Post RALF penile rehabilitation Injections - pain

Sticking a needle Where? Courage, guidance and help.

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HarryN
Posts: 2
Joined: Sat Nov 10, 2018 8:02 pm
Location: South Island, New Zealand

Post RALF penile rehabilitation Injections - pain

Postby HarryN » Sun Nov 11, 2018 7:03 pm

Hi
I am new here and have come across from the Healing Well forum.

I was diagnosed with prostate cancer earlier this year and had robotic surgery on 7th June.

My surgeon doesn't believe penile rehabilitation is necessary which has been very stressful to me as I have read widely that to give yourself the best chance of getting erections again you need to preserve the structure of the penis by getting oxygenated blood into the penis with erections from either viagra type pills or if that does not work injections.

At my 6 week appointment, I got the surgeon to prescribe Viagra but he prescribed it at a much lower rate than John Mulhall suggests, so I went to my GP who increased it to half a tablet daily and a full one to try to get an erection once a week. Unfortunately, I still was not able to get any erections, so John Mulhall's advice is to go to injections at 6 weeks.

Its now 5 months since the surgery and I have just started on alprostadil injections at 12ug ( 30 units on the syringe) after visiting an ED clinic. It certainly works but I am getting a good deal of pain while the erection is there. From reading on this forum I see that most patients seem to be treated with Trimix of various proportions, rather than the single chemical that I am getting which is identical to the cavrject chemical. I gather that the Trimix is lower doses of 3 chemicals

Does anyone know if this combo would lead to less pain? A couple of other thought I have had are if I should try the alprostadil at a lower dose to see if the pain would be less. Also might the pain be coming from fibrosis setting in and tissue is just stretching again as I have not had erections for 5 months? If I continue as I am is the pain likely to lessen with each treatment?

I was trained to use a 29 gauge needle 12.5mm long and push all the way in at 10 o'clock or 2 o'clock positions. I see most people on this forum are using a 31 gauge, 8mm long needle.

Any help would be greatly appreciated as I certainly am not getting much from the urologist.
Age 60
RALF surgery 7.6.18
Margins clear - No extra treatment required at this stage
PSA'S now <0.1

Reggieman
Posts: 135
Joined: Sat Jun 04, 2016 7:17 pm
Location: Central California

Re: Post RALF penile rehabilitation Injections - pain

Postby Reggieman » Sun Nov 11, 2018 7:48 pm

Have you tried Bimix. It works for me and there is no pain like Trimix.
Retired. R.P. June 2016 at UCSF. Bilateral nerve sparing robotic surgery. Use .15cc of Bimix twice weekly. Still have some incontinence and not improving. Other side effects: anorgasmia & decreased penis sensitivity.

bldoink
Posts: 918
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: Post RALF penile rehabilitation Injections - pain

Postby bldoink » Sun Nov 11, 2018 11:14 pm

I'm not a medical professional of any kind. Anything I post is based on my own personal experiences at best and delusions or hallucinations at worst. Always ask your doctor and follow his/her advice or instructions.

Yes tri-mix is generally a lower dose of alprostadil which is supplemented and magnified by two other chemicals.

Yes, tri-mix can be less painful for those who are particularly susceptible to alprostadil pain.

Yes, I would definitely try reducing the alprostadil dose. You want just enough to give you the desired erection and no more. You will need to experiment to find the correct dose for you. Excessive alprostadil can cause pain in guys that aren't otherwise unusually susceptible to alprostadil caused pain. While there is a fair percentage of guys unusually susceptible to alprostadil caused pain THE MAJORITY ARE NOT.

I seriously doubt the pain you're experiencing is fibrosis. The alprostadil pain issue is fairly common. Most guys experience some alprostadil pain at some point.

Yes, alprostadil pain can diminish or disappear as you continue treatments. That was the case with me. Part of it was finding the correct dose and part was ,I guess, my body getting used to the drug.

As for needle length I think the 12.5mm is probably more common. I strongly prefer the 8mm. I also strongly prefer the 31 gauge but again I think the larger gauge is more common. You'll have to experiment and find what works best for you. With the 8mm needle I push it all of the way in, and then some more.

