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#1
Penile Implants / Re: My Implant Journey - 1 Yea...
Last post by oliver776 - Yesterday at 03:24:35 PM
Quote from: royuk on June 04, 2024, 02:22:33 AMHi.

I had an implant a year ago.  I thought I'd share my experience on here with members who may be considering going down this path.  So here goes.

I want to be very clear that I am not advocating for an implant, offering advice, I am not a medical expert or a doctor, this is a description and a reflection of my own individual experience.

I will not be making recommendations about which services to use etc.  in my view everyone needs to do their own research and form their own views on their chosen clinician and treatment plan.

I live in London in the United Kingdom.

Over time I developed severe Peyronies which first started in around 2012.  I had two episodes one around 12 years ago - plaque about 2/3rds down my penis from base to tip - causing loss of girth and length. This calcified over time and felt like a matchstick in the mid part of my penis starting around 2/3rds down the shaft and into the glans.

The second was around 2 and half years ago very close to the base of my penis causing a very noticeable hourglass, with further loss of girth, length, sensation and a significant bend/curve. I had 'natural' but very painful erections; the pain resolved after around 9 months.

Psychologically, especially during the acute stages of both episodes of the disease was extremely difficult, it is only now after having the implant that I see and understand this more than ever.

I believe this is aspect of the disease is neglected by professionals and often left for individuals to deal with alone or with their partners.  Being single I felt very alone and didn't tell anyone about my first or second episode until I decided to have an implant.

Being able to speak to trusted people in my life made a huge difference, having struggled  in silence with this issue I now realise was a huge mistake and affected my mood and mental wellbeing much more than I was willing to accept.

I invested far too much in pumps, hope of new treatments coming, that it may magically just go away.  The reality for me is that it was/is a chronic relapsing disease as it may be for some of you on this platform.

I had so many private consultations with 'experts' who often offered warm words and suggested traction and or pumping regularly.  I do recall one leading expert in the field saying to me "you do know this will only get worse, it will never, ever recover it is a chronic disease and you need to learn to live with it". Although it felt harsh and hit me like a truck at the time it was true in my case.

I can recall seeing at least five different 'experts' over the years, all sympathetic and all saying much the same when taking their fee for the consultation.

I did a huge amount of research by myself, read research papers, watched lots of YouTube videos' etc. One piece of advice is ensure that you go to reliable sources, there are many charlatans out there who are willing to prey on our situation and make unfounded and assurances that are not evidence based.  Choose your advice carefully.

After 12 years of getting worse and my situation deteriorating the message "you do know this will only get worse, it will never, ever recover it is a chronic disease and you need to learn to live with it". Had stayed with me so I decided to take the leap and go for an implant.  I thought I had nothing to lose as the place I was in the prognosis was clear it seemed to me to be an only option that offered hope.

In May 2023 I had a Coloplast Titan implant, the surgery went well and physical recovery was good - although I didn't expect to be so tired for the first 2 or 3 weeks.  But make no mistake this is serious surgery and rest and disciplined rehab is critical to recovery.

Each surgeon will have their preferred approach I had a drain for 2 days, a catheter for 24 hours and IV antibiotics for 48 hours followed by oral antibiotics for ten days.

I had to keep the implant inflated to around 60-80% 24/7 for around 6 weeks.  So get some baggy pants, good supportive jocks and long tee shirts etc.

Six weeks in I started the 'cycling' process - meaning inflating the implant at least twice per day to its maximum. length and girth. 

The rehabilitation of my penis plan was - for the first week - keep. the implant fully inflated for around 10 mins working up to one hour over the next couple of weeks. 

Do not underestimate how important this is and requires real discipline.

This process is important as your body will create a membrane around the implant as it's not a natural part of your body.  It can feel uncomfortable for a while - but not painful.

Cycling will be necessary for at least 6 months, and I have seen reports that you get increased girth and length if you do rehabilitate your penis by reg 'cycling'.

A year on I cycle almost every morning, usually for an hour.  I find that if you move around it helps and that you can inflate a couple of additional pumps after around 40 mins.  You should always try and fully inflate.

I also find it beneficial and to be able to pump slightly more if you pull the penis, bend it, I usually do this as to stretch the area where I had plaque.

Initially I was very nervous of damaging the implant but remember these are made to last and are durable.  When having sex your penis will be exposed to a level of stress and movement so any implant done by an expert should easily be able to deal with a bit of pulling and stretching.  Also masterbate, this has helped me understand my new penis and discover how to get the best sensation etc.

A few minutes before I plan to deflate, I try to pump more, sometimes it does but if the bulb/pump won't pump I don't force it.

I also have used Cialis 5mg every morning which I do believe helps.

Along with pumping/cycling whilst my penis is erect, I try to push blood into my penis, a bit like what I imagine pelvic floor exercises to be but focus on the penis.

After around 6 months of (mostly) twice daily cycling I moved to daily, sometimes more.  On a couple of occasions l didn't pump for a few days and noticed that the effect was my penis didn't appear as large.  But with repeated and regular pumping/cycling it regained length.

