"Some women just have bad periods.”
I heard those words the first time I told a gynecologist how excruciating my menstrual cycles had become. At age 25, I’d spent the previous weekend on my bathroom floor, vomiting from the pain and desperate for relief.
It took three more appointments before I was finally able to convince this doctor to at least perform an ultrasound. Only then did he admit something must be wrong.
“Your ovaries look like hell,” he said.
His solution? That I get a complete hysterectomy – without providing any insight into what might be causing the issues I was experiencing.
I knew it was time for a second opinion. And, after exploratory surgery, my next doctor provided me with a diagnosis that changed my life: endometriosis.
Understanding Endo
The Office on Women’s Health (OWH) describes endometriosis (often referred to as endo) as a condition where tissue similar to the lining of the uterus grows outside the womb. These endometrial implants can occur anywhere: on the fallopian tubes, the ovaries, even on the intestines and other organs.
When a person with endometriosis begins their menstrual cycle, those endometrial implants shed and bleed just like uterine tissue does. The problem is that that bleeding doesn’t have anywhere to go. So it scars over, creating inflammation and pain – sometimes even making various organs fuse together.
“Symptoms vary and are frequently wide-ranging and often start early in life,” says Michelle E. Marvel, executive director of the Endometriosis Research Center (ERC), a nonprofit in Delray Beach.
Those symptoms include pelvic pain, painful periods and sex, mittelschmerz (painful ovulation), heavy or irregular bleeding, nausea, bowel or bladder pain or symptoms, painful urination, diarrhea and constipation.
Depending on the location, amount, depth and size of a patient’s endometrial tissue, the endometriosis is categorized into one of four stages: one (minimal), two (mild), three (moderate) and four (severe).
So what causes endometriosis? The jury is still out.
“Researchers have yet to agree on the defining causes of the disease, though emerging research implicates stem cells, genetics and dysfunctional immune activity,” Marvel explains.
The National Institute of Health (NIH) identifies endometriosis as one of the leading causes of female infertility, impacting between 25 percent and 50 percent of infertile women, and the OWH states that as many as 11 percent of American women between the ages of 15 and 44 are impacted by endometriosis. Worldwide, about 176 million women are affected by it, according to the American College of Obstetricians and Gynecologists (ACOG).
But it’s not just women who are affected, says Marvel: Endometriosis can occur in non-menstruating teens and gender-diverse individuals. There have even been rare cases of men being diagnosed with endometriosis, with masses appearing in the testicles.
The Diagnosis Delay
Many of those with endometriosis suffer for years – an average of seven, according to studies – before being diagnosed. Tabitha Britt of New Jersey had to wait nearly 14. She was 10 years old when she began experiencing what she describes as extremely painful cramping with very heavy flow.
“I would have to change my pad several times within just one class period,” she recalls.
But her doctors were unwilling to acknowledge what she was experiencing.
“No one would listen to me,” Britt says. “My mom has endometriosis, so I would go in telling the gyno straight out, ‘I think I have endometriosis. Please help me navigate this.’”
This diagnosis delay has several causes. First, endometriosis can be initially mistaken for other diseases, Marvel says, such as pelvic inflammatory disease, a bladder infection or irritable bowel syndrome.
On top of that, current diagnostic tools are invasive. The only way to officially diagnose endometriosis is through exploratory surgery, which isn’t an option that most doctors or patients are quick to choose.
Then there’s the fact that doctors often dismiss patient complaints.
“Unfortunately, the statistics show that women’s pain in general is still dismissed, and period pain is still taboo and dismissed as ‘women problems,’” says Dr. Andrew Cook, founder and medical director of Vital Health Institute in Los Gatos, California, one of the country’s leading endometriosis experts.
At least seven gynecologists shrugged off Britt’s symptoms before she found a urologist in New York who was willing to help her.
Trouble With Treatment
At the moment, for those with endometriosis, there’s not much hope for lasting relief.
“Minimally invasive laparoscopic excision surgery remains the gold standard for diagnosis and treatment, ideally performed in the specialty treatment setting or performed by an advanced surgeon,” Marvel says.
Unfortunately, most women don’t have access to endometriosis specialists or those familiar with excision techniques – especially not when they’re first presenting with symptoms. They go to their gynecologists, not even knowing they should be looking elsewhere.
“Women are given birth control and outdated palliative treatments like hormonal suppressants that only temporarily relieve symptoms without correcting the underlying disease and root issues,” Dr. Cook says.
Although many doctors are truly trying to help, they often lack the tools and knowledge to effectively treat the disease.
“Surgical treatment of endometriosis, especially stage three and four endometriosis, can be technically the most difficult surgery encountered – even more difficult than many types of cancer surgery,” Dr. Cook explains. “It is inappropriate for general OB/GYNs to be expected to treat anything more than the basics of this disease. OB/GYN physicians are primary care doctors, not subspecialists.”
What We Know
Although experts remain in the dark about some aspects of endometriosis, recent research has yielded helpful findings, including the fact that the condition is far more than a hormonal problem that can be treated with synthetic hormone drugs, Dr. Cook says.
“Endo is an inflammatory condition that has roots in many things that disturb several systems in the body.”
He points to a recent study that found macrophage activity in women with endometriosis, implicating the involvement of the immune system.
But there’s great need for more unbiased research, he says – studies that aren’t funded by drug companies seeking to market and sell medications.
Moving forward, Marvel would like to see endometriosis research focus on “safer and more effective therapies that can eliminate the actual lesions, prevent recurrence and effectively relieve pain.”
That’s something they’re actively working toward at the ERC in Delray, with a particular focus on research surrounding a new investigational drug that endometriosis patients can learn about (and possibly sign up for) at ResearchMyEndo.com.
Fighting For Change
Only recently has endometriosis become part of the national health conversation, and many celebrity endometriosis sufferers are to thank for that. Actress Jamie King shared how it contributed to her struggles to conceive, actress Lena Dunham documented the hysterectomy she opted for as a result of endometriosis and TV personality Padma Lakshmi started the Endometriosis Foundation of America to advocate for those struggling with the disorder – including herself. Plus, singer Halsey, dancer Julianne Hough and actress Tia Mowry have all opened up about their experiences with endometriosis.
“There is an active patient community and many nonprofits who are raising awareness, from Endo What? – [an organization that] makes educational videos and documentaries – to patient protests requesting [that ACOG] change their outdated standards of care,” says Dr. Cook. “Progress is slow due to Big Pharma involvement and funding behind ACOG and research focused mainly on promoting and selling their drugs, but patients and a select few doctors are not giving up the fight.”
This type of advocacy is crucial, Marvel says, especially because “we have lost several young women to suicide because of this puzzling disease; it is imperative that we raise awareness, educate and provide support.”
I understand that struggle all too well. After my failed attempts at IVF – when I dealt with physical pain that seemed like it would last forever – I wasn’t sure how I could go on.
But then I found Dr. Cook. My last surgery was nearly a decade ago now. And, while my periods aren’t perfect, they’re manageable and don’t require prescription painkillers or additional hormone treatments.
Finding the right surgeon truly gave me my life back. And, for that, I’m thankful every day. O