Good luck and I'll try and share my experience as best as I can. There are some links in the Documents worth reading sticky in the General Discussion sub-forum that my be worth looking at. Don't get discouraged too quickly. I'm pretty happy with the results I get as are many others.
R.R.P 2011 Mayo Jacksonville by Dr. Michael Wehle. Nerve sparing but damaged. V.E.D, Viagra and Alprostadil manually injected. Originally Edex20. Switched to Alprostadil from compounding pharmacy - cost. Injecting 5-6 yrs. It works. Treasure coast of FL.

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Larry10625
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Joined: Sat Apr 15, 2017 10:56 am
Location: Ontario, CANADA

Re: Post RALF penile rehabilitation Injections - pain

Postby Larry10625 » Mon Nov 12, 2018 5:52 am

HarryN wrote:Hi
I am new here and have come across from the Healing Well forum.

I was diagnosed with prostate cancer earlier this year and had robotic surgery on 7th June.

My surgeon doesn't believe penile rehabilitation is necessary which has been very stressful to me as I have read widely that to give yourself the best chance of getting erections again you need to preserve the structure of the penis by getting oxygenated blood into the penis with erections from either viagra type pills or if that does not work injections.

At my 6 week appointment, I got the surgeon to prescribe Viagra but he prescribed it at a much lower rate than John Mulhall suggests, so I went to my GP who increased it to half a tablet daily and a full one to try to get an erection once a week. Unfortunately, I still was not able to get any erections, so John Mulhall's advice is to go to injections at 6 weeks.

Its now 5 months since the surgery and I have just started on alprostadil injections at 12ug ( 30 units on the syringe) after visiting an ED clinic. It certainly works but I am getting a good deal of pain while the erection is there. From reading on this forum I see that most patients seem to be treated with Trimix of various proportions, rather than the single chemical that I am getting which is identical to the cavrject chemical. I gather that the Trimix is lower doses of 3 chemicals

Does anyone know if this combo would lead to less pain? A couple of other thought I have had are if I should try the alprostadil at a lower dose to see if the pain would be less. Also might the pain be coming from fibrosis setting in and tissue is just stretching again as I have not had erections for 5 months? If I continue as I am is the pain likely to lessen with each treatment?

I was trained to use a 29 gauge needle 12.5mm long and push all the way in at 10 o'clock or 2 o'clock positions. I see most people on this forum are using a 31 gauge, 8mm long needle.

Any help would be greatly appreciated as I certainly am not getting much from the urologist.



You could also try the VED 5 minutes at a time, 3 to 5 times a day. :)

Larry
51 years old, married 29 years. Implanted Mar 30/17 by Dr. Brock of London, Ont, CANADA. (AMS 700 CX 18 + 2). Had implant removed Apr 29/17 due to Septic Shock. Liposuction By Dr. Gan and re-implant by Dr. Brock (AMS LGX 15 + 2) Dec 14/17.

bldoink
Posts: 918
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: Post RALF penile rehabilitation Injections - pain

Postby bldoink » Mon Nov 12, 2018 9:55 am

I'm not a medical professional of any kind. Anything I post is based on my own personal experiences at best and delusions or hallucinations at worst. Always ask your doctor and follow his/her advice or instructions.
-------------------------------------------------------------------------------------------

Yeah, some therapy with a VED/penis pump is probably a very good idea and the sooner the better.
R.R.P 2011 Mayo Jacksonville by Dr. Michael Wehle. Nerve sparing but damaged. V.E.D, Viagra and Alprostadil manually injected. Originally Edex20. Switched to Alprostadil from compounding pharmacy - cost. Injecting 5-6 yrs. It works. Treasure coast of FL.

HarryN
Posts: 2
Joined: Sat Nov 10, 2018 8:02 pm
Location: South Island, New Zealand

Re: Post RALF penile rehabilitation Injections - pain

Postby HarryN » Mon Nov 12, 2018 1:38 pm

Thanks for the advice.
I should have said I have been using a VED from soon after the catheter came out. It was something I could organise myself with out medical input.
Age 60
RALF surgery 7.6.18
Margins clear - No extra treatment required at this stage
PSA'S now <0.1


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