Raising awareness about endometriosis: Not just a conversation for women
Special to The Union
March is Endometriosis Awareness Month, and Nevada City native Michelle Litton Ogaidi is working hard to educate friends, community members, and others about the disease which affects 10 percent of women worldwide.
Ogaidi began suffering from painful periods at the age of 13. Though her discomfort increased dramatically over the years, she was not officially diagnosed with endometriosis until she was 30.
Those seventeen years of pain, confusion and fear are what motivates Ogaidi now.
“We should be talking about painful periods. It isn’t taboo… it is important to know that pain isn’t normal, and that help is available,” says Ogaidi.
There are few specialists in the endometriosis field, and Ogaidi credits the knowledge and compassion of Grass Valley OB/Gyn Richard Goddard, MD, for her diagnosis.
“I was so lucky that Dr. Goddard saw my suffering and the severity of my case, and referred me to my specialist. Simply being diagnosed enabled me to seek and find relief from the constant pain and confusion,” she says.
According to that specialist, Camran Nezhat, MD, of Palo Alto, endometriosis is a chronic estrogen-dependent disease that occurs when the lining that grows in the uterus, the endometrium, grows outside of the uterus. It can attach itself to organs and joints, causing incapacitating pain, organ failure, infertility, and other severe medical consequences.
The U.K.’s National Health Service (NHS) actually lists endometriosis in the top 20 most painful health conditions one can have.
Symptoms include extremely painful and heavy periods, pelvic pain not associated with monthly cycle, infertility, hormonal imbalances that severely affect emotional well-being, chronic abdominal bloating, and pain in lower back, hips and other joints.
In Ogaidi’s case, she has undergone three surgeries to remove endometriosis from her bladder, ureter, fallopian tubes, ovaries and perineum. In extreme cases, endometriosis has been found in the lungs, eyes and brain.
Ogaidi is sharing information through her social media platforms this month to inform others about education and diagnosis. She wants men and women alike to understand the condition because she feels diagnosis and support are so important.
The disease, despite its acute symptoms, is hard to diagnose. The only way to definitively diagnose endometriosis is through surgery and biopsy of the tissue.
Because the surgery is costly and invasive, it is often avoided, and the median delay for a woman from her first symptoms to diagnosis is 7.5 years.
There are currently an estimated 8-9 million women in the US who suffer from endometriosis. The disease is the most common cause of chronic pelvic pain in adolescent girls, and period pain continues to be the leading cause of school absences in adolescent girls.
Though the cause is still largely unknown – it is believed that there is a genetic link to the disease.
While there is still no cure for endometriosis, treatment includes laparoscopic surgery (to remove the tissue) or ablation surgery (to destroy the lining of the uterus), as well as hormonal therapies, stress reduction, diet, and pain management using opioids.
Ogaidi is dedicated to educating those within the health care industry as well, so other women will be able to access the care they deserve.
“Many women have experienced years of stigma, hearing that they have ‘made up’ their symptoms,” she says. “Diagnosis gives women confidence that help is available and helps them to make informed choices about fertility issues.”
Endometriosis doubles the risk of infertility in those under 35.
Ogaidi will be sharing her personal story as a guest speaker at the Worldwide EndoMarch Charity Gala in San Francisco on March 30. The organization’s primary goals are to petition Congress to require endometriosis to be taught in high schools nationwide by 2020, and to fund new diagnostic procedures which will not require surgery.
But Ogaidi has one primary message. “Do not be embarrassed to discuss the symptoms of endometriosis. Women, talk to your doctor, your gynecologist, or a specialist – talk until you are heard. And men, talk with the women in your life. This disease affects everyone. The man dealing with his daughter or wife’s endometriosis is a special human.”
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