Venous Leak sufferers

[defiant]

Forgive me, I have posted the following in another thread on this website regarding Sclerotherapy. But am interested to hear from the wider community.

Hello everyone,

I've been following this and other threads for some time with great interest. I used to be active on other boards but wanted to escape it all but now I want to share my story again.

I'm 32 and live in London. About 10 years ago I began to notice that my erection quality was deteriorating and suffered a particularly bad experience with a girl that truly and profoundly knocked my confidence. Since that time I have experienced huge and increasing psychological pressure to perform.

The psychological component of ED is MASSIVE and cannot be understated. Erections are a truly mind-body process which are reliant on sufficient 'signal' as one urologist I have consulted calls it. The psychological pressure to perform inhibits EQ because your body enters 'fight or flight' mode, aka the Stress Response. This is the release of hormones which severely inhibit EQ. I know I am preaching to the choir here but I just want to stress how much this impacts EQ. Processes such as digestion, sleep and arousal are all best achieved in relaxed states. Psychogenic factors severely compound this horrifying problem.

Now, about me:

32
ED worsening for 10 years
Lymphoma diagnosed and bested with chemo and stem cells 5 years ago
Post lymphoma - visited urologists
Doppler US performed - 'Minor venous leak found to be the cause of ED'
Decent inflow, poor outflow
Cialis 5mg prescribed - worked extremely well (rockstar levels) - at this point could still perform well enough without
Relationship ended, needed to be assured performance due to innate fear with next girl
Thus reinforcing dependence on pills
Sought second US with phentolomine for nerves - similar result - VL confirmed
Continued to use Cialis 5mg to good effect whenever needed with fluctuating periods of 'will it work as well this time round' to periods of assuredness in the medication when settled with a girl
VL got to me mentally, sought a consultation with a prominent London based sexual medicine team on Harley St
With no trauma evident they suspected psychogenic ED
Doppler US performed - THIS TIME I WAS TOLD TO MASSAGE THE PENIS AFTER INJECTION
FURTHERMORE during the test I would intermittently touch my penis
I worried the touching had violated fair test conditions - I was assured that not only did this NOT violate fair test conditions, it was desired.
Results: EXCELLENT INFLOW, huge PSV. Negative outflow. No VL found.
Told by the team that this was very likely psychogenic in nature. Suggested to continue cialis with partners that are understanding until such time I forget to take a pill and realise it still works well without.
Did this....
ED has continued. Psychological dependence on Cialis has increased.
I haven't had morning erections in years. Once in a blue moon.
Night erections that I notice are few and far between
Masturbation requires constant stimulation - I will lose full rigidity in a matter or 5-10 seconds
And now....I feel as though the effects of Cialis are waning.
Morning sex with a dose of Cialis the night before will result in my losing erection in minutes
ALL THE WHILE MY MIND IS RACING SO WHAT CHANCE DO I HAVE?! You MUST be TURNED ON, NOT SCARED.

I am truly scared Cialis will stop working for me one day. I don't want that.

I am still confused as to whether I even have a problem physically. I must do with no morning wood and two positive US tests.

The one negative test with excellent results however was with sexual medicine specialists. Thus contributing to my confusion. Do I have VL?! Don't I?! Either way, my dick won't work without PDE-5s. Well, sometimes in the heat of the moment I can perform without when my mind is settled and I'm horny as hell.

The sexual medicine specialist said VL is a term banded about too much. That VL is merely the natural detumescence of a penis. Of course VL exists but without clear trauma or congenital causes, the likely hood a man could develop a leak is very low. This in concert with my excellent test results led him to diagnose me with severe psychological ED, caused by a single incidence of failure to perform, compounded by reliance on drugs over the years.

So, where do I go from here? Continue to use drugs. Fine. People take statins daily. I'm no where near as worse off as some brave souls on here, God bless you all! I've even beaten cancer.

But what happens when Cialis stops working?! Do I seek this sclerotherapy. Does it even work. Is it a long term solution. What are the negative impacts. Can it be trusted. Is is peer-reviewed (I'm sure it is).

I am not at the point where I feel I need to seek surgery. But, if Cialis abandons me one day, which I feel as though it is doing, I might have to seek help.

At this point I'm still unsure as to whether I even have VL BUT, with very poor EQ and ZERO morning erections, I am forced to consider the sexual medicine specialist US a spurious result and side with NHS urologists that I do indeed have VL.

