagnosed, because they believe symptoms are a normal part of menstruation, the doctors attending the event said. Young girls may see their moms, aunts and other women in their lives go through similar symptoms and think nothing of it, they said.
Dr. Kevin Scott Smith, a minimally invasive gynecologic surgeon at Mid-Atlantic Permanente Medical Group, said the important part of curing and managing endometriosis is creating more awareness among men and women.
“If we had to create a campaign, it would be called ‘Ask About Endometriosis,’” he told the audience. “That’s everyone sitting here, that’s every medical student who is going to evaluate a female patient going forward, every resident that’s going to be treating, and telling your friends.”