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For people with Down syndrome, family members, caregivers and professionals.

PMS and PMDD in Women with Down Syndrome

March 2022 | Hannah Graham, MD - Adult Down Syndrome Center

Premenstrual syndrome (PMS) and premenstrual dysphoric disorder (PMDD) are psychological and physical symptoms which are related to hormone changes that occur during a woman's menstrual cycle. Classically, these symptoms begin BEFORE a woman's period starts and rapidly improve after her period starts. In this way, they are different from dysmenorrhea (painful cramps during a woman's period). 

Up to 12% of women without Down syndrome experience these disorders. They appear to be as common in women with Down syndrome as in women without Down syndrome. It is sometimes difficult for women with Down syndrome to express their discomfort while experiencing these symptoms. In these cases, the diagnosis is often made when a caregiver notices irritability and changes in behavior related to the timing of a woman's menstrual cycle (period). 

Some women with Down syndrome experience mild or occasional symptoms associated with their periods. For more information on treatment of these symptoms, please see this link.

Diagnostic Criteria

PMS

For the diagnosis of PMS, a woman should have one mood symptom and one physical symptom that start 1-2 weeks before the period starts. The symptoms should resolve within 4 days of the period starting. 

Mood symptoms

  • Angry outbursts
  • Anxiety
  • Confusion
  • Depression
  • Irritability
  • Social withdrawal

Physical symptoms

  • Abdominal pain
  • Breast tenderness or swelling
  • Headache
  • Weight gain
  • Joint or muscle pain
  • Swelling of extremities

PMS symptoms should be present for at least three period cycles in order to be diagnosed.

PMDD

PMDD is a more severe form of PMS. For the diagnosis of PMDD, a woman should have at least 5 of the above mood and physical symptoms. Additionally, the mood symptom(s) would be more severe and she should have one of the following symptoms (counts as one of the 5): 

  • Decreased interest in usual things
  • Problems with concentration
  • Low energy
  • Changes in appetite
  • Changes in sleep
  • Feeling overwhelmed
  • At least one of the physical symptoms listed above.

PMDD symptoms should be present in most periods for the previous year. Talk with your doctor sooner if you think you have PMDD and it has been less than a year. 

Treatments

The "first line" treatment for PMS and PMDD is now SSRIs, a common class of anti-anxiety and anti-depressant medications. These medicines are effective at reducing the physical and mood symptoms associated with PMS and PMDD. Some women may take these medications continuously, and some women take them only during the two weeks before their period (when symptoms are present). More research is needed to determine the best dosing timing. It is generally easier for women with Down syndrome to take these medications on a daily basis rather than trying to time them with the menstrual cycle. In our experience prescribing SSRIs for women with Down syndrome, these medications are generally effective and well-tolerated.

OCPs, or oral contraceptive pills, have also been used to treat PMS and PMDD. These hormone-containing pills have been found to improve symptoms, although the improvement does not seem as significant as women taking SSRIs. As OCPs do increase the risk of blood clots and women with Down syndrome are already at increased risk of blood clots, talk with your doctor about whether OCPs are the best option for you. 

Some studies have found that a calcium supplement (available over-the-counter) during the two weeks before a woman's period can improve symptoms. Taking a calcium supplement between 500mg - 1200mg may be a consideration for some women. Discuss with your doctor if this may be right for you. 

Vitamin B6 (also available over the counter) has been studied and recommended for its role in treating mood symptoms of PMS and PMDD. There are small studies suggesting its effectiveness when taking 80mg per day. More research is needed. Discuss with your doctor before starting new vitamins. 

Although there are many herbal remedies for PMS and PMDD, so far the studies have been small and not of high enough quality to fully evaluate the role of herbal remedies. More research is needed in this area. 

For additional resources on women's health topics, please see this section of our Resource Library.

References

Hofmeister A, Bodden S. Premenstrual syndrome and premenstrual dysphoric disorder. Am Fam Physician. 2016;94(3):236-240. Retrieved from https://www.aafp.org/afp/2016/0801/p236.html

Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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