Dr. Sheeva Talebian is haunted by how long “we’ve conditioned women to believe that debilitating pain is normal.”
It’s a “clinical failure,” she declared, and it’s a reason why symptoms of one tricky disease in particular are often unreported and misdiagnosed — sometimes until irreversible damage has already been done.
The board-certified reproductive endocrinologist and third-party reproduction director at CCRM New York told The Post that endometriosis — a progressive, inflammatory disease — takes an average of 10 years to accurately diagnose.
The World Health Organization estimates that 1 in 10 women of reproductive age worldwide have endometriosis. That includes influential women like Padma Lakshmi, Susan Sarandon, Chrissy Teigen and Lena Dunham, who famously underwent a hysterectomy at age 31 after a decade of less invasive surgeries to try to manage her severe pain.
Endometriosis symptoms, Talebian said, are often seen with other conditions like painful periods. But plenty of women with the disease have no history of painful periods or pelvic pain.
Symptoms can include fatigue, joint pain, shortness of breath, irritable bowels, urinary frequency and infertility — that’s hardly a complete list.
During the diagnostic process, many women undergo extensive workups — everything from colonoscopy and endoscopy to abdominal MRIs — “with no clear findings.”
“Quite frankly, even amongst gynecologists, this disease is still not fully understood or recognized,” Talebian said. “Therefore, even a gynecologist may miss some of the varying symptoms and pass these women off to other specialists for testing.”
The result? “Endometriosis has become one of the most common missed diagnoses,” she warned.
What is endometriosis?
Endometriosis affects women who menstruate, though certain factors can increase risk.
The disease causes tissue from the lining of the uterus to grow elsewhere in the body. That tissue — sometimes called implants, nodules or lesions — can be found on other reproductive organs but also on the bowels or bladder, and in extremely rare cases, on more remote areas, like the lungs.
Family history can increase risk, as can elements of your menstrual history, like if you got your first period before age 11, if your menstrual cycle lasts less than 27 days and if your periods are especially heavy and last more than seven days.
What makes endometriosis so hard to diagnose?
Aside from the murkiness of some symptoms, including some that aren’t clearly related to the GYN organs, Talebian said there are other explanations for the diagnostic difficulty.
The tools doctors use are still limited. “There is no good blood test or imaging modality that can detect endometriosis,” she said, and pelvic MRIs might not catch the disease in its early stages.
The only way to definitively receive a diagnosis is to undergo laparoscopic surgery of the pelvis and abdomen.
“By definition, endometriosis can not be seen inside the uterus” with a hysteroscopy, and often doesn’t show up on an ultrasound, Talebian said.
That’s why women shouldn’t breathe a sigh of relief with a clear hysteroscopy.
And unfortunately, the stage of the disease doesn’t always correspond to the severity of symptoms.
“Women with early-stage disease may have severe pelvic pain and infertility,” Talebian said. “Women with advanced disease may not have what they perceive as pain.”
Certain technological advancements mean doctors “are getting better at identifying clinical markers earlier.” But it often still comes down to taking patients’ concerns seriously.
“Truthfully, the challenge for endometriosis diagnoses to date hasn’t just been the science — it’s been the dismissal of symptoms early on before the disease progresses,” she said.
What happens if endometriosis is left untreated?
Unchecked endometriosis doesn’t just affect the uterus. It’s “a gamble with your future health.”
“In the most severe cases, we see what’s called a frozen pelvis, which is when chronic inflammation and scar tissue cause the ovaries, bladder and bowel to fuse together, distorting your internal anatomy,” Talebian explained.
It also has severe implications for fertility. Untreated endometriosis can “significantly diminish your ovarian reserve and physically block the fallopian tubes.”
Aside from surgery to remove the tissue patches, endometriosis treatments generally include pain medication and hormone therapy to stop the ovaries from making hormones, slowing the growth of the tissue.
That can involve birth control pills, progestin therapy and gonadotropin-releasing hormone (GnRH) medicines that temporarily induce menopause, according to Medline Plus.
How can women get their doctors to take their concerns seriously?
“To be very clear, when a provider dismisses your symptoms as ‘stress’ or ‘just a bad period,’ they are ignoring the biological data your body is sending,” Talebian said.
She recommends going into your next appointment with the following “game plan”:
- “Lead with your data. It is much harder to dismiss a pattern than a single complaint. Track your pain, your cycle and your digestion. When you can show a provider that your symptoms are cyclical, they will have the evidence they need to look deeper.”
- “Don’t normalize the abnormal. If your quality of life is suffering, it is not normal. If a diagnosis doesn’t account for your lived experience, it’s not the right diagnosis.”
- “Find the right expertise. Not every doctor is trained to connect the dots of complex endometriosis. If you aren’t being heard, you may need to pivot to a reproductive endocrinologist or an endometriosis specialist. Your quality of life should be the primary medical outcome.”
