ED & type 1

[paulfear85]

Mainly calling to the men folk on here.
Have any of you experienced severe ED as a result of T1. I'm 33 and haven't had any usable function for 13 months now.
I've had 7 GPs dismiss me and one who prescribed medication I've tried Viagra for 6 months at all doses and Cialis at all doses and not even a blip. I've tried pumping but that only makes it full size but not usable in any way.
I've got a girlfriend of 17 years and she is so understanding but I'm beginning to feel it's unfair to ask her to go potentially the rest of her life without the full experience we are still very intimate but it's not satisfactory for me. I'm also diagnosed with Hypersexuality which makes things even more frustrating. Although I constantly want sex and I'm horny all the time I very rarely think about the ED anymore because it's been so long, it's definitely a physical dysfunction and not a psychological one (I'm very confident in that department my manhood just doesn't play along anymore)
All GPs have refused referrals to a urologist and I can't afford one privately. To quote one Dr 'it's game over for you lad'.
I just want to know other people's experiences or what's worked for you. Thanks in advance P

 

[WuTwo]

Do you have a diabetes consultant you see at the hospital periodically? If so, would they refer you? That's a lot of GP's have refused help but I think I'd want a diabetes specialist to discuss it with me. At 33 you shouldn't just be chucked on the scrapheap and I do think you need more specialist advice,

 

[DCUKMod]

Mainly calling to the men folk on here.
Have any of you experienced severe ED as a result of T1. I'm 33 and haven't had any usable function for 13 months now.
I've had 7 GPs dismiss me and one who prescribed medication I've tried Viagra for 6 months at all doses and Cialis at all doses and not even a blip. I've tried pumping but that only makes it full size but not usable in any way.
I've got a girlfriend of 17 years and she is so understanding but I'm beginning to feel it's unfair to ask her to go potentially the rest of her life without the full experience we are still very intimate but it's not satisfactory for me. I'm also diagnosed with Hypersexuality which makes things even more frustrating. Although I constantly want sex and I'm horny all the time I very rarely think about the ED anymore because it's been so long, it's definitely a physical dysfunction and not a psychological one (I'm very confident in that department my manhood just doesn't play along anymore)
All GPs have refused referrals to a urologist and I can't afford one privately. To quote one Dr 'it's game over for you lad'.
I just want to know other people's experiences or what's worked for you. Thanks in advance P

Hello Paul - I'm female, so not in your desired response group, but by post will lift your thread up the reading lists.

Just one question from me: Do you see anyone relating to your hypersexuality, or has that been labelled and you're left to your own devices? My thoughts were if you see someone relating to that, you could discuss this with them?

 

[paulfear85]

Do you have a diabetes consultant you see at the hospital periodically? If so, would they refer you? That's a lot of GP's have refused help but I think I'd want a diabetes specialist to discuss it with me. At 33 you shouldn't just be chucked on the scrapheap and I do think you need more specialist advice,

My DSN has said better control may help which I've spent a year doing my Hba1c has gone from 128 to 44 in the year and no improvement in any way with the ED. She said there's no finding for a urologist as it's non urgent and not medically necessary to see one. If I was in my 50s 60s or 70s I'd probably be thinking well that's my lot between ageing and being diabetic. But I'm 33 lol. I was 27 when diagnosed so i think to be at this point already is quite severe. I've also read that severe ED can be a warning sign of heart disease but they haven't shown much concern when I've asked about this they just say don't worry your still young. So which is it I'm old enough for my sex life to be over but not old enough to have a heart disease risk. I used to have a really good relationship with my GPs but I feel let down by this particular situation. I can phone reception and ask for anything on prescription and I have it by the end of the day. They gave me 30 viagra a month so if I wanted I could go every day, in pain I can ask reception for a months supply of tramadol and have it within hours but asking to get a specialists opinion on my situation is to big an ask. Although on a daily basis I'm not completely focused on my ED its not on my mind all the time but I am bipolar so it can really affect my depressive state and also my mania. Maybe my ship has just sailed or I try and save really hard to see one privately.

 

[WuTwo]

I'm trying to think of alternatives where you might get referred. It seems absolutely wrong at your age to be more or less written off!

There has go to be something, surely!

 

[InsulinWarrior]

Have you had your testosterone checked? Having low T and other hormones out of whack can cause ED issues.

 

[wiflib]

This is what NICE has to say.

I’m bemused to what a DSN has got to do with a referral and why seven doctors have refused to do it.

https://cks.nice.org.uk/erectile-dysfunction#!scenario

 

[paulfear85]

Have you had your testosterone checked? Having low T and other hormones out of whack can cause ED issues.

