HealingWell
Search Close Search
☰

Trimix

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/5/2013 4:22 AM (GMT 0)
My husband had a RRP about 2 1/2 months ago and is a patient of Dr. Mulhall. My husband's surgery was partial nerve sparing - he lost about 20% on one side and about 25% on the other side. Dr. Mulhall had my husband taking Viagra but when that failed to produce an erection he put him on Trimix.

My husband started the injections last week. He did 2 injections at the doctors office - the first where the nurse did it and the second where he did it under the nurse's supervision. He did his first injection at home 2 nights ago at 10 units of Trimix. 10 units produced an erection that was not quite hard enough for penetration. He injected again tonight at 13 units. It was more effective than 10 units but still not enough. One of the problems is that he gets the best results while standing up. He finds that as soon as he lies down he loses his erection. So far this has been for rehabilitation purposes - he is supposed to remain hard enough for penetration (rated as a 6 out of 10) for at least 20 minutes and for an hour and a half if possible, and to do this 2 to 3 times a week.

Are some guys only able to have an erection while standing up, or is it a matter of dosage - that my husband needs to use a higher dose? He is supposed to call in after every injection to report his results and get instructions so I know that Dr. Mulhall's nurse will advise him but I wanted to know what you guys think. I hope that I have not been too explicit in my description. I am not used to discussing this stuff with anyone.

He will be doing the injections partly for rehabilitation and partly to have relations with me. My husband had no ED prior to surgery and is obsessed with getting his erections back (I am obsessed with trying to keep him cancer free).

Post Edited (bluebird123) : 1/6/2013 6:58:02 AM (GMT-7)

Posted 1/5/2013 4:52 AM (GMT 0)
Can't say I've ever had this conversation with a woman, but it was bound to happen.

Yes. Standing up seems to get a better response for me. I am only speculating that it is because Trimix shuts down the exits for the blood flow to a degree, so having Willie at a lower level than the blood supply allows more fill than drain.

I have had one "headed to the ER" experience. In that case, lying down did not help. So there is a line to not cross. But in other trials (so to speak), finding a way to be standing improved things significantly. And after 3 years of nothing, I can deal with standing.

My experience was that .10 was a poor showing for a half hour, while .13 was an ER trip. I've been instructed by my lady friend that .11 is a happy medium, and that ER trips are a mood killer, so no more of those.

Posted 1/5/2013 4:59 AM (GMT 0)
My case is similar to your husband's in that I want to get rid of my ED and my wife just wants me cancer-free (I do too but want more beyond that). But my situation may be a bit different too in that I am still trying to get erections using Trimix. I started with the weaker solution first and had 5 units injected by a PA in my urologist's office. I gradually increased the dosage to 90 units without getting an erection firm enough for penetration. My urologist then switched me to the stronger formulation and so far I'm up to 60 units of it without attaining a firmness capable of penetration. It's gradually getter better but so far I haven't hit the magic dosage yet. By the way, several months of taking 5mg of Levitra daily produced nothing.

I actually have firmer erections using a VED but noticed the same thing as your husband: firmer erections while standing. When I lie down, the firmness starts fading. My wife and I can begin intimate relations but it's much more difficult and awkward than it was before the surgery. After a few minutes, it's impossible because I lack the firmness to continue. Even wearing constrictor rings can't seem to keep me firm enough. So, we haven't found the ideal solution yet.

As you can see from my profile, I'm now 15 months past surgery and beginning to wonder if I'm going to regain enough function to have intimate relations again. Like your husband, I had no ED problems before the surgery and my wife and I had a wonderful love life. I miss that part of our relationship.
Posted 1/5/2013 5:25 AM (GMT 0)
Well, after 4 years of trimix use, I will just say it takes a LONG time to get the right dose locked in. My first dose at home was way too much, as is the case with many users of trimix. It was .20 ml, and I almost went to the ER but it finally died. Then I started dialing it back, and dosage fluctuated from .12-.18 for a couple of years with sometimes too much response and other times not enough. I don't know why the response varies so much with such a small change in dosage. It could be positioning of the needle, aim for for the 10 oclock or 2 oclock  positions on the penis, not the 9 oclock or 3 oclock positions provided with the trimix, they didn't work for me and caused a lot of misses.It could be that the solution weakens with time so the dosage is not the same, or it could be you have some nerve regeneration so that changes the reponse. Anyway, after 4 long years .10 ml is the right amount with the right degree of  stimulation for me. I don't need to take the sudafeds anymore for prolonged erections. Standing or lying down makes no difference now..............good luck to you
Posted 1/5/2013 5:26 AM (GMT 0)
I too have noticed that phenomenon. After I inject, if I stand up so does Mr Unreliable. If I lay down he does too. I'm still trying to fix the problem by carefully tinkering with the dose but am getting a bit discouraged.

