THE SPECIALIST: Dr. Suzanne Fenske
The director of the pelvic pain center at Mount Sinai , Dr. Suzanne Fenske specializes in minimally invasive gynecologic surgery and treating chronic pelvic pain. March is endometriosis awareness month.
WHO’S AT RISK
Even though as many as 200 million women around the world are affected by endometriosis, it’s often called “the invisible disease” because awareness is low and many patients go undiagnosed.
“Endometriosis is a condition in which endometrial tissue — the lining of the uterus — implants elsewhere in the body, often on the ovaries, the bowel, the bladder or anywhere in the abdomen,” says Fenske. “Endometriosis is the most common cause of chronic pelvic pain, which is defined by pain anywhere from the belly button and down that has gone on for six months’ duration. It can cause enough pain to affect women’s ability to function or their sex lives.”
Doctors estimate that as many as 1%-8% of women in their childbearing years may have endometriosis.
The cause of the disease is yet to be identified. “There are many different theories. Endometriosis could be caused by menstruating into the abdomen, it could be immunological, it could be genetic, or it could be spread by the lymphatic system,” says Fenske.
“There is another theory that it is due to the cells elsewhere in the body becoming the same cells as the ones that line the inside of the uterus.”
The risk factors are extremely broad. “Endometriosis is most common in women aged 18 to 45, but the risk factors are just being fertile and being a woman,” says Fenske. “This condition affects women from the onset of menses until menopause.”
SIGNS AND SYMPTOMS
The number one presentation of endometriosis is pelvic pain. “This can take the form of general pelvic pain, painful periods, pain with intercourse, and infertility,” says Fenske. “The theory is that if you have endometriosis, you’ve probably had it since you began menstruating, but we’re not yet sure whether or not it’s a progressive disease. Some patients’ pain can become more dramatic over the years, while others’ can stay steady.”
A common pathway to diagnosis is that a woman visits the gynecologist for a routine screening and mentions having painful periods. “Sometimes, the doctor will start out by prescribing birth control pills or even ibuprofen to control the pain,” says Fenske. “When that’s not enough, the next step is laparoscopy, a minimally invasive procedure that uses a camera to visualize the area and takes biopsies. As yet, laparoscopy remains the only way to diagnose endometriosis.”
Currently, there is no cure for endometriosis. “Our treatments focus on trying to keep the symptoms tolerable,” says Fenske. “The treatment depends on the patient’s symptoms.” Modifying diet and exercise have been shown to help. For instance, yoga can help some patients tolerate the pain, and there’s some suggestion that following a particular diet might help.
For many patients, the first round of treatment is medical. “Estrogen production is the driving factor for causing the symptoms, so birth control can help suppress these hormones, and ibuprofen can help with the pain itself,” says Fenske. “If you have severe symptoms, we can give meds that put you into a temporary menopause to suppress ovulation and help with symptoms.”
Surgery is the other primary option. “Surgery can range vastly, from a minimal surgery that effectively takes a few biopsies, to a major resection that can even require removing part of the bowel or appendix — basically, surgery can remove a small amount of tissue, or a very large amount,” says Fenske. “We take out all of the endometriosis that we can see, and some women will need to go through multiple resections over the course of a lifetime.”
For most patients, surgery significantly improves pelvic pain. “These surgeries are usually done as an outpatient procedure that lasts anywhere from one hour to four,” says Fenske. “Most patients go home the same day, take pain medications for two days, and are back to their job and life within a week.”
There is a series of new drugs and surgical advances that promise to improve endometriosis treatment.
“A new medication class called aromatase inhibitors work by preventing the creation of estrogen. Studies show they’ve been effective, often in combination with other medications, including the birth control pill,” says Fenske.
“Over the past few years, the Da Vinci robot company has created a technique called the Firefly, which lights up the areas that have endometriosis, which is extremely helpful, since otherwise our ability to visualize endometriosis is pretty low.”
QUESTIONS FOR YOUR DOCTOR
Any patient seeking treatment for pelvic pain should ask, “What are the expectations for this therapy, and how long will it work?” Some medications can only be taken for a limited period of time. A shrewd followup is, “What are my options for avoiding the side effects of medication?” Some women will want to ask, “How will this treatment affect future pregnancy?”
“A lot of patients are happy to know that there is a diagnosis that explains why they’ve been having pelvic pain, often for years,” says Fenske. “And while we can’t cure endometriosis, there are lots of different treatments available, and we absolutely can improve your quality of life.”
WHAT YOU CAN DO
Get informed. There is a plethora of organizations dedicated to spreading endometriosis awareness, many of them with strong presences on the Web. Try the Endometriosis Foundation of America (endofound.org), the Endometriosis Association (endometriosisassn.org) and Mount Sinai (mountsinai.org/patient-care/service-areas/obgyn-and-reproductive-services/areas-of-care/gynecology).
See an expert. In the New York area, there are lots of doctors who specialize in endometriosis. “You want to see someone very familiar with this disease,” says Fenske.
Make lifestyle modifications. Some patients find relief by following a gluten-free or anti-inflammatory diet, and others find that yoga and exercise help control the pain.