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Men's Experiences
Patient 1
I am 62 and was 60 at the time of my cancer treatment (seeds). I first tried Viagra but erections were not always firm and were easily lost. I now alternate between injections and Viagra and have sex about 10-15 times per month.
About 15 months after treatment and struggling with Viagra, I went to an ED specialist for injection therapy. My doctor started me on bi-mix, a mixture of 30 mg papaverine and 1 mg phentolamine. In the office, he injected a dose of 0.2 ml, but the erection was too strong and he had to give me two shots of an antidote to bring it down. I went back the following week to demonstrate that I could inject myself. This time the dose was 0.1 ml and this was not enough for an erection. He then gave me a prescription for 10 ml and told me to increase the dose in small increments until I found the right mix. The right dose for me is 0.12 ml and I get an erection of about 45 minutes to two hours with that mix. Occasionally, the erections persist and I have to take Sudafed and/or do some stair climbing to lose the erection. My doctor was adamant in not taking a dose that would cause an erection that would last for more than two hours. I am allowed to inject everyday as long as I wait 24 hours between injections.
I find injections to be much better than Viagra, although the feel is not quite as natural. About 10-20% of the time, I fail to get an erection with injections and have to take a dose of Viagra to supplement. I use 0.3 ml diabetic syringes with either a ?? or ?? needle. There is no pain to speak of either with the needle or the erection. I understand auto injectors are available, but I have never felt the need. The injection itself takes about 5 minutes, about 1 minute to clean with an alcohol swab and inject and another 3-4 minutes of holding pressure on the injection site after removing the needle. I usually have a full erection within 5-15 minutes of injecting.
As I recall, my doctor said that bi-mix is effective about 80% of the time. He added that about 50% of the users show an improvement in potency after using injections and find that they do not have to always inject. About 5% of users are able to get off of the injections entirely. In my case, after about 6 weeks of injecting, I found that I am now able to use Viagra successfully. I generally inject about twice per month and use Viagra the rest of the time.
If bi-mix is not successful, my doctor prescribes tri-mix with the third ingredient being prostaglandin (Caverject). Prostaglandin causes pain, sometimes severe, in about 20% of the users. The cost of a bi-mix injection (at my dose rate of 0.12 ml) is about $1 plus 25 cents for the syringe. My insurance pays 80% of this cost. Caverject, I understand, is quite a bit more expensive.
Editor???s Note: The decrease in the requirement for injections depends on the condition of the nerves. If the nerves have been removed or severely damaged in a prostatectomy, for instance, an erection will never start occurring naturally.
(another patient responds to the above message)
This is an usual frequency that you are permitted. Most uros hold to the old dictum that 3x a week or 10 x a month is the max for injectibles. However, a friend of mine - a veteran of injecting for many years - began ignoring these rules long ago, with no negative effects. He keeps his regular appointments to check for scar tissue and has none.
Patient 2
I am an eight-year survivor. I had a radical prostatectomy with bilateral nerve sparing at age 55. However, I am as impotent as I can be. I was also very, very angry. I tried everything, vacuum devices, Caverject and tri-mix injections, Viagra, the pellet, and nothing seemed to work. I had Doppler studies done to determine if I had a venous leak, but it seemed normal.
In my Houston support group, one member urged me to try the tri-mix again. It has not failed ever since, not even once! It seems to me that I was terrified of Self-injecting, and that had a mental impact on me. I then discovered an autoinjector, and all the fear and apprehension of injections went away. With the autoinjector, I don???t even feel the needle go in. As an added bonus, I am now able to inject on both sides of my penis, in order to minimize scarring, which I was not able to do before.
I would strongly emphasize to your support group the use of an autoinjector.
Patient 3
Prostate-ease and related supplements off again, on again over past 5 or more years, with questionable results. Viagra gave limited results briefly then seemed to stop working altogether.. There appears to be a Quality Control problem in supply of Tri-Mix, however, this batch is up to standard.
