HealingWell
Search Close Search
☰

Erectile dysfunction at 23 - considering the implant.

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/2/2014 6:04 PM (GMT 0)
In August 2010 I used a technique called jelqing attempting to straight a congenitial penile curve. I have been told by urologists, that this was not Peyronie's.

This injured my penis. I was 19 years old back then. The injury caused immediate numbness of the penis. It felt as if I was touching someone else's. No pain or bruising was involved in this. Penis has herefter seemed longed while flaccid and even curved while flaccid, which wasn't the case pre-injury.

Sensation has naturally restored but the other symptoms including severe ed remains. I have visited a few urologists as well as andrologists. I have gotten many different explanations for the diagnosis.
One said it was intracavernous scar tissue and definitely not Peyronie's. Another said it was Peyronie's. A third one suggested penile fracture (despite of the fact that the injury itself was painless and no swelling nor bruising occured. A fourth one suggested, that it might be venous leakage in my left corpora cavernosa. Others suggested it wsas in my head despite from the non occuring night time or mornings erections.

I have tried Cialis 5mg once a day for 14 days. Didn't help. I have tried Levitra 10 mg doses. Didn't help at all. I have tried injections during Doppler ultrasound. I didn't even get an erection with that.

I'm very depressed because of this. I have an apointment with Dr. Eid to doing a phone consultation with him. I think the implant is the final solution for me.

I'm a very social person. I try to be social, but am so frustrated because of this. I have not been with a girl, as I know I'm going to fail sexually.

I don't know what to do anymore. I have no desire to remain alive.


Do you have any ideas as for how I might proceed?

Posted 1/2/2014 7:34 PM (GMT 0)
Most of us on this website with erectile dysfunction trace our problems to treatment (usually surgery) for prostate cancer. In that case it is usually about the cutting of erectile nerves. Some regenerate, while others use pills, or bi or tri mix injections to create an erection. Some have even gone to implants as a solution.

Because you are younger and need specialized advice, I would suggest you also access the website franktalk.org

That website can give you many different opinions and possible solutions.
Posted 1/2/2014 7:56 PM (GMT 0)
Hello Tryfied,

Welcome to the forum. Sorry you need help but glad you found us.

We have a few guys here who have penile implants. Some of them had struggles with infections that cause the device to need to be removed and then replaced, and others had them malfunction (and, again, need to be replaced) but almost all of them are happy with their implants at the end of the process and most say they would do it again. So that option is available.

If you want a penile implant, Dr Eid is an ok doctor to talk with since that's what he does. But, since that's what he does it's likely to be what he will recommend. You didn't say where you were but if you are close to NYC then Dr. Mulhall at Sloan Kettering Memorial medical center is one of the best penis doctors in the world. Since your doctors have all been telling you different things it might be a good idea to see one more as a sort of tie-breaker.

What did the doctor who did the doppler ultrasound tell you? That is often a test that gives good information.

And the doctor who suggested it was all in your head may be on to something but you took it the wrong way. Injections are a very-reliable way of achieving an erection if it is at all possible. But adrenaline is a powerful anti-erection drug and if a man is sufficiently freaked out then even the mighty Alprostadil in the shot may be no match for the adrenaline. I know that when I was twenty-three if you had taken me into a doctors office and stuck a needle in my member and then waited by a machine for it to perk up I would have been a tad nervous.

The suggestion to try franktalk is also a good one. Most of the guys here who have been treated for such things have prostate cancer among the causes. You might find guys with more similar stories over there. But you are welcome here, too, if we can help.

Post Edited (PeterDisAbelard.) : 1/2/2014 2:34:14 PM (GMT-7)

Posted 1/2/2014 8:03 PM (GMT 0)
There have been others of you age that have posted on FrankTalk or even some here. At your age and considering that you are a "social" person as you put it, I can imagine that your first sexual encounter with someone you just met could cause more than a little anxiety. I got my implant as a result of prostate cancer surgery and although I am a lot older, I think an implant would be something you should consider for many reasons among them, an implant will give you 100% reliable ability, and it can be activated discretely without any big production. That would mean a lot to me if I were that young again. There is a lot of BS on FrankTalk site but it is easy to cut through and you can find some young guys to talk to who have already gotten the implant. If you decide to go with an implant, be careful with your choice of surgeon, as it seems that proper sizing very important, too long or too short can render it unusable and worse.
Posted 1/2/2014 9:18 PM (GMT 0)
Hi folks

Thanks for the replies. I'm already on Franktalk. I have got some good advices from the members there. I have talked to some young guys, who had the implant done. Their stories were succesfull, which has only made my decision easier.

