T.E.P (tunica expansion mesh procedure) and implant journal

[jj21]

Thought I would do a post. Sometimes just writing in here as a journal clears your thoughts.

I am now about 6 months post surgery and 5 weeks post revision (pump re-placement, remove some fluid from reservoir, scrotal web removal, cystoscopy).

Graft thickening

The issue with the graft thickening on the right side causes some discomfort. It also causes a twist when inflated. One side inflates nice and round and the other side does not. So, left side is inflated properly, right side is a bit soft and flat. This causes quite a bit of discomfort and almost looks and feels a little deformed.

I have been told that there is nothing which can be done about this, the graft may contract from cycling or may not.

Currently, the graft has thickened a bit more and is a bit painful on one side.

It is very uncomfortable and I am a bit worried it will inhibit gains from cycling due to only one side inflating to stretch.

Not much I can do but just live with it and hope for the best or eventually look into fillers.

Sometimes with engorgement it is a bit less prominent, but it has been difficult to get engorged. I will eventually try viagra and see if it helps.

Something to note is, would I have had this issue if I received just the implant and not the T.E.P? There is no point thinking backwards and I am learning to accept things but I can't help but think this way atm.

When I first had the implant, both sides would inflate the same and it looked great, with good girth. Eventually the right side graft thickened and has caused this issue. It is definitely uncomfortable and would feel awkward/strange inside a vagina. A bit lost at what to do, wish it would go back to how it was. Will have to try viagra and see if the blood flow helps make a more even erection.

If anyone has any advice or ideas I would appreciate it a lot.

Dog ear

There's a pic attached below of my deflated titan. The dog ear is quite prominent and a little painful, as you can see, I can't really move my flaccid to the right. This makes sleeping uncomfortable, especially when rolling over. Wearing tight clothes is a bit uncomfortable as well.

I am wondering if this will improve over time or is this something we just have to learn to live with?

Cycling

I am cycling 1 hour each day, I do get a good stretch and it is still painful. Unfortunately, mostly the left side inflates, and the right side does not inflate much atm due to the thickened graft.

Size, length/girth

Length is close to pre-op of 6.5 inches bone pressed. I haven't officially measured as I do not want to think about these things atm.

Girth is difficult to measure due to one side inflating and the other side not inflating as much. My girth on left side is good, right side is just flat.

Pump placement

This is my biggest issue, I had revision surgery to fix the pump, however, the pump is more uncomfortable now than it was before. The deflate valve has twisted, so, the button is horizontal and it leans to the right, pushing my right testicle up into my pubic bone, as well as constantly pushing against the right side of my scrotum. Sitting and laying down can be very uncomfortable.

Surgeon said there is no easy answer and that I have a small scrotum which is an issue.

I have been pulling down on the pump which has helped to lower the pump position, but has not helped to set the deflate valve in the middle of the scrotum.

All I can do is wait it out. I know it would not be worth another surgery.

Leakage issue

Before my revision, this was my biggest issue. I would have leakage at least 2 times a week which would result in extreme pain and resulted in me going to emergency twice. I had to deal with this for 4 months, it was terrible. Today, I do not have this issue. I sometimes get leakage after using the bathroom but the pain is very minimal.

Pain after ejaculating

This was an issue for me before my revision. I had to bank sperm to start TRT, but ejaculating would result in extreme pain, similar to the leakage issue. Currently, I do not have extreme pain after ejaculating, however, there is still some pain and discomfort.

Sex

I might have sex soon, I have a girl that is informed about the implant. The issue is that, with the thickened graft, the shape of the penis is a bit deformed. I think with engorgement this may be a bit better. I might take some viagra and attempt to have sex soon. Ejaculating also still results in some pain, so, sex has not been a priority atm.

I have really just stopped thinking about sex, the implant, etc and been trying to move on with life.

Current thoughts on implant/T.E.P

I think if you're younger, you should really exhaust other options first. I understand why some surgeons are reluctant to operate on younger guys. We have higher expectations, and if something goes wrong, we have to live with it for 30+ years.