Have been using Tri-Mix for two years now. Don???t really mind the needles. It really does what it was developed for. I recommend it highly. Occasionally I miss or possibly hit something other than the corpora cavernosum and it does not work. This last batch may have been weak or something, as had to use triple amount to effect the same response
Patient 4
By the time I was 8 months post op, (at 50 years old) I had already been through Viagra, Muse, the pump and all combinations. I thought I was doomed until I tried Caverject. While no one in their right mind would look forward to inserting a needle into their penis, it is rather painless and is something you can do in the bathroom alone before you retire to the bedroom. It needs not be an integral part of the night, as opposed to using the pump at bedside - what a turn off. An erection of several hours is not uncommon, and you must carefully regulate the dosage (it???s not difficult) in order for your erection not to exceed 2 hours. After a number of very satisfying events, I am now 18 months post op and able to get an erection w/o the aid of any of the above. Use it or lose it! Good Luck!
Patient 5
I had my RRP 4 years ago. The first year I tried all the options - without any guidance or direction from my surgeon. I used the pump, tried MUSE &, when Viagra hit the market, tried it. After close to a year the subject of injecting surfaced. I started with a Tri-mix combo & Caverject - both caused me severe pain (the common aching side effect associated with the use of Prostaglandin E). At that point I learned of other injecting options, found PCAI & got an Rx for a Bi-mix combo of Regitine & Papaverine. It worked like a champ. I also started using straight Papaverine (because it doesn???t require refrigeration & could be used when I???m traveling). Both options do the job. After 2 years I realized that this was a more than acceptable way of retaining the ability to have erections. The only regret I have is not starting with injections immediately because the only change/impact on my current situation is that my penis is somewhat smaller - probably the result of not getting back into the routine within a few months.
My wife & I now have a ???normal??? love life & I actually am a little thankful - e.g., I never have to worry about losing an erection! When I use the bi-mix my erection stays around for 2 hours & with straight Papaverine I can control the duration with the dosage from 30 minutes to an hour. Injecting, as such, is NOT a problem for me &, after 2+ years of a couple of injections a week, I see no evidence of damage to tissue. Lesson Learned - all urologists/surgeon need to understand the impotence side of an RRP & start those that want an active sex life, on injections within the first 6 to 8 weeks. EVERYONE should start with straight papaverine - minimal side effects, minimal erection duration & cheapest option. If that doesn???t work then move to a bi-mix. Patients should not use tri-mix or Caverject (Prostaglandin E products) initially because if they get the aching side effect it tends to immediately discourages you on injections - in general. Stay with the simplest & minimal hit option & move up if you need more.
For me, Regitine does not apparently cause any side effects. When you???re using the bi-mix you???re usually injecting less than a third of the liquid (I use 0.17 cc of Pap & only 0.06 of bi-mix), so it???s possible that less is better???? I honestly do NOT notice any difference in my erection when using either. The only difference is (1) the length of time I???m erect (significantly shorter when using just Pap) and (2) it takes a few minutes less to become erect when using Pap. My ???routine??? is mostly based upon being convenient. If we decide quickly it???s time to make love, I grab the Pap out of the bathroom draw & inject. If we???re thinking about it earlier in the evening or there???s a conscious decision that the event should last for an hour or so that the obvious option is to head for the Frig & grab the bi-mix.
Patient 6
My first experience with the needle, in the doctor???s office was pure joy! The excitement of getting an erection clearly outweighed the slight discomfiture of the pinprick. Incidentally, this was before Viagra. Subsequently, I tried Viagra experiencing mild success with hot flashes being the only and easily survivable side effects. I use the needle almost exclusively. Do I have a problem? You???re damned right! Why? After almost four years? The pure psychological effect of poking a needle anywhere in my body, let alone that poor, innocent, defenseless penis. Yes, to this day, I fear the needle. I work on the reward theory. I know that the reward to my wife and, thus, to me is worth the puncture. I also suffer from a mild loss of desire, which doesn't help. Further, orgasms are difficult. Thus, we go through this routine of psyching up, remembering the joy of a very happy wife, and puncture the little sucker and make him big and bold, just like she likes.