Do please share with us what the doctor says about your husband's complaint. There are a number of us who seem to be in the same boat.
Posted 1/5/2013 8:44 AM (GMT 0)
Bluebird -- First off, be patient. It takes time for the nerves to heal and it takes time to find the right dose of Trimix. ED recovery after a prostatectomy usually takes 18 to 24 months and for example, it took me about a month to find the right Trimix dose.

Dr. Mulhall is one of the most respected ED specialists there is, so he is getting the best treatment available. I am also seeing Mulhall for rehab, and I was told the duration guidelines for a penetration hard erection are a minimum of 10 minutes, a maximum of 90 minutes, and the ideal duration is 15-30 minutes. So you might want to check with him again on those numbers.

As for getting better results when standing, this is probably the result of venous leak, where the valve inside the erection chamber is not functioning properly and blood leaks out of the erection chambers, causing the erection to subside. However, when standing, the heart is above the penis which helps the blood flow, replacing it faster than it leaks out. I had this problem to some extent early after my surgery, but it has since gone away. I’m thinking the rehab increased the health of the erection tissue, thus minimizing the leak. I’ve also had this scenario many times, after using the Trimix with success, and thinking it was over, I’d get up out of bed and shazam, the little buddy would start standing up again! Anybody else experience this?

Best of luck with all aspects of his recovery -- Tigerfan
Posted 1/5/2013 3:00 PM (GMT 0)
Tigerfan,

The scenario of thinking it was over, then standing up up have it rise again was a part of my near ER visit. Over and over again -

Posted 1/5/2013 5:11 PM (GMT 0)
Hi, I am a patient of Dr. Mulhall also. He advised me that the average dosage is between 30-35 units. So be patient. At the office, they administered 5 units the first time (3-4 on their scale) and 10 units the second time (4-5 on their scale.)We did my first at home shot yesterday, using 12 units and got the same result. I reported the results and will increase the dosage to 17 units. They did advise me that it may take as many as 12 shots to get the dosage right. So go slow and best of luck.

Fred
Posted 1/5/2013 11:45 PM (GMT 0)
So, what we all seem to be talking about is some sort of vascular problem that makes finding the right Trimix dose problematical. The common symptom seems to be that Trimix works better (we get better erections at a lower dose) if we stand up (so the heart is above the problem area and more blood flow is available) but we tend to lose our erections (or need a larger dose) when we lay down.

There are two kinds of problem we could have: Venous Leaks (as mentioned above) -- a failure of the mechanism that blocks off the veins that drain the penis when we are erect, trapping the blood and helping maintain the erection -- and Arterial Insufficiency -- where there isn't enough blood supply to the penis to erect it in the first place. And, of course you can have both problems at the same time.

For rehabilitation purposes this isn't a big problem. If we've gotta stand up for a while after we inject that's OK. But for romantic purposes remaining vertical at all times is less desirable.

It's not at all clear -- 1) that there is a dose that will work at all for some of us when we lay down. If your venous leak is bad enough no amount of Trimix will do the job, and 2) that there is a dose of Trimix for the rest of us that is enough to work when we lay down but not too much when we stand up.

For my part, I have noticed that my VED takes a lot more pumping when I lay down and is much more likely to pull "scrotal tissue" through the ring. Since the VED doesn't depend on venous occlusion to generate an erection this makes me suspect I may have a blood supply problem, at least in part.

Has anyone else noticed problems with their VED when they lay down (in addition to the Trimix troubles?)
Posted 1/6/2013 3:52 PM (GMT 0)
"I may have a blood supply problem, at least in part."

Yup, reading my surgery report I wondered why I bled so much and beleive it's probably due to ligating the deep dorsal complex, something somewhere was cut.
Trimix and pump work, pills dont.
Posted 1/7/2013 4:02 PM (GMT 0)
Thanks for the responses guys. My husband read this thread and found it helpful.

tigerfan - Thanks for the information on your instructions on the duration guidelines for a penetration hard erection. We spoke to a different nurse today than the one who gave my husband his initial instructions and he said my husband needed to be a level 6 for a minimum of 10 minutes - the same guideline that you were given.

