Peyronies Society Forums

Erectile Dysfunction Forum - for all men with ED => Penile Implants => Topic started by: Chimp2020 on May 28, 2022, 01:37:56 PM

Title: Between a Rock and a Soft Place...
Post by: Chimp2020 on May 28, 2022, 01:37:56 PM
Hi

I'm 47yrs and have a good fitness level. I've had Erectile Dysfunction all my life, from a teenager onwards.

Erectile Dysfunction Meds
If I take viagra or cialis regularly or semi regularly then it gives me bad back ache & painful haemorrhoids which can take 2-3 months to sort out. The rhoids have only happened once in my life before Erectile Dysfunction meds about 25 years ago.

I've tried Vitaros (alprostadil) at the Urology Dept twice and it didn't work except giving me pain.
Urology dept said the injections wont work as alprostadil is major component of injections and contraindicated with peyronies (I have had it mild but I have definitely have Dupuytren's - one of my fingers is getting near surgery level to straighten it)

Solution for Erectile Dysfunction
So I could get to a concentration of Cialis where it was almost operational but I can't take it because of back ache/ haemorrhoids which when I'm not on Erectile Dysfunction oral meds is not a problem and they shrink back to nothing, so they wouldn't operate.

I cant even use the VED without the Erectile Dysfunction meds. nothing happens.

Implants
So I've been frightened about having implant as its a one way solution and it doesn't seem to work for everyone.
My local urology dept also told me that as I was a 'grower' I was not suitable for an implant as the rods don't extend in length, they just stay the same length.
Hence only works if you are a 'show-er'. They explained the rods would press painfully on my glans. This isn't what I'm reading on this forum though.

However I'm at the point of booking an initial appointment with Dr Ralph in London as the thing doesn't work at all anyway so literally what have I got to lose?

Q - Is it possible to still exercise with the 3rd ball (pump) - I really like to run and cycle. If I couldn't do those activities anymore my mental health would plummet.

Any kind thoughts/advise would be gratefully received.
Title: Re: Between a Rock and a Soft Place...
Post by: Stepone on May 28, 2022, 03:33:39 PM
Hey Chimp, things get confusing and sometimes urologists don’t know nearly as much as a high volume implant surgeon.
First I am sorry you are going through what you are. I had venous leakage In conjunction with Peyronie’s.
I don’t know how long you are, but they don’t measure your penis in a soft stage and give you an implant that matches. I used to be a grower too. I went from about 3” to 8”. We are all different.
But back to the implant, your implant will be sized based on on your erect penis. They will determine that, but it’s always good to say you measured bone pressed and you have x inches.
If you were a grower prior to implant you become a shower. So I did not lose anything from my implant. But now my penis is definitely longer when it is not pumped.
I still can get a semi-erection, just as I did before. My penis head swells just as did before, but when I pump it up, it stays rock hard at maximum length and I actually have increased girth from pre-surgery.
I have cycled with my third ball. It just takes extra care to make sure there is NO pressing or pulling on the third ball. I got a split wider seat with that gives extra room. It’s a learning process for sure, but you need to think it carefully through.
After all, I would rather be more careful biking then screwing up my new penis.
The most important decision you can make is to get a high volume penis implant surgeon!!!!!!!!
Although no surgeon is 100 percent perfect, High volume implant surgeons are pretty darn close. I have never heard of the famous Dr Eid or even my surgeon Dr Lentz causing harm.
Please if you do decide to get an implant, please select a high volume surgeon.
Also be careful who you take advice from. Some people have lots of advice, but do not have implants. I am not trying to say they are trying to cause harm, but no one knows your anguish or your penis than you. Only you have a PHD in your body!
I wish you well and an informed patient is the best.
Hope this helps
StepOne
Title: Re: Between a Rock and a Soft Place...
Post by: Pfract on May 28, 2022, 03:45:36 PM
Hey chimp.

You said you tried Cialis. Was it the daily, or the on demand? The low dosage is very well tolerated with very few if any side effects. Maybe that could be an option? There are also other newer options when it comes to Erectile Dysfunction. Stuff like avanafil for example. Maybe you could try to talk to another doctor about it?


As for the implant, you are misinformed about it but you are in the right place to get to know more about them. They are considered the last option in terms of Erectile Dysfunction treatments but they are very well suited for cases like yours. What your urology department told you is absolute BS. So many stories and cases of patients here on the board that had implants in the exact same situation as yours and they are so happy with them.

Being a grower or shower has no influence on you being a candidate for an implant. As you may have seen already on the board.  Please have a look at these two links:
https://malefertilityandpeyroniesclinic.com/peyronies/treatments/
https://youtube.com/c/JFrancoisEidMD

Amazing resources of information with up to date recommendations. You can lead a normal life with an implant and do all that and more. Don't take my word for it. Please also have a look at the diaries of patients here. This particular case is from a gentleman in the UK that had a very successful outcome.

https://www.peyroniesforum.net/index.php/topic,11929.0.html

Also see
https://www.peyroniesforum.net/index.php/topic,11131.0.html
https://www.peyroniesforum.net/index.php/topic,10557.0.html

Please stay with us. Hopefully you will get the help you need.
Title: Re: Between a Rock and a Soft Place...
Post by: Chimp2020 on May 29, 2022, 09:35:51 AM
Hi

Thanks for the positive advice. I also would like to thank posters like Hawk and P-Diddy who have provided a lot of information and personal experiences. 

