Anyone else, venous leak with hypogonadism?

Posting in this forum is just for young members (under 40).
hypogonadal
Posts: 39
Joined: Sun Jan 17, 2016 9:54 am
Location: Saskatchewan, Canada

Anyone else, venous leak with hypogonadism?

Postby hypogonadal » Wed Jan 20, 2016 2:31 pm

Hi all,

I posted in the welcome general forum but didn't receive any responses- I also didn't notice the under 40 forum for young people. My ED problem started sometime in the late 15th year of my life, I never had normal erections without pills before since, but before I had perfect erections in my shortlived teens. Until at least 27 I could get rock hard erections with the help of Levitra. Now, I cannot get erections at all with these drugs since starting HRT and rarely I can get them without them.

Venous leak is a proven result of hypogonadism. But I fear many if not most doctors wouldn't link the too, since they don't specialize in it. For myself I was told I was normal, even though my testosterone was under 200 at times, and I complained of all the symptoms such as ED which were always brushed off with a grain of salt.

I am now 31, soon to be 32 and started therapy with clomid and anastrozole. It worked well when I started (I didnt have anastrozole at the time) but now it seems to be making me worse. It has raised my testosterone to triple what it was, but I don't feel better. My Estrogen levels skyrocketed to over 250 and my T is hovering around 650. My TSH is also high (4.5 miu) which leads me to think I may have hypopituitarism.

For me it seems my next step if I dont miraculously improve by March will be testosterone injections with HCG. I am worried HCG will cause the same estrogen like effects as CLomid but at this point I am willing to try anything, especially to save my relationship...

If I could meet anyone on here with a similiar issue to be, I would be very pleased.
31 Years old. ED since I was 15/16. Diagnosed with hypogonadism/venous leak at 31. On Clomid/Arimidex mix for HRT. Cured for a week then it stopped. In process to find a solution. Lifelong nightmare but I waited a decade + to get help.

JDavid
Posts: 221
Joined: Sat Mar 16, 2013 5:58 pm

Re: Anyone else, venous leak with hypogonadism?

Postby JDavid » Sat Jan 23, 2016 8:41 pm

Where are you located? Your best bet is probably to find a urologist who specializes in male sexual function.I have a great doctor on the west coast, Edward Karpman. Urologist who are competent to deal with complex sexual function problems are few and far between. Not to freak you out but have you been reading the implants forum on this site? Venous leaks tend to worsen and attempts at hormonal solutions to structural problems can be a very uncertain and frustrating effort. Good luck and feel free to PM.
Last edited by JDavid on Sun Jan 24, 2016 10:11 am, edited 1 time in total.
I am sixty-six years of age and dealing with gradually worsening ED for twenty years. At sixty-three I wanted something that worked reliably. I got an AMS 700 LGX implant in 6/25/13. I am entirely pleased with the outcome. My surgeon was Dr. Karpman.

merrix
Posts: 1185
Joined: Tue Oct 27, 2015 1:08 am

Re: Anyone else, venous leak with hypogonadism?

Postby merrix » Sun Jan 24, 2016 1:23 am

Well I have gone through basically exact the same journey as you.
I won't bother to repeat my story here since I have already shared in details in VL thread in Young members and in the My Journal thread in Implants.

Read my posts there first and let me know if you have any questions.
43 yo, ED forever from VL
Fit and active
Implanted December 2015
Titan XL 24 cm, no RTEs
Dr. Eid
Activated day 13
Sex after 3 weeks
Gained length and girth
So far It works perfectly
Only one advice: Find a world class surgeon

hypogonadal
Posts: 39
Joined: Sun Jan 17, 2016 9:54 am
Location: Saskatchewan, Canada

Re: Anyone else, venous leak with hypogonadism?

Postby hypogonadal » Sat Jan 30, 2016 8:09 pm

Hi David,

I am located in Saskatchewan, Canada. I have found a urologist who specializes in sex. He put me on Clomid and later anastrozole too. When I first took Clomid, the entire sensitivity of my penis changed and I woke up twice with extreme morning wood. Shortly later all the good things vanished and my estrogen skyrocketed.