I randomly came across this site, as I searched for young guys with implants. I then found a thread in this section with a guy in the same situation like me. The thread (by mike21) was 4 years old. I wanted to know, how he has progressed since then, but I unfurtunatelly find no way to contact him. I hope it is ok, that I post in this section, even though I don't have cancer.


I then figured I would look for other advices here. I'm in Europe, but the surgeons here (at least in my country) don't do surgeries very often. That's why I thought I would go to the states and have it done over there, where surgeons are more experienced.

I will look into this Dr. Mulhall. Maybe he does phone consultations like Eid does?

I'm sure that my problems are indeed worsened, when I'm so stressed about them. As I clearly see a physical change in my member, I don't think the problem is psychological though. 

Posted 1/3/2014 11:06 AM (GMT 0)
Tryfied,

Noticed you visited an andrologist -- have you done a full blood test; Free testosterone included.

I visited an endocrinologist who sent me for Brain MRI to check pituitary glands as they affect your "urge" and erections. Also check your sleep patterns as it too may effect your testosterone and erection profile. Sleep Apnea is also a big factor - do you snore.

Cholesterol could also be a cuplrit. eg. There are two ways that this might happen. Just like one can develop a blockage in the heart arteries, blockages from atherosclerosis can develop in the arteries responsible for erection. This could then diminish blood flow. see www.healthcentral.com/cholesterol/c/59/7939/high-sex-life/

The guys at FrankTalk will also tell you about Aneros and prostate stimulation that will/could help! You can also check out the Aneros website for prostate enabled erections and procedures (the guys there are pretty helpful). Some of the guys at FrankTalk -- some who have had prostatectomy -- stimulate the prostate or the left over prostate nerves bundles through the anal cavity with positive results.

What about body weight, BMI and fitness?

Do not discount the psychological factors. My good mate was on PDE5i and injections with very little positive effect -- yet on a particular day, everything started to work again without any chemical help. His problem was identified as psychosomatic - so give psychology and hypnosis a go ...

Lastly there is still sexual surrogacy see www.psychologytoday.com/blog/talking-about-trauma/201305/sexual-surrogates-help-many-who-suffer-alone

You still have a few options, which you should check with medical professionals

All the best!
Posted 1/3/2014 4:25 PM (GMT 0)
My husband is being treated for ED by Dr. Mulhall, the doctor that Peter DisAbelard mentioned. He is one of the best ED doctors in the world. I know that you are not in the US. Dr. Mulhall has had solutions to all of the problems that my husband has encountered, including peyronies and injections that did not work well initially. His diagnostic ability has been 100% correct in every case.

In case there is a solution for you that is not an implant, I would encourage you to try to consult with Dr. Mulhall. If he cannot help you without seeing you, perhaps he may know of a doctor in Europe that you could go to.
Posted 1/4/2014 12:44 PM (GMT 0)
I have had a full blood test. My testerone levels were just below average, but nothing to be concerned about according to my doctor. I guess the full blood test would reveal, if my cholesterol level is too to high. But I will surely follow up on that.

Actually the last urologist I visited suggested me to getting an MRI. He didn't think they would show much though. I have just pushed him to progress on this too, so that I can see the results of those.

I have no problems with my sleep patterns. No insomnia, sleep apnea or snoring. My BMI is around 23. I used to ride my bisycle a lot. I figured this could make my situation worse. Now I just walk a lot. I have been active with sport, but it's mostly in the summer period.

Prostate stimulation doesn't really seem to be my thing to be honest. Perhaps if it would produce an erection, it might be worth a try. I don't really like the idea of sticking a hand into your butt though.

I have been to a psychologist as well as sexual counselor, but haven't benefited from this. I have had issues with self confidence and esteem previously. With all these physical changes in my penis, I don't see how, I can benefit from this kind of treatment. I experience a little incontinence as well as seing some physical changes in my penis. It's no longer as bendable/flexible as prior to this injury, it's curved and longer while flaccid. Knowing this, I can honestly barely see the benefits of psychological help.

