How many are we?

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PFracture

Re: How many are we?

Postby PFracture » Wed Mar 02, 2016 5:18 am

Those are some quite specific tests! Are you by any chance going to San Diego, California to do them?

Tyreron
Posts: 10
Joined: Tue Jul 16, 2013 5:34 pm

Re: How many are we?

Postby Tyreron » Thu Jun 23, 2016 3:51 pm

Hmm, I'm 44 years. VL from 16 years old. Did a surgery 1997 and that did it much better. But the last years my ed got worser again. Strong side effects from Viagra and Cialis. Caverject also. Live in Europe. Considering a implant in US. My urologist in Europe don't recommend implant.

One of my threads:
viewtopic.php?t=3440

I' m married, had to kids and a very active life. But my ed is a problem...

mrg5870
Posts: 9
Joined: Sat May 07, 2016 4:53 pm

Re: How many are we?

Postby mrg5870 » Wed Jul 27, 2016 10:21 pm

hey guys,i am 24 my e.d started at 20-21 because using penis pump in high pressure to getting my penis bigger and injured my penis horribly..before incident never have e.d problem at all and even didnt know what is e.d but now my penis is totally numb(total lifeless) and very hard to maintain erection,weak orgasm plus horrible shape and color(become darker cause under skin bleeding) ..consider to do total phalloplasty plus implant.. i think nobody in this site did it before but appreciate if anybody share his story if did it or know about it. thanks

lapiste
Posts: 20
Joined: Sun Jun 28, 2015 3:34 pm

Re: How many are we?

Postby lapiste » Wed Sep 21, 2016 8:08 pm

Hi all,

I'm 33yo and I've had ED for my entire life, due to venous leak. I found out something was wrong when I started dating girls in my late adolescence. It took me a couple of years to get the nerve to consult with a doctor about it. Unfortunately my GP was on annual leave when I finally gathered the courage to go and was seen by her sub, who was completely dismissive about it and said it was all in my head. At the time I was 20 and very confused about what was happening. Her attitude made me lose another year before having the courage to consult again, that time with a urologist. The guy didn't take me seriously either but still prescribed me a blood analysis. Because my LH and FSH were seemingly very low, I got to see an endocrinologist who prescribed testosterone shots. I did that for about a year, with absolutely no change in erection quality, so I stopped. I should say that my erections were mediocre. Most of the time, I couldn't get or maintain an erection at all. At best, I'd get a semi that would go down almost immediately. No erections at night, no morning woods either.

I then started another 10 years of consultations with many different urologists in France, the US, and the UK. Each time I moved (I work in academia) I would try again and see if the local doctors had any miracle solutions. I had all sorts of exams: dopplers with or without intracavernosal injections (countless), cavernosogram/cavernosography (twice indeed), nocturnal penile tumescence tests, Xrays, blood tests, etc. It quickly became apparent that my hormonal rates were normal and not the source of the problem (I'm still not sure why the first blood test showed abnormality there). Instead, I was diagnosed with severe venous leak and I had a ligation surgery at 23. The surgery worked great, but only for a couple of months, before reverting back to what it was preop, which I later learnt is usual for this type of surgery. So I tried pretty much everything else: pills (Cialis, Levitra, Viagra), injections (all possible doses, even two shots at a time), cockrings. Nothing worked. Combining Viagra 100mg with a cockring yielded the best result, meaning I could sometimes maintain an erection that was 'hard' enough for penetration, but even that was very inconsistent and unpredictable, and I personally had terrible experiences with Viagra because it gave me bad headaches the next day. Basically, the only solution I was left with was an implant and the irreversibility of it scared me to death. I couldn't even consider that option. I was especially dreadful because I saw it as the very ultimate option. Each time I tried something new (testosterone shots, caverject, pills, vein ligation), I would get so hopeful that later realizing it didn't work would make me fall so, so low... and I knew I wouldn't be able to face that should the implant -the utimate thing to try- let me down too.

All of that took a huge psychological toll. Sexuality progressively became synonym of failure, insecurity, humiliation, anxiety (a lot!) and all sorts of negative feelings. To the point I would just stop dating for years and years. I also couldn't help but feel like a second-class man. My self-confidence plummeted over the years. I felt like my ED defined me and prevented me from really living my life to the full. Suicidal ideation was always lurking, and any failure or deception in other areas of my life would invariably bring back all the negativity and insecurity associated with my ED, creating a terribly negative spiral. I was ashamed of my condition, even though I knew there was no reason to be ashamed of something I wasn't responsible for. I was so ashamed of it that I couldn't even consider talking about it with a therapist. Yes, it was that bad.

