In this episode, I (Nele) speak with Dr. Markus Heibel, a neurologist and medical director of a specialized MS clinic in Germany, about sexual dysfunction in multiple sclerosis (MS)—and, most importantly, what can help.
Sexuality is still a taboo topic for many people, even without a chronic illness. With MS, additional factors like nerve pathway changes, spasticity, pain, bladder issues, medication side effects, fatigue, mood, and relationship stress can make intimacy feel complicated or even impossible. Dr. Heibel explains how clinicians distinguish primary, secondary, and tertiary sexual dysfunction, why it’s so valuable to talk about it early, and which medical, therapeutic, and practical strategies can improve sexual wellbeing.
This conversation is inclusive of all relationship constellations and also acknowledges solo sexuality (masturbation) as a valid and important part of sexual health.
Note: This is an English translation of a German interview originally published as Episode 179 MS-Perspektive in 2023.
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More InformationTable of Contents
Introduction
Could you briefly introduce yourself so listeners know who I’m speaking with?
Dr. Markus Heibel: Yes. My name is Markus Heibel. I’ve been the medical director here in the Sauerland region for 21 years, heading a neurological specialty clinic for multiple sclerosis. We treat about 2,500 MS patients as inpatients, and we see about 2,800 patients in our specialist outpatient clinic. I truly enjoy it.
As someone originally from Swabia, I still feel homesick sometimes—but the people who work here really keep me here, because they work with such enthusiasm, dedication, and joy. That’s a pleasure to be part of.
Meet Dr. Markus Heibel
What made you become a neurologist?
Dr. Markus Heibel: It’s a bit funny, actually. I originally wanted to become a general practitioner. But at that time there were so many medical graduates—it wasn’t easy to find a position.
Then I had the good fortune to do a doctoral thesis in neurology at Ulm University with Professor Kornhuber. That was my entry into neurology, and it fascinated me—how neurology works, how exciting it is.
And I stayed. Professor Kornhuber was a well-known MS specialist, and what impressed me most was this: he didn’t only focus on anti-inflammatory therapies. He also cared deeply about the everyday problems patients faced—right there at the bedside.
He would think about practical solutions: How can this person close their shoe again—maybe by using Velcro—so they can be independent? The way he truly entered the world of people affected in such complex ways—that inspired me. And that’s probably why I’m sitting here today.
Sexuality and MS
How significant are sexual problems in MS—and how big is the “hidden number”?
Dr. Markus Heibel: Unfortunately—unfortunately—people still rarely bring it up. It remains a taboo topic.
If it comes up at all, it’s often passively—when the doctor asks directly, “Are you having any problems here?” Then many people will talk. But very few actively come to my clinic or take me aside on the ward round and say, “Doctor, I have another issue—can we talk about it?”
That happens far too rarely.
If anyone brings it up, it’s usually young men. In my experience, women often at some point… sadly… they shut the topic down, close it off, and put it away—emotionally isolate it and pack it away. That’s heartbreaking.
So the hidden number is very large. And one big reason is simply lack of knowledge—people don’t realize how many things can be done. They often can’t imagine it, but it can still lead to fulfilling sexuality.
Understanding primary, secondary, and tertiary sexual dysfunction
Primary, secondary, and tertiary sexual dysfunction—what does that mean?
Nele: MS can affect sexuality directly and indirectly. I’ve done an episode on this before and I’ll link it—but could you explain from your clinical perspective: what are primary, secondary, and tertiary sexual dysfunctions?
Dr. Markus Heibel: Yes. Let me structure it clearly.
Primary dysfunction means: problems that are directly connected to sexual response and the sexual organs—because nerve pathways are affected. For example: erectile dysfunction in men, difficulty reaching orgasm, or difficulty feeling sexual desire at all.
Secondary dysfunctions are factors caused by MS symptoms or treatments that then interfere with sexuality. For example: many MS patients take medications that dampen the nervous system—gabapentin, carbamazepine, and so on—and these can affect sexual function.
