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Yvana van den Hork  •  06-02-2022

When excessive menstruation pain isn't normal : why does it take so long to diagnose endometriosis?

When excessive menstruation pain isn't normal : why does it take so long to diagnose endometriosis?

When excessive menstruation pain isn't normal : why does it take so long to diagnose endometriosis?

Last week it became known a Spanish city council had decided to grant its female workers the option to take a day off when they were suffering from a painful menstruation.
Mind you, this 'day off' wasn't even a free day or sick day but an unpaid leave they would need to make up for later! Yet, the decision was met with scorn from some men and even some unempathic women, who apparently never had to suffer from a very painful menstruation.

Personally I was fortunate enough to never really suffer a lot from heavy menstruation cramps or bleeding, other than just a few hours of discomfort that was best fixed with a hot water bottle resting on my tummy.

However, for some women their menstruation woes aren't as easily solved. Very few of those women realise their excessive pain is not 'a mental problem' or as we Dutchies say 'in between the ears' but may be caused by a medical ailment called endometriosis. A condition that in some rare cases, may even lead to the loss of a woman's life. For example, in the UK , 30 year old Aubrion Rogers died during emergency surgery after not having been treated in time.
Her death caused a big stir, especially since she had been one of the spokeswomen to make people aware of the dangers of endometriosis.

What is endometriosis?

Most women who have endometriosis experience symptoms like pelvic pain and cramping for about 10 years before receiving a diagnosis. That means a decade of living with symptoms such as painful periods, pain during intercourse, or pain with bowel movements.

Some common misconceptions about endometriosis are that endometriosis is just a bad period, when, in reality, it is a highly inflammatory, full-body disease.
To date, endometriosis has been found in every single organ in the body. The symptoms range from abdominal pain to brain fog and fatigue, to chest pain and shortness of breath, to nerve pain and pain with urinating. The symptoms are all over the map, and they don’t only happen during someone’s period. They can be every single day.
Because endometriosis can affect so many parts of the body — including the vagina and rectum, intestines, bladder, and diaphragm — doctors may misdiagnose it as a different chronic condition.

Endometriosis is relatively common, affecting about 1 in 10 women worldwide — but that doesn’t mean it’s easy to pinpoint. While reasons for the delay may vary widely from person to person, here’s a deeper look into what may slow the path to a diagnosis of endometriosis:

Endometriosis is underrecognized

There’s a general lack of awareness and knowledge about endometriosis. That includes not only the general public but also physicians and other caregivers. This is a hugely important aspect of the situation with endometriosis, because if you don’t think of the disease and don’t diagnose it, you don’t treat it. “The first step in doing a better job with endometriosis, nationally and globally, is to think about it.

The symptoms can be uncomfortable to discuss

Some women feel uncomfortable talking about the symptoms of endometriosis. The types of problems people have with endometriosis — pain with bowel movements, menstrual cramps, pain with intercourse were and to some extent still are embarrassing and often taboo to talk about.

Period pain is often dismissed as being “normal”

Since menstrual cramps are common, some women assume that their cramps, no matter how painful, are just a fact of life. It’s the only type of pain that’s considered a normal phenomenon in most of our lives.
Some women are even dismissed or told they’re being dramatic when they complain about their cramps, which is not helpful. Usually it’s not until women are missing school, missing work, and really disabled before the pain is recognized as something abnormal.
It could be recognized a lot earlier.

Endometriosis symptoms are often confused with the symptoms of other disorders

Traditionally, endometriosis was thought of as pain with periods, but endometriosis can present with so much more than just painful periods, such as pain with bowel movements, abdominal pain, gastrointestinal symptoms, and bladder symptoms.
Often these symptoms are mistaken as signs of other conditions, such as gastrointestinal disorders.  Somebody may have some pain with bowel movements or some diarrhea or constipation around the time of their period, and that often gets diagnosed as or is suspected to be an intestinal problem. 
Many healthcare providers aren’t asking about endometriosis symptoms.

Whenever you go in for a periodical gynecological exam, you may be asked a lot of questions about your habits. But have you ever been asked whether you have painful periods?
Ob-gyns, for example, may have been seeing a patient every year for annual evaluation and not know that that woman has been in pain, and they don’t ask, and if the patient doesn’t say anything, this cycle goes on.

There are no simple screening tests for endometriosis

The only way to confirm that you have endometriosis for sure is through a laparoscopic surgical procedure — this means that traditionally, patients have had to weigh having surgery, which can be scary, against having pain.
Thankfully, this is changing now that doctors have found that surgical diagnosis is not necessary in every case. One can make a very good diagnosis just based on history and clinical symptoms alone, so surgery isn't needed for every individual case.
In some cases surgery is necessary, but in others the patient could try certain treatments before a surgically confirmed diagnosis.

How to get an endometriosis diagnosis sooner

The good news is that there are steps you can take to shorten the time between onset of symptoms to diagnosis. Start with these tips:
Share your suspicions and describe your symptoms.
If you think you might have endometriosis, voice your suspicion outright to your doctor.
Speak honestly about the severity of your symptoms.
People have a hard time expressing just how bad pain is, but if you’re missing school, withdrawing from social activities, avoiding sexual intercourse, missing days at work, or not able to function at work due to pelvic pain or severe menstrual cramps, those specific examples would be very helpful for your physician to know about.

Go to a healthcare provider who takes you seriously.
If your doctor doesn’t acknowledge or pay attention to the symptoms you disclose, find someone who does. Don’t give up until you find a doctor you’re comfortable with.

See a doctor with the right type of expertise.
Many pediatricians, internists, and family practitioners lack expertise in endometriosis. If you have a physician who is not familiar with endometriosis and not really attuned to dealing with these types of health issues, you should probably seek another physician, preferably somebody with expertise in endometriosis.

Need to know more? Start at  https://endometriosis.org/support/ 

In case you would like to join a group of women suffering from endometriosis, Endometriosis Awareness is a good FB-group to start at.

Author

Yvana van den Hork
Rank: Senior Editor
Position: Director
She holds an MSc in Toxicology and Biology of the Wageningen University
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