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#063: Finding Joy Again. Navigating MS-Related Sexual Dysfunction

Sex can be one of the best things in life and sexual dysfunction can therefore cause a lot of frustration. In this article, you will learn about the background and manifestations, what you can do about it and what role your personal attitude towards the topic plays.

First of all, when it comes to sexual disorders – talking is key. And of course, it’s not just MS patients who have difficulties with this, but the majority of people. Which is a shame, because fears, desires, feelings and fantasies should not be taboo. And open communication can expand the playing field of possibilities and pleasures immensely.

If a woman tells her husband that she no longer has the energy for sex in the evenings due to fatigue, there may be times at the weekend or in the morning when it is possible and it is no longer the supposed lack of interest that is unspoken, but a concrete problem for which solutions can be found together.

The same applies to men with MS who suffer from erectile dysfunction. Once it is clear that both sides want to continue having affection and that the only thing standing in the way is the fear of not being able to function, possible solutions immediately appear on the scene, from oral sex and mutual masturbation to sex toys. So much is possible and everything can be solved if you talk about it.

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Table of Cotents

A preliminary note

I’m always referring to couples in the classic sense here. But of course there are also other constellations for having sex. And my formulations are in no way judgmental. The same applies to gender. Diversity and equality are wonderful and all genders are always explicitly meant, even if not formulated.

How often do sexual disorders occur?

The figures vary somewhat, ranging from 40 to 80 percent for women and 50 to 90 percent for men. Of course, it depends on how long a person with MS has had the disease, what other symptoms and any permanent limitations he or she has. Compared to the average population, sexual disorders occur three to four times as often. This is reason enough to take the issue seriously, but doctors often neither address it nor offer support. Perhaps this is because it is less obvious, or because of shyness. That’s not the point here.

What is certain is that the likelihood of sexual dysfunction tends to increase over the duration of the illness. However, this also depends on how well the MS can be kept in control.

What types of sexual disorders exist?

There are three types – primary, secondary and tertiary sexual dysfunctions.

Primary sexual dysfunctions

Primary sexual disorders are caused by lesions in the spinal cord that affect sexual sensation and bodily functions.

In women, this can lead to vaginal dryness or a loss of sexual desire. The ability to arouse the clitoris and vagina may be restricted or women may experience unpleasant sensations in the genital area. This can even lead to pain during sexual intercourse, resulting in a lack of orgasm.

Men can lose their erectile function, i.e. the penis no longer becomes erect. Or there may be problems with ejaculation, which can also lead to a lack of orgasm.

Secondary sexual dysfunctions

These include secondary impairments caused by other MS symptoms.

Bladder and bowel problems, for example, can make spontaneous sex very difficult or prevent it altogether. Due to the necessary preparations, you may prefer to avoid sex from the beginning.

Fatigue may massively reduce your interest in sex.

And if you suffer from permanent spasms, you may find it difficult to find suitable positions.

But permanent pain also causes most people to lose interest in sex. And it often doesn’t help that sex and orgasm can relieve pain for a while. Because if you don’t get in the mood in the first place, you won’t be interested in later rewards.

If you are dealing with weakness or tremors, this often reduces the choice of positions that you find pleasurable and comfortable.

In addition, the side effects of some MS medications can have a direct negative impact on sexual desire and performance. This is a crucial reason to discuss the issue openly with your neurologist.

Tertiary sexual dysfunctions

In the case of tertiary sexual disorders, the psyche and social issues get in the way. This is mainly about fear of failure or doubts about your own attractiveness. If you feel sexually unattractive due to MS and the associated symptoms, or if you don’t think you can fulfill the wishes and expectations of your partner. Or if your partner takes care of you and cannot leave this role in favor of your sexual relationship.

Perhaps you struggle with mood swings, are unhappy with your body image or have little self-esteem. If you can’t resolve these issues in your relationship, then find an expert to help you love yourself and allow love or go to couples therapy. Because without a certain amount of self-love, a satisfying sex life will be difficult to achieve.

Which doctors can help you?

Your neurologist should know about this, as multiple sclerosis usually consists of a mixture of symptoms and the better your current condition is known, the better you can choose an effective treatment strategy together with your doctor. This can range from medication and physiotherapy to psychotherapy.

Other contacts are a gynecologist and urologist or a psychotherapist or couples therapist.

How can psychotherapy help you?

It can accompany you on your path to finding yourself and becoming aware of your fears so that you can then resolve them. If you learn to talk about your thoughts and desires, including the difficult issues, you can resolve conflicts better and have taken a big step forward.
When it comes to person-centered psychotherapy, it is important that the therapist is a good fit for you. If there is no relationship of trust, you won’t open up and then there is no point in sitting through it.

What can you do yourself if you have sexual disorders?

If sexual desires fall by the wayside, this can spill over into the rest of the relationship. It can lead to growing distance and conflict. To unravel this tangle, the causes should be addressed and psychotherapeutic treatment can often help.

Talk about your worries, fears and desires and admit this to your partner. Problems that simmer unspoken often seem bigger than they actually are and should be. You will definitely find solutions together and if an outsider can help you sort things out, then take this step. A happy sex life and a functioning relationship are worth the investment.

A book tip on this is Hold Me Tight: Seven Conversations for a Lifetime of Love“ by Dr. Sue Johnson. Another one is „Getting the Love You Want: A Guide for Couples“ by Harville Hendrix. It usually takes a few attempts to get into new concepts of communication between partners. But then it’s really amazing what comes out of it, how close you can get to each other again and what impact it has on the relationship. Even other relationships can benefit from it. Because if you master the concept of dialogues, you become a better listener.