Patient 7
As to my experience with ???injecting??? Caverject. Age 65, RP 4/99, doing fine. I???ve used Caverject injections for the last 2 years and they work well for me, giving me a good erection of from 1 -3+ hours depending on how much I inject (I???m currently using between .2 and .3 cc) and my mood etc. I use the B-D ULTRA-FINE 1cc 29 gauge ????? needles, as well as the B-D ULTRA-FINE II 1/2cc 30 gauge SHORT 5/16 needles. It does not seem to make any difference as I???m injecting .2 to .3cc. I would say that my success rate is about 90 per cent, and I get a nice hard erection. I did try an automatic injector, but I???ve found it???s easier for me to inject without it.
Patient 8
I underwent an RP in December of 1998-a month short of my 59th birthday. I started trying to get erections about three months later and my urologist started my on Viagra that did not do the job; then he put me on Muse with similar non-results. So it was time to try injections. He first injected me with 10 mcg of Caverject. It did something but not nearly enough. I tried the full 20 mcg dose while my wife was waiting. The results were disastrous. It hardly worked at all, so I waited another three months and tried 40 mcg of Edex in combination with Viagra. It worked very well but I had aching pain afterwards. So I gradually stepped down the dosage until I was down to 2.5 mcg. That worked well under the best of conditions, but five mcg was more dependable and 10 mcg was totally dependable without pain. I kept this up for about 15 months when I discovered that Viagra would work well without injections. This was about at my two year anniversary of surgery. Since then I have not injected. When I did inject, I preferred to use the size 30 diabetic needles that you can buy in packages of 10. They were smaller and easier to handle. When learning to inject, it seems to be important to have a successful injection when you are not expecting intercourse so that you can take your time and become comfortable with the process. It does not hurt to inject yourself-it just stings a little. I think the injections started me on the road to recovery of my sexual function, and I encourage everyone for whom other methods have failed to give them a try. Don???t just sit there and wait for erections to occur, you have to help then along or they may never come. The injections worked for me and I???m glad I tried them.
Patient 9
Diagnosed in October 1998 at age 49. Had RRP in December 1998. PSA at time of diagnosis 4.7 Gleason score = 7.
I have used tri mix injections for almost three years and I suppose I would have to classify my experience semi-bad or semi-good. Depending on how you perceive things i.e. is the glass half full or half empty. Anyway for the first ten months or so the injections worked wonderfully. Then about 10 months post op I began developing Peyronie???s or scar tissue. Still not sure it was caused by the injections. Following treatment for the Peyronie???s, the curvature has subsided significantly and the pain has gone entirely. I continue to use the tri mix injections. My erections while sufficient for intercourse are not as rigid or as full when compared to immediate post op much less pre op. However I am thankful that they still work.
Patient 10
I???m 52 years old and had a nerve sparing prostatectomy in July 01. At present, 8 months post-op, I???m still having no natural erections and no useful response to Viagra. I???ve been using the injections for about 5 months (about 25 injections) with mixed results. Here???s a short chronology: After about 3 months after my operation, with no return of natural erections (it was still early), I made an appointment to learn about injections. I was told that the injections may help bring my natural erection back faster but was not a cure. I was then given a scary waver to sign followed by an injection so that they could do an ultrasound study to test my circulation. The injection didn???t produce much of an erection and if they learned anything from the ultrasound they didn???t share it. The shot hurt a little going in then burned like crazy. They seemed surprised by the amount of pain and attributed perhaps to the alcohol prep (which I didn???t believe).
I was sent home with an instruction sheet and a prescription for bi-mix. I tried escalating doses of the bi-mix (up to .6ml) but it didn???t do very much. It certainly didn???t produce a useful erections. Doing the injections myself, I never experienced the burning pain of the first injection but then I wasn???t sure I was doing it exactly right either. After further consultation I was given a prescription for tri-mix and, being wary, I injected only half the recommended dose resulting in an erection that lasted over two hours, going on 3, with no stimulation required. I was nervous because the instruction sheet was very specific about calling an emergency number for any erection that lasted longer than 3 hours warning that a prolonged erection could cause irreversible tissue damage.
