While I do not have MS, I have become one of the few sexuality educators who presents workshops specifically around MS and sexuality. In the past, the majority of my sex and disability workshops have been focused around the HIV/AIDS community.
I am someone who is constantly trying to expand my knowledge when it comes to sex and sexuality. I decided to throw myself into finding out as much info on how MS affects sexuality. I quickly found out that there is not a whole heck of a lot of information available. Curiously enough, the best resources on MS and sexuality come from the MS Society in Canada. I'm also gonna brag here and say I've presented this workshop for 2 of the finest medical hospitals around, Stanford and UCSF.
What I have learned is that MS is one of the most common diseases that affects the central nervous system. Our nervous system is made up of a complex system of nerve fibers that are surrounded by a protective sheath called myelin. MS occurs when the protective sheath (myelin) becomes damaged and communication between the brain and the rest of your body become obstructed. Lesions can form on the spinal cord which can result in non-reversible deterioration of the nerves.
Studies show that between 40% and 80% of people with MS experience significant sexuality issues, and it is higher than other chronic illnesses. Sometimes this means that people have to redefine what sex means to them. It can also make people with MS incredibly creative when it comes to how they have sex. Make no mistake, people with MS can experience fantastic and satisfying sex lives.
There are 3 distinct categories when it comes to MS and sexual dysfunction.
Primary sexual dysfunction:
- When lesions on the spinal cord impair and interfere the nerves between the brain and genitalia. Common side effects are altered genital sensations, decrease in intensity of orgasms, erectile dysfunction, decreased vaginal lubrication and engorgement, and decrease in pelvic muscle tone.
Secondary sexual dysfunction:
- This is when sexual dysfunction occurs as a result of MS symptoms or the medications that are used to treat MS. Common side effects are fatigue, spasticity, bladder/bowel disturbances, sensory changes of genitals that can cause numbness or severe pain, decreased levels of sexual excitement, and tremors.
Tertiary sexual dysfunction:
- This is when the psycho-social and cultural feelings and beliefs of having MS affects sexuality. Common side effects are lowered body image, grief, anxiety, depression, feeling like your body has betrayed you or feeling disconnected from your body, and feeling like you rarely have control of your body since MS can be so unpredictable.
It can be pretty freaking hard to feel sexual with all this stuff going on. Hell, I'm able bodied and can tend to feel non sexual and have had lots of experience with low desire. Having MS can be extremely frustrating because of the fact that it is so unpredictable. This is hugely challenging when it comes to sexual activity.
Here are a few of my personal tips for enhancing your sexual life with MS.
- Redefine what sex means to you. Yeah, I can see how you might be scratching your head at this. Most people believe that the only way to have sex is to have penetration and end with ejaculation and orgasm. But boy oh boy, sex can be so much more than the act of penetration.
- Give yourself permission to find pleasure in your body
- Allow yourself to feel sexy and have erotic thoughts
- Experiment with lots of oral sex and digital (finger) penetration
- Figure out through exploration what parts of your body are more sensitive than others
- Challenge the thought that sex always boils down to penetration with ejaculation and orgasm
- Allow yourself to experience pleasure without feeling like you have to achieve ejaculation/orgasm
- Communicate with your partner what you need to feel safe in order to engage in sexual activity
- Remember that sex is fun, sometimes awkward and messy, and often funny. Being accepting of these facts can help strengthen the intimacy you already have with your partner
- Talk to your doctor. Here's the deal--doctors get maybe 20 hours of training in sexuality during medical school. You may need to bring up sexuality with your doctor in stead of hoping they will do it. Medications to treat MS can absolutely effect your sexuality, so ask about what you can take (or add) so you can regain sexual feelings. Also, ask for testosterone testing. Low testosterone affects both men and women. If you use a catheter, know that sexual activity is totally possible. Make your doctor aware of your sexual activity so you can determine which type of catheter is best for your needs.
- Try to schedule sexual activity for when you typically have the most energy.
- Avoid coffee, tea, other caffeinated drinks, and alcohol if you are scheduled to engage in sexual activity. Also, empty your bladder before you get down and dirty. Also, think about placing some extra towels on the bed before you go to town. A little (or a lot) of urine isn't really a big deal when you think about the bigger picture.
- Incorporate sex in the bathtub. We know that bathing in warm water prior to sexual activity can help reduce spasticity as well as relax your muscles and joints. You will need to have silicone lubrication for your sexy bath time play. However, it is very slippery so try experimenting with a little before using a lot.
- Try out different sex positions. Using pillows (both regular and ones made specifically for sexual activity) can decrease joint pressure. Rear vaginal penetration can be helpful for people who wish to keep their legs together. Having sex sideways doesn't put as much pressure on your bladder so many people find it enjoyable. If your male partner has MS and is unable to full extend his legs, try experimenting being on top.
I hope you have found this blog post to be useful.
If you did, I would love it if you left me a comment. Also, you might want to consider printing out this blog post and bringing it with you to your next doctors appointment. I'm going to follow up this post with my top sex toy picks for those who are differently abled, so please stay tuned.