Practical tips for physical symptoms

If you have vaginal cramps, a dry vagina or reduced sensitivity in the clitoris and vagina, you can strengthen your pelvic floor muscles with special exercises.

If your muscles are weak, it’s worth trying out different positions. Hopefully you will find one or two that work for you.

If you suffer from bladder or bowel problems, or if incontinence is a problem, then you should drink less before sex and only replenish your water balance afterwards. Going to the toilet directly before intimacy or self-catheterization to empty the bladder are helpful. Men can use a condom.

Regular bowel emptying can also be helpful to avoid unpleasant surprises. For fecal incontinence, there are also anal tampons that can help give you the confidence to stay relaxed during sex. And it’s better to postpone eating until after sex, as it stimulates bowel movements.

Why time and tenderness are so important.

Take plenty of time for caresses of all kinds, starting with kind words and compliments and continuing with physical caresses. And remember, anything can become an erogenous zone – ear, neck, arm, foot, or try a head or foot massage. The „Addams Family“ comes to mind, where Gomez always kissed his wife Morticia’s arm so wildly. Or when Philippe, a quadriplegic, has his ears stimulated in the movie „Pretty Best Friends“. Just talk about what you like and what excites you. Your partner will find it great to give you sexual pleasure and enjoyment.

It is also important that intimacy takes place without pressure. In other words, not with the predetermined result of an orgasm. Even this simple basic agreement can contribute immensely to relaxation.

Make yourselves comfortable – with nice music, a pleasant scent, a feel-good temperature and dimmed lighting. Anything that you both like and feels good is allowed. Laughter is also always wonderful and has such a relaxing effect. If you can laugh together, you are on a level that can help you overcome many difficulties.

Or how about just thinking about the first phase of falling in love again or complimenting each other on what you appreciate, love and admire about each other. Because being loved is something very beautiful and you can’t always assume that your partner knows that you still appreciate, love and find him or her desirable.

Of course, it is also completely legitimate not to want to have sex and to create and maintain a sense of togetherness in a different way. If both sides see it that way, everything is fine.

What medication and aids are available to treat sexual disorders?

Aids

Of course, this always depends on the symptoms present.

Vaginal gel can help with a dry vagina.

If you simply feel less in the genital area, masturbation, oral sex or sex toys can help to achieve the necessary arousal to reach orgasm.

Vaginal cramps, also known as vaginismus, can be improved with targeted training using a vibrator.

For erection problems in men, there are vacuum pumps or penile implants or the much less complicated switch to oral sex and masturbation.

In the case of incontinence problems, self-catheterization before the planned togetherness can provide relief. For bowel problems, anal tampons and regular controlled emptying by means of transanal irrigation can be considered.

And if the spasticity prevents or makes penetration of the penis difficult, you can train with a vibrator. You can find out more about spasticity in episode 47.

You may also like erotic pictures, videos, series with erotic parts or audio books. As long as you decide together and are in agreement, anything goes.

And remember, sex always starts in the mind. Which is why the whole setting is important.

Medication

For erectile dysfunction, there are prescription tablets or injections into the penis. The dose of both can be individually adjusted. If this is followed by erotic stimulation, the desired success is usually achieved. In some cases, health insurance companies even cover the costs. Asking can save money.

In addition to medication for the treatment of MS symptoms, which I have already mentioned, it is also worth checking the medication you take regularly. Perhaps they are having a negative effect on your pleasure in one or the other way. The usual suspects are antidepressants, antispasmodics, blood pressure and lipid-lowering drugs, tranquillizers and oestrogens. However, please always talk to your doctor about this. Self-medication can be very dangerous.

And if the spasticity prevents or hinders penetration of the penis, antispasmodic medication can be helpful. It is important to find the right dose here.

What is the best prevention against sexual disorders?

With regard to multiple sclerosis, it is the effective disease-modifying therapy that you should support as much as possible with a healthy lifestyle. Give up smoking. Eat a healthy diet. Drink enough sugar-free drinks and only a little alcohol. Exercise and stay mentally active. And try to be as calm as possible and find your inner balance.

I would also like to repeat the tip from the beginning: talking is key. Both with your partner and with the doctors treating you. Solutions can always be found. You just have to explain the problem to your partner first.

Food for thought

There are great examples of people and couples on social media and the Internet in general that show how good communication can work. I’m sure that you can find one or more who you like and whose statements will help you.

Look around and find channels that suit you. I tend to read about these topics in my native language, German, so I’m not an expert in the field. But I’m sure that there are good accounts in every language that can help you to find your own body beautiful and therefore be more relaxed about intimacy and sex. Because at the end of the day, it’s all about having fun and feeling pleasure.

Question for you

Do you talk openly with your partner about your fears, wishes, worries and what you like? Or do you find this difficult? And if you find it difficult, how could you change it and what would be a first step in this direction?

Thank you for listening. I hope it wasn’t unpleasant for you. Because I think it’s important to talk clearly about love and lust so that your quality of life remains high, and for most people intimacy is part of that. And if I had used a lot of paraphrases, my message would have been difficult to understand. So be aware that there is a solution for pretty much everything as long as you talk about it.

See you soon and try to make the best out of your life,
Nele

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Nele Handwerker

Blogger & Patient Advocate

I show you how to make the best of your life with MS from family to career to hobbies. Thanks to science and research, a lot is possible nowadays.

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