Based on the first experience, I injected a smaller dose the next time during a vacation. This time the erection showed no sign of going away after 3 hours and, after calling the emergency number, I headed for the local emergency room. After about 4 hours, just before I was examined, the erection went down on it???s own and I headed home.
After these experiences, I tried much lower doses. Sometimes they worked, sometimes they didn???t. I gradually started increasing the dose and had some successful, and pleasant results. But the dose response didn???t seem very repeatable.
Lately a curvature in my penis has started to develop that also makes intercourse somewhat painful. I was told this happens to about 5% of men that use the injections. The curvature occurs as a result of scar tissue that forms in the penis and I was told if I stopped the injections immediately there was a 50% chance the scar tissue would heal. I was also given a prescription for Colchicine that would help prevent further scaring and perhaps eliminate the scaring that I have (Colchicine isn???t given unless needed because of the risk of side effects). My examination with ultra sound confirmed a ???small??? area of scaring that my physician had felt earlier. I was advised to stop the injections and continue medication for 2 more months (for a total of 3 months). I was also advised to use a combination of VED and Viagra for intercourse in the meantime.
So, the story continues. I???m 8 months post-RP and at this rate, like many of us, I???ll have tried all the ED remedies by the time I???m 12 months post-op. Of the treatments I???ve tried, the injections seem to be the easiest to live with for me so I hope to be able to keep using them.
Patient 11
I was 58 years old when I underwent bilateral nerve sparing RP on June 11, 2001. In August, I tried 100 mg of Viagra and I got a 30-50% erection. Shortly thereafter I went to an ED specialist. He asked me to excite myself so he could evaluate the extent of my erection. He felt my penis and prescribed Bi Mix which is a compound mixture of Phentolamine .5mg/cc and papaverine 30/cc. I understand that this compound does not need to be refrigerated. The insulin syringe is 1cc with 28 ?? needle. I don???t know what it means but I assume there are different size needles. The recommended dosage was .3cc/injection. My first erection lasted almost 4 hours and this concerned me. He told me to drop dosage to .25cc. Out of the 20 times I have injected myself, it did not work on about the 4th attempt so I increased dosage to .28 and have been at that level since. The erections are good and sometimes the penis is cold. There is the swivel effect where the erection is not necessarily connected to the base of the penis. It is not too noticeable and has no effect on the general love making process. My wife feels that my erections are harder than before the operation. I am not sure. The orgasms are good and are generally the same, however there is some difference which is harder to explain. I do plan to use the injection more frequently. Hopefully in the future I will be able to use Viagra to get full erection and eventually nothing at all. The main advice I would give to everyone is start early with treatment and do it frequently.
Patient 12
I had a year of triple hormone blockade, then a non-nerve sparing RP and then (due to a ???micro focus??? of Prostate Cancer) 7 weeks of radiation. Total hormone ablation was 18 months. Tried many doses of Viagra to no effect. Tried the pump and got my first erection in many months. Fairly happy with using the pump, but had trouble maintaining the erection for very long.
Then tried straight prostaglandin. Worked from day one like a charm. Never tried any other of the possible injectibles. Why should I since no pain from (several hour long) erections.
At some point I wondered if Muse would work since it too was prostaglandin. But even the maximum dose Muse barely got me hard.
Back to the injection. I wanted to try an autoinjector because although the pain at the actual time of injection is very short, who needs it? So I got the Becton Dickinson auto injector.
The actual injection was miraculously painless. I loved it! Then it stopped working! I had noticed when injecting manually that if I went in too deep, not deep enough, at the wrong angle or in the wrong place that I had a similar experience of the injection not working. So I assumed that the autoinjector was injecting too far in and gave up using it.
A year later, someone reminded me that the autoinjector came with some spacer rings that would reduce the depth of the injection. So I went and tried the autoinjector again just a few months ago. This time it worked, and continues to work flawlessly.
Thanks to:
Tom F. Lue, MD
Chris Timossi
Jim Watson
James Wilcox
Harry Scheer
Feedback
Please send any corrections or suggestions for this document to Stan Rosenfeld at vegstan2@ix.netcom.com.
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