EDS and Puberty
Ehlers-Danlos syndrome (EDS) is a group of rare genetic disorders that lead to connective tissue problems. EDS tends to occur much more frequently in women than men. A study in the U.K. looked at the medical records of more than 6,000 patients who had a diagnosis of EDS or joint hypermobility syndrome from 1990 to 2017. The study found that 30% of the patients were male and 70% were female.
Puberty seems to have a more profound effect on symptoms in girls than boys, with some girls not experiencing their first EDS symptoms until they reach puberty. If they already had some symptoms, those tend to worsen at puberty.
Further results from the study support this observation in the fact that boys most frequently received a diagnosis at ages 5 to 9, while it was 15 to 19 for girls.
Following is more information about the possible relationship between puberty and EDS.
How does puberty affects EDS?
During puberty, a child’s body begins to produce higher levels of several sex hormones. These sex hormones can have an effect on multiple parts of the body.
There are three major groups of sex hormones: progestogens including progesterone, estrogens such as estradiol, and androgens including testosterone. The levels of these three types of hormones are generally different between boys and girls. They also can vary from individual to individual.
Progestogens, together with estrogens are the more predominant sex hormones in females. The balance between levels of estrogens and progestogens usually change throughout the 28-day menstrual cycle. Progestogens, which are highest in the period slightly before and after menstruation, tend to loosen collagen, the main component of connective tissue.
In patients with most types of EDS, collagen is already reduced in the body due to mutations in the genes that provide instructions to make it. So, when the collagen is further loosened, the symptoms of EDS tend to worsen.
While progestogens weaken collagen, estrogens tend to have a stabilizing effect on collagen. So, during the times of the cycle when estrogen levels are higher, patients usually feel more stable, and their symptoms tend to be less severe.
Androgens, especially testosterone, are the predominant type of sex hormone in males. It also is present to a lesser extent in females. Androgens do not seem to play a role in EDS-related symptoms. However, they do increase the strength of muscles, which may help to stabilize loose joints.
Problems during and after puberty
The male sex hormones don’t appear to cause much change in collagen in the body. A change in symptoms at puberty has not been reported in the medical literature for boys.
Females with hypermobile EDS, tend to report more pain in their joints, clumsiness, and a higher tendency for their joints to dislocate starting in the days before and continuing until a few days after menstruation once they start puberty.
Once young women begin menstruating, they may also begin to experience symptoms of menorrhagia (heavy bleeding) and dysmenorrhea (severe cramping pain) during their menstrual period. Researchers think the heavy bleeding is the result of tears in the small blood vessels and the tissue surrounding them due to weakness in collagen. About 30% of girls tend to have irregular menstrual cycles as well.
Symptoms around puberty tend to be more severe in girls with EDS. Hormonal birth control options, therefore, may be necessary to help regulate menstruation. It may be necessary to explore multiple hormonal options to find one that helps control symptoms.
In a study of adolescent girls with EDS and menstrual complaints, nine of 34 girls were able to control their periods with only one medication, while the rest had to test two or more medications before finding one that helped.
Other treatments that also may help with menstrual symptoms include vitamin C because it can help reduce the fragility of blood vessels to reduce bleeding and non-steroidal anti-inflammatories, vitamin B1, magnesium, and acupuncture to help reduce pain.
Last updated: Feb. 4, 2021
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