At first, Seattle-area resident Kellen Prouse blamed himself when sex became an ordeal after he was diagnosed with primary progressive multiple sclerosis. “I’m 27, and I’m saying, ‘What is wrong?’ It was hard to admit it was part of MS at first.”
Six years later, problems such as limited stamina and numbness below the waist continue to affect the physical relationship between Prouse and his wife Meghann. But they’ve adjusted by changing expectations and expanding how they view sex.
“It’s similar to how I look at using a wheelchair. It doesn’t change the fact that I go out. But I have to change how I go out,” Mr. Prouse said. “It’s the same thing with intimacy. It’s not that you have to give it up completely, but you should be open to new things and to communicating with your partner.”
Sexual problems are common among people with MS, although they’re often hidden. The good news: Experts say treatments can help reduce the impact of the disease on intimacy, and they support the strategy that the Prouses embrace – a commitment to flexibility and communication.
How many people with MS are affected by disrupted sex lives? No one knows for sure, but research suggests most patients have sexual difficulties. In a 2018 study conducted by researchers at the Cleveland Clinic, nearly two-thirds of 162 patients with MS acknowledged that they had sexual problems (International Journal of MS Care. 2018: 191-197).
credit: Meghann Prouse / www.photomegs.com
But a mutual conspiracy of silence may prevent physicians and patients from addressing sexual dysfunction. “I don’t tend to be proactive about bringing it up,” acknowledged David H. Mattson, MD, director of the Indiana University MS Center.
And patients may keep quiet too: “If I don’t ask about (sexual concerns), patients do not talk about it,” said Amy B. Sullivan, PsyD, a psychologist who works with patients with MS at the Cleveland Clinic.
“There is a stigma associated with discussion of sexual intimacy, yet it is a vital part of a romantic relationship,” Dr. Sullivan said. “I find that when partners are not intimate – and intimacy can come in a number of different ways – their relationship is usually compromised.”
Dr. Sullivan encourages patients to “start by talking to their partner and keeping the lines of communication open … and talk to your provider to find ways to manage this.”
Dr. David H. Mattson
Dr. Amy B. Sullivan
Dr. Kathleen Zackowski
A variety of symptoms that accompany MS can affect sexuality:
“Depression is truly part of the pathology of the disease, and it’s well-known that depression can affect intimacy and sexuality as well,” said Kathleen Zackowski, PhD, senior director of patient management, care and rehabilitation research at the National Multiple Sclerosis Society.
Talk therapy and medication may help patients with depression. But medication may need to be adjusted or changed if it sparks sexual problems, Dr. Sullivan said. “Many antidepressant medications can include loss of libido and delayed orgasm as a common side effect.”
People with MS can experience fatigue that’s not relieved by rest. “It’s not so visible, so [other] people don’t really get it,” Dr. Zackowski said. Unfortunately, “there’s really no good medication for fatigue.” Conserving energy – saving it – is the best solution, she said. Advise patients to “find ways to conserve (energy) and use it when you need it.” In physical intimacy, it’s helpful to “find positions and activities that are not so energy consuming.”
People with MS can have trouble moving their bodies, especially when they’re excited, Dr. Zackowski said. Medications can improve spasticity, but may cause side effects like sleepiness. Adjusting patients medications can sometimes make the difference that allows them to do what they want to do in a given day, she added.
Bladder and bowel accidents
Bladder and bowel problems can usually be managed by establishing regular eating and toileting schedules, and medication adjustment in some cases. “With good communication, a little urine won’t destroy a rewarding sex life. Concealing the problem and the anxieties associated with it might,” according to information from the National MS Society.
Genital problems in women
Women with MS may experience vaginal numbness, decreased lubrication, and muscle weakness. Possible strategies to address these symptoms include medication, increased stimulation by your partner’s mouth or hand, the use of sex toys like vibrators, and Kegel exercises. Some women with MS express losing interest in sex. Information from the National MS Society notes that “women can experience sexual pleasure even in the absence of a powerful drive. … In the movies, desire is always sparked in both partners at once. In real life, one partner produces sexual interest in the other through play — teasing, flirting, and foreplay. Many couples discover that the loss of intense sex drive simply means more flirting and foreplay” is needed.
Genital problems in men
Men with MS can lose sensation in the genital area and the ability to have erections. The National MS Society advises that medications for erectile dysfunction are appropriate for some men. The “penis pump,” a vacuum tube device that’s used with a band that is placed around the base of the penis, can also be prescribed for these patients.
Kellen Prouse, the Seattle-area man who developed MS in his 20s, has made many adjustments as his condition has worsened. He no longer works at his job with a supplier of theatrical and lighting equipment. Now, he stays home with his 10-year-old son and recently got a wheelchair.
Both Kellen and his wife, Meghann, a wedding and portrait photographer, encourage people with MS to be flexible about how they look at sexuality. “One of the big things is changing the idea of what intimacy is. You have to relearn everything about intimacy,” said Meghann Prouse.“Intimacy isn’t just sex. It’s more than that … It’s not always sex or penetration. It’s being with this person. We’ve always laughed together, even during sex. When we can find some time to be close and laugh, it feels like nothing’s missing.”
More information about MS and sexuality, is available in an online guidebook from the National MS Society: www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Intimacy-and-Sexuality.pdf