Erectile Dysfunction

[PhilC]

My GP thinks my ED is as a consequence of having CMT Type 1. I have been prescribed Viagra and Cialis but only the latter works although the time frame varies from dose to dose.

ED seems to be a problem with only a tiny percentage of male CMT sufferers and as a consequence it has proven very difficult in the UK to get advice.

Has any other member of the group received advice on this side effect of CMT?

Has anyone tried alternative substances such as horny goats weed which the Chinese claim overcomes the problems related to the peripheral nervous system?

[CMTUnitedKindom Partner]

As far as I'm aware, this is not a side effect of CMT - this function is controlled (I believe) by the autonomic nervous system which is slightly different to the peripheral one, and not affected by CMT.

I think the incidence is small due to the relatively small number of people affected by CMT and ED. It's like deafness, in reverse - many people believe their deafness is due to CMT, but that's a very common problem within the population, therefore, a large number of CMTers are bound to be deaf..... Do you get what I'm trying to say?

I would suggest, though, to be absolutely sure, that you make an appointment to see your neurologist (if you have a good one) and ask his opinion, just to rule out CMT definitively.

Karen

[PhilC]

Thanks for your reply, the autonomic nervous system is of course part of the peripheral nervous system and it would appear recent research has proven a link between CMT and ED.

The enclosed link may be of interest - ncbi.nlm.nih.gov/pubmed/803...

I understand your point and I did wonder if it was aged related but I have had all the test for blood pressure, diabetes and Testosterone level and all are normal.

Sadly the NHS in this area appears to be totally disinterested in anyone with neurological conditions and offer zero support services. My GP is similarly as much use as a chocolate tea pot and is not interested in refering me to anyone for further investigation thus the reason for my original enquiry.

[trout2ts]

Hi Phil,

I am a Psychosexual therapist and also have CMT type1...which is a side issue! But I work with clients who have sexual dysfunctions such ED.

I see that you have had all the relevant hormone checks and test, which would be my first line of enquiry with any of my clients presenting with ED. Has your GP offered you any psychosexual therapy? As part of the ED you maybe suffering some psychological anxieties which will be impacting on your ED. Psychosexual therapy will help you to understand your ED and work with the anxieties that maybe impacting on the dysfunction, causes and look at what you can do to manage the dysfunction.

I would certainly recommend you see your neurologist to explore this issue if it is related to CMT and it's impact, and also ask whether they need to refer you to a urologist for further explorations.

I

f your GP isn't able to re fer you to a Psychosexual service, am not sure whereabouts in the country you are, you can find qualified psychosexual therapists on the College of Sexual and Relationship Therapists website.....cosrt.org.uk/therapist_list.... Please do not be embarrassed by this condition as it is one of the most common presentations in men that we work with.

If you want any more help or have any further questions I am happy to give you my direct email to contact in a less public forum.

Warm regards

Lorraine

[PhilC in reply to trout2ts]

Thanks for the advice, I'd never considered this aspect. I'm in East Sussex, any recommendations? A direct email would be useful.

Regards,

Philip

[HorshamMalc]

I've not had ED as such, but I have noticed over the last decade or so a gradual reduction in sensitivity in that area. Whilst I still have the drive and capability, I just don't get the sensory highs that I used to. I'm 59 and don't know if this is normal for guys of my age, or a CMT (type 1a) thing? Men don't tend to talk about these subjects like the girls do!

[PhilC in reply to HorshamMalc]

Well Malc, I'm 61 and to be honest I think your loss of sensory highs is more age related. Someone once said to me" if you eat the same breakfast everday you get a bit bored after the first few years" lol I realise now my CMT has been effecting my sensitivity for years but this was a bonus as I took ages to orgasm and women thought I was superman ! Now I know there is a price to pay for those earlier enjoyed powers.