How MS Affects Women: Key Considerations at Every Stage of Life

MS Impacts Women – And Their Decision-Making – Differently

Multiple sclerosis disproportionately affects women, occurring in females approximately three times more than males. As a woman living with MS progresses through her life, the considerations regarding disease management can change, influenced by family planning decisions, hormonal changes, and symptom changes over time.

The onset of multiple sclerosis is typically in the peak reproductive years, between ages 20-40. Clinical trials often exclude women who are pregnant, wish to become pregnant or are breastfeeding, leading to a lack of scientifically backed understanding of these periods of life. Due to this, the decision to start a disease modifying therapy (DMT) can be tough, without a clear roadmap of which therapies may be considered relatively safe as a woman chooses to grow her family and considers the decision to breastfeed postpartum.

How Treatment Choices Shape Family Planning

At the time of diagnosis, when so much information is being shared and with the long-list of current FDA-approved DMTs, family planning decisions are infrequently considered. Not only are the medications different in how they are taken, many of them have different safety and side effect profiles. As a result, the decision of choosing a DMT can be very personal and needs to be individualized. It is particularly important that women with MS discuss their plan to expand their family in the near, or even distant future so that this can be adequately considered to ensure the best chance of protection from relapses whilst considering any potential effects on a future child. Though most DMTs should be stopped prior to pregnancy or at the time of finding a positive pregnancy test, there are a few agents that may be considered in the setting of family planning. This requires careful thought given to drug details, such as how long it takes for a treatment to enter and exit the bloodstream, and when it may cross to the developing baby. This all has to be considered on the context of the known disease activity; if the woman living with MS has a highly active disease, it is recommended that the inflammation is adequately controlled before trying to family plan. This requires a nuanced discussion with the treating team so that a woman with MS may understand her disease, her treatment options, and then consider these facts in the context of her family planning wishes.

There are several disease modifying therapies that are known to cross the placenta to a developing baby during pregnancy, with a select few being known to potentially cause harm. As a result, it is very important to discuss any desires for future pregnancies with the treating clinician so that this can be considered when making those shared decisions.

Debunking Myths About MS and Women’s Health

There are several myths regarding pregnancy that have been circulated over time that have been scientifically debunked. A few updated pearls regarding MS and pregnancy are listed below:

• MS does not reduce fertility
• Epidural anesthesia can be safely considered in the setting of labor and delivery
• Not all treatments have to be stopped once a woman with MS finds out she is pregnant
• There are DMTs which may be considered in the setting of breastfeeding

To tackle these myths, clear communication with a treating specialist is important. Further, there is a well described rebound of disease activity in the postpartum period which requires careful monitoring and planning for. Finally, given the physical demands on a body that carries a developing child, women with MS should be encouraged to go to pelvic physical therapy in the postpartum period. This can be particularly helpful in women who have bladder dysfunction as part of the MS symptoms.

Independent of family planning, considerations such as career choices and relationships are also often at the forefront of these peak years of diagnosis. The choice between a daily DMT pill versus a routine infusion every month or six months may be heavily influenced by the life, work, and travel demands of a person living with MS.  As a woman with MS juggles her personal life, career, and disease management, it is important that these stressors are recognized and addressed in a healthy way. To live well with MS, it may be beneficial to exercise regularly, eat well, and consider speaking to a counselor or therapist.

The Intersection of Hormones and MS Over Time

As a woman with MS progresses through her life, she may experience a variation of symptoms. Some women report that their symptoms worsen with each menstrual cycle, while others find that the perimenopausal state can cause more day to day lived symptoms. There are many symptoms that MS can cause, but not every person experiences all of them. The symptoms a person experiences are a result of the pattern of lesions on the brain and spine, as well as the degree of inflammation and how it is changing over time. Nervous systems try their best to compensate and continue to send signals through the usual channels despite the damage, but hormonal fluctuations can further interfere with these communications.

Menopause poses a particular challenge in navigating the symptoms of MS: perimenopause is known to cause hot flashes, fatigue, and even sensory symptoms. As MS can be heat sensitive, cause sensory changes, and frequently is associated with fatigue, it can be helpful to discuss these symptoms and track their change over time with a treating provider to better understand which symptoms comes from which cause. It is possible that the hormonal fluctuations from the perimenopause can worsen symptoms of MS.

Better MS Care Begins with Conversations

The lived experience of women with MS is unique and requires an active dialogue. Much of this can be achieved through open communication and education, both on the part of the patient and the clinical team. We are learning so much about the best care of women living with MS and the individualized treatment that allows women with MS to live well – it requires clinicians to be willing to revisit what they know and update recommendations on a regular basis.