Then there are very practical barriers: pain during movement due to spasticity, spasticity in the legs that makes intercourse difficult or impossible. A suprapubic catheter—so a bladder catheter through the abdominal wall—can be inhibiting. It’s simply a turn-off. And very commonly: urinary incontinence, and more rarely bowel incontinence—if urine or stool is released during sex, that’s obviously extremely limiting.
And then the tertiary level is the psyche—because sex happens in the mind. Depression can shut down desire entirely. Stress, relationship conflicts that simmer constantly—these can remove any motivation to be sexually active.
So: primary—sexual function itself. Secondary—MS symptoms/medications and physical consequences. Tertiary—psychological and relationship factors.
How Dr. Heibel assesses the problem in practice
What matters most in the first assessment?
Nele: How important is it to understand the mix of contributing factors in an individual patient—and how do you approach that?
Dr. Markus Heibel: Exactly. And it can be quite simple as a starting point.
If someone comes to me, I ask them to bring their medication list. Then during the physical exam we can already see: is spasticity an issue? Pain? Other limitations?
Then I also screen the psychological side a bit—stress, mood, possible depression.
When do you refer to other specialties?
Dr. Markus Heibel: If the problem is primarily functional—so, on the primary level—then referrals are crucial: women should see a gynecologist, and men should see a urologist.
For women, a full gynecological exam matters, to see if there’s an anatomical or hormonal issue that can be addressed. For men, the urologist needs to clarify what’s going on medically.
Then you layer the findings: maybe there’s a functional issue and a psychological one. In that case, you need psychological support.
What makes this difficult in real life?
Dr. Markus Heibel: And that’s currently the hard part: finding a therapist who has time, and where it’s a good match. And if the partner needs to be included, it can be even trickier.
But the neurologist starts, gathers the basics, and then coordinates the next steps—neurology, gynecology, urology, psychotherapy, and so on.
What helps: realistic expectations and treatment options
What can be treated well, what’s more challenging, and what’s realistic to expect?
Nele: What can be treated well? What tends to be more challenging? And what’s a realistic expectation?
Dr. Markus Heibel: Well, to be honest—whether we like it or not—men do have an advantage here. For men, who often struggle with erectile dysfunction, there are medications that can address this quite effectively. In the vast majority of cases, it works well.
There are different options and “levels,” so to speak—some act for a shorter time, some for longer. I sometimes joke that the third one is the “weekend pill.” You take it on Friday, and then you can, well… “work” until Monday morning—until it’s time to go back to work.
What can help women—especially with dryness?
Dr. Markus Heibel: For women, it can sometimes be possible to help when the vagina is too dry, when lubrication is difficult. Hormonal approaches can help—but that absolutely needs to be handled through a gynecologist. You shouldn’t just start using a hormonal product without checking the situation properly—hormone status, the uterus, and so on.
What’s the hardest part to treat?
Dr. Markus Heibel: What becomes more difficult is sensation—orgasm difficulties, being able to reach orgasm at all, or even developing desire in the first place.
A patient story: orgasm via prostate stimulation
Dr. Markus Heibel: A young man once told me that for years he hadn’t been able to experience an orgasm through what most people would consider the “natural” way. Then he learned how to achieve orgasm through prostate stimulation. Nobody had told him that—honestly, I didn’t know either. And he said, “Now I can have an orgasm, it’s wonderful, and it works. I just had to deal with it and explore.” And his wife participates with real dedication—and it works.
Letting go of the “one right way”
Dr. Markus Heibel: That’s exactly what I mean: there are things we simply don’t know are possible until we look for options. And it becomes crucial to loosen this fixation on, “I must perform intercourse in a certain way,” and instead say: there are other ways.
“Toy support”—and the suitcase joke
Dr. Markus Heibel: That’s why I often say: maybe consider using a bit of “toy support.” People are already urging me: “Doctor, next time bring a suitcase and present toys!” Of course I’m not going to do that. But the direction of thinking is right.
The realistic goal
Dr. Markus Heibel: Realistically, there will be things you won’t be able to do exactly the way you used to. So the goal becomes accepting that and looking for other paths—to find sexual fulfillment, tenderness, closeness, satisfaction through other routes.