The glans has got slightly larger, I lost a lot of size when I first developed Peyronies Disease so this was a benefit, I didn't expect but it did mean that on occasions the glans would have a red area which was slightly sore.  I think this was the head of the implant pushing the glans, one of the reasons you need the correct size implant is to ensure that the implant tube does not break through the skin/head of the glans during rehab and cycling.

At six months I had not regained all my original length and girth my penis is wider and longer than pre-surgery.

The deflation process can be tricky initially - but it is gets easier and I'm doing it much quicker and it's only a few minutes at most to fully deflate once you've had a bit of practice/experience of doing it.

Remember don't be afraid of your implant, it's now a part of your body, it's yours .

I wrote most of the above 6 months ago, it's now a year in and I have continued with the rehab cycling process.  Having researched the disease many experts do recommend this. I can say that it has been difficult to be disciplined to do this.

My second six-month rehab cycle is usually at least 5 times a week, I inflate in the morning for one hour at minimum most days.  I still move my penis, pulling, bending etc.  every 15 minutes of so I pump the bulb in my scrotum slightly and find that more fluid does enter the implant.

I can feel where the plague is and I have had times when I feel it hurting, I'm not sure whether this would have resulted in another episode or old plague being stretched.

The above sounds really difficult, but for me it's far easier than trying to use a vacume pump every day which had no or little lasting effect.

In summary, so far I have no regrets, my penis is a reasonable size now, I lost an inch from my original episode but gained around one inch the first six months and another inch in the second.

The girth is nearly as good as before any disease, the glans is still affected but has increased in size and a 'normal' shape since the implant.

I'm not sure if I'm unusual or just lucky but I do wake with an erection, not a full thrusted one but it is certainly a 'good' semi.  this will resolve often after I have a morning wee - so I know it's not the pump leaking which I did think initially as I was told  natural erections will not happen after an implant.  in my mind - although it may not be true I connect this with taking the Cialis 5mg every morning.

Sensation isn't as strong as before Peyronies started, but it is so much improved since the implant.  I lost almost all sensation with my second round of disease.

I also find the sensation is affected by how far I inflate, there is a 'sweet spot' which for me is slightly lower than being fully inflated.  It might be worth noting that when fully inflated my penis is extremely hard.

In my mind I approach this as developing a new relationship with my penis.  Although I miss my original one, I have to accept it has gone forever.  I'm now in a new relationship that needs work, I have different expectations in terms of what is pleasing and pleasurable and to make it healthy it takes time understanding and discipline.

I now know a new relationship after losing a treasured old one can still bring you pleasure.

I hope the above is helpful, but please understand this is one individuals experience and views and may not speak meaningfully to all of you.  We are all different.

Kind regards and good luck to everyone who is struggling with this issue.




Thank you for sharing your experience. It's really helpful to hear from someone who has gone through this process. Your story provides a lot of insight and reassurance for anyone considering an implant. I appreciate your honesty and the detailed account of your journey. It's clear you've been through a lot, and your reflections are valuable for others facing similar challenges. Wishing you all the best
#2
Penile Implants / Re: Implant Surgery July 29th ...
Last post by oliver776 - Yesterday at 03:18:18 PM
Quote from: djl1965 on July 21, 2024, 12:19:43 AMMy Journey with Peyronie's Disease: From Despair to Hope

In July 2022, my life took an unexpected turn. I went from being extremely sexually active to experiencing unbearable pain and a rapid decline in my ability to maintain an erection. This sudden change left me confused, scared, and desperate for answers.

For two years, I fought against my condition. I tried everything—medications, pumps, and stretching exercises—but nothing seemed to help. Each day was a battle against pain and frustration. My confidence plummeted, and the joy I once found in intimacy vanished. The physical pain was relentless, but the emotional toll was even more devastating.

There were moments when I felt utterly hopeless. The thought of ending my life crossed my mind more times than I can count. I missed my old self, the person who was full of life and passion. It was a dark and lonely place to be, and I struggled to see a way out.

But I held on. I reached out for help, even when it felt like the hardest thing to do. I found support in friends, family, and professionals who helped me navigate this challenging journey. Their encouragement gave me the strength to keep going, even on the darkest days.

Now, I am facing surgery as my last option. The fear is overwhelming, but so is the hope for a better future. This surgery represents a chance to regain control over my life and to find relief from the pain that has haunted me for so long.

I know the road ahead won't be easy, but I am determined to keep fighting. This journey has taught me about resilience, the importance of seeking help, and the power of hope. If my story can help even one person feel less alone in their struggle, then sharing it is worth it.

To anyone else going through something similar, know that you are not alone. There is help out there, and there is hope. Keep fighting, and don't be afraid to reach out for support. Your life is worth it.

Everyday I will post my journey here!

D

Thanks for sharing your story about living with Peyronie's disease. It's not an easy thing to talk about, and I appreciate your honesty.

It sounds like you've been through a tough time, trying different treatments and dealing with the emotional impact of the condition. I'm glad you've found some support from friends, family, and professionals.