Peter - My husband was instructed to increase the amount of Trimix that he is using from 13 to 18 units. We asked about the problem of standing up/laying down and the nurse thinks that at this point the problem is one of dosage. The average dose that Mulhall's patients are on is 25 to 35 units (where 10 units equals 0.1 milliliters). If at 50 units my husband still loses his erection when he lies down at that point the explanation would be venous leak. My husband did not have any problems prior to surgery and he has started this therapy 2 months out of surgery so the nurse did not think that his problem is venous leak. The other explanation that the nurse gave for this phenomenon is anxiety. If this problem does not get resolved and we learn anything more about the cause or treatment of it I will let you know.
Posted 1/7/2013 8:00 PM (GMT 0)
OK: Don't get discouraged at 2.5 months post surgery.  I expected too much too soon myself.  I was 58 at surgery.  At one year, I lost all hope and figured I had permanent ED.  Even Bimix stopped working altogether.  Prior to that injections worked just fine.  At 17 months it seemed that I just snapped out of my ED condition for no apparent reason.  Now, at 18 months, I find that I don't even have to take Cialis! It is like I am on my honeymoon all over again! Yes, I honestly believe that worrying and then getting depressed had a major influence.  It takes quite a bit of time for things to get relaxed enough and to heal.  And again fixating on the problem only makes things worse. In my case, once I saw some natural response, I stopped worry.  And things "spiraled up" from there.  So tell hubby to  relax.  It may take quite a bit of time. 

Bill from NJ

Posted 1/7/2013 9:02 PM (GMT 0)
Ms Bluebird,

Anxiety can certainly cause Trimix to work less well. The nurse is right about that. I seem to have missed the part where the nurse explained how laying down makes your husband anxious.

Thanks for passing along the information. I hope he finds that magic dose, the one that lets him stand up while laying down, real soon now. I'd ask you to tell him that, except that the idea of a lot of random old guys out in cyber space beaming positive thoughts at him might not be that helpful to him.
Posted 1/8/2013 3:54 AM (GMT 0)
Hi Bluebird!  So nice to hear from you.  You received some great information so far.  It sounds like you two are doing great.  I understand your husband's need for sex at this point.  My husband was the same way.  He wanted to do a diagnostic, take a trial run right away to see where *things* were. 

I mentioned here that strarting out, he didn't get much of a response from his Levitra.  That didn't stop us, and we simply worked with what we had at the time.  Persistance paid off.  For MANY months hubby had to be standing during sex (at least 8 months).  Eventually he started to repond to Levitra and a VED, and still he stood. :) 

We are about 11 months post op, down 1 nerve, and some great reponse without meds, but not quite enough for penetration.  He uses Trimix successfully after some trial and error, and is at a dose that is perfect for him/us.  Now that Trimix is working so well, he doesn't have to stand, and sex is what it was before.  He enjoys Trimix, I mean really enjoys it.

You mentioned your hubby is focused on sex, and you are focused on keeping him healthy.  That is good, but remember to not stress too much about it.  I spent many months worried that hubby would recur and it started to really get to me.  I was able to learn to look at the situation differently, and I'm finally getting some distance between myself and the cancer.  Give yourself a break from the disease when you can.  This will get easier in time.  Stay light about the subject of sex with hubby.  It's different now, but if you two maintain a positive attitude around it, you will work yourself back.  You sound like a great wife.  You two have all of the great tools in place...a great doctor, and medication to aide recovery.  Just remember to be there for each other, and try not to let the temporary sexual circumstance get you down.

I can add my email if you'd like.  You can always email me, OR your hubby can talk to mine if need be.  Take care!

Posted 1/9/2013 1:09 AM (GMT 0)
Thanks for your encouraging reply walkbyfaith. Although I am generally positive I was a bit down and your post really cheered me up. I am so impressed with the upbeat way that you and your husband have managed the side effects of surgery. I will try and follow your lead but it is often easier said than done. I have an email address in my profile and would love to correspond with you.
Posted 1/17/2013 3:46 AM (GMT 0)
I have some more Trimix questions. My husband was told that he needs to get to a level 6 for the injections to have a therapeutic value. The nurse at Mulhall's office keeps on increasing his dosage by a few units every time. His level of response to the injections - about a level 5 - has remained the same each time he increases his dose of Trimix. He is now using 25 units.

My husband gets very discouraged when he injects and does not reach a level 6. He then starts asking me questions and I don't know the answers (how would I know) so I come to this board. If every time he raised the amount of Trimix he had a little better result he would feel encouraged, but from 10 to 25 units the result has been the same.

Are there some men for whom Trimix does not work and if so why would it not work? I know that it is unusual for a female to come on here and ask all these questions about sexual rehabilitation, but your answers to my questions have been really helpful. I have tried to get my husband to participate in this forum but he resists. I know that my husband would like to talk to other guys about the issues that he is dealing with.
Posted 1/17/2013 4:13 AM (GMT 0)
Bluebird,

You have gotten a lot of good recommendations. All I have to add is that your hubby is seeing the best ED doc there is so he is in good hands.

Also, at 2.5 months his nerves are still in shock and he is still in recovery. He'll hit the correct dosage and he is very smart in that he is starting low and working his way up. I overshort my dosage on the first few tries and that is no fun. For me, the dosage needed declined significantly after the first few months.

Good luck ... you are a good wife.
✚ New Topic ✚ Reply