ED after RP

Romneyj

you are very lucky to start feeling signs of life this early. That is blessing.

i had my RP on November 2, 2016, both nerves spared, Ca organ contained. At 10 weeks post op started 10mg Cialis with full dose once a week. So far no signs of life. Ever since surgery, I do not any feeling in my penis and perineum. Recently, started using VED pump but right after I pull my penis out I loose erection in less than a minute. Even, as of now, I did not experience my first orgasam post op. Getting disappointed.

Olready, regretted having surgery, big mistake. My QOL is rapidly going down.

My impression about returning erections after RP is equal to man declared with brain death. Both are artificially kept alive and might come back by miracle only.

Wondering what is going to be next step?

BTW, I am 52, healthy and did not have any ED issues before RP. Never used meds for that.

MK

have no clue as to your relationship status, so i'll tell you my experience with ED, which i've had for close to 7 years or so.

i've been single and have maintained my own apt. for last 28 years. before that, i was married and divorced a few times. now i sometimes live with a woman, other times just date. i enjoy having relationships with women who walk far off the beaten path and have intelligent wide-open minds. the organ that sexually excites a woman the most when you stimulate it is... her mind.

so many ways to bring her to orgasm, without even using a penis, so why focus on having an erection? oh, they're fine but highly overrated. after she's climaxed a few times, most women are more than willing to satisfy you, whether you're hard or not. with enough stimulation of the glans (penile head), climax will happen. post op, you may have to give it some time but it should eventually happen.

so good luck. hope my experience helps.

Sorry rich22,

For my wife and myself, no sex without erection.

We abaide by different moral rules and adhere to different set of moral values so without erection no sex for us. 

Now, almost 15 months post RP, I am still where I was on day 1 post op when it comes to natural spontaneous erections. I can get one with TRIMIX and BIMIX and that is it. VED never worked for me to have usable erection even with using constricting bands.

i am still using Cialis and Viagra but neither one produced usable erection for penetration.

Just to mention, according to my surgeon, he spared both neuro-vascular bundles.

My QoL is on downhill ever since my surgery. I just turned 53 2 weeks ago. Never had any ED before RP and never used any drugs, otherwise healthy, non smoker, non drinker, excercising regularly, not overweight, watching what I eat and how much I eat.

Now, on my last follow up visit with urologist, I was diagnosed with low Testosterone of 217 and low other values related to testosterone. Urologist startedme on CLOMIPHENE 50 mg every other day. Started it 10 days ago. Waiting to see what’s gonna happen. 

I do not expect miracle but hope to see some movement in right direction.

MK

 

my sincerest apologies. of course i respect your set of values, morals, religion and wish you well, friend.

 

here's what i've learned about testosterone:

For adult men, testosterone helps maintain bone density, fat distribution, muscle strength, muscle mass, red blood cell production, sex drive, and sperm production. As men age, testosterone production naturally begins to decrease.i'm not eligible for testosterone supplementation, for a few reasons, one of which was my levels are at the low end of normal but not below. here they are:

TESTOSTERONE, TOTAL  240.1 ng/dL   (normal 193 - 740 ng/dL)

FREE TESTO, CALC         35.0 pg/mL       (35 - 130 pg/mL)

BIOAVAIL TESTO, CALC   83.9 ng/dL      (79 - 335 ng/dL)

my son had low sperm count, not ED and a month after subdermal testo. implants was finally able to impregnate his wife - baby due in March, thank God!

as we say in nyc, ya gotta believe! hang in there.

Love your response Love.

I too have been indulging in daily masturbation and twice, sometimes 3x/day vacuum pumps. 5mg/day cialis and 50 mg /day viagra (generic) and have nightly erections. I have found strangely that I am less aroused in general unless I have blatant provocation and that erections of sufficient hardness to penetrate do not last more than 10 minutes. I'd be facinated to know where you get your Pentoxyfiline from (would prefer Propentofylline as it showes even better effects). PM me if you want to send details.

I suspect it is a slow process (I am now 3.5 Months since my op) but suspect too that blood flow is critical to angiogenesis which is critical to replacing the lost vascular supply. Whether the nerves form one side can sort the whole organ I don't know. All I know is that I am a long way from where I was in terms of harness and too far by miles from how long I used to be able to sustain it!!

