Menstruating When You Have EDS

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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menstruation and EDS

Ehlers-Danlos syndrome (EDS) refers to a group of genetic disorders that affect the connective tissue. The disease is caused by genetic mutations that make the connective tissue weak. This affects different organs and systems in the body.

About menstruation

Menstruation is the monthly process a woman’s body goes through in preparation for a potential pregnancy. Every month, the ovaries release an egg in a process called ovulation. During this process, a series of hormonal changes prepare the uterus for pregnancy. If a sperm doesn’t fertilize the egg, the lining of the uterus sheds blood and tissue through the vagina. This is called menstruation.

Menstruation with EDS

A small study of teens and young women with EDS demonstrated that women with EDS frequently experience menstrual problems, but doctors rarely refer patients to gynecological care for these problems.

A survey of women with EDS reported that only 32.8% of patients had a normal menstrual cycle. About 18% of patients had bleeding between periods. Nearly 33% of patients had a heavy menstrual flow. The vast majority of participants (92.5%) experienced painful cramps during menstruation. The reasons for this are not clear.

How do doctors treat menstrual problems?

You should discuss your symptoms and medications with your primary care physician and your gynecologist. Because EDS is a rare disease, your gynecologist may need to consult with your primary care physician to determine the best treatment for you. It is not uncommon to have to try several different medications to find the right one.

You can use hormonal birth control pills to regulate your menstrual cycle and reduce some symptoms such as cramping and heavy bleeding. However, it is important to remember that some of these treatments containing estrogen can make EDS comorbidities more severe.

Some patients may need pain medication to manage cramping. Most patients can use over-the-counter medications such as ibuprofen. However, remember that ibuprofen can be harmful if used over long periods of time or in EDS patients with a condition called mast cell activation syndrome.


Last updated: April 14, 2020


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