And of course regarding sexual counseling there are more things to sex than coitus, but it is a difficult thing to workaround being 23 and all. And for this reason, I don't date even though I really want to. The fact that I know, I will be failing, holds me back.

I have tried to contact Dr. Mulhall. He takes a 2000 dollars fee just to answer some questions via mail or phone. I don't have an insurance, that pays this kind of phone or email consultation. I wouldn't mind paying 2000 dollars if it was to actually visit him and get a proper diagnosis. All I wanted was to list him a few question to answer prior to me flying all the way to New York. If he is as good as you describe, I might just go ahead and pay for him making the diagnosis. That could be an option.

All in all, I just feel like I'm full of self pity. It ruins the live of my self and those around me. But I have just come short of ideas on how to ever get better. I feel like the implant is the thing, that is going to save me from this misery. I bellieve that if I actually worked, I could proceed with my life, rather than staring into the wall. Whatever difference it makes to have an implant, like the fact that I shall be mechanical and so on. I guess these things can phychologically be dealed with afterwards.

The things that scares me about the implant, is the idea of the device failing for whatever reason. The risk of infection is pretty small, if I choose a good surgeon. But as I read, you never know, when this device is going to fail, in which case I will be needing a replacement. Further risk of infection and loss of sensivity upon replacing it, scares me a lot. After all being 23 I might need up to 5 replacements during my whole life time.

Posted 1/5/2014 5:36 AM (GMT 0)
tryfied, the important thing to keep in mind is that you will find a solution to your problem, so be encouraged rather than discouraged.

Most of us on this forum have had prostate cancer and have ED as a result of this, as has been mentioned. You will find more on franktalk that have ED for other reasons, so that advice is good.

Most of us, due to the age of PCa onset, are much older than you, and as a result, are more likely to have life partners that we have been in long-term relationships with. This makes dealing with the symptoms much easier, I imagine, than those that are single (but I am sure there are many in that boat here as well). We can also get candid answers from our spouse about how things are going, and have a bit of faith that they will stick with us until we get things solved. I had to deal with Peyronie's and ED after a prostatectomy, and after dealing with that for 4 years, and after trying a host of other treatments (pumps, injections, etc), I went with an implant. The thing the implant did for me that might be helpful for you is to eliminate the worry and stress that I would not be able to perform. Sex is no longer an ordeal, wondering whether I'll be able to get it up or not, and whether my wife will be satisfied or not. From that perspective, the implant was a godsend.

I would encourage you to try other avenues first, and be convinced that a long-term solution such as an implant is the right choice. I would expect the implant to last between 10-20 years, and from those who have had to have a second surgery after an initial implant, the general consensus is that the successive surgery is easier than the first. There are low but real risks of infection with the initial surgery, but an experienced doc can reduce this likelihood. Dr. Eid has a very good reputation.

It sounds that you have done some amount of investigation into the causes of your problem, and something like a venous leak is a possibility. As others have said, a lack of erection while taking either pills or injections does not necessarily rule out psychological causes. The treatment you choose needs to be something you are willing to live with, so do your homework and convince yourself of the right cure.

You mentioned that you are depressed as a result of your problem (and I don't blame you for feeling that way). Just be sure to lift yourself up and take a positive attitude - as I said, as long as you decide to, you WILL find a solution you can live with.
All my best,
Jeff
Posted 1/6/2014 2:17 AM (GMT 0)
You know...I have never heard of Dr Mulhall before, but in my opinion any doctor who charges $2000.00 for a telephone consult is a charlatan and a crook. It is like the pharmaceutical companies who charge thousands of dollars per pill to treat cancer.

It is time to change how are medical care is delivered.
Posted 1/6/2014 2:45 AM (GMT 0)
tryfied-

Dr. Mulhall is the best ED doctor in the world (according to my prostate surgeon, who is also world-class). The $2,000 number surprises me a lot. (Who told you that amount??) My insurance company certainly didn't pay anywhere near that much for my office visits with Dr. Mulhall.

I suggest you call Dr. Mulhall's office. Ask to speak with Pam, Dr. Mulhall's secretary. Explain your situation and see if she can help. Minimally, she should be able to get you a correct price for a phone consultation.

