Let’s Talk About Sex

Last updated: June 2019

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.

Changes in my interest in sex

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.

Finally diagnosed with MS

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 and 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.

Loss in sensation

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 [no longer a type of MS].

Difficulty reaching orgasm

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.

Finding new ways to increase intimacy

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.

Rediscovering my body

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.

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