Last reply 11 months ago
Worsening Erectile Dysfunction

I just joined up to ask this question as I cannot seem to get it answered anywhere else and not even successfully by my Urologist so far.

Story is that I may well have MS but then I may not. If I do it’s atypical ticking many boxes but not enough and a load of other boxes which make no sense at all.

I’ve had VERY infrequent attacks since about 20 years ago (I’m talking many years apart) although each has hit me slightly harder than the last. Optic Neuritis, Inflammation of the Central Nervous System, Loss of Mobility, Weird Vibrations down my spine, tingles, pins and needles, skin sensations which frankly felt……odd….plain and simple!

I’ve had MRI’s and LP’s and way back when I even had electrodes in my hair. The next thing may be an imuno supressant to stop my immune system from attacking me so wilfully.

Anyway I’m healthy enough at the moment and this is all by the by.

In the bedroom department things aren’t so great. It started off that I wouldn’t be able to drink but other than that I was fine. Then slowly it progressed to the point where I need ED meds. First cam Viagra and after that Cialis. Cialis worked fine for ages taking 20mg to the point where to duplicate the effect of a daily 5mg tab (not prescribed on my NHS trust) I bought a pill cutter and chopped these up myself into quarters.

The early part of 2017 I had another attack which screwed things up good and proper. When I recovered from that and tried to resume my sex life I found the 20mg just wasn’t cutting it.

Since then I’ve tried the Muse urethral pellets (ouch and OUCH) but that didn’t work in maintaining the erection. Even if it did I’m not sure I’d put myself through that stinging again.

I’ve tried Levitra – No good

And I’m currently taking 40mg Cialis in one hit. 20mg used to give me a headache but now luckily I seem to have gotten over those. My urologist is happy enough for me to take this dose as I’m not getting any side effects and while it does work to an extent it’s still nowhere near what I was getting from 20mg pre-attack.

I can get an erection through stimulation but I can’t maintain this (even on my own. I spoke to the urologist about this and he suggested constriction bands. I’m no stranger to bedroom play so I’ve since tested a number of these with the 40mg but still after a short while the erection begins to subside (even though the ring is tight around the base).

I can ejaculate (even when the erection eludes me) but it is effecting my sex life with my wife of 7yrs quite badly now.

Whether I try injections or there is another option I simply don’t know anymore?!

Interestingly and strangely enough (I cannot find any incidences of this happening elsewhere) when I manage to get myself to the point of ejaculation I find the erection beginning to return. To the point that when I delay the ejaculation I become erect again and certainly if manually stimulating can continue normally. Of course by this point in a situation between myself and my wife the moment has gone and it almost seems like a cruel joke.

If anyone has any advice or can recount a similar tale they have overcome I would be greatly appreciative of the advice.

Thanks in advance.

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11 months ago

Hi @happygooner and welcome.

Hmmm, “Happy” and “Gooner” combined? I’m not sure those two words live happily together at the moment……….

Sexual problems of this nature are symptomatic of MS. You can read about it here, but you seem to be up to speed with a lot of this already :-

Whilst there are a few medications to address the “mechanics” of this, it is important not to overlook the “mental” side of this equation. Stress and anxiety, which are understandable, do not help the working of the bigger sexual organ, your brain.

You need to be totally open with your partner regarding this, as you do not need them to contemplate it being their fault and questioning their “attractiveness”.

Having said all this. what about the underlying cause of these problems, which may, or may not be, MS? Are you presently under a Neurologist and how are they progressing their investigations? It really needs a holistic approach, where your whole body needs to be treated, rather than just your “mate”!

I’m waffling now, but I hope some of this helps……….

11 months ago

Hi @happygooner,

I am experiencing v very similar difficulties, unfortunately I can’t you how I’ve overcome this as it’s still ongoing.

It took two years for me to get diagnosed as atypical ms, I had all the tests they could throw at me. I was showing indicators for Lupus and MS. Eventually MS tipped the balance. Going through the years of tests is very stressful and definitely took a toll on my mental health. This meant that my sex drive was completely non-existent and put alot of strain on my marriage.

Since diagnosis things have improved greatly. I was genuinely pleased to be told that I had MS (it’s better than the uncertainty). I’ve spoken to doctors about erectile problems and they don’t seem to bothered at the moment they’re more concerned that I get on the right MS treatment 1st.

