Is it really not venous leak?

[ForeverBroken]

Hi

I recently was referred by a urologist for a Doppler Ultrasound, as I’ve tried different treatments which have had no impact, and I’ve not yet had a diagnosis of the cause.

When I had the ultrasound, I was injected with Caverject (unsure of the dose) which did not produce an erection. The radiologist conducting the test said that I should have got an erection after 5 minutes, but nothing happened - the impression I got from him was that this was confirmation there was a problem.

The results were given to the urologist and as I had a PSV of 40 cm/s, arterial insufficiency was ruled out (I didn’t think this was a problem - I’ve always believed it’s venous leak). His diagnosis was that the smooth muscle was not relaxing due to the environment, I.e. with having the injection done in a hospital, rather than giving a specific cause.

I’ve recently got further information from the test as I didn’t get given the EDV. I’ve now been informed this was 8 cm/s at the lowest. From researching, anything above 5 cm/s is indicative of venous leak. However, the urologist is adamant that venous leak doesn’t exist as research has recently been published confirming this. It’s been advised that the EDV value was as a consequence of not getting an erection with the injection, rather than the cause.

I honestly don’t know what to think. It’s incredibly stressful as I’m still nowhere closer to getting a diagnosis and therefore appropriate treatment. I’m 33 and still a virgin due to impotence.

Any input would be appreciated.

Thanks.

[sogwap]

However, the urologist is adamant that venous leak doesn’t exist as research has recently been published confirming this.

I have read this from several reports.

Unfortunately most doctors and urologist, seem to go with what works for most men.

In other words Viagra/Cialis works for about 80% men. They don't diagnose anything, but prescribe the pill which works for most men.
And if that doesnt work try injections which work for 80% of men when pills dont.
They even go as far as saying the next step is implant.

I find the system quite flawed.

And just as concerning (to me) is when guys say they tried ED pills once or tried the injection once and it doesnt work, they write them off.
I have had both pills and injection fail occasional fail

[ForeverBroken]

Have you seen the research into venous leak? I’ve tried to find up-to-date papers, but I can’t seem to find anything.

Yeah I don’t think they’re accepting it’s not working for me. I’ve tried all dosages of viagra and Cialis and none of it is working. I’ve had a couple of injections, they’ve not worked - I don’t really want to try Trimix because I don’t want to end up with fibrosis. Also, can’t psychologically reconcile having to inject myself there, it’s painful and not romantic at all.

I’m battling to try and get treatment. I’m in the UK so getting an implant is incredibly difficult (although appreciate some people on here with implants are from the UK), but even then I don’t know if I want one; I just want to be a normal, functioning man.

[Anonymous FT Member]

What level or how bad is the ED? Do you still get any erections at all like at night or in the morning?

I agree the treatment guys are getting does not seem helpful at times. I'm in a similar situation myself, and I've never been offered any tests. It's like the doctors in my area all go with psychogenic as the diagnosis. Perhaps they do because it is likely the easiest thing to say. If a urologist tells you it's psychogenic, then their job is done. They really don't have much more to say or do.

I have not seen an literature on venous leak, but I would like to. Your test sounds like a big waste. Obviously if you didn't reach full erection there will be a lot less blood flow to measure. So it seems rather pointless to me. To me their test was too short. They should have come up with something to make sure you did get erect for this test. I'm curious if anybody has ever done MRI. In the hellos/introductions section of the forum someone posted a link to a Russian surgeon and on that website I noticed they mentioned MRI to check blood flow in and around the penis.

[ForeverBroken]

What level or how bad is the ED? Do you still get any erections at all like at night or in the morning?

I agree the treatment guys are getting does not seem helpful at times. I'm in a similar situation myself, and I've never been offered any tests. It's like the doctors in my area all go with psychogenic as the diagnosis. Perhaps they do because it is likely the easiest thing to say. If a urologist tells you it's psychogenic, then their job is done. They really don't have much more to say or do.

I have not seen an literature on venous leak, but I would like to. Your test sounds like a big waste. Obviously if you didn't reach full erection there will be a lot less blood flow to measure. So it seems rather pointless to me. To me their test was too short. They should have come up with something to make sure you did get erect for this test. I'm curious if anybody has ever done MRI. In the hellos/introductions section of the forum someone posted a link to a Russian surgeon and on that website I noticed they mentioned MRI to check blood flow in and around the penis.

I’d class myself as having severe ED. I can only get hard from manual stimulation. I can get a full erection from that and orgasm normally etc., but as soon as I stop stimulating the election goes down in seconds. This is when I’m by myself or with a partner, but if I am with a partner their stimulation doesn’t work. I’ve never got morning wood or nocturnal erections, at best I get semis and I’ve never woken up with a full erection that takes ages to go away.

I’ve been trying to get treated for 13 years, and yeah the doctors said it was psychogenic in the beginning. I can see why because I was young when I first went to them for help and it’s less likely to be organic when someone is young, but that doesn’t meant it’s impossible. There are also things in my past that can typically be seen as triggers for psychogenic ED (past CSA, severe anxiety/depression, BDD etc.) but we all know our bodies on here, and I know when something is being impacted psychologically and when it’s not, so despite what the doctors say it’s 100% organic.

Yeah I had thought it was a bit of a waste, especially as I had to wait almost a year to have it done (from the point I was referred). Ideally I’d get another one where they inject a higher dose, just to try and force an erection - I’ve got 0% risk of priapism due to my inability to keep an erection, so I’m not worried about that. The radiologist did keep waiting to see if the medication worked, so he’d go away for 15 minutes and then come back and resume the scan again, but even after like an hour there was still nothing. I am considering asking for an MRI, again though because of NHS it will be difficult.

[Anonymous FT Member]

I know guys probably don't like to hear psychogenic as a cause, but I can relate to your situation in many ways. For about 20 years or more I've been trying to piece together the fragmented puzzle that is my sexual and reproductive health. I had what I consider an early and unwanted sexual experience at the age of 12 or 13. Around this time I started using pornography looking for answers to many questions.

To make a long story short, I've also been diagnosed or told that all my concerns are psychogenic in nature. Apparently the doctors that I've seen are so confident in that diagnosis that they don't even bother to do tests. Never offered doppler, never offered rigiscan, or even so much as a visual inspection of my erection. I'm 39 and pretty much a virgin with very little interest in sex. No desire, no drive, libido, no motivation, low self esteem, depression, anxieties, and anger. Now you tell me does that sound normal? How much of my past experiences and traumas is affecting me? All things considered, it seems very possible. I get it, because I'm sick of all this ED too, but installing an implant in a body like mine with a brain like mine doesn't seem like a good idea. Having an on demand erection won't change some of the other things.

[ForeverBroken]

I think it’s a difficult thing to hear because it takes no effort on the doctor’s part. It’s an easy diagnosis to give without having to put in any real effort.

Are you able to insist on having any tests done? Have you had your testosterone checked because of the low libido? I agree that it’s possible for trauma to have a lasting impact, but equally it’s possible for it to be a coincidence, as it’s still possible to have abuse/trauma in one’s past but still have a physical problem.

I feel the same way, I think that because I’ve gone so long without being able to perform, my body just has no desire to have sex so even if I do get fixed with an implant, I’m still not probably going to want to do it. I’m on the waiting list for psychosexual therapy; not because it’s psychogenic ED, but because I need to resolve the issues with the psychological response to my physical issue.