There have been studies that show testosterone replacement for those with venous leak leads to diminished or eradication of the leak altogether:

Testosterone improves erectile function in hypogonadal patients with venous leakage
http://www.ncbi.nlm.nih.gov/pubmed/18599885

The false diagnosis of venous leak: prevalence and predictors
http://www.ncbi.nlm.nih.gov/pubmed/21569215

Image
I have had no sex drive since I was 16. Between the ages of 25-27, I could get perfect erections with Levitra. Last year I had sex it wasn't working as good as it use to and now after Clomid, sometimes it doesn't work at all. But those days I had strong erections and 100% change in sensitivity of the penis after starting Clomid gives me motivation that this problem can be solved with testosterone. I had other effects other then sex, so even if I had this implant it wouldn't solve the problem at all.

My urologist thinks that the venous leak is due to hypogonadism and can be fixed through TRT. He also won't write off what he saw in the doppler, even though after I left the office I had an extreme erection for over an hour (I didn't get much of one in the office with 3 people watching).

I'm really in a pickle but getting more tests done. My next appointment is March 3rd and I have to make a decision whether to try testosterone itself instead of Clomid. So far my girlfriend is still with me but I know this can change at anytime, I really need to fix this and quick.
Last edited by hypogonadal on Sat Jan 30, 2016 8:21 pm, edited 1 time in total.
31 Years old. ED since I was 15/16. Diagnosed with hypogonadism/venous leak at 31. On Clomid/Arimidex mix for HRT. Cured for a week then it stopped. In process to find a solution. Lifelong nightmare but I waited a decade + to get help.

hypogonadal
Posts: 39
Joined: Sun Jan 17, 2016 9:54 am
Location: Saskatchewan, Canada

Re: Anyone else, venous leak with hypogonadism?

Postby hypogonadal » Sat Jan 30, 2016 8:18 pm

merrix wrote:Well I have gone through basically exact the same journey as you.
I won't bother to repeat my story here since I have already shared in details in VL thread in Young members and in the My Journal thread in Implants.

Read my posts there first and let me know if you have any questions.


Hi Merrix,

I read your early posts and saw that you have E2.

My erections and penis sensitivity changed 100% while my testosterone was high and E2 was normal.

Once my E2 got high, (266 pmol/l), I became extremely tired, had terrible anxiety and couldn't get an erection at all.

Did you only have high E2? How about testosterone?

In my case I am thinking I have had this since childhood, some type of disorder or genetic mutation, or tumor in the brain somewhere. This will be checked soon.
31 Years old. ED since I was 15/16. Diagnosed with hypogonadism/venous leak at 31. On Clomid/Arimidex mix for HRT. Cured for a week then it stopped. In process to find a solution. Lifelong nightmare but I waited a decade + to get help.

softtohard
Posts: 160
Joined: Tue Sep 13, 2016 1:34 pm

Re: Anyone else, venous leak with hypogonadism?

Postby softtohard » Wed Oct 19, 2016 11:52 am

hypogonadal wrote:
merrix wrote:Well I have gone through basically exact the same journey as you.
I won't bother to repeat my story here since I have already shared in details in VL thread in Young members and in the My Journal thread in Implants.

Read my posts there first and let me know if you have any questions.


Hi Merrix,

I read your early posts and saw that you have E2.

My erections and penis sensitivity changed 100% while my testosterone was high and E2 was normal.

Once my E2 got high, (266 pmol/l), I became extremely tired, had terrible anxiety and couldn't get an erection at all.

Did you only have high E2? How about testosterone?

In my case I am thinking I have had this since childhood, some type of disorder or genetic mutation, or tumor in the brain somewhere. This will be checked soon.


Hypogonadal.....
In what way did your sensitivity change? My sensitivity is HYPER and i suffer from PE.
My T levels are on the low side...thinking of looking in to that more.
ED since 22 years old now 36 years old. 18/July/2019, Coloplast 22 cm Dr Eid New York.
From Sweden, Stockholm, Girlfriend

hypogonadal
Posts: 39
Joined: Sun Jan 17, 2016 9:54 am
Location: Saskatchewan, Canada

Re: Anyone else, venous leak with hypogonadism?