I'll be interested in following your journey as you prepare for surgery and beyond. Good luck with the next steps!
#3
Quote from: GaussRifle on July 27, 2021, 06:16:26 PMI don't quite know how long is a regular erection supposed to last without physical stimulation? I start losing my erection if I stop physical stimulation. As far as I remember,  I have always been this way since around 20.  Doctor has already did a doppler and reported excellent inflow and detected no venous leak. I take cialis 5mg everyday and while it does help me get "harder" , I still start losing erection if I keep it unattended for more than 15 seconds. Also, I notice longer lasting morning woods than when I try to stimulate myself. I know from Hawks answer that morning woods come from a different pathway being activated. I want to hear from you guys, do you guys touch your penis and have a raging boner for minutes?
Hey! So, it's not common for erections to last minutes without stimulation. The fact that Cialis helps but you still lose erection after 15 seconds suggests there might be other factors at play.

Yeah, morning wood is different, and it's cool you've noticed that. As for your question, I don't think most guys can just touch their penis and get a raging boner for minutes.

Maybe consider talking to a sex therapist or urologist to help figure out what's going on?
#4
Thanks for sharing about Nizagara 100! So it lasts around 4-6 hours and starts working in 30-60 minutes. Good to know taking it on an empty stomach helps.

Definitely worth checking with a doc if you've got health issues or take other meds. And yeah, there are other options like Malegra 200 and Vidalista Black 80.
#6
Fox1: I am german too, can you recommend the doctor you visit or any Peyronies Disease Expert?
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I am at Prof. Porst in Hamburg. I have chosen him because for me he is "the" expert for peyronie's desease in Germany (and I do not want to be treated by a surgeron). You need a private health insurance or you have to pay on your own. I know it is a lot of money but this deasease is for me not like a appendectomy. That is why if I could I would always spend (if neseccary) a reasonable amount of money at least on the medically diagnosis. I think Doppler ultrasound with artifical errection, blood analysis and ... is arround 700eur.
But you will find other specialists for peyronie's deasease where you have a waiting list but they are covered by public health insurance. Prof. Porst has a very detailed website to get a lot general information for free.
#7
Thanks for the answers guys.

Fox1: I am german too, can you recommend the doctor you visit or any Peyronies Disease Expert?

Mikel7: Yes i consider Pelvic issues. I will do a 3-6 month pelvic programm that can help with prostatitis, CPPS and some other issues. Started it a couple of times just to lose discipline after a few weeks. This time i  will complete it !

The way i see it there may be 4 options for the reason my pain:
1) Actual penis damage like scar or fibrosis pressing a nerve
2) All a pelvic issue
3) Only neuropathic pain (psychological)
4) a combination of some or all of them

It is not easy. Actually the hardest and most frustrating challenge in my life so far (hoping it will at least stay #1 ...) . But what other options do i have other than trying my best and going one possible route after the other?
#8
Quote from: Mikel7 on July 23, 2024, 05:25:03 AMComing to the decision of an implant is a combination of many things you have tried that are not resolving things now. I do not know of an implant Dr in London, possibly other members will chime in. Have you possibly considered a virtual consult with Dr Eid in NY? He would be my first and only choice for an implant surgeon.

Now I am an advocate for men's hormones being in tune and I can tell you that 99% of Dr's out there are clueless as to the correct tests and the individuals subjective symptoms. You say your levels are OK within normal range? Are they at the bottom of the normal range or midddle? I say this because I have been on full hormone therapy for the past 20 years and have learned a little about how it all works. I would say you need to find a competent Dr who could actually test you Free T levels, prolactin, E2, estrogen and a few others to see if that is what is causing you problems.

Thanks for your response, yes my t levels are at the bottom of the range, so because of that they said my levels are within range and normal despite it being at the very bottom. I hope someone from the UK can help, because I'm not sure what to do at this point. The NHS here doesn't really know what to do and the urologists I see are around 3-5 months wait time which is taking a toll on my mental health, as I know it does many others.
#9
Injections for Erectile Dysfunction / Re: Is it time for an implant?
Last post by Mikel7 - July 23, 2024, 05:25:03 AM
Coming to the decision of an implant is a combination of many things you have tried that are not resolving things now. I do not know of an implant Dr in London, possibly other members will chime in. Have you possibly considered a virtual consult with Dr Eid in NY? He would be my first and only choice for an implant surgeon.

Now I am an advocate for men's hormones being in tune and I can tell you that 99% of Dr's out there are clueless as to the correct tests and the individuals subjective symptoms. You say your levels are OK within normal range? Are they at the bottom of the normal range or midddle? I say this because I have been on full hormone therapy for the past 20 years and have learned a little about how it all works. I would say you need to find a competent Dr who could actually test you Free T levels, prolactin, E2, estrogen and a few others to see if that is what is causing you problems.
#10
Yes getting checked out is a first step but I ask you if you have ruled out pelvic issues? It is called CPPS and in basic terms it is a man having pain issues in their groin/penile region. I deal with this from an injury of falling on a steel bar and breaking my tailbone.

Therapy involves strengthening and stretching exercises. There are a lot of great videos on Youtube that explain and instruct you. There are not a lot of physical therapists for men on this issue though. The pain that radiates from your penis could actually be referred pain from another area in your pelvic muscles.