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Priapism Survivor

Let me start by saying that I was diagnosed with Chronic Myeloid Leukemia at the age of 17. Eight months later I suffered from a priapism that eventually resulted in impotence. I am now 39 years old and have not had an erection since the surgery that relieved the priapism. I have not seen a doctor for this condition since I was 20. The Urologist that I went to tested pills and a penile injection that failed to work. On the doctors advice I tried an erectile pump but that only caused tissue swelling.  Living with this has caused a strain on my relationship and I am seeking new advice on any recent medical treatments available that may help my situation. I have considered an implant but have heard that there are side effects that include lose of feeling. First, is this true? And second, are there any new non surgical treatments developed in the last 20 years that might soften or repair the Scarring damage.
4 Responses
1128665 tn?1269277071
Hi Da_Mi, welcome to the Urogynecology community.

This is actually a forum fo pelvic  organ prolapse, a woman's health condition so I am going to ask administration to forward your post over to Urology. In the meantime, I don't know if it will help at all but have you checked into exercising the PC muscle, both men and women have them and in men it does have an impact on both erection and ability to sustain the erection. I don't know if that would have any impact for you, particularly since there may be scar tissue issues, but it is painless to do PC  muscle exercises and certainly can't hurt. Doing a search engine for PC muscle exercises for men should get you the info you would need, if you can't find what you are looking for, give me a shout back and I may be able to find some basics for you. One more seed for you (and you may already be doing this), if you and your partner try to focus on manually stimulate each other with more focus on kissing and carressing, (even if it doesn't result in orgasm), it may help nuture you both while you are trying to find answers to help with the core health situation.

Good luck, I hope you find the info you need!
647273 tn?1292094741
Hi, I too suffer from ED at the age of 46 in a few days from now.
It is evident that the treatment for the priapism has done damage to your penis.
I have erectile dysfuncion due to neurological issues. I have tried Viagra Cialis etc.
While I was treated for rehab I was asked by social services if I wanted to discus this with a urologist who specialized in ED.
While in his office for a consultation I was asked if I wanted to try Caver ject. I answered yes. I was then told to put on a hospital gown and he then injected a substance called California Tri-mix. Within 15 min. I started to get an erction. ( had not had one for close to 2 years by than. after 20 minutes it was determined that my erection was suffient enough for penetration.

I was given a prescription for this and was instructed to inject prior to sexual activiy. The Tri-mix worked for me where Viagra and Cialis did not. Over the last 2 years I have not been able to use it due to urological problems meaning that I have an indwelling catheter due to a neurogenic bladder and a prostate to rectum fistula.

A penile implant should be the last resort. Once an implant is place there is no way to reverse the procedure. Also there can be the risk of infection that at worst could mean amputation of the penis

Caverject (California Tri-mix) works by dialating the blood vessels. Alowing blood to enter the penis resulting in an erection. You have to start with a low dose as you do not want the end up with a priapism.

I myself would not opt for a penile implant, I much rather be impotent, than running the risk of loosing my penis. Implants can be a metal rod that can be bent to the desired angle or an inflatable device with a pump placed in the scrotum. This would mean that your scrotum would be opened up as well.

Talk to your doctor (urologist) about Caverject or California Tri-mix. I had allmost accepted a life without being able to have an erection.

I'm hoping that I will be able to use the Tri-mix again as soon as I have had surgery to correct the urological problems.

All the best.

Avatar universal
With all do respect a woman shouldn't give any advice for this situation.  I have a penile implant & any woman I am with loves it.  The first woman I was with after surgery, I had intercorse which lasted for 5 hours & left my partner calling me up for more.
647273 tn?1292094741

I need to apologize as I missed the part that injections have already been tried with no success. I do not know if inreasing the amount might be a difference, however I'm afraid it may not.

With all surgeries ther are risks, being rejection of the implant or infection.

After doing some more thinking about your case, I would suspect that the problem you mave is physical and prevents your penis filling with blood, therefore preventing an erection. If this is the case none of the none surgical methods will work.

Myself being just a few days shy of 47, I would not risk the surgery. My wife and I have been married for 21 years and have not been able to engage in intercourse, due to the fact that I have had a catheter in for he last 3 years. There are surgeries that potentionally could restore sexual activity, however several risks are involved. Right now, I'm in a situattion where making the right decission is very difficult for me. The potential of being worse of than what I amy now, does not sound like a rish that I'm willing to take.

I hope that you will be able to decide and that things will work out well for you.

God bless,

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