Between 30 and 40 percent of all teenage girls and young women experience menstrual pain so severe that they are unable to perform daily activities or go to school or work.
– If we reduce people's risk of developing chronic pain in the future, it will be much easier than trying to treat pain once it has developed, study lead author Katie Vincent, professor of pain in gynecology, tells the BBC.
Pain for three months
Chronic pain means pain that lasts longer than three months. It is estimated that approximately 20 percent of Sweden's population is affected by moderate or severe chronic pain, according to Swedish Municipalities and Regions (SKR). Women are affected more than men, and according to Katie Vincent, chronic pain often occurs in the teenage years, around the time a woman begins her menstrual cycle.
The maximum severe menstrual pain is usually a seven on a scale of one to ten, with ten being the worst pain you can experience, according to Emma Esberg, a gynecologist and PhD student at Karolinska Institutet.
– But when you as a doctor evaluate an individual, we look not only at the pain, but also at how you are affected by it, for example socially. In some studies, it has been shown that for people who need to come home from school or work for more than two days in connection with their menstrual cycle, there is a clear risk of later being diagnosed with endometriosis, which means severe menstrual pain.
It's important to spot the signs of severe menstrual pain, according to Emma Isberg. But it can be made more difficult by the ignorance of menstrual pain that often exists among the general public and among general practitioners.
– Many of my patients attest to a misunderstanding when it comes to menstrual pain: there is an outdated image that you have to put up with. They may have heard that it is not okay to go home after work because of minor menstrual cramps, and this opinion can also be present when seeking care.
This view of menstrual pain can make more people ashamed to seek help. It's unfortunate, says Emma Esberg, because treatment and measures make it possible to avoid pain becoming chronic, and people who could have received relief from their pain are missing out on that opportunity.
– Many people lack extensive knowledge of what severe menstrual pain means for an individual, and that it can be a disease associated with certain risks.
In addition to the above-mentioned links to developing chronic pain, there is also a risk of infertility in endometriosis. There is also a clear relationship between significant school absences and severe menstrual problems. For those with chronic pain, many also experience symptoms of depression.
Although endometriosis care is improving, diagnosis often takes time. On average, it takes between 8 and 12 years from symptoms to diagnosis, according to Emma Isberg.
Endometriosis gets worse over time
Of those with severe menstrual pain, more than 70 percent have endometriosis. Endometriosis is a progressive disease, meaning it gets worse over time. The pain can spread between menstrual periods and throughout the body, not just around the uterus.
Endometriosis means that tissue from the inner layer of the uterus, called the endometrium, sticks to the outside of the uterus. It most commonly takes root in the area around the uterus and ovaries. Then you bleed not only in the uterus but also in other places in the body, which leads to inflammation and severe pain.
In parallel, you see that the body learns to feel pain, and pain affects how nerve signals coming from the brain appear. Once you develop chronic pain with altered pain signals, it can be very difficult to treat. Even if you remove all the changes in the lining of the uterus so that there is no active disease anymore, pain may remain.
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