Experts say endometriosis is poorly understood, better treatment plans are needed

While approximately 190 million people around the world are living with the disease, 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 topic that goes unnoticed in medical school, even though it affects at least 10% of the female population and causes significant morbidity in this population,” Dr. Austin Findleyan OB/GYN who specializes 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 significantly affect work productivity, social life, intimate relationships and mental health, and lead to substantial societal costs”, Dr. Catherine Allaireco-author of the journal and physician in the department of obstetrics and gynecology at the University of British Columbia in Canada and the BC Women’s Center for Pelvic Pain and Endometriosis, Vancouver, British Columbia, said in a statement from press.

Endometriosis can cause a variety of symptoms, including painful cramps, pain during intercourse, bloating, nausea, bleeding, digestive problems, spotting between periods, and infertility.

The World Health Organization Remarks that due to the wide range of possible symptoms of endometriosis, it can be missed even by healthcare workers, resulting in a long delay in diagnosis.

“Even among OB/GYNs…if you’re a general OB/GYN and you’re dealing with pregnant patients, and you’re dealing with all sorts of other issues, or you’re taking a regular primary care doctor or doctor regular GP, they will not be as aware of this diagnosis. It’s just not a diagnosis that people really think about,” said Dr. Clara Paikthe 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, many doctors mistakenly believe that it’s not really a disease process and more of a psychological thing that women experience pelvic pain,” he said. she told Healthline.

Arriving at a diagnosis of endometriosis is not straightforward. Some guidelines suggest that it is possible to make a clinical diagnosis of endometriosis based on symptoms, physical examination, and imaging.

However, the American College of Obstetricians and Gynecologists states the only definitive way to diagnose endometriosis is through laparoscopic surgery.

Endometriosis can be found on the fallopian tubes, ovaries, vagina, cervix, vulva, bowel, bladder, rectum, and other parts of the body.

Endometriosis is incurable, and treatments focus on managing symptoms.

Hormonal contraception is a common first step in treatment. Surgery can also be used to eliminate endometriosis.

In the United States, both ablation and excisional surgery are used.

Research suggests that excision surgery is more effective in reducing pain symptoms and among many experts it is considered the gold standard of surgical care.

Yet many women still undergo removal surgery.

“The ablation issue is really a holdover. I don’t think anyone who’s really knowledgeable about proper surgical management is still seriously claiming that removal is the right thing to do,” dr. Daniel Ginn, an expert in minimally invasive gynecological surgery at the University of California, Los Angeles, told Healthline. “The nuance here… is for really superficial disease, ablation might be effective. But still the problem with the endometriosis we’re talking about is that a lesion can be a bit like an iceberg. What you see on the surface that seems superficial may not actually be. So if all you’re doing is burning off the top of that iceberg, you still have all that mass that’s underneath and untreated,”

The lack of clarity and training in proper surgical techniques, according to Findley, is problematic.

“The extent of the disease and the quality of surgery that patients receive vary enormously,” he said. “The way I explain this to my patients is that I try to treat the disease like cancer – remove any visible disease while respecting reproductive goals. To be really good at it, you have to be able to access the retroperitoneal space, the area where the blood vessels, nerves, ureters are, as well as being able to operate on the bladder and bowels.Most obstetricians/gynecologists are not able to do this and they feel more comfortable by superficially burning off (removing) the disease.

“The women have no choice. They are taken to the [operating room] by people not qualified to eliminate their disease, being told that it cannot be eliminated and not being referred to specialists who can treat them,” Findley said. “Often they are brought back into the operating room over and over by the same person performing shoddy surgery…Most doctors don’t discuss excision versus ablation and honestly, I don’t know if most even realize there is a difference. This is one of my biggest frustrations with my own specialty. Patients are told it’s dangerous to have surgery to remove their endometriosis and what they don’t realize is that it’s not dangerous (it’s complicated and difficult), but that their doctor is unable to do this operation and that they are not enough to be sent to people who can help.

For Stickney, the pain from endometriosis was so severe that Stickney’s doctor performed a hysterectomy.

However, this surgery is not a cure for endometriosis and symptoms may return after the procedure.

“I felt like people were focusing more on my fertility than the pain I was feeling. When I wanted to try to conceive, I was told to forget about endometriosis and focus on pregnancy. It’s impossible – getting pregnant doesn’t cure endometriosis,” Stickney said.

“I wish I had been treated like someone responsible and mature enough to decide it was okay if I never got pregnant. Patients deserve an agency when it comes to their bodies,” Stickney said. .

Stickney is one of millions of people around the world who struggle daily to find answers to their pain.

“So many patients are…victims of patriarchal attitudes that tell a woman she is too whiny, too much, too weak, too something, when in fact she has a very real illness 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 think that patients with endometriosis deserve better care. It has to start with better education and training in diagnosis and to disease management, a greater willingness to refer to specialists, a high index of suspicion, and that needs to be a priority for research,” he said.