Endometriosis is difficult to diagnose, with women often being told for years that they are experiencing their 'normal period.' According to the Endometriosis Foundation of America, it affects one in ten women.
During Endometriosis Awareness Month, Dr. Gerald Harkins, a gynecological surgeon at Penn State Milton S. Hershey Medical Center, is working to get the word out that women with endometriosis do not have to suffer.
"We want to empower women to ask questions and get their questions answered," Harkins says.
Endometriosis is a disease of the female reproductive system where the glands that normally grow inside the uterus are also implanted on the outside, causing severe abdominal pain during menstruation. In some cases, it is found on other organs in the abdominal cavity such as the ovaries, bladder and bowel.
Symptoms and timing of symptoms vary from patient to patient, but Harkins says debilitating periods that cause missed work or school and that require pain medication may indicate endometriosis. Additional symptoms can include pain during intercourse, painful bowel movements or urination during menstruation, excessive bleeding, fatigue and infertility.
While there are a few theories as to what may trigger endometriosis, the actual causes are not known. There's also no indicator that explains why some women develop it and others do not. Endometriosis is also difficult to diagnose.
"There's no blood test for it and it can't be diagnosed by ultrasound, CT scan or MRI," Harkins says.
Because of this, many women are not diagnosed for six to ten years after they've initiated a conversation with their primary care doctor.
"Many women make their complaints to their family doctor or primary care doctor and are told everything's normal, it's just your normal, painful period and you have to live with it," Harkins says.
Once diagnosed, treatment usually includes hormonal therapy using birth control pills, estrogen or progesterone and possibly surgical excision. There is no cure, but endometriosis is manageable with treatment that can provide a very good quality of life.
"In some women, endometriosis is quiet and doesn't change over their lifetime or cause a lot of damage or problems," Harkin says. "Some women's endometriosis is quite damaging to them and can be invasive and can invade the bladder or bowel. That type of aggressive or invasive endometriosis has to be surgically removed."
He recommends getting a second opinion and seeing an endometriosis specialist if a doctor is not addressing the problem properly. Harkins notes the Medical Center has a team of specialists who work together to treat endometriosis, including colorectal surgeons, urologists, gastroenterologists and anesthesiologists.
"It's important that they have the correct surgery done that both maximizes the excision of the disease and maintains their protection for fertility, if that's important to them," he said.
Harkins suggests that people seeking information should join an online community - the Central PA Endometriosis Support Network - started by one of his patients, Jessica Knouse. There, women can share information and resources, including diet and exercise tips, for anyone who may be living with endometriosis.
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