The Unspeakable Bits; From A Life With MS
I wrote last monthin our introduction to The Unspeakable Bits, that we were going to speak the ‘unspeakable’ on this blog. Well; erectile dysfunction, vaginal dryness, bladder leakage, sexual positioning, inability to attain orgasm, sex and multiple sclerosis.
How’s that for speaking the unspeakable?
Sex is a natural, important and - let’s face it - fun part of human existence. We think about it, we save ourselves for it, we abstain from it, we revel in it and we embroil ourselves in discussions of its “proper” place in our society. Sex lives in a unique place in culture as we struggle with the animal nature of the act and the purely human aspects of its affection. Sex is natural, wholesome and a part of a healthy, adult life.
But, like other parts of our “healthy life”, multiple sclerosis can and does take its toll on our sex lives.
There is an excellent primer on various forms of “sexual dysfunction” caused by MS and its symptoms. Those dysfunctions include, but are not limited to:
Loss of Libido
Reduced sensation (or painful, heightened sensation)
Difficulty achieving/maintaining erection (for men)
Vaginal dryness (in women)
Difficulty achieving orgasm/ejaculation
Feeling like we’re speaking the unspeakable yet?
How about some of the other symptoms of MS that can wreak havoc on the ancillaries to a healthy sex life?
“I’m just too tired to________” can be a regular part of the day for people living with MS. “I’m just too tired to make love” isn’t a stretch at all. So, Fatigue can lead to sexual dysfunction.
Pain (Yes, doctor. Pain can be a symptom of MS), spasticity, rigidity, vertigo… all of these can keep the flames of passion snuffed. Loss of use of limbs (both legs and arms) can be a significant barrier to sex for both the person living with MS and for our sexual partners (and more on them in a moment).
I’m tempted to add something of a “societal symptom” to our list of sexual barriers – and that would be the barriers around speaking openly about sex. For many people living with MS the idea of trying alternative sexual positions, bringing toys into the bedroom (let alone ordering/purchasing such things!) and discussing our sex lives with our medical teams are paths not easily traversed.
Right alongside those societal symptoms would have to be our partners’ reactions to us and our MS.
Time and time again I hear from people whose spouses have gone from lover to care partner to care-giver. It cannot be stressed enough how important it is to hold on to the parts of our relationships that are not MS. For the partners who do most of the care giving, respite care can be an important element in keeping a loving relationship from sliding into a patient and aide relationship.
Each partner must understand the difficulties the other may be experiencing in their life with MS. How we see ourselves and how our partners see us as sexual beings can easily be altered by MS if we allow it to happen. Like any part of a good, working relationship we may have to consider our limitations in dealing with sex and MS. Beforeour relationships begin to suffer we may want to seek professional counseling to help us deal with these very intimate issues (see resources below).
Of special embarrassment can be issues of bladder leakage, painful urine retention, constipation and incontinence as they relate to sex and MS.
I read with great pain when I see comments from our community that people have simply given up on that part of their lives.
If MS makes it difficult to walk, we get a cane, or crutches or a scooter; we do not give up on mobility completely. Why then would we think that some ‘difficulties’ in the bedroom somehow make us asexual beings?
As an act of disclosure (and to show that I’m genuinely trying to open the door to this conversation) I have some sexual dysfunction caused by MS and, if I’m to believe my urologist – who specializes in MS and neurologic conditions – I’ve more “issues” to look forward to, due to current levels of damage (and let’s just say they’re not “hypersexual behaviors and sensations.”)
There, we’ve done it. We opened the bedroom door to how MS affects the goings on in the boudoir. My hope is that this will not be a one-way conversation. Now it’s your turn.
What are your MS and sex issues? Do you talk about them with your partner? Do you talk about them with your medical team? Do you hide from them? Do you fear them?
If you care to listen, I hosted a couple of webcasts on intimacyand sexsome time ago with some very knowledgeable MS doctors and therapists. I’d encourage you to have a listen, with your partner, if you’re so inclined.
Next month; we’ll keep this conversation open by opening the bathroom door. In March we’ll discuss MS and the bladder.
Wishing you and your family the best of health.
For additional information and resources – including referrals to therapists and medical professional in your area – call an MS Navigator at 1-800-344-4867. The Society’s MS Navigators can also provide you with resources related to intimacy, caregiving and sexual challenges related to MS.
Additional information related to sex and MS:
Webpage: You Can...Fan the Flames of Romance