- A review of current guidelines for endometriosis has sparked a debate of the treatment and management of the condition.
- Experts tell Healthline that the painful condition is misunderstood by the medical community and many times people with the condition aren’t believed.
- They say there is a need for better diagnostic techniques as well as treatment plans.
For Ruby Stickney, the pain around ovulation became unbearable.
“I… started having pelvic pain with exercise, bladder pain, and frequent urination around the time of my period. That was when I was done keeping my symptoms to myself,” Stickney wrote in a column in the Canadian Medical Association Journal.
“My daily symptoms, combined with society’s expectation to keep these parts of myself private, became unbearable, Stickney added. “I felt pressure to accept that my pain was normal and that I should be able to handle it. I don’t think I can fully encapsulate the loneliness, alienation, and exhaustion I experienced.”
Stickney is one of the 10% of women and girls around the world living with endometriosis.
Endometriosis can also affect an unknown number of people who are gender diverse and, in rare cases, men. Stickney identifies as gender fluid.
Endometriosis occurs when tissue that is similar to the lining of the uterus grows outside of the uterus.
Stickney’s personal account accompanies a review of the diagnosis and management of endometriosis, published this week in the Canadian Medical Association Journal.
While about 190 million people around the world live with the condition, experts say endometriosis remains poorly understood.
“There is so much we don’t understand about this disease, including how or why people develop endometriosis. It is a subject that is glanced over in medical school, even though if affects at least 10 percent of the female population and causes significant morbidity in this population,” Dr. Austin Findley, an OB/GYN specializing in endometriosis at The University of Kansas Health System, told Healthline.
The condition can have a significant impact on a person’s quality of life.
“Endometriosis can involve multiple organ systems and its symptoms are often chronic, which can affect work productivity, social life, intimate relationships, and mental health considerably, and lead to substantial societal costs,” Dr. Catherine Allaire, the co-author of the review and a physician in the Department of Obstetrics and Gynaecology at the University of British Columbia in Canada and the BC Women’s Centre for Pelvic Pain and Endometriosis, Vancouver, British Columbia, said in a press release.
Endometriosis can cause a variety of symptoms, including painful cramps, pain with sexual intercourse, bloating, nausea, bleeding, digestive disturbances, spotting between periods, and infertility.
The World Health Organization notes that due to the broad range of possible symptoms from endometriosis, it can be missed even by healthcare workers, leading to a lengthy delay for diagnosis.
“Even in among OB/GYNs… if you’re a practicing general OB/GYN and you’re taking care of pregnant patients, and you’re taking care of all sorts of other issues, or if you take a regular primary care doctor or regular general practitioner, they’re not going to be as aware of this diagnosis. It’s just not a diagnosis that people really kind of think about it,” said Dr. Clara Paik, the co-chief of the Division of General Obstetrics and Gynecology at the University of California Davis.
“In the larger picture of pelvic pain and chronic pelvic pain, a lot of doctors are under the misconception that it’s not really a disease process and more of a psychological thing that women get pelvic pain,” she told Healthline.
Reaching a diagnosis of endometriosis is not simple. Some guidelines suggest that it is possible to reach a clinical diagnosis of endometriosis based on symptoms, a physical exam, and imaging.
However, the American College of Obstetricians and Gynecologists states the only definitive way to diagnose endometriosis is through a laparoscopic surgery.
Treatment of endometriosis
Endometriosis can be found on the fallopian tubes, ovaries, vagina, cervix, vulva, bowel, bladder, rectum and other parts of the body.
There is no cure for endometriosis and treatments are focused on symptom management.
Hormonal birth control is a common first step in treatment. Surgery can also be used to remove endometriosis.
In the United States, both ablation and excision surgery are used.
Research suggests that excision surgery is more effective at reducing symptoms of pain and among many experts it is considered the gold standard of surgical care.
Yet many women are still receiving ablation surgery.
“The ablation question is really a holdover. I don’t think anyone who’s really up to date on appropriate surgical management is still making a serious case that ablation is the right thing to do,” Dr. Daniel Ginn, an expert in minimally invasive gynecologic surgery at the University of California Los Angeles, told Healthline. “The nuance here… is for truly superficial disease, ablation might be effective. But always the problem with endometriosis that we talk about is that a lesion can be kind of like an iceberg. What you see on the surface that appears to be superficial may in fact, not be. So if all you do is burn the top of that iceberg, you still have all of this mass that’s underneath and untreated,”
Surgery for endometriosis is challenging
Lack of clarity and training in appropriate surgical techniques, Findley argues, is problematic.
“The extent of disease and quality of surgery that patients receive varies wildly,” he said. “The way that I explain this to my patients is that I try to treat the disease like a cancer – remove all visible disease while respecting reproductive goals. To truly be good at this it requires skill in accessing the retroperitoneal space, the area where blood vessels, nerves, ureters exist as well as being able to operate on the bladder and bowel. Most OB/GYNs are not capable of this and they feel more comfortable only superficially burning (ablating) the disease.”
“Women are not given a choice. They are taken to the [operating room] by people unqualified to remove their disease, being told it can’t be removed, and not being referred to specialists who can treat them,” Findley said. “Many times they are taken back to the operating room repeatedly by the same person performing poor quality surgery… Most physicians do not discuss excision vs. ablation and honestly I don’t know if most even realize there is a difference. It is one of my biggest frustrations with my own specialty. Patients are being told it is unsafe to have surgery to remove their endometriosis and what they don’t realize is that it is not unsafe (it is complicated and challenging), but that their physician is incapable of doing that surgery and they are not fairly being sent to people who can help.”
Trying to find answers
For Stickney, the pain from endometriosis was so bad that Stickney’s doctor performed a hysterectomy.
However, this surgery is not a cure for endometriosis and symptoms can return following the procedure.
“I felt like people focused more on my fertility than on the pain I was in. When I was interested in trying to conceive, I was told to forget about endometriosis and focus on getting pregnant. That’s impossible — becoming pregnant does not cure endometriosis,” Stickney said.
“I wish I had been treated as someone responsible and mature enough to decide it was OK if I never got pregnant. Patients deserve agency when it comes to their body,” Stickney said.
Stickney is one of millions of people around the world battling daily for answers for their pain.
“So many patients are… falling victim to patriarchal attitudes that tell a woman that she’s being too whiny, too much, too weak, too something, when in fact, she has a very real disease that is very disruptive to her life,” Ginn said.
Findley argues that people with endometriosis need better care.
“There needs to be a change in the standard of care that patients with endometriosis receive. I just feel that patients with endometriosis deserve better care. It needs to start with us receiving better education and training in diagnosis and management of disease, more willingness to refer to specialists, a high index of suspicion, and it needs to be a priority for research,” he said.
Leave a Reply