Why therapy can be a game changer
Dr. Markus Heibel: Let me give another example: cognitive psychotherapy. Many people think, “Oh my God—now I’m going to lie on a couch for years while someone asks me about my childhood.” No. That’s not how it works.
This can be a focused three months—sometimes each person starts alone and then they come together, or they begin together right away. They commit to talking about it—and in my experience, the success rate is quite high.
After one year, more than 80 percent are still doing well. After two years, it was still over 70 percent in a small follow-up group.
Therapists who specialize in this really know what they’re doing. And many couples tell me: “This didn’t only help our sex life—it also helped us in everyday life.”
Nele: And you learn things like using “I-messages” instead of that accusatory “you.”
Dr. Markus Heibel: Exactly—and that “ah” is the crucial part. And the nice thing is: it really does work.
Symptom management: spasticity, pain, bladder issues, and medication checks
What role do physiotherapy, psychotherapy, medication, and aids play?
Nele: How far can you support patients—especially if someone has spasticity or pain?
Dr. Markus Heibel: For spasticity, symptomatic therapy is crucial. The first key person is the physiotherapist. And if therapy alone isn’t enough, then we can add medication targeting spasticity.
There’s also a large study published in 2016 showing that physical activity and healthy nutrition can improve sexual life.
And in current MS symptom-management guidelines, one aid specifically mentioned for women regarding sexuality is a vibrator—stimulation.
For men, some couples prefer a vacuum pump instead of pills, because pills can cause nasal congestion. The pump can even be covered by insurance.
For bladder issues: empty bladder and bowel before sex, optimize medication dosing.
And we also need to check medications overall—sometimes reducing or stopping a medication that isn’t helping can improve things.
With antidepressants: some inhibit sexual function. But there are options, depending on the psychiatric situation.
Who speaks up—and why age can change everything
Who brings up sexual dysfunction in practice?
Dr. Markus Heibel: With child wish, younger women between 20 and 35 often come actively—and they often bring their partner.
For sexual dysfunction, it’s mainly young men who notice changes.
Older men and women often say: “I’m done with that topic.” And I find that sad, because sexual activity—even in older age—can improve mood and quality of life.
Nele: A 90-year-old woman once said, “I can’t rule out being pregnant.”
Dr. Markus Heibel: With age, you often become more confident. And focusing on the here and now makes a difference.
Why breaking the taboo helps MS and relationships
Why is it worth breaking the taboo—especially in MS?
Dr. Markus Heibel: A fulfilling sex life supports mood and resilience. MS adds extra stressors, and intimacy can be stabilizing—for individuals and for partnerships.
Partners, couple conversations, and therapy access
Do you include partners—and do you recommend couple therapy?
Dr. Markus Heibel: Many patients bring partners, and often simple conversation rules already help. If needed, therapy can be the next step—though access and waiting times can be frustrating.
Safety: don’t self-medicate
Is it risky to try medication on your own—could there be interactions?
Dr. Markus Heibel: Yes, you have to be careful. Some medications can interact or cause serious side effects. Hormonal creams also need proper assessment. For aids and toys, reputable shops and guidance are helpful.
What you can do yourself
What can people do themselves to reduce sexual problems?
Dr. Markus Heibel: Start effective preventive MS therapy early. Optimize lifestyle—smoking, vitamin D, vaccinations, nutrition, physical activity. And if problems occur: speak up early.
Sex toys and practical ideas patients report as helpful
What do patients say helps in real life?
Dr. Markus Heibel: For women, many report benefits from using a vibrator as foreplay. For men, prostate stimulation can help some. One couple used an artificial vagina due to severe spasticity. Others explore sensory stimulation and playful tools.
Nele: And those advisors are specialists too.
Dr. Markus Heibel: Let’s just say: thanks to the fact that sex education and sex-positive stores are much more mainstream today, people can actually get good advice and find what works for them.
What Dr. Heibel hopes will improve
What would you like to see improve in the future?
Dr. Markus Heibel: More courage to talk about it—and better treatment networks so people can get timely support.
Quickfire Round
Finish the sentence: “For me, multiple sclerosis is…”
Dr. Markus Heibel: …as a clinician, every day, a huge challenge—again and again.
