Part 2: Sex with a Chronic Condition

Living with MS can affect every aspect of your life, including your sex life. There are so many misconceptions when the topics of chronic illness and sex converge, making it a potentially scary subject for anyone learning to live within their “new normal.”

Taking MS into the bedroom

Many people with MS report a decline in sexual desire. With symptoms like fatigue, muscle spasms, and bladder control problems, it may be hard to think about sex. But there are steps one can take to improve sexual function and intimacy.

September is Sexual Health Awareness month and this is part 2 of our series, Sex With a Chronic Condition. We had the opportunity to interview Lauren Dicair, a clinical sex therapist. We thank her for addressing all the questions we have about sex but might not feel comfortable asking.

Are there positions for sex that seems to work better for those that have mobility issues, pain, or spasticity?

In general, being in a semi-reclined position, a seated position, or being on the bottom require less respiratory and cardiac effort and leave less work for muscles and joints. Placing bed pillows under elbow and knee joints or surrounding oneself with a U-shaped body pillow can help ease the pain.

Depending on what area of the spinal cord is affected, some male-bodied people in wheelchairs can have an erection and it may be easier or more comfortable for this male-bodied person for their partner to straddle them while they are sitting in their chair.

Be aware of your medications!
If you are prescribed a PRN pain medication. (PRN meaning that your physician has told you that you can take it whenever you have symptoms versus only on a set timetable), consider taking it at least a half-hour to 45 minutes (unless it’s a faster-acting medication), before you plan on engaging in sexual activity that will involve your affected body parts.

Communicate comfort and preferred positions
What positions may work one minute may become uncomfortable the next, so it’s important to maintain communication during your sexual experience to let your partners know when you need a change.

If you’re concerned about the possibility of experiencing emotional or physical discomfort during sexual activity, it’s a good idea to come up with safe words in advance that you can use with your partner(s) during sexual activity to convey whether you need to pause or stop an activity. You might want to consider using stoplight safe words:

• “Red” for stop or I don’t like that.
• “Yellow” for slow down, be gentler.
• “Green” for keep going or I really like this.

If you do have to take a break because of pain, having your partner massage the affected area will not only address your pain, but it will also maintain the continuity of your intimate experience as massage can be a sensual activity.

Where would you suggest people turn if they bring these problems or concerns to their doctor and their doctor is uncomfortable talking about the issues??

It’s important when anyone is experiencing physical intimacy challenges that they first meet with their GP or PCP to rule out any underlying medical issues or prescription medications that may be causing or exacerbating their physical intimacy challenges.

Talk shop first.
Once the medical portion has been addressed, some people may find that their physician is not comfortable continuing the discussion around their intimacy concerns, particularly when the physician has not received specialized training around discussing sexual matters.

Aside from meeting with a sex therapist for private sessions, another possible way to obtain professional guidance and support is by joining a support group run by a sex therapist. This has the double advantage of providing access to a sex expert and a community of peers who “get it.” For those on a budget, some professional-led support groups can also cost less per session than private sessions.

Turn to the internet
In the age of social media, there are also tons of free, virtual safe spaces like private, specialized Facebook groups where you can connect with, commiserate with, and ask for tips from others who are navigating similar challenges. A quick Google search for “sex and chronic illness support” yields many resources.

How do you cope with your bladder or bowel unloading when you are engaged in sexual activities?

Even if you’ve previously gone to the restroom up to 4x prior to starting. It’s a horrible feeling when your body finally ‘finishes’ and also, all of your bladder/bowels does too. To start, it’s a good idea to consider if there are ways to mitigate bladder or bowel incontinence from happening.

Know your stressors and triggers.
Are there particular emotional stressors, foods, or other environmental triggers that have historically caused or exacerbated your incontinence? If you’re not sure, start a daily health journal where you can keep track of any patterns and then avoid the instigators in general and especially when you are planning to engage in sexual activity.

For both male and female-bodied persons, practicing Kegel exercises are a great way to strengthen the pelvic floor muscles which can help one improve control over bladder leakage. A pelvic floor physical therapist can provide massages and exercises that can also help you strengthen your pelvic floor which can help not only manage incontinence, but also overactive bladder or constipation.

Consider modified positions
There are certain positions to consider that can help mitigate pressure that can result in leaks. Try a modified missionary position where the partner with the incontinence challenges is laying on their back with a pillow under their pelvis and the other partner on top. This position helps to reposition the bladder and bowels, putting less pressure on them.

Reframe it as intimacy
Even after you’ve tried all of these measures, you may still experience episodes of bladder or bowel leakage. Waterproof or rubber sheets or keeping a towel spread out underneath you can make cleanup easier if you experience leakage. It can certainly feel embarrassing when you experience leakage during sexual activity. But intimate activity doesn’t have to stop after leakage occurs.

Reframe the leakage as an opportunity to switch things up and maintain novelty in your intimacy. Consider transitioning your sexual play to the bathtub or shower where you can continue to intimately explore each other’s bodies by bathing each other.

For additional tips on intimacy and assertive communications, we invite you to check out part 1 of this article, here.