@PFract - yes daily Cialis 5mg - I tried splitting 2.5mg in morning and 2.5mg on evening - back ache and rhoids...... And I really tried tolerating both. Believe me.

I have questions that I've tried to glean from the posts but wondered if anyone could help?

Questions
Q1 –  On average, How long before I could go back to working at a stand up desk or sitting down at it? It sounds like I'm going to need 3 weeks off work and I'll be really sore for 3 months - varied with person to person.

Q2 – Coloplast Titan – Everyone seems to have a lot of trouble for several months with the pump being stiff and particularly the one touch valve. Why don’t they make improvements as clearly makes a challenging time just after surgery even more difficult?

Q3 – Coloplast seem to have two products on their website – Titan and Titan touch. Are they the same product?

Q4 – The reservoir in the pelvic cavity. They look pretty big (I’ve seen one at the local Urology Dept) and the coloplast one in particular with the star shaped pieces look like they would be uncomfortable if you did a lot of exercise/quite active. Has there been any problems with these in that respect - pressing on bladder?

P-Diddy - You're clearly a very active guy ;) And you don't seem to have had any trouble - any sensation reservoir is there at all?

BTW - Saddle for cycling a bike. I've had these for over a year for mountain biking and commuter bikes. For ages I didn't want to pay the high price tag (import duties for UK)but trust me these are a total game changer. The only one that has the horn of saddle removed but you dont fall forward onto the bars - fully adjustable for each side. BiSaddle- https://bisaddle.com/

How to look after my penis before surgery?
My circulation to my penis has always been very poor, if I try and get some activity with pycnogenol on its own and/or with VED. You can see half way along the shaft it just cant get blood past it. There is clearly a restriction. The venous leakage must be substantial as anything I have disappears completely within 1-2 seconds.
I am going to continue taking 80mg Pycnogenol morning and night and maybe Arginine too if it doesn’t trigger the rhoids. As it seems very important to try and use the VED to ensure the surgeon has something to work with by the time I get to surgery. For me and the total difficulty of getting blood back the half way point , using the VED is just so soul destroying. I mean 70% it just wont let blood in and I have to give up.

Q – Do men with implants who have trouble getting blood to the glans, still take Erectile Dysfunction meds to try after surgery and get blood and sensation there? Does that work for them? I've seen P-Diddy post but he didnt seem to suffer with this before the surgery

Q – I can’t see any photo’s of here of the dog ear issue, although I have searched. These are issues with the uninflated columns sticking out at an angle when flaccid?

State of Mind
I feel really positive about making the decision to go for surgery, I have hope for the first time in literally for ever.
So now begins the research for a UK surgeon and whether the implant will be a Titan or AMS700.

Clearly managing your expectations are important. Some posters on here have had good experience others have really struggled and have been up and down with pain/disappointment and outcome. Which does make this rather nerve racking but for once in my life I would like to experience my penis actually working. So I'm going to go for it.





Title: Re: Between a Rock and a Soft Place...
Post by: tomas1 on May 29, 2022, 07:21:07 PM
Just my personal preference, but with mild Peyronies, I'd opt for the CX or even the LGX if the doc thinks it would work.
I don't want to get into a food fight about Titan vs AMS.
Title: Re: Between a Rock and a Soft Place...
Post by: Bobinlondon on May 30, 2022, 03:20:21 PM
Hi Chimp,

You may have seen from my journal that I am supposed to be going for implant surgery on the 17th June with Dr Christopher in London.  (I say supposed because it is NHS and I have already been postponed once)

I have been through a lot of things that you mention.  For instance the side effects of viagra like drugs.  And I have concerns about how soon to get back to work.

If you want to have a chat just send me a private message.  Glad to help if I can. 

Kind regards Bob
Title: Re: Between a Rock and a Soft Place...
Post by: JustAGuy2020 on May 30, 2022, 03:52:35 PM
Hey Chimp, I have had a Coloplast Titan for about 8 months and can offer some advice in response to your questions:

Back to work - depends on your Dr and exactly what procedure they use for the implant.  I had incision / grafting as well as implant and my Dr left me about half inflated, but i found that I was able to go back to work after a couple of weeks.  If you have implant placement (only) with infrapubic or penoscrotal approach and your Dr does not leave you continuously inflated, I could see going back even sooner.

Pump stiffness, yes my pump was quite stiff initially but you get the hang of it quickly.  Of note, my Dr ONLY uses Coloplast with his Peyronies patients so having an AMS implant was not an option for me.

Titan vs Touch, I have a regular Titan so cant help with this one.

Reservoir - honestly i dont notice it hardly at all.  IF you use a high volume surgeon they will place the reservoir in such a way that it wont be noticeable and you wont feel it once healed.  I am not particularly athletic but in decent shape, go for long walks, etc and have no issues. I’d be surprised if you could not go back to cycling or other reasonable exercise after your healing process.

I do not have trouble with glans engorgement and I dont need Erectile Dysfunction meds.  I did take Cialis (low dose) prior to my implant but dont anymore.  Of note, if you have good blood flow and engorgement pre-implant, you wil have it afterward as long as your Dr knows what they are doing.  If you did not have good engorgement pre-implant you WONT have it after.

Dog ears, really not an issue for me, when deflated I can feel the “crinkling” of the cylinders but there is no pain or other issue.  My flaccid penis looks normal.

I dont use VED (never have) and my Dr never mentioned it.  I do cycle my implant and am trying to regain size, but overall am happy with my decision.

Good luck