-Gedman
Posted 1/7/2014 7:36 PM (GMT 0)
Im_patient > I am in some way couraged. I am looking forward to whatever solution I find for this. For me going with these problems for so long, I have just come doubt whether an implant would even be possible. What if my injury is too big? This is one of the things, I am going to ask Dr. Eid about. I just don't think, that I will be really be couraged before the day, that I have a final solution. I agree with you, that having a positive attitude is the best. Thanks for your input.

I contacted the clinic of Dr. Mulhall by email. Appearantly I can write some questions for the doctor via email for free. The doctor will then answer the questions as good as he can via mail. So I am going to try that.

I'm not sure, why I was told the price was $2000.

I am also going to talk to Dr. Eid soon. I'm looking forward to hearing his opinion on this.

Post Edited (tryfied) : 1/7/2014 12:47:53 PM (GMT-7)

Posted 1/7/2014 7:56 PM (GMT 0)
After a patient sees Dr. Mulhall they interact primarily with his nurses, both in person and over the phone. My husband has seen Dr. Mulhall a few times, but speaks to his nurses all the time. Perhaps you could speak to one of Dr. Mulhall's nurses (without charge) to determine if Dr. Mulhall could help you.

While Dr. Mulhall is the true expert, his nurses are very involved in his patients treatments, and speak to him about all issues.
Posted 1/7/2014 8:29 PM (GMT 0)
I've met Dr. Mulhall (no, he won't remember me, and wasn't aware of my presence here) at a conference. His 10 second comments are what got me to break down and use Trimix. He comes highly recommended by the premier urologists in my area.

A "retail" price for a consult of $2000 does not surprise me. The retail prices are set by many physicians so that, when reduced by insurance company policies, they have enough left to cover the costs.

My RO charged $950 list for a consult. Insurance paid the "agreed price" of $125.
Posted 3/24/2014 8:04 PM (GMT 0)
I just want to let you know, that I have made my decision. I'm getting a penile implant in three months. I feel like this is the only right thing.

I can't wait. This has to be a life saver. But it's difficult to foretell exactly how things will be.
Posted 3/24/2014 9:10 PM (GMT 0)
Congrats on making the decision. That's often one of the hardest parts.

-Gedman
Posted 3/25/2014 3:30 AM (GMT 0)
Congrats on your decision, tryfied
Deciding on one of the many options for PCa treatment usually brings peace along with it, I hope that your decision brings you peace and hope.
Let us know how things go.
Also, if you would like to correspond with me regarding recovery or what to expect regarding the implant, let me know.
Jeff
Posted 3/25/2014 3:46 AM (GMT 0)
Now that you've made the decision, you'll feel much better!

everything of the best!...

.
Posted 5/31/2015 5:57 PM (GMT 0)

tryfied said...
I just want to let you know, that I have made my decision. I'm getting a penile implant in three months. I feel like this is the only right thing.

I can't wait. This has to be a life saver. But it's difficult to foretell exactly how things will be.

Good for you! I can almost guarantee you that you will have an erection, and a quite hard one at that. You can - with your mind/and or a severe enough venous leak, defeat almost any means of getting blood into your penis and and keeping it there long enough for adequate results. But no amount of adrenalin or leak can stop that pump from getting hard and dragging it's shell- aka your penis- along with it. I'm pretty sure it could give a corpse an erection. The only thing I can think of that might interfere would be if there was something about your injury that would make it impossible to insert the prosthesis/pump. Sounds very unlikely, but your surgeon should be able to determine that ahead of time.

Did you say that normal sensation had returned after your injury?

EDIT: OOPS, old thread!

Post Edited (BillyBob@388) : 5/31/2015 12:00:15 PM (GMT-6)

Posted 6/1/2015 11:20 AM (GMT 0)
Apologies Tudpock 18, that won't happen again. I have made that change. Are you perhaps able to delete the earlier post? I hope the following message is okay. Tryfied, if you see this message, I am in almost exactly the same position, eg age and considering that option. My email address is on my profile. If you feel able to, it could be good to communicate. Thanks.

Post Edited (Brody123) : 6/1/2015 5:23:37 AM (GMT-6)

Posted 6/2/2015 2:56 AM (GMT 0)
I have a A.M.S. 650 non-inflatable semi-rigid penile implant malleable been using it for over 22 + years.
the inflatable type are the one that they are having the trouble with , before you make your choice do your
research and try to talk with men who have both types .
✚ New Topic ✚ Reply