Stories on Women’s Health and MS

Women are 3x more likely to be diagnosed with MS than men. 

On International Women’s Day, we’re shedding light on some of the challenges faced by women living with MS. Four women share their unique experiences on health and MS by speaking on four subjects: menopause, contraception, intimacy and sex, and menstruation. 

On menopause and MS: 

“I never thought I would be a 27-year-old, going through menopause, due to my MS treatment (Immunoablation and Autologous Hematopoietic Stem Cell Transplantation – IAHSCT) . I knew there was a risk when I started my treatment, but it’s been hard to wrap my head around the fact that I’ve lost the ability to conceive a child naturally. It’s even harder to accept that I am going through menopause before my own mother. 

From my experiences so far, my MS symptoms have worsened during menopause. Besides facing an intolerance to heat, a symptom of MS, I now also experience hot flashes. They’re unbearable and I am often forced to leave during my workouts because the heat becomes too overwhelming to bare. 

Some nights, I am victimized by hot flashes during my sleep. I wake up drenched in sweat and have trouble going back to bed. Since sleep is so valuable to those of us living with the disease, I worry that my fatigue will haunt me in the morning. 

However, my experiences have brought me closer to the people I love. My boyfriend and I have important conversations about how menopause affects aspects of our relationship. It also allows me to sympathize with other women who have gone through the same struggles.  

Menopause, at a young age, can be uncomfortable, and the only way to destigmatize this is to talk about it.” 

For more information on menopause and MS, please visit: https://mssociety.ca/managing-ms/womens-health/menopause

On contraception and MS: 

“I chose to use contraceptives because the effects of MS treatment on pregnant women were largely unknown. I was afraid that my future baby could have medical complications.

After being diagnosed with MS at age 15, I quickly began treatment to manage the progression of the disease. At 17 years old, my doctor encouraged me to take contraceptives to avoid the risk of an accidental pregnancy. He was concerned about the potential harm that some MS drugs could have on a developing fetus or baby.

After speaking to other women in the MS community, I learned about others using contraceptives for the same reason. During that time, not enough research was available on the effects of MS treatment and contraceptives. Today, advancements in research provide women with some safer contraceptive options.

Now I think about what would happen if I decide to get pregnant. What would happen to my treatment? Would I need to stop taking my medication?

As a woman, I feel we should emphasize the importance of sexual health and well-being for all women living with this disease. This means more research on women’s health and MS.”

For more information on contraception and MS, please visit: https://mssociety.ca/managing-ms/womens-health/contraception.

On sex, intimacy, and MS: 

“People with MS can absolutely have sex and intimacy, and for me personally, it can sometimes be the best therapy. 

With that said, life with MS means dealing with the unexpected curveballs the disease throws your way.  

When I have a relapse, all I do is sleep and being intimate is the last thing on my mind. Sometimes this can last for months. It’s challenging because that makes me feel like I’m not being a very good partner – I feel like I’m unable to give my partner what they deserve. I feel kind of guilty, like I’m not able to keep up my end of the relationship. 

Luckily, I am able to talk to my partner about my feelings and have honest conversations about the occasional limitations of my body. My partner knows how my MS symptoms can impact my body and is very mindful of that. I tend to experience more pain and sensitivity on my left side so he’s more careful when touching that side of my body. We communicate and work together to figure out what works for us. To me, that’s true intimacy.” 

For more information on sex and MS, please visit: https://mssociety.ca/managing-ms/womens-health/intimacy  

On menstruation and MS: 

“I often experience mood swings just before my period, but I still don’t know whether it’s a result of my MS. 

Ever since I hit menstruation at age 12, my periods seemed relatively normal. It wasn’t until I was in my mid-teens that I began experiencing extreme mood swings. Leading up to my time of the month, I would be angry and sad for no reason, and lash out at the people I love.  

In 2017, I was diagnosed with MS. I suddenly lost the motivation to do the things I loved and avoided outings with my friends and family. I noticed that I would start to feel emotionally unstable, and sometimes fatigued, a few days before my period. Feeling as though I suddenly had no control over my emotions, I was terrified to be labelled as ‘moody.’ However, with mood swings and fatigue being symptoms of MS, it was hard for me to distinguish whether I was feeling this way because of my period, or whether it was a result of my MS. 

After a few years of living with MS, I’ve learned to recognize when anger and sadness can present themselves, right before my period. I now know what to do to control them, which has helped me substantially over the years.” 

For more information on menstruation and MS, please visit: https://mssociety.ca/managing-ms/womens-health/menstruation

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