Let’s Talk About Sex

I am probably one of the most sex-positive people you’ll ever meet. In my 20s, 30s and early 40s, I not only thoroughly and completely enjoyed sex, but it was a very central part of my life. In fact, I was so interested in sex that I made it the primary focus of my practice as a psychotherapist. I had an amazing relationship with my second husband and, believe me, we had a great sex life! To me, sex is and has always been a celebration of connection, joy, laughter, and life.

When I suddenly began experiencing changes in my interest in sex and ability to orgasm, it was confusing and frustrating. When I would bring the issue up to my doctors, my concerns were often dismissed as peri-menopausal changes in hormones or that I was making a bigger deal out of something that wasn’t really an issue.

Mind you, I also had other MS symptoms going on – problems swallowing, falling, balance issues, memory problems, etc – but they were either dismissed, ignored or attributed to already-diagnosed Systemic Lupus. I was 48 when I was finally diagnosed with RRMS, and that only happened when I began seeing a new rheumatologist who recognized that my balance and gait problems were probably not related to Lupus at all. He ordered an MRI and when the results came in, he immediately referred me to a neurologist who diagnosed me with MS.

Sexual dysfunction isn’t something that many neurologists talk about to their MS patients. However, it is something that is an extremely important part of sensation loss that impacts many of us. And, the unfortunate thing is that our doctors don’t talk about it, and we don’t bring it up.

It wasn’t until I moved to another state and began seeing an MS specialist, that my new neurologist began to test where the loss of sensation was located on my body. We discovered that, for me, loss of sensation began just below my sternum and gradually became more pronounced the farther down my body she tested. She also revised my diagnosis to SPMS, although at this time, she still isn’t entirely sure that the correct diagnosis shouldn’t be revised to PRMS.

One of the consequences of loss of sensation is inability to feel much in the genital region. This translates into difficulty reaching orgasm or it taking much longer to reach orgasm. Problems reaching orgasm can be incredibly frustrating, depressing and lead to lack of interest in even attempting to have sex. It can lead to a drop in self esteem and impact our most intimate relationships. At some point, we may reach the conclusion that having sex is not worth the effort and entirely lose all interest in any form of sexual activity.

There are lots of sexual activities that can be enjoyable, even if we have reduced sensation. The mind is our most sexual organ in our bodies, provided we can change how we think of sex. For example, just stroking and cuddling can be enough to increase connection and intimacy between partners. Talking about sexual fantasies can be a wonderful way to stir up your sexual juices, while increasing intimacy at the same time. Reading erotica to each other can be a wonderful option for some couples. If you’re willing to explore your body, you may find hidden and special places that stoke the fires for you that you didn’t even know were there.

As for me? Well, it’s taken quite some time to come to terms with having something that was such a big part of my life change is such a dramatic way. I’ve found my own ways of discovering pleasure in my mind instead of my body. It’s been a process of rediscovering my body in ways I never expected.

Talking to my neurologist and discovering the source of my difficulty reaching orgasm made a big difference. Once I knew the source of the problem, then I could begin to attempt to find solutions. It’s not the same. It’s just different. And different is… well … different.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (9)
  • marigoldg author
    8 months ago

    @globetrotter, I was the one who brought this up with my MS specialist. I have found that few doctors will initiate conversations about sex with their patients unless they specialize in sexuality or sexual health.

    Since you are asked this question on their questionnaire, go ahead and take the initiative and bring up with your neurologist! Many doctors don’t actually *look* at those questionnaires when they see patients. They’re just scanned into your medical record for documentation purposes.

    If you have significant issues and your doctor doesn’t have any suggestions to help, then ask for a referral to a therapist specializing in sexuality or someone who is ASECT (Association of Sexuality Educators, Counselors and Therapists) certified. It would be especially helpful if the therapist has experience working with clients who have physical disabilities that impact sexual function.

    Thanks for posting!

  • globetrotter
    8 months ago

    No one will discuss this with me; every time I see my neuro, I fill out a questionnaire, and one of the questions is whether sexual function is being affected. You can choose, “not at all, a little, a lot, or extremely” I consistently choose, “extremely” and not once in 3 years has that ever been addressed.