But progressively I opened up to my siblings, and then to a friend/lover, then other close friends. Each time it got easier to talk about it and increasingly liberating. After a few years, I finally gathered the courage to start therapy. More exactly, a close friend of mine coached me into therapy (I can't thank her enough). My therapist has been really fantastic and instrumental in making me realise I couldn't stand my condition anymore and I desperately needed to move forward. It helped me reach the decision to go for an implant. So here I am now, one week after being implanted. The surgery went well and wasn't too painful, except for the permanent semi-erection I had until yesterday (how ironic). I'm not sure how the implant will work for me, and I'm well aware it's far from the end of my journey through ED. I still have a long way to go, especially on the psychological front to restore some kind of self-confidence. But for the first time in so many years, future finally seems brighter and full of promises.
Implanted at 33. Sept 2016. Coloplast Titan. Venous leaks for my entire life.

DP5689
Posts: 81
Joined: Thu Mar 05, 2015 5:56 am

Re: How many are we?

Postby DP5689 » Wed Nov 30, 2016 10:09 pm

I'm 31. ED since I was 29 following two injuries. I strongly suspect venous leak as I had 2 failed Doppler exams with trimix injections (couldn't maintain an erection even with trimix. Doctors won't take me seriously because of my age.
Mid 30's. I have had ED for years after a couple of injuries. Suspected venous leak.

alibaba
Posts: 3027
Joined: Sun Oct 12, 2014 8:04 pm

Re: How many are we?

Postby alibaba » Wed Nov 30, 2016 11:37 pm

Find another doctor.
LGX 21cm .Milam 01/13/16. Horror; both service and surgical outcome. hated infrapubic installation. Kramer revision 03/01/17. 22cm Titan +1.5cm extender. Those who think their opinion is the only one that matters are a danger to themselves and others.

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

Re: How many are we?

Postby hypogonadal » Sat Dec 31, 2016 2:38 am

lapiste wrote:Hi all,

I'm 33yo and I've had ED for my entire life, due to venous leak. I found out something was wrong when I started dating girls in my late adolescence. It took me a couple of years to get the nerve to consult with a doctor about it. Unfortunately my GP was on annual leave when I finally gathered the courage to go and was seen by her sub, who was completely dismissive about it and said it was all in my head. At the time I was 20 and very confused about what was happening. Her attitude made me lose another year before having the courage to consult again, that time with a urologist. The guy didn't take me seriously either but still prescribed me a blood analysis. Because my LH and FSH were seemingly very low


Hey Lapiste, thanks for your great and informative post.

Did you ever actually get your numbers about LH or FSH? Did you check more then just LH or FSH?

Did you actually have a sex drive and felt like having sex or was it absence (in my case, it was absent alongside LH and FSH)

I know it's too late for you now to look back, and hopefully your implant goes well and you never want to, but if you can share your results and let us know more I would appreciate it.

In my case whatever caused my ED problems (nearly lifelong) pertains to hormones. I had venous leak since 15. At times on testosterone therapy it fades away and then comes back, never as bad as it once was but unless I get the right combo, it doesn't always work.

When it does work, it works.







I
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.

moreorless
Posts: 73
Joined: Sun Jan 29, 2017 9:57 pm

Re: How many are we?

Postby moreorless » Mon Jan 30, 2017 7:18 pm

Tyreron wrote:Hmm, I'm 44 years. VL from 16 years old. Did a surgery 1997 and that did it much better. But the last years my ed got worser again. Strong side effects from Viagra and Cialis. Caverject also. Live in Europe. Considering a implant in US. My urologist in Europe don't recommend implant.

One of my threads:
viewtopic.php?t=3440

I' m married, had to kids and a very active life. But my ed is a problem...


Please could you tell me how was the severety of your venous leak? It was localizated ? It was one leak or many leaks?
How many time your leak was fixed?

Rawness1111
Posts: 117
Joined: Fri Aug 09, 2019 11:53 pm

Re: How many are we?

Postby Rawness1111 » Wed Aug 21, 2019 4:27 am

32 and extremely fresh. I started my journey only a couple of months ago. Trying to weigh my options see what works best for me. Did 1injection didnt like it wont be back again but will look around see what's out there and find out what works best for me.
32 yrs old. Newly developed ed with divorce and searching for solutions.

Rawness1111
Posts: 117
Joined: Fri Aug 09, 2019 11:53 pm

Re: How many are we?

Postby Rawness1111 » Sun Aug 25, 2019 10:24 pm

irishguy wrote:hey im 26 had ed since i turned 18, venous leak..
tryed every pill, injection, muse, vacuum.. gel from sex shops
got venous ligation, had a doppler and npt test done...
no other route but implant... if anyone has questions or wants to chat me!!

I have a question? If you have an implant why would you need a cock ring? Is this normal for everyone?
32 yrs old. Newly developed ed with divorce and searching for solutions.


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