Pre-implant, I could walk comfortably, I could run, I could sleep comfortably, I could go to the gym, pick my niece n nephew up. All these things I am currently unable to do. So, just remember, an implant may give you function, but if something goes wrong or you need revisions, or you have displaced pump, it can really affect your quality of life for a while.

Circumcision

I have found being circumcised is definitely different, it takes a lot of getting used to. If I could go back, I may have opted not to be circumcised and either done the inverted version of T.E.P or gotten just the implant. It's hard to say as who knows if I may have had even less girth/length without T.E.P? Also, difficult to give a positive review considering the thickened graft issue which is affecting girth and shape of the erection.

Final thoughts

I have tried to be as honest as possible here. It's difficult for me to give a proper review yet as I am still recovering from revision surgery.

A few months from now all these issues may be irrelevant. Time will tell. Acceptance is key.

Any advice is always appreciated from you guys.

J

[GaussRifle]

I don't have anything to add except say that we are rooting for you ! Not everyone has the courage to go through this, so please feel proud of yourself for trying to do something about it and go easy on yourself.  With cycling and daily low does of tadalfil, things can improve over time.

[jj21]

Did some research and I think the issue with the right side not inflating is due to the graft retracting. I read some studies and it seems to be a common undesirable side effect which causes ED, instability and recurrence of curvature when certain grafts are used. One of the studies stated that extra graft should be used to avoid this.

If anyone has any experience with this, I would really appreciate it.

J

[IwillbeatPD]

Hey JJ-

First of all man, I just want to say I applaud your mindset and strength getting through this. Do you mind clarifying the graft situation for me so I can help you brain storm? Was this like an excision and grafting? Or was it only a graft like extra tunical grafting? I'm not familiar with TEP.

As you said, I do hope alot of these issues resolve with time. I actually think they will man. You're still not that far out from your surgery date so hopefully with time things settle down. Your body went through a lot of trauma with the two surgeries so I think it's realistic to say give it at least 2-3 months before worrying about pain and not being able to exercise, etc.

What part is bothering you the most? The pump in the scrotum?

And if we're being positive here, at least you have decent length and girth. Many don't have that. I saw the photo and I did see the dog ear, but I've read a lot of journals and everyone says it improves with time. If it really bothers you I'm sure you can just inflate a little right?

My mindset has always been, if I have to get an implant, I'm doing it because I want my dick hard and straight. That's the dick your partner will see. I can't think of the last time a girl just played with my flacid dick. Before her hand even gets in my pants I'm already hard from just the kissing. So if you're worried about the appearance- I wouldn't sweat it.  


On a final note, as you've said yourself, remember that you're not comparing to your pre peyronies penis. And I'm sure you'll end up better off than you were.
 

[jj21]

Do you mind clarifying the graft situation for me so I can help you brain storm? Was this like an excision and grafting? Or was it only a graft like extra tunical grafting?

Hey IwillbeatPD, thank you so much for your support, it really means a lot. This is a tough time for me. I appreciate it and will be there for you if you ever go the implant route. I will answer your questions below.

The surgeon advised that there was an extra tunical graft used during the initial operation. I have had a reaction to this and it has thickened on the right side. He advised this would be difficult to treat without a formal revision requiring immobilization of nerves etc and this is not worth the risk. He said during my partial revision, he gently dilated the right tunica space to see if the area could expand over time. Upon research, I found some studies that stated retraction of the graft is a common undesirable side effect. A TachoSil graft was used.

I think the part which is affecting me the most is just the constant discomfort. My frenulum area and right side of shaft is still very sore. The pump is awkwardly placed, despite the fact I had revision to fix this particular issue. It is now twisted and constantly hitting my right testicle and pushing it up into my pubic bone area. So, I have not been able to resume my normal life of going to the gym etc. I haven't picked up my niece and nephew in over 6 months. Even now as I am sitting down, I can feel my right testicle being hit, and my right side of my shaft is sore and has a slight burning sensation (I think this is from the thickening of the graft on the right side I am not sure). I am wearing loose clothes. I haven't had a good sleep since I was on pain killers.

The size is good man, the issue is the pain after ejaculation and shape, kind of make sex unenjoyable. It's hard to have sex when