EDS and Puberty

Last updated Feb. 18, 2022, by Patrícia Silva, PhD

✅ Fact-checked by José Lopes, PhD

Ehlers-Danlos syndrome (EDS) is a group of rare genetic disorders that affects the connective tissues that provide structural support to organs and other tissues in the body. It results in unusually mobile joints and soft, stretchy skin.

EDS tends to occur more frequently in girls and women.

How does puberty affect EDS?

During puberty, the body begins to produce higher levels of several sex hormones, which can have an effect throughout the body.

There are three major groups of sex hormones: progestogens, including progesterone; estrogens, such as estradiol; and androgens, including testosterone. Hormone levels are generally different between boys and girls. They also can vary from person to person, and fluctuate throughout an individual’s life.

The impact that sex hormones can have on connective tissues and on the laxity, or looseness, of joints and tendons has yielded conflicting data in the general population.

A 1999 study reported that the laxity of a key ligament in the knee joint — the anterior cruciate ligament (ACL) — significantly increases with rising levels of estrogen and progesterone during a woman’s normal menstrual cycle. More recently, a 2018 review study noted that ACL ruptures occur 2-8 times more often among female athletes than their male counterparts.

The review study also noted that estrogen seems to improve muscle mass and strength, and to increase collagen content, in ligaments. However, these benefits result in decreased connective tissue stiffness, making women more prone to ligament injury.

Data on the impact of sex hormones among EDS patients is even more scarce than in the general population.

Progestogens and estrogens

Progestogens, together with estrogens, are the predominant female sex hormones. The balance between the levels of these hormones usually changes during the 28-day menstrual cycle.

The role these hormones play in EDS is not completely understood.

Puberty can worsen EDS-associated symptoms, according to a report from The Ehlers-Danlos Society, by Natalie Blagowidow, MD, a certified clinical geneticist.

The report references a 2016 study in nearly 400 women with hypermobile EDS, the most common type, that found a high frequency of gynecologic complaints. Heavy or prolonged menstrual bleeding, called menorrhagia, and pain associated with menstruation, known as dysmenorrhea, were the most common.

The study revealed that puberty was associated with worsening or a marked onset of symptoms in more than half (51.5%) of the group.

A subset of women in the group reported being sensitive to hormonal fluctuations, and having more severe symptoms during puberty, prior to menstruation, and during the postpartum period that occurs following childbirth. This suggests that female sex hormones can influence EDS symptoms.

Androgens

In males, androgens, especially testosterone, are the predominant sex hormones. These hormones also are present in females, but to a lesser extent.

It generally is thought that androgens do not play a significant role in EDS-related symptoms, however, recent evidence suggested that androgens contribute to vascular disease risk in vascular EDS, including serious events such as aortic rupture, especially in males.

As part of its 2021 research grant program, The Ehlers-Danlos Society funded a project to explore whether androgens contribute to puberty-associated vascular rupture. Studies to date have only been conducted in mouse models.

Symptom management

In women, hormonal control options may be necessary to help regulate menstruation and improve patient well-being.

Yet, a 2020 study involving adolescent EDS patients revealed that few are referred to gynecologic care despite the prevalence of complaints and the potential for such complications in this population.

The researchers noted that these patients may benefit from early gynecologic care, and that long-acting reversible contraception (LARC), including hormonal intrauterine devices, may be a safe and effective treatment option.

The 2016 study also reported that symptoms diminished for some of the adult women with hypermobile EDS with combined hormonal contraceptive (progestogens plus estrogens) or progestin-only (progestin is a form of progesterone) treatments.

For pain associated with menstruation, The Ehlers-Danlos Society suggested in its 2018 report that non-steroidal anti-inflammatory therapies, as well as vitamin B1, vitamin B6, and magnesium supplements, may help control symptoms.

Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.