Ann Marie J. and Dr. Kaplan explore the changes women may face when it comes to sex and intimacy after an MS diagnosis.
HOW MS MAY IMPACT SEX
Dr. Wanda Castro: Hi everybody, welcome to She Talks MS. I am Wanda Castro and I’ll be your host. I work with Biogen, and today we’re going to be talking about sexual health. So Ann Marie, what is your experience with sexual health?
Ann Marie J.: Let me give you a little bit about myself, I was diagnosed in 2002. There was a lot of changes in me. I couldn’t walk. I couldn’t hold a cup. I couldn’t button a shirt. As the months and the years went by, I started to notice that everyday things that a lot of people take for granted in terms of, getting your nails done—very hard to do. We’re not even going to get into the shoes, you know. I am a stiletto-wearing type of sister. And for months, MS took that away. All of this that made me, me, was all being challenged and was gone, in some respects. I didn’t feel pretty. I didn’t feel feminine. I didn’t feel like me. So, that, in turn, reflected in terms of sexuality and intimacy.
Dr. Tamara Kaplan (Neurology, Brigham and Women’s Hospital): I think so many women struggle with that exact same feeling. And when we talk about sexual problems with women, it’s so much more complex because there are so many factors.
Wanda: In your practice, or the patients that you have seen, what are the most common complaints about sexual health or issues?
Dr. Kaplan: Loss of interest, or loss of libido, decreased arousal, lack of vaginal lubrication, lack of satisfaction, painful sensation, decreased sensation, all of those things. And I sort of break it up into what I call primary, secondary, and tertiary sexual dysfunction. The primary sexual dysfunction is when there’s something about MS itself that’s causing decreased libido or decreased sensation, like reduced sensation in your genital area. That just makes sex less enjoyable. The secondary sexual dysfunction is all the other symptoms that people have with MS that contribute to a lack of desire, like the fatigue, the spasticity, the bladder problems. And then the tertiary sexual dysfunction is all the emotional and social and cultural aspects of MS.
Ann Marie J.: I’m one of those people that’s against the textbook in that I have the heightened sensation. I have to be very careful because people often think, oh that’s good, so you’re easily aroused, wow, yeah. No. I mean, in fact, it can hurt, so those are the things that I have to be mindful of when I’m in a moment of intimacy with someone, so that they understand that. Also, with that is fatigue. I tend to have my intimate moment with my boyfriend at night. I’m more aware. I’m more alert. I am more receptive than I am during the day.
Dr. Kaplan: And it’s good that you know that about yourself because I had another patient tell me the exact opposite. It’s so different for each person.
Wanda: Did you always know that sexual health could be impacted by MS?
Ann Marie J.: Unfortunately, it was one of those things that I didn’t know. Not only I didn’t know, but it wasn’t of interest in the beginning. You know, because so much is going on. I think as women we need to embrace and recognize our sexuality just as much as the physical aspect of us.
Dr. Kaplan: The important thing to know is this is incredibly common. In fact, over 60% of people report a decline in their sexual activity since their diagnosis. And I mention this primary, secondary, tertiary, but most people have some combination of all three.
Wanda: So, what pressure do you feel as a woman when it comes to sexuality?
Ann Marie J.: A lot of ways, it’s just your day-to-day. How do one define femininity? And that shift in mindset, when you are diagnosed with MS, in that I am beautiful, I’m fabulous no matter what. Look at your body, look at you holistically when it comes to MS. It takes a while to shift that mindset and know that, okay, today I’m a little tired, it’s okay. But when I get up, I’m going to be fabulous. I’m going to put on some cute, sexy, flat shoes. I’m going to start here, start here and everything else will work itself out.
Wanda: Well, Ann Marie, thank you so much for sharing your story with us today. We know that it’s difficult to open up about these topics. We hope that this inspires someone that is watching us to have these conversations and open up with their healthcare providers.
Ann Marie J.: Thank you.
Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.