  • sevensix
    9 months ago

    I am a guy with sexual dysfunction attributed to MS and the aftermath of prostate cancer.
    MS is the cake, prostate cancer is the icing. Non of it is palatable to mind or soul, it is life or it is a slow death. Cancer was no big deal. ED is a huge deal. The blue pill is maybe 50% max effective whereas trimix injections boost that number closer to 90%. It isn’t a choice, it is all we got. Doc says it may take two years to partial recovery, I have four months to go to attain that mark. All is not lost with a supportive and loving wife to lavish me with love and encouragement – and I need it. MS is a game changer while cancer simply cancels the game.
    -sevensix

  • marigoldg author
    9 months ago

    @sevensix, I’m happy you have a wonderful wife to support you. My first husband didn’t find the blue pill all that effective, but he used an injection medication (now unavailable) that worked really well. He was also a prostate cancer survivor.

    Remember that sex isn’t all about getting an erection and penetration. It’s also about connection, intimacy and sensual pleasure – both emotional and physical. There are kinds of enjoyable things that you and your wife can do to enhance sex. For example, you can whisper fantasies to each other or focus on other parts of your body that can be a surprise for stimulation. Your wife can explore your body and find those secret places, an enjoyable experience for both of you. No matter how long you have been with your partner, it is always possible to find new pleasure spots and things to do.

    Here’s one of the best books I recommend for everyone:

    The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain and Illness by By (author) Cory Silverberg, By (author) Fran Odette By (author) Miriam Kaufman (Author)

  • Margot moderator
    9 months ago

    Hi @sevensix that must be difficult – I’m so glad to hear of your supportive and loving wife! Really appreciate you sharing your experience with us here. You may also find our site ProstateCancer.net helpful if you have not seen it yet! Thinking of you. Wishing the best! – Margot, MultipleSclerosis.net Team Member

  • angilynn77
    10 months ago

    I feel bad saying I’m relieved (not happy) I’m not alone in this. I’ve begun to think its all in my head, major stress, and age….but the thought of knowing its not just me….I feel okay, a little. I enjoy intimacy as much as any 20something tho my diagnosis has been slowly robbing me of a humanly normal part of life, connection, and oneness..
    There are moments that I’m ‘tickled’ to feel & be able to react to arousal by my mate…..over ten years strong & know every inch of his body. What’s not to love & respond to in a life mate that still turns me on in fact more then before. I don’t mind the disease…..in.at peace with it I think. I just don’t like how disconnected I feel by not FEELING up to be intimate with him. I ALWAYS want him, 24/7, Believe u me.My body’s just leaves me hanging no matter how willing my mind is to be pleased with & knowing he’s pleased & taken care of.
    Much Love & Respect,

  • marigoldg author
    10 months ago

    @angilynn77 … I am happy that my post has helped you! Sex is one of those things that we are so hesitant to talk about, but it’s part of being a healthy and happy adult. Not being able to reach orgasm was so awful, but not even having my body react at all was even more frustrating – for both of us. It was so devastating to me when my body stopped reacting to my late husband and we had an *amazing* sex life.

    It wasn’t until I started working with my current MS specialist that it finally clicked what had been happening. Unfortunately, my husband had already died at that point, so I was never able to tell him why my body wasn’t synching with my attraction or desire for him.

    I hope you can let your partner how much you love him and are very attracted to him, even if your body doesn’t always get the message. If it helps, find a sex therapist to work with who has experience with MS patients. They can give you ideas of things to try that will emphasize your intimate connection without making it all about the O.

  • Christina Hegarty PT, DPT moderator
    10 months ago

    Hi @marigoldg,
    Thank you for sharing with us! For some people, even some doctors, this can be an uncomfortable topic, but it is an important one for many people. I’m glad you have been able to find a neurologist that has taken the time to really assisted you with navigating these changes. You may be interested in reading this article from one of our contributors: https://multiplesclerosis.net/living-with-ms/we-can-enjoy-sex-despite-having-ms/, as well as some other info on how to manage sexual dysfunction due to MS: https://multiplesclerosis.net/symptoms/sexual-dysfuncion/.
    Thank you again for sharing!
    Best,
    Christina, MultipleSclerosis.net Team

  • marigoldg author
    10 months ago

    Thanks @christinah! In my life before MS I was a Licensed Psychologist specializing in sexuality and I worked with many clients who were disabled. I tended to get referrals from other therapists who were not comfortable talking about sex with their own clients. I am always amazed that so many doctors don’t even bring up the topic of sexual health, particularly neurologists treating MS patients.

    Ironically, I’m an example of why medical professionals don’t treat themselves. I didn’t connect the dots until my own MS specialist pointed it out to me!

    Sex is just as important to being a healthy adult as is having good heart health or getting exercise. I hope by speaking out, I can help shine light on this important topic. Who knows, I might submit more posts on different aspects on the same topic.

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