Yes it's tested along with thyroid at every diabetic review (every 3 months) thyroid is always normal and my testosterone is always very high for my age they say, I had thought that could be part of it but apparently not. The way it is with me I definitely think it's vascular in nature not nerve damage or neuropathy as there's been no change in sensation.

 

[paulfear85]

I'm trying to think of alternatives where you might get referred. It seems absolutely wrong at your age to be more or less written off!

There has go to be something, surely!

I've asked my mum to discuss it with her GP as she is at a different medical practice to me if they seem more willing I'll change practices

 

[paulfear85]

Thanks everyone for at least responding I thought the subject matter would be too taboo as people don't talk about it openly.

 

[DCUKMod]

My DSN has said better control may help which I've spent a year doing my Hba1c has gone from 128 to 44 in the year and no improvement in any way with the ED. She said there's no finding for a urologist as it's non urgent and not medically necessary to see one. If I was in my 50s 60s or 70s I'd probably be thinking well that's my lot between ageing and being diabetic. But I'm 33 lol. I was 27 when diagnosed so i think to be at this point already is quite severe. I've also read that severe ED can be a warning sign of heart disease but they haven't shown much concern when I've asked about this they just say don't worry your still young. So which is it I'm old enough for my sex life to be over but not old enough to have a heart disease risk. I used to have a really good relationship with my GPs but I feel let down by this particular situation. I can phone reception and ask for anything on prescription and I have it by the end of the day. They gave me 30 viagra a month so if I wanted I could go every day, in pain I can ask reception for a months supply of tramadol and have it within hours but asking to get a specialists opinion on my situation is to big an ask. Although on a daily basis I'm not completely focused on my ED its not on my mind all the time but I am bipolar so it can really affect my depressive state and also my mania. Maybe my ship has just sailed or I try and save really hard to see one privately.

Paul, how long were you running at high numbers? If it was a while, it could be taking a while for everything to improve.?

It sounds like you might be taking a few meds, in addition to your straightforward insulin. You mention Tramadol, at least? In your shoes, I would be looking into whether any of my meds might be conflicting with each other, and examining the Patient Information Leaflet every one, so see if any list ED as a potential side effect, even if a low chance.

For interactions, this site can be helpful.: https://reference.medscape.com/drug-interactionchecker

Have you explained your concerns about your ED potentially signalling heart disease?

Although I can see how attractive changing GPs might be, it sounds like your existing GP is good in other important respects. It would be awful to change GPs to find you have a sympahetic ear regarding the ED, but can't get appointments ot other stuff you need.

 

[paulfear85]

This is what NICE has to say.

I’m bemused to what a DSN has got to do with a referral and why seven doctors have refused to do it.

https://cks.nice.org.uk/erectile-dysfunction#!scenario

Thank you that was an interesting read. I know my bipolar meds which I've only recently started have affected my libido but the problem was there long before. I haven't given up hope it's just frustrating I keep coming up against walls.

 

[paulfear85]

Paul, how long were you running at high numbers? If it was a while, it could be taking a while for everything to improve.?

It sounds like you might be taking a few meds, in addition to your straightforward insulin. You mention Tramadol, at least? In your shoes, I would be looking into whether any of my meds might be conflicting with each other, and examining the Patient Information Leaflet every one, so see if any list ED as a potential side effect, even if a low chance.

For interactions, this site can be helpful.: https://reference.medscape.com/drug-interactionchecker

Have you explained your concerns about your ED potentially signalling heart disease?

Although I can see how attractive changing GPs might be, it sounds like your existing GP is good in other important respects. It would be awful to change GPs to find you have a sympahetic ear regarding the ED, but can't get appointments ot other stuff you need.

I have spoken to them about the cardiac risks they just said I was young so don't worry too much they did do a blood test and said there were no markers. I was not well controlled for quite some time when first diagnosed with type 2 because I was 30 stone but in the first year I went down to 11.2 stone as they were only giving me metformin on the presumption I was T2 it wasn't until I went into DKA that I met my DSN and she immediately put me on sliding scale insulin I felt better within 24 hours but had my first hypo the next day she prescribed an insulin regime send my weight stabilised. Then a consultant did a blood test and DNA screening at he said I was T1 genetically and I'd had what they call a honeymoon period and I was lucky to have it last till 27. The tramadol was for acute pain quite a while ago I no longer take it. Initially it was when my bloods were in range that the ED presented itself whereas if I ran slightly higher there was no issue. But now there's nothing that makes a difference.

 

[Mike d]

You at least had the courage to post about it .... men are generally too timid. Hope you find your way through it.