Questions:

How badly does your psych element affect you?
Does touching yourself during a Doppler US invalidate the result?
Does VL worsen?
Seeking, Razor - where are you??????? Please update us!

Pleasure to join the community!

[tomas1]

I'm a lot older than you, but I can relate to much of what you've written.
I was having good luck with oral meds, but when the pharmacies doubled the price of them, I bought some in Mexico (Levitra).
They didn't work at all and I assumed it was due to them being counterfeit (which they were).
I bit the bullet and bought some for full price at the pharmacy with the same negative result.
I bought a pump and at least that restored my size, but I really couldn't use that for sex.
Eventually, I decided to try injections and have used them for almost 3 years now.
I can conjure up erections now sans injections or pills, but I doubt they would be suitable for sex.
I also now get morning wood, but haven't tried doing any damage with them.
I'm convinced there is a very strong psychological factor involved in my case as it sounds like you have.
I never had much luck with Cialis, but Levitra and Viagra worked for a time.
Eventually, you can even try injections, but I wonder if one can wean oneself from them?

[alibaba]

I was 39 when my ED began after a bilateral hernia repair. Sucks at any age. I am sorry for your troubles. The pills can stop working over time. I don't know why. I personally think the body just gets used to them and fails to respond any more. 5mg cialis is only second tier on the daily dosing level. I took 20 mg daily for several years, then went to 40 mg. There are numerous other pills you can try. All the others worked MUCH better for me but side effects were the reason I did not use them. Viagra was better but blue vision and had to wait 3-4 hours for it to work and then quit in 30 minutes. Levitra worked better yet but again the 3 -4 hour wait, vision was distorted ( not as bad as Viagra) and backaches were horrid. I have older friends who use Viagra and Levitra with no issues. They plan their sex life like an appointment so the time issue is no problem for them either. I had fairly good luck using Cialis combined with Viagra or Levitra together too. Not all folks can take that much at one time w/o collapsing in the floor with a raging hard dick but some do.
Have you considered PT141 injections to ramp up your labido? It gives you plenty of desire that may surpass your psychological aspect. It worked excellent for me and 2 friends. I had to quit using it post prostatectomy because the intense feelings I got went to my anus instead of my penis where they always did prior. Who wants to feel like their ass is having an orgasm? Maybe I should not ask. Before the prostatectomy it worked perfect. You can buy PT141 on the internet w/o a prescription. Sometimes it made my orgasms so intense I almost could not tolerate it till I figured out a lower dose. It is one of those things you use a certain dose a while then can back off on it. I tossed a whole box off it one time after some extremely intense long orgasms as it was too much to take, this before I figured out tapering off the dose about 12 years ago.
Bimix or trimix injections are another possibility that take the psychological aspect out of it.
Best of luck to you sir.
I much enjoy news events of your royal family.

[defiant]

I commend you on your fights and brave decisions.

It really seems like VL is a downhill slope into hell.

Do they typically worsen with age?

My function was perfect up until about 22/23 and now I can't really tell if my deterioration is due to a physical cause or more a gradual psychological battle. The fact remains I still don't get morning wood.

I recall no trauma so I cannot attribute this onset of VL to anything other than bad luck?! It really is baffling.

[ocitgo]

defiant, I am have been nearly impotent since my bone marrow transplant in 1993 to cure CML. Having a bone marrow transplant made me into a 90 yrs man for several years. The research center I went to in Seattle was the very best for curing my leukemia. I am alive today but wish that urology was also part of their fantastic team. There were no meds in those days. The information and support on Franktalk has helped me more than any other source. I am satisfied with Trimix and would do an implant if my love life were more active. I have been married for 53 yrs this Month.

[alibaba]

ocitgo, CONGRATULATIONS on kicking Myeloid L ( sp?). Our neighbor was just diagnosed with it a few days ago and started chemo Monday
I understand treatments making you a 90 year old man. I was 42, had a physical and asked the doc how do I rate. He told me I had the body of a 70 year old man. 2 years ago at annual physical time with a new doc, I asked again. Still a body of a 70 year old man. Last year again, he tells me I have the body of a 70 year old man. At this rate having remained at 70 for 16 years, I expect to have a 70 year old body when I am 90. That may make the 90's hot!
Also congratulations again on 53 years. That is awesome!. Glad the trimix is doing you well.
Be well sir.
Cheers.