Hi Romneyj,

I can definitely relate to the feeling less aroused. I think it's because most of the time I'm forcing things and never really get to "freshen up".

Previously I'd get an idea or see something I like and get a sensation or movement down there, that would then spur on further thoughts and so the process goes. I find as I'm now getting sensation down there again just with thought that the arousal is improving. There's also the fantasy being a little destroyed by not being able to show off your approval as you'd like to the recipient. I'm hopeful that will all come back as it seems to be the case as things are improving.

Regarding the meds, I used a Dr friend to give me scripts that I could either get from a chemist or a compounder. Pentoxyfiline here is called Trental.

You sound like you're doing better than I was at the same stage and I'm sure you'll do really well.

Something I found interesting with injections. I started bimix and never got anywhere near the type of erections I'd read other people were getting. It never failed me but I worked up to 70-80 units to try and get it like the old days but still if I payed on my back the erection would disappear, then a couple of months ago I thought I'd try trimix. I started at 20 units and it was definitely better, each subsequent injection I lowered the dose and now 5 units of trimix or 10 units of bimix is more than enough and the erections on my back from injections or spontaneous are probably the best I have now. Not sure if the prostaglandin helped things along or once again it was time taking care of things.

Regarding the hardness, I'm sure nowhere near where I was but it is definitely still improving. I read an interesting study on unilateral nerve sparring compared to bilateral and there was no difference reported in firmness and only a 1.1-1.4 difference in chance of recovery. They summize that there is a crossover effect similar to when I hecting only 1 cavernous space.

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Hi Love,

That's a really helpful post. Many thanks. Yes I was aware of Trental - it has adoenisine uptake blocking activity which makes it an interesting drug. I'm in Taiwan for a month (work) and they have an injectable here which I may try - I'll have to find out exactly what it is. Like you, I have no problem injecting myself.

Hay Rick, I'm in the same boat. Keep in touch to compare progress!!

Hi Rick,

Look for a YouTube clip by Dr Mulhall. He advises taking the pde5 inhibitors daily whether they work initially or not, and if not advises injecting 3 times a week until the nerves 'wake up'. He also explains why

Hay Love, I got the same amount of time as you do. I have been trying Just about everything. Now, me and my Dr are talking about the Implant. Have youThought about penile Implant??

Well, having exchanged with you a couple of months ago, I bought some Caverject and found that 20mg of Cialis + 0.25mL (ie 5µg) of Caverject worked amazingly  - back to what I was before, v hard and lasted for over 2 hrs.

I am exactly 6 months post op and using the VED every day + cialis 5mg/day + ginger (CO2 extract from 14.4g of ginger each day) in order to maintian testosterone levels (a number of good trial results).

I shall buy more Caverject when I go back to Taiwan shortly, but in the mean time an additonal 20mg of cialis 3 or more hours prior to the deed + 100 mgs of sildenafil about 1 hour prior to the deed does the trick nicely. Firm, but not as hard as before (or as on Caverject).

Note that Caverject does not give a comfirtable erection and I don't get to have an orgasm on it - I gather the discomfort is normal with damaged nerves accoring to Dr Mulhall's video.

Do you compoud the bimix and trimix yourself? Or how do you get the trimix? (I gather that the erections are more comfortable than with straight caverject.

Again many thnaks for your earlier post it was most useful!

Romney

Wow, you seem to be taking a lot of meds and other stuff. Are you being guided by a physician? Ideally a general practitioner that specialises in men's health issues.

You must bring your condition to the attention of such a physician and he will best guide you. For instance, if you're talking 20mg of cialis a day and have no response then you must query taking it daily. On the other hand if you are getting a response, but you're not happy with the response eg erections are not what you'd like them to be, then you should find out of that is the best you can expect or if there is someone else you should do.

 

Hi Andrew,

It's still pretty early days and some recover later than others. Don't give up just yet. I can't say I would consider an implant at this point. I would be considered potent but I still feel there's a way to go to get near baseline before surgery.

So in Australia I use a compounder for bimix and trimix. I think you would be fine with bimix. I only use it occasionally now if I want a big night and 10units is good for 2 hours.

You sound well on track for a full recovery.

Hi Barney,

Yes I do take lots of things. I've done a lot of reading and research, it's been an obsession of mine. I take the Cialis daily as I believe it's keeping the endothelial cells healthy and giving good nocturnal erections. I've experimented with 5mg, 10mg and now 20mg daily.