Who would you like to have a fireside chat with—and about what?
Dr. Markus Heibel: With a national health policy leader—about reducing bureaucracy and documentation in healthcare, so clinicians can spend more time with patients.
Where can listeners learn more, if they don’t yet dare to talk to their neurologist?
Dr. Markus Heibel: In Germany, the German MS Society (DMSG) has a very helpful brochure on sexuality and MS, and organizations like pro familia and the Institute for Self-Determination of Disabled People (ISBB) offer educational materials.
Internationally, look for MS organizations in your country and certified sex therapists—and be cautious with paid services/platforms.
What book have you read recently?
Dr. Markus Heibel: Thomas Mann’s The Magic Mountain… and I’d love to write an “anti–Magic Mountain.”
Farewell
Is there anything you’d like to leave listeners with?
Dr. Markus Heibel: Gather information from experts—doctors, physiotherapists, psychologists, social workers. There are many ways to help you regain freedom and quality of life.
Nele: Thank you so, so much!
Dr. Markus Heibel: Thank you in return. All the best to you!
Further resources on sexuality and multiple sclerosis
Sexual health is an important part of overall wellbeing, but many people with multiple sclerosis (MS) still find it difficult to talk about intimacy, desire, and sexual dysfunction. Fortunately, several international MS organizations provide reliable information, practical advice, and educational materials about sexuality, relationships, and intimacy with MS.
The following resources are good starting points if you would like to learn more or look for further support.
Global resources
MS International Federation (MSIF) – Relationships and intimacy
Overview article on intimacy, relationships, and communication when living with MS.
https://www.msif.org/living-with-ms/relationships-and-intimacy/MS International Federation (MSIF) – Sexual problems
Explains the different types of sexual dysfunction in MS (primary, secondary, tertiary) and common symptoms.
https://www.msif.org/about-ms/symptoms-of-ms/sexual-problems/MS International Federation (MSIF) – Sexuality and MS (resource guide)
Educational resource covering topics such as body image, desire, intimacy, and coping strategies.
https://www.msif.org/resource/sexuality-ms/MS International Federation (MSIF) – Intimacy and Sexuality in MS (MS in Focus issue)
A thematic publication with expert articles and patient perspectives on sexuality and MS.
https://www.msif.org/resource/intimacy-and-sexuality-ms/
United States
National Multiple Sclerosis Society – Sexual problems in MS
Overview of sexual dysfunction in MS, including causes, treatment options, and communication tips for couples.
https://www.nationalmssociety.org/understanding-ms/what-is-ms/ms-symptoms/sexual-problemsNational Multiple Sclerosis Society – Intimacy and MS
Guidance on maintaining intimacy, emotional closeness, and communication in relationships affected by MS.
https://www.nationalmssociety.org/managing-ms/living-with-ms/relationships/intimacyMultiple Sclerosis Association of America (MSAA) – Sexual dysfunction
Practical information about sexual symptoms, contributing factors, and possible treatment approaches.
https://mymsaa.org/ms-information/symptoms/sexual-dysfunction/
United Kingdom
MS Society (UK) – Sex and relationships
Comprehensive information on intimacy, sexual health, and relationship challenges for people living with MS.
https://www.mssociety.org.uk/living-with-ms/physical-and-mental-health/sex-and-relationshipsMS Society (UK) – Sex and relationship problems
Focused guidance on common sexual difficulties and possible ways to address them.
https://www.mssociety.org.uk/living-with-ms/physical-and-mental-health/sex-and-relationships/sex-and-relationship-problems
Canada
MS Canada – Intimacy
Resource page about emotional closeness, communication, and relationship changes when living with MS.
https://mscanada.ca/intimacyMS Canada – Intimacy and sexuality
Information about sexual function, body image, and maintaining a satisfying intimate life with MS.
https://mscanada.ca/intimacy-and-sexuality
Thank you to Dr. Markus Heibel for this relaxed conversation about “the best side topic in the world”—and for showing the many ways people with MS can rediscover pleasure, closeness, and joyful intimacy.
See you soon and try to make the best out of your life,
Nele
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