Endometriosis: The long, painful road to diagnosis

For more than a decade, Joan (name changed) struggled to get a diagnosis for her condition — intense pain around her pelvic area. After several visits to doctors, she was finally diagnosed with endometriosis, an inflammatory disease in which cells similar to that of the uterine lining grow outside the uterus.

Endometriosis is a chronic disease and a clinical problem that affects women’s quality of life, work productivity, and healthcare management. “Despite its high prevalence and significant social and economic impact, the diagnosis delay from the onset of symptoms is frequently 6-10 years, making it an underdiagnosed disease,” says Dr Sandesh Kade, Gynaecologist Surgeon, Specialist in Laparoscopic, Endometriosis and Pelvic Floor Repair Surgeries, Burjeel Day Surgery Center, Al Reem Island, & Burjeel Medical City. “Therefore, it is critical to try to avoid delays in diagnosing the problem in order to determine the best surgical and/or medical treatment strategy.”

Symptoms can differ drastically from patient to patient, but the disease can cause chronic pain, infertility, painful menstruation, heavy bleeding, gastrointestinal problems and extreme fatigue. In Joan’s case, the pain from the disease immobilised her for a time. In 15 minutes flat, she says, she “goes from feeling fine to being in extremely incapicitating pain. Imagine dealing with this every day or not knowing when symptoms might strike.”

People without endometriosis may know that pain is a classic endometriosis symptom, but they can never really know just how crippling the pain can be. This month is Endometriosis Awareness Month, a campaign launched to raise awareness and help end stigmas around the debilitating condition that has historically been misunderstood and misdiagnosed, leaving many women to suffer in silence.

“The exact cause of the condition is not known, but there are a few theories,” explains Dr Anuradha Rahul, Specialist Obstetrics and Gynaecology, Aster Clinic, International City (Russia Cluster). “It is believed to occur when the endometrial tissue is transported to other areas through blood or the lymphatic system, or also due to direct transplantation, that is endometrial cells may attach to the walls of the abdomen or other areas of the body after surgery such as c-section.”

Genetics also plays a role as endometriosis seems to affect some families more than others. Besides, there is reverse menstruation, wherein endometrial tissue goes into the fallopian tube and abdomen instead of exiting the body during a women’s period. “It’s also said to occur when other cells in the body may become endometrial cells and start growing outside the endometrium,” adds Dr Rahul.

There is no single theory that can explain the variety of presentations seen in clinical practice. “As a result, all theories on its pathogenesis must be considered complementary to one another rather than mutually exclusive,” says Dr Kade. “So we can say that endometriosis is a multifactorial disease with multifaceted symptoms.”

Difficult to diagnose

The only way to definitively diagnose the condition is through a laparoscopy (minimally invasive surgery) to confirm you have endometriosis lesions, according to the American College of Obstetricians and Gynecologists (ACOG). Based on a patient’s symptoms, a doctor can make an educated guess that they have endo without performing the surgery. But endometriosis is a really complicated condition that even specialists are still trying to understand. All of this combines to make getting a diagnosis for endometriosis a notoriously difficult process.

“There are numerous causes for diagnostic delay,” says Dr Kade. “The lack of awareness of patients, their relatives, medical professionals, and ignorance of red flag symptoms are some of the causes. The most common reason is that doctors misdiagnose endometriosis as a different chronic condition because it can affect so many parts of the body, including the vagina, rectum, intestines, bladder, and diaphragm. There is no sure-shot test for endometriosis.”

Getting diagnosed with endometriosis can take long because the symptoms are very similar to those of other conditions such as fibroid uterus, ovarian cyst, and so on. “It is also complicated as not every person has every symptom and the severity of the symptoms varies from person to person,” says Dr Rahul. “People who experience symptoms such as painful menstrual cramps, abdominal pain or ball pain during periods, pain during sex, heavy bleeding during periods, painful bowel movement, and infertility, must visit a gynaecologist.”

The evil sister

One issue that can sometimes come alongside endometriosis is another disorder, adenomyosis. This occurs when these same uterus lining cells are found in the muscle wall of the womb. Sometimes referred to as endometriosis’ evil twin sister, it’s not had much airtime and research into this problem is limited. According to studies, around one in 10 women will deal with the issue, (the same number as have endometriosis) although one third may not experience any symptoms. It’s not unusual for a woman who has one condition to also have the other, but that’s not always the case.

“Adenomyosis is a benign invasion of the endometrium into the myometrium (wall of the uterus) leading to the thickening of the uterus with the trapping of blood leading to severe cramping pain and excessive bleeding and infertility,” says Dr Kade. “If you have chronic pain in the thoracic, abdominal, or pelvic area, getting screened for the condition is a good idea.”

As to what you can do to stop it from spreading its tentacles even further? Well, the research is disheartening. Hormonal contraceptives like the coil and the pill can help to control the symptoms (these solutions are often also used to help women with endometriosis to deal with the pain) but they don’t actually address the illness — only mask the symptoms.

Similarly, you can have hormone injections to create a fake and reversible menopause, but this can’t be used long term. Alternatively, there’s a procedure known as uterine artery embolisation, in which particles are injected into your blood stream to cut off the blood supply to the adenomyosis. Again, this is temporary and can only be used for a few years.

The difference between the oft-mentioned endometriosis and adenomyosis is that the latter occurs within the uterine muscle itself, making it impossible to treat with surgery. The hard part is that you can’t really do anything — you can’t fix it. Doctors can treat heavy periods but you can’t get rid of adenomyosis without a hysterectomy.

The struggle at work

Focusing at work can be difficult because of unpredictable symptoms, side effects of strong painkillers, and frequent trips to the toilet. Women seeking a diagnosis of endometriosis through surgery need time off to recover and might find themselves having more surgeries and screenings in the future. The disease also increases your overall risk of developing mental health issues, including depression and anxiety.

Trying to explain this to people at work and employers can be embarrassing, feel like an invasion of privacy or may unfairly risk future career opportunities. Sick leave can disappear quickly, and women may feel pressured to work while unwell. “I had colleagues who found it difficult to believe that there was no cure for the condition in this day and age,” says Joan. “I was even misunderstood as having a hard partying lifestyle for not being able to make it to work, while in reality I could barely socialise in normal situations.”

While the suffering can be draining and painful, both physically and emotionally, it doesn’t define you. You aren’t alone, and you deserve to receive all the help and comfort you need when navigating life with both — endometriosis and andenomyosis.