The way I see it, there's a window of opportunity to help things along. As I've said previously, I wouldn't necessarily advise doing the things I've done but to the original post, there are plenty of things worth trying. I've tried pretty much all of them as I don't want to get down the road and have regrets.

These days I function pretty well and if I had to accept my current recovery as final I'd be ok with it, but I plan on doing anything I can to help with nerve regeneration and keeping tissue healthy for at least another 12 months.

My urologist did a great job, but he definitely dropped the ball in regards to rehab. Then again I did tell him I'd work on it like an Olympic athlete anyway. Many physicians will not condone anything without conclusive proof. Many of the things I take are considered safe supplements and there is limited evidence for most of them in regeneration of injured peripheral nerves.

love77844,

It is 9 months since my RP and I do not have anything to report. My ED recovery did not start yet. ABSOLUTE ZERO with no feelings, ED drugs don't work, no success with VED. Started TRIMIX at the end of April. TRIMIX gives me erections but my erect penis looks like pre pubescent one. Length and girth gone. I lost 2+ inches and I am ashamed with what is 

left from my penis. In flaccid state, I just have second navel down there where penis used to hang. Terrible feeling. Loosing patience and hope.

i am wondering if anyone one there with something similar?

MK

Hi Mk,

I did become concerned about loss of girth and length, but I think the injections only work on the cavernosum, which is one of 3 chambers and so maybe they don't truly reflect how size would be if the glans was swollen as well. I still use a pump 4-5 times a week for rehab and to stretch the tissue. Hang in there, use the pump and keep the blood going with pde5's and injections. I did see a study that showed at 5 year follow up most men had regained size that was still missing at 2 years even.

Ok, you're in Aus. I believe comounders here in UK won't work with injectables. I may need to solve that myself for those big nights. Thanks again.

Hi Barney, I agree with Love's response to you. Endothelial protection is what it is about along with general oxidation in order to counter cavernocal fibrosis and smooth muscle apoptosis which lead to venous leakage = inability to maintain erections and shrinkage of the penis. Actually regular (3 x per week) dosing with prostaglandin E1 (Caverject) also has a strongly anti-fibrotic effect.

No doctor would know much (if anything) about the herbals etc that Love is taking for ED, vascular health, antioxidant properties and endothelial health. The one thing we do know is that most nerves will self repair over two to three years at most. The pressing need is for us to maintain penis health while that happens by maintaining the best nocturnal erections we can (cialis 20mg will certainly improve on anything produced by 5mg) and maintaining endothelial health. Start as early as you can and never give up. Every day is important.

Romney

You are so right when you say most physicians will not condone anything without conclusive proof. That's just not good enough. I would be open to anything that could work even if there is no clinical studies to support it assuming doing so would not endanger my health. So my views are aligned with yours on this matter it seems.

Barney,

Have a look into the stuff I'm taking. For most of it there has been trials of some sort, either pilot studies or studies done on rats with nerve crush injuries. Like you, I believe if there's anything to suggest it may be beneficial and there's no harm, why not?

Love,

I notice that you don't include cannabinoids in your cocktail. There has been a lot of work done on nerve crush injuries in rats with v good resuls. The work on brain-derived nerve growth factor (BDNF), growth-differentiation factor 5 (GDF-5), neurturin (NTN) and Sonic Hedgehog (!) has been impressive and made me realise how important neuroprotection, neural repair and neurogenesis is to the recovery of EF. I have also been using a mixture of cannabinoids deep into the urethra every night. PM me if you want details.

Romney

Can't say I've considered canabinoids. Some things I've looked at I've considered too difficult and a lot of those things you mention would really need to be applied by the surgeon at the time of surgery. There is one surgeon I know of in the US that puts an amniotic membrane on the nerves after surgery. Then there's things that show promise, but I'd consider a last resort, such as stem cells, erythropoietin, hgh etc since they may enhance tumor growth.

How's everybody doing? Hopefully the lack of activity is an indicator that there's a much lower level of anxiety about things. 

I can honestly say I've been one of the lucky ones and feel truly blessed.

Finally had the courage to look at my post op pathology, 99% high grade Gleason 9 (5+4). I suspected so as my urologist would raise his eyebrows every time he looked at it. 

I sincerely hope everyone else here that went through this around the same time has had a satisfactory recovery