It’s frustrating but I’m of the same opinion as @stumbler. Your going through alot, pre-diagnosis is a bloody scary time. Even if you think your coping with it fine, there’ll be alot going on in your subconscious.

Keep on at your consultant to give you some sort of diagnosis, then hopefully things will improve. Don’t put too pressure on yourself and I hope your wife is patient and understanding.

Sorry for the long winded reply with no real answers, but wanted you to know that you’re not alone 😁

11 months ago

Thanks both. I wish waiting for a diagnosis were possible but 20 years on they’re still no nearer really. Yes I’m under a neurologist presently. As i mentioned they are now considering an immuno suppressant for the first time. My tests have been constantly inconclusive.

It’s all about treating it if necessary rather than specifically putting a label on it.

Therefore for me things in the bedroom are most pressing for me currently. I always used to be very sexual and while the urge is still there it is like someone has come along and stripped you of one of the things that made you you.

I’ve considered the psychological angle before but always ruled it out on the basis that when I’m with myself and myself alone and clearly out to perform for no one other than myself the same issues rear up time and again.

I stimulate myself, I become aroused, I get hard, I continue stimulating myself, I begin to lose it, I carry on losing it, I carry on flogging a dead horse, I finally feel like the end is near and then as I do I feel it coming back to the point where if I stop and carry on I can enjoy it properly again until the time comes so to speak.

Like I said, in a couples situation this is nothing more than a cruel joke and totally un unworkable.

11 months ago

@happygooner , I just typed a long response, then lost the lot. And, it’s taken me the last three hours to get my system back up (if you’ll excuse the expression!). I’m going to try and recreate it………..

The gist of it is, how can the Neuro be considering immune-suppressants without giving you a diagnosis. The McDonald criteria ( are quite categorical about diagnosing MS.

I would consult your GP about this unsatisfactory situation as it would seem to justify a referral for a second opinion to an MS Specialist. This may allow a correct treatment to be started.

Once you can stop, or slow down your body attacking itself, then your brain has the opportunity to try and repair some of the damage that has been caused.

This may, or may not, have an impact on your present problem. But, you can still have a satisfying sex life.

You need to be open with your partner, so that they can appreciate that this has nothing to do with them and their attractiveness.

Whilst orgasm is the ultimate endpoint, it is the quality of the journey to that endpoint which is important. Whether that endpoint is actually reached can become less important, and less messy! You ask any lady whether they always reach orgasm when they are intimate with their partner………

Anyway, I feel this answer isn’t as eloquent as my original. Sorry about that.

But good luck how you progress this.

11 months ago

I completely get what you’re saying about the journey but when that’s akin to getting hearded into a cattle class train carriage then the journey is just painful. Who wants that haha?! I’ll take your advice on board but my neurologist has always been really caring so I don’t want to make any snap decisions. I’ve gone from it being related to Maybe, actual ms (this was before I was under his care), devics, most likely ms even if atypical to, it really doesn’t act like ms.

11 months ago

That should have said related to ms

11 months ago

@happygooner , I hadn’t heard of Devics, but I have heard of its alternative name, Neuromyelitis optica (NMO).

That does cloud the issue, doesn’t it? So no formal diagnosis has yet been made?

11 months ago

Yeah neuromyelitis optics is what I’ve had I think but doesn’t get to bottom of why. It’s silll completely undiagnosed and I’m not 100% sure that will every truly change. I have many experts baffled!

11 months ago

Sorry I can’t help with the male anatomy but just wanted to say that my best friend was diagnosed with Devics in 2016.
The 3wks of testing she had was unreal.
They 1st told her they wanted to rule out MS and rule out any issues that may be linked to her lupus.
It all started with optic neuritis and transverse myelitis.
So until less than 2 years ago I’d never heard of it neither. But when I was educating myself a little on it I was baffled when it came under MS Society.
So I’m guessing it’s so so similar?

Hope you get some help for your ED though.

Lisa x

11 months ago

I think you need to find a new neuro and find out what is really going on. When I was diagnosed I had a hole in my vision, my neuro told me I had a lesion barely touching my optic nerve that is why the hole was there. After I started on my DMT the hole closed up. Maybe you will have some nerves heal if you get on a treatment. Potter

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