Sexuality is an important part of life, and when things aren’t going well in this area, we know that quality of life suffers.

Sexual dysfunction may even play a larger role in overall mental well-being than the severity of a disability. Yet, it remains a topic that folks with MS rarely discuss with their healthcare providers.

One study reports that “sexual dysfunction (SD) is a painful but still underreported and underdiagnosed symptom of the disorder.”

The reasons for sexual problems in women with MS have been divided into three descriptive groups.

Primary sexual dysfunction

Orgasmic dysfunction, including delayed and/or less pleasurable orgasm as well as reduced genital sensation, decreased lubrication, and diminished libido, are some symptoms attributed to lesions in parts of the brain and brain stem that control these functions.

Secondary sexual dysfunction

In some cases, causes outside of direct lesions may affect sexuality. This would include things like pain, fatigue, and bladder and bowel control issues.

Tertiary sexual dysfunction

This classification focuses on social and personal causes of sexual dysfunction, including poor self-esteem, mood disorders (such as depression), and relationship issues.

Interestingly, some symptoms may be directly attributable to MS lesions, but some sexual problems can be more universal and still affect those with MS.

Exploring treatments directly related to MS, as well as symptoms that are common among the general population, can be valuable to improving quality of life as it relates to sex and intimacy.

Talk about it

Connection and physical intimacy are important for satisfaction and well-being.

The hardest part may be bringing up this topic to your healthcare provider, but knowing that there are medical reasons and effective care available can make this conversation easier.

All healthcare providers should understand the role that well-being plays in overall health — and we know that sexual intimacy is a major contributor to overall health for many people.

Reaching out and starting the discussion can be difficult, and there are times when a primary care provider may not have the answers or resources available.

In that case, you can find a sexuality educator, sexuality counselor, or sex therapist in your area through the American Association of Sexuality Educators, Counselors and Therapists (AASECT).

Learn about your body

Education can be so empowering. Understanding the nature of orgasm and the role of the clitoris can help you learn what’s pleasurable for you.

Self-stimulation is one such way to learn what feels best. Does light touch or the gentle use of a vibrator work best for you? Exploration in this area can serve the dual purpose of providing pleasure as well as helping you discover what you enjoy.

If desired, you can then communicate these findings to your partner.

Get help for your bladder issues

Those with MS will often shy away from intimacy with a partner due to fear of unwanted loss of urine. In some cases, this may be the thing that leads them to seek professional help for bladder control.

A urologist may be able to provide medications or treatment for overactive bladder. If you use a catheter, empty your bladder right before intimacy to avoid leaking.

Strengthening your pelvic floor muscles may help. This may be another time to talk to your partner, as they may not be as concerned as you are. A towel under you may be all that’s necessary to help you both feel more comfortable.

Related: 6 Physical Therapy-Inspired Exercises for MS Bladder Problems

Position yourself with knowledge, a plan — and pillows

Planning ahead may seem to take some of the fun of spontaneity out of it, but planning a sex “date” may actually increase desire.

If fatigue is an issue, consider setting a date for the morning or afternoon. If you’re waiting until the evening for your date, consider practicing a bit more self-care that day. Try taking a warm bath or getting in a midday nap to conserve energy.

If you’re experiencing vaginal dryness, experiment with different lubricants to find one that works for you. Lubricants aren’t one-size-fits-all, so if one type didn’t work well, don’t give up! Do some research and see what else is available — and then keep it on hand for date nights.

If you’re having some back or pelvic pain, try adding some pillows under your knees or behind your back. You may do well in a more upright, supported position.

Consider pelvic floor PT

Pelvic floor physical therapy is a highly effective treatment for sexual dysfunction.

It involves pelvic floor exercises (including Kegels), motor retraining (including learning how to relax your pelvic floor muscles), and other modalities, such as electrical stimulation.

A study published in the Multiple Sclerosis Journal found that pelvic floor PT helped improve arousal, vaginal lubrication, and sexual satisfaction. This was seen with or without electrostimulation.

Healthy sexuality is a uniquely individual experience with positive health benefits for body and mind. The experience can evolve and change during our many stages of life, including modifying for health conditions.

Open dialogue with healthcare providers can provide the tools for maintaining and nurturing this important aspect of life.

Erin Glace, PT, MSPT, PRPC, is a pelvic health specialist with over 25 years of experience treating people with pelvic floor problems. She has focused her passion and practice on the development of innovative and comprehensive pelvic health programs. In 2019, Erin started Mommy Care PT with the mission of improving women’s lives through online education about preparation and recovery from pregnancy and childbirth.