by Dorothyanne Brown
Dorothyanne Brown, BNSc, MSc, is a retired registered nurse living with MS. She’s been single and dating for the last seven years, despite lack of support from the medical field for maintaining her sex life. She is an MS Ambassador and has run MS support groups and other client support since her diagnosis. She’s currently writing a book on Sex and MS designed for bedside fun. Check out her blog at dabble58.blogspot.com
Multiple sclerosis (MS) is a chronic autoimmune disorder affecting movement, sensation, and bodily functions. It is caused by destruction of the myelin insulation covering nerve fibres (neurons) in the central nervous system (brain and spinal cord). This insulation, called myelin, helps electrical signals pass quickly and smoothly between the brain and the rest of the body. When the myelin is destroyed, nerve messages are sent more slowly and less efficiently. Patches of scar tissue, called plaques, form over the affected areas, further disrupting nerve communication. The symptoms of MS occur when the brain and spinal cord nerves no longer communicate properly with other parts of the body. MS causes a wide variety of symptoms and can affect vision, balance, strength, sensation, coordination, and bodily functions.
That’s the official explanation. In non-medical talk, MS is what most researchers believe an immune disease of the brain and spinal cord. The inflammation causes a bunch of disruptions, from slowing nerve conductivity to cutting it off entirely. It often first presents as numbness in one part of the body. Some people ignore the numbness and they get diagnosed with vision problems, like double -vision or blurred vision. It usually takes a long time to be diagnosed, though things are getting better on that end. It’s a common neurologic disorder, quite frequent, especially in women.
Most are first diagnosed with ‘“relapsing-remitting” ’ MS – this essentially means they have an attack (major or minor) but within a few weeks or days (or sometimes months) they recover most if not all regular function. Over time, however, the attacks pile up and the damage can stick around.
Sometimes the disease shifts into a ‘“progressive” ’ phase, where we no longer see recovery, but instead a slow decline. Some people are diagnosed with progressive MS at the start, and this is often a quicker declining disease.
Current medications for the disease focus on reducing attacks and therefore stopping the on-going damage as much as possible. There are new medications in the works that may help rebuild myelin, the sheathing around the nerves; some look to be good at reducing the damage in progressive MS. There is no cure.
So this sounds all terribly depressing, but it doesn’t need to be so – with the medications, often progression is slow. That said, it is still progressing.
With regard to relationships, MS can cause a whole bunch of problems, from depression to cognitive problems, and from numbness to paralysis. Incontinence is frequently a problem, as are muscle spasms or unusual burning sensations.
Some researchers have found that people with MS use way more brain space to do even simple tasks – because of the plaques in the brain, the highway from desire to action can be blocked. So our clever brain finds a way to work around it, but that may be on the back roads, and without a GPS. Often it takes people with MS more tries to learn something new (playing an instrument, Tai Chi) because the brain has to route the learning through different pathways. That said, once it is learned, it is retained as with any non-MS person. But learning is tiring and repetitive. Communication and understanding is important.
So how does this affect the person with MS’ sex life?
Well, to start with, sometimes it is difficult for a person with MS to concentrate. The brain damage caused by MS disrupts the usual brain pathways and may make it difficult to get the process of arousal started. In many cases this requires patience and time to start up. Massage or sensory stimulation, especially of non-genital areas, can often act as a pilot light.
It is common to have difficulty with response, as well – men may have erectile difficulties, women may have trouble lubricating. It’s a good idea to have a chat with your doctor if this is the case. Women can often get by with lots of lube; men may need medications. They work well in MS.
Orgasm can be difficult as well, given that those areas in the central nervous system may have demyelinated. This doesn’t mean it is impossible – often a vibrator or masturbation device can provide enough additional stimulation to get things going!
For women, you may find that you need a strong vibrator to reach orgasm. Visit your nearest sex-positive sex toy store and ask around. Different vibrators have different ‘“tones”. ’. You may find that you are hypersensitive and only need a light touch. It’s important to experiment.
Men may find the lifelike “‘mouth” ’ toys off-putting or just what they want, but there’s oh so much to play with!
Incontinence of urine is common in MS. The nerves controlling bladder emptying are often disrupted. It’s a good idea to pee before intercourse (or self-catheterize) to avoid spills, and afterwards to avoid any risk of infection. If a little bit spills, who cares? It’s all pretty wet down there, we hope, anyway! Put a waterproof sheet on your bed and enjoy!
MS can cause painful muscle spasms, before, during and after sexual contact. It’s important for the partner not to feel they have caused the spasm. (Unless you were doing some wild acrobatic thing…) The spasms can be controlled with medications, but these have side effects of reducing sexual response. Some people find medical marijuana is useful in cutting down on spasms without the effect of loosening bladder muscles as well. Botox is good for ongoing persistent spasms. It’s not used unless they are persistent. Sometimes Botox is used for bladder spasms as well.
Baclofen pumps can also be prescribed – – they cause fewer side effects as the medication is delivered locally. They work much like an insulin pump.
Of course the biggest challenge in intimacy and MS is the overwhelming fatigue the disease causes. This is an unusual fatigue, similar to what you would have with the flu. It can hit at any time. This can be frustrating for both partners, as a plan for some fun may have to change if the person with MS is exhausted. Sex can be tiring, also, so it’s important to plan for opportunities, and be flexible if they don’t occur. It’s not all about intercourse. Sex and intimacy involve so much more. Simple touch may be enough for one time; taking turns may work for some; grabbing the moment when you can might be the best for others.
MS isn’t a reason to avoid intimacy, unless you want it to be. What you may lose in energy for the next day you gain in enhanced connection and general wellness.