MS and Sex: Everything You Wanted to Know but Were Never Told to Ask
Columnist John Connor explores possible solutions for sexual dysfunction in men
Now, I know the phrase “I’m going to do my own research” has become a catch-all for conspiracy theorists who are out to prove spurious nonsense, merely by finding even more spurious websites they can whirl down like Alice falling through that there looking glass.
Proper research costs serious money and can involve such protocols as double-blind testing. In this case, neither the researcher nor the subject knows who’s actually getting the drug. You could be on sugar pills for two years — as I recently might’ve been had my leukocyte count not been too low. This was the subject of a recent column.
But it’s also possible to do proper “research” by finding reputable websites or scientific papers. It’s the sort of initiative you’re taught to do as an undergraduate or journalist. If one’s been both, the interweb is eminently traversable.
Since becoming a co-moderator for the MS News Today Forums, I’ve had to delve deeper into the world of medicine. I have absolutely no scientific background except for a nerdy obsession with the outer reaches of physics. However, I’ve gotten used to researching all kinds of subjects for members, or trying to work out the acronyms they’re using. Something that I’m prone to using too many myself. Bad moderator.
I do have a proven history, before becoming a moderator, of delving into my persistent UTIs. There I go again — urinary tract infections. Urologists kept telling me there was nothing the matter with me! I went so far as trying Eastern European phages from an institute in Tbilisi, Georgia. Every microbe has its very own microbe that feeds on it. Darwinism is all-consuming.
And I was, with the help of a multiple sclerosis (MS) nurse’s extensive knowledge, able to ferret out one of the few urology departments here in the U.K. that can treat such long-term UTIs. In fact, I’m still being treated by them and no longer get floored by consistent infections. I always have the antibiotics to deal with them.
So I applied the same logic to sex and MS in men. Reputable sources tell us that about 70% of men with MS will have erectile difficulties. The MS Society website additionally notes that “there are no treatments yet that really help with ejaculation. Ejaculation and orgasm are much more complicated processes than genital arousal, and are very hard to achieve without intact connections between the spinal cord and brain.”
Fair enough, but that didn’t stop me from looking for a treatment. Were any MS researchers looking into this? None that I could find. The only scientific papers I discovered about male sex and MS were from Iran and written by female scientists! That was unexpected.
So I dropped the MS bit and just went looking for anything to do with ejaculation and disability in men. I found something: an article published in 2007 in the Journal of Urology called “Midodrine improves ejaculation in spinal cord injured men.” Since MS affects our spinal cords as well, I wondered if this might work.
That was four or five years ago, and I asked my MS nurse at the time to refer me to someone. Nothing happened, but I already had more than enough to deal with. Then, as my MS worsened, so did my ability to orgasm. I realized this was another part of my being that would soon be gone.
In fact, the last time was February 2020. I was on a full course of steroids during a brief break my wife and I took at the seaside. I needed them to break through the logjam.
But the next time I took a course of heavy-duty steroids, nothing. It was this, among other reactions, that convinced me I’d moved onto secondary progressive MS (SPMS). The next time I had a phone consultation with my neurologist, he confirmed it. Ah, well. He also suggested I get a referral from my general practitioner regarding a possible midodrine prescription. So I did.
This led me to seeing a uroneurologist at my local hospital. I went armed with my research, expecting a battle, but he was miles ahead of me. He even prescribed a daily dose of Cialis (tadalafil) as well as midodrine.
The Cialis has yet to be procured, as the dosage was outside National Health Service guidelines. Privately, it would be £2,000 to £3,000 a year (that’s about $2,417 to $3,625 in the U.S.). Certainly not justifiable, especially with energy prices about to blow the roof off. Winter would be even colder! Still, there’s an American company that sells the medication far more cheaply, though I haven’t used it yet, as the payment process is fearfully complicated.
The consultant also told me he was used to prescribing midodrine for people with conditions such as cerebral palsy, Parkinson’s disease, and spinal injuries. When I asked him about MS, he said, “Hardly ever.”
But even though I have SPMS, the midodrine has worked!
Pity I don’t smoke.
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