Postby hypogonadal » Sun Nov 20, 2016 1:27 pm

softtohard wrote:Hypogonadal.....
In what way did your sensitivity change? My sensitivity is HYPER and i suffer from PE.
My T levels are on the low side...thinking of looking in to that more.


Hey SoftToHard,

Sorry I did not notice your post- I don't usually check this forum often since nobody has replied to my threads.

How young are you? Testosterone is linked to sensitivity in the penis, when lack of sensitivty occurs, it could mean you have hypogonadism (or it could be something else, regarding nerves too). However, if it were nerves, it wouldn't come and go with testosterone injections, of course.

You are lucky to have hyper sensitivity. There are multiple causes of venous leak, mine seems related to hormone deficiency.

I would like to help you out with what I can, but I need more details. Maybe start a summary of your health situation and history?

Message me if you need anything, I get those right away and then can reply back on the forum.
31 Years old. ED since I was 15/16. Diagnosed with hypogonadism/venous leak at 31. On Clomid/Arimidex mix for HRT. Cured for a week then it stopped. In process to find a solution. Lifelong nightmare but I waited a decade + to get help.

softtohard
Posts: 160
Joined: Tue Sep 13, 2016 1:34 pm

Re: Anyone else, venous leak with hypogonadism?

Postby softtohard » Fri Dec 02, 2016 8:23 am

hypogonadal wrote:
softtohard wrote:Hypogonadal.....
In what way did your sensitivity change? My sensitivity is HYPER and i suffer from PE.
My T levels are on the low side...thinking of looking in to that more.


Hey SoftToHard,

Sorry I did not notice your post- I don't usually check this forum often since nobody has replied to my threads.

How young are you? Testosterone is linked to sensitivity in the penis, when lack of sensitivty occurs, it could mean you have hypogonadism (or it could be something else, regarding nerves too). However, if it were nerves, it wouldn't come and go with testosterone injections, of course.

You are lucky to have hyper sensitivity. There are multiple causes of venous leak, mine seems related to hormone deficiency.

I would like to help you out with what I can, but I need more details. Maybe start a summary of your health situation and history?

Message me if you need anything, I get those right away and then can reply back on the forum.



Hi!

I had pretty good erections from 15-20...but they started to fade year by year. At 27 I had enough.
I started using Viagra and later on Cialis. They still work, I use a combo of 5 mg Cialis and 25 mg of Viagra.
I have been pretty sensitive, I could go slow and steady for a while but as soon as I started to thrust harder I would Ejaculate.

I fixed this problem by using creams to numb my penis a bit. it really worked. I wanted to improve my erection and went for the
EDSWT (shock wave therapy) It worked pretty good, I managed to lover my dose of pills.
But the effect started to fade away after about 3 months and a few months later I developed peyronies.
It´s at the tip of my left corpus cavernosum just under my gland. It doesn´t affect my erection much yet but there is a slight bend and my gland has started to point a little bit to the left. But if it stays like this, I'm not bothered.

2 months ago Used a cream called SR cream to treat my mild peyronies.
https://store.cure-erectile-dysfunction ... /sr-cream/
I was hesitant to use ut but finally gave in and applied only to my fernulum and around that area.

The day after I got hard but the sensation was completely different.
I ejaculated with in second.....I was shocked and scared.
My cock would twitch like crazy, It would jump up and down like I'm ejaculating.
I can even let my hands go and the nerve twitching makes me cum.
This shit is still going on 2 months later.....

So right now I have ED, Peyronies and severe PE.

As long as I can treat my PE I would be very happy!
My pills still work and I still hope my Peyronies does not develop more.

I´m 34, 6 feet, 154 pounds...yeah light weight....have a hard time to eat because of my current depression.
Other than that i´m healthy and everything is working.
T - Levels are ok, slightly low
Thyroid levels are perfect
ED since 22 years old now 36 years old. 18/July/2019, Coloplast 22 cm Dr Eid New York.
From Sweden, Stockholm, Girlfriend


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