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

Birth Control in Women with Down Syndrome

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

Birth control encompasses a wide range of strategies and medications used to prevent pregnancy. Besides preventing pregnancy, some of the medications may be used to treat other common symptoms of menstruation – heavy periods and very painful periods.

 
Non-medication forms of birth control
 

Some forms of birth control do not involve medication to prevent pregnancy. Two of these forms are Natural Family Planning (NFP) and barrier methods (e.g., condoms, diaphragm). In our practice, we cannot recall any of our patients who have reported using these methods. These methods take either close self-monitoring (NFP) or manual dexterity (barrier methods) that require greater skills than seen in many women with Down syndrome or their partners.

 
Medication forms of birth control
 

Medication forms of birth control can also have effects on a woman’s menstrual cycle. They are sometimes prescribed in women who are not sexually active because of the role they can play in treating symptoms related to a menstrual cycle. Those symptoms may include heavy periods or very painful period cramps. Some common forms of prescribed birth control, along with a brief discussion of their benefits and risks, are discussed below.

 
Oral contraceptive pills (OCPs) - "The pill"
 

Most OCPs are a combination of two hormones made by a woman’s body: progesterone and estrogen. These are referred to as combined OCPs because they are a combination of two hormones. These pills work by preventing a woman from ovulating. They can also make periods lighter and less painful, in addition to keeping periods on a fairly consistent and predictable schedule. We have found that women with Down syndrome usually tolerate them well. Some of the common side effects are nausea, breast tenderness, and irregular bleeding. Those symptoms often resolve within 3 months of initiating the pill.

Risk of blood clots

There are some more serious side effects related to these pills. The pills can raise blood pressure, and routine monitoring of blood pressure while on an OCP is advised. While the dosage of hormones in the pills is very low, it has been shown that the combined OCPs increase the risk of blood clots in women without Down syndrome. We believe that women with Down syndrome may already be at increased risk of blood clots and that the combined OCPs may further increase this risk. We are not aware of research studies that confirm an increased risk in adult women with Down syndrome; however, there is a study in children with Down syndrome that showed a higher risk of blood clotting. Theoretically, there is an increased risk of abnormal clotting in adults with Down syndrome due to a higher risk of autoimmune diseases. Autoimmune diseases are often associated with increased risk of abnormal clotting. 

In women without Down syndrome, the risk of abnormal clotting is even greater in women age 35 and older and in women who smoke. We are not aware of a study that evaluated whether this was a problem in women with Down syndrome. Similar caution would be advised for women with Down syndrome 35 years or older and/or who smoke.

Contraindications

Combined OCPs are not safe in women who have a specific type of migraine – migraines with aura. Aura is a flashing light or visual disturbance associated with a migraine. We find that it can be difficult for women with Down syndrome to explain to us whether they have an aura with their migraines, so it makes sense to avoid combined OCP use in women who have migraines and cannot definitively express a lack of the aura symptom.

Moyamoya disease

An additional consideration is Moyamoya disease, which is more common in people with Down syndrome. Moyamoya is associated with both increased bleeding and clotting in the brain. However, in both our experience and in review of available studies, the strokes associated with Moyamoya in people with Down syndrome occur more commonly in childhood. Therefore, there is a greater chance that the existence of the condition will be known before OCPs are considered. If a woman has Moyamoya, OCPs are not recommended.

Congenital heart disease

The GLOBAL Medical Care Guidelines for Adults with Down Syndrome recommend ongoing monitoring by a cardiologist for people with Down syndrome who had congenital heart disease.  One concern is a higher risk of embolic strokes in people with Down syndrome. Embolic strokes are caused by clots forming, often in the heart, and then breaking free and traveling to the brain to cause a stroke. Due to the potential risk for abnormal clotting with OCPs, we recommend discussing the use of OCPs with the cardiologist prior to their use in women with Down syndrome who have a history of congenital heart disease.

Progesterone-only OCPs

In addition to combined OCPs, there are also OCPs containing only progesterone, also known as progesterone-only OCPs. These pills must be taken at the same time of the day every day to prevent pregnancy. It is very common to have “break through bleeding,” or vaginal bleeding outside of the usual menstrual cycle. Additionally, the medication is metabolized through the liver so women with liver disorders would need to consult with their physician first.

After discussing the risks and benefits of OCPs in women with Down syndrome, we consider having a woman get a series of blood tests to assess for conditions associated with increased abnormal blood clotting before ordering the OCPs.

 
Depo-Provera
 

Depo is a progesterone-only injectable medication. It is a shot that is given every 3 months and works the same way as progesterone-only pills. It is generally well-tolerated by women with Down syndrome. While many women stop having periods while on depo, some women have irregular periods and bleeding. Weight gain associated with depo is minimal according to studies. There is also an increased risk of blood clots with depo.

 
Intrauterine devices (IUDs)
 

IUDs are a T shaped device that is inserted into the uterus. The device is inserted by a medical professional during an in-office procedure. There are some IUDs that are progesterone-only and some that are hormone-free. The progesterone-only IUDs can make periods lighter and sometimes even go away (with the side effect of possible breakthrough bleeding). They are generally not associated with increased risk of blood clots. While the hormone-free IUDs work to prevent pregnancy, they can sometimes cause heavy menstrual bleeding.

We do not have any experience using these methods in women with Down syndrome as the procedure to insert the device would be difficult for many women with Down syndrome. For a woman with Down syndrome who wants to use an IUD but is not able to tolerate insertion in the office, placement under sedation or anesthesia is a consideration.

Implantable devices

Implantable birth controls are small, soft rods that are inserted under the skin of a woman’s arm during an in-office medical procedure. They provide a continuous supply of progesterone and work similarly to depo. They do increase the risk of blood clots and can cause breakthrough bleeding. We do not have any experience using these methods in women with Down syndrome.

Other than the theoretical higher risk of abnormal clotting above, we are not aware nor is there research that indicates that there are unique concerns in the use of IUDs or implantable devices in women with DS.

 

If a woman with Down syndrome needs contraception or hormonal treatments for period-related concerns, it is important to discuss the different options with the woman’s doctor to determine the best choice for her.

Additional resources on women's health can be found at this link.

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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