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Survey study, 2000

What menstrual and gynecological problems do women with familial dysautonomia experience?

Women with familial dysautonomia (a genetic nerve disorder) experience very high rates of premenstrual symptoms (81.2%) and often have delayed puberty. Some experience severe nervous system reactions during their menstrual cycle.

Early or limited evidence 48 women with familial dysautonomia (a genetic nerve system disorder), average age 22 years

What they did

Researchers reviewed medical records of 48 women with familial dysautonomia. Thirty-three of these women were also interviewed and had their hormone levels tested.

What they found

Menarche (first period) occurred at an average age of 15.5 years, delayed compared to their mothers at 13.6 years. 81.2% of women with familial dysautonomia experienced premenstrual symptoms. Seven of 26 women had premenstrual symptoms severe enough to trigger dysautonomic crises (severe nervous system reactions). Blood hormone levels were normal in 27 of 33 women tested. Three women became pregnant and delivered healthy infants.

What it means for you

Women with familial dysautonomia struggle significantly with premenstrual symptoms, likely because their already-dysregulated nervous system cannot cope well with monthly hormonal changes. Because this is a rare genetic condition, these findings apply only to this specific population.

81.2%

experienced premenstrual symptoms

7 of 26

had severe nervous system reactions

15.5 vs 13.6

menarche age vs mothers (yr)

About the study

Original title
Gynecological aspects of female familial dysautonomia
Authors
Maayan C, Sela O, Axelrod F et al.
Journal
The Israel Medical Association journal : IMAJ
Year
2000
Study design
Survey study
Participants
48

Topics