Endometriosis: A condition surrounded by taboo, myths, delayed diagnosis and unreliable treatments

Although it affects up to 10 percent of women, endometriosis is often not talked about and fully understood. It is surrounded by taboos, myths, poor or late diagnoses, and unreliable treatments. Regardless of how common the condition is, one in ten women living with this gynecological problem may not have been diagnosed for up to nine years, as the symptoms mimic those of other conditions. This chronic condition arises when tissue, called the endometrium, grows in other places in the body. These growths can result in a chronic inflammatory reaction that causes pain or scarring with an effect on infertility.

As with any condition that is poorly understood and complex, many people avoid seeking help for the condition even though it has a profound effect on a person’s life, physically, mentally, and socially.

To help debunk misconceptions and myths about endometriosis, Iryna Ilyich, medical adviser at Flo Healthclears up some of the intricate misunderstandings about the condition.

1) Myth: It is easy to diagnose endometriosis

In Ireland, it is reported that on average it takes nine years to diagnose endometriosis, as the symptoms of the condition are similar to those of other disorders, such as irritable bowel syndrome or pelvic inflammatory disease. As such, symptoms alone are not enough to diagnose endometriosis.

“Several studies report an overall diagnostic delay of seven to nine years when it comes to endometriosis,” says Ilyich. “This delay can lead to deteriorating mental health and a poor quality of life due to chronic pain, higher healthcare costs, and worse outcomes from infertility treatment.”

Recognizing the impact that endometriosis can have on a person’s life highlights the importance of receiving a diagnosis as early as possible; and the only definitive way to diagnose endometriosis is through surgery.

“To diagnose endometriosis, a doctor would need to perform a routine exam,” Ilyich says. “It all starts with a pelvic exam during which the doctor manually feels or palpates areas of the pelvis for abnormalities. Then you’ll probably need a series of imaging tests, such as an ultrasound, computed tomography (CT) scan, or magnetic resonance imaging (MRI) to get a picture of the inside of your body. A standard ultrasound test will not definitively tell the doctor if the patient has endometriosis, but it can identify the cysts associated with it. For some, an MRI or CT scan can help with surgical planning, providing the surgeon with detailed information about the location and size of the endometrial implants.”

In some cases, a laparoscopy is needed to determine the diagnosis of endometriosis. “This procedure allows the surgeon to see inside the abdomen,” explains Ilyich. “It is performed under general anesthesia, with the surgeon making a small incision near the belly button and inserting a thin viewing instrument called a laparoscope to look for signs of endometrial tissue outside the uterus. Laparoscopy can provide information about the location, extent, and size of endometrial implants. It also allows a tissue sample, or biopsy, to be collected for further testing.”

2) Myth – Women with endometriosis cannot have children

The biggest harbinger of endometriosis-related myths is the belief that people with the disease cannot have children, yet about half of women with endometriosis are believed to have children.

“In general, pregnancy is possible for women with endometriosis, but it depends on the severity of the condition,” says Ilyich. “It is important to note that endometriosis is considered one of the three leading causes of female infertility. According to the American Society for Reproductive Medicine, endometriosis can be found in 24 percent to 50 percent of women who experience infertility. Up to 30 percent to 50 percent of women with endometriosis may experience infertility.”

The condition can influence fertility in a number of ways, Ilyich advises, including distorted anatomy of the pelvis, adhesions, scarring of the fallopian tubes, inflammation of the pelvic structures, impaired immune system functioning, changes in the hormonal environment of the ovules, poor implantation of a pregnancy. and alteration of egg quality.

“Studies show that the chances of getting pregnant can be improved with surgical treatment,” Ilyich explains, especially if endometriosis is in the moderate to severe range. “The combination of surgical and medical therapy may be beneficial in patients trying to conceive through in vitro fertilization (IVF). In general, treatment is highly individualized for each patient.”

3) Myth – Endometriosis improves after menopause

“For some women, the painful symptoms of endometriosis improve after menopause,” says Ilyich. “As the body stops producing the hormone estrogen, the growths slowly shrink. However, some women taking menopausal hormone therapy may still have symptoms of endometriosis.”

Also, hormonal treatments such as the pill, while they may suppress symptoms, do not have a long-term effect on the condition, and symptoms are likely to return once treatment is stopped. Additionally, a hysterectomy may relieve symptoms, but the condition may recur with persistent symptoms despite surgery. However, it is important to understand that the symptoms of endometriosis can be reduced with the right treatments and management plan.

4) Myth: Endometriosis is always painful and is like a heavy period

The assumption that a painful period or heavy discharge is a normal occurrence of menstruation can have a damaging effect on people with endometriosis who do not subsequently report their symptoms to their doctor. An additional concern a person has is the fear of being dismissed by the medical profession for overreacting or exaggerating their symptoms. And yet, not everyone who experiences endometriosis is in pain with an endometriosis diagnosis that comes to light once fertility issues are investigated.

“About a third of women with endometriosis remain asymptomatic,” says Ilyich. “Endometriosis symptoms can vary, but generally reflect the area of ​​impact. Such symptoms may include dysmenorrhea (painful periods), heavy or irregular bleeding, pelvic pain, lower abdominal or back pain, dyspareunia (painful sex), dyschezia (painful bowel movements) often with cycles of diarrhea and constipation, bloating, nausea and vomiting. , perineal pain, painful urination, blood in the urine, and pain during exercise.

5) Myth: Endometriosis can be prevented

“No one knows for sure what causes this condition,” Ilyich suggests. “That’s why we don’t know how to prevent it. Although any woman can develop endometriosis, the following groups appear to be at higher risk: those with a family history of endometriosis, delayed labor (women over 30 giving birth for the first time), early onset of periods (people beginning menstruation before the age of 11 may be at higher risk), short menstrual cycles averaging less than 27 days, long-lasting menstrual flow, heavy bleeding during menstruation, any medical condition that prevents the passage of blood of the body during menstrual periods, or low body mass index.”

While there is no cure, there are several treatment and management options, all of which depend on the individual and their particular situation.

For more information visit the Endometriosis Association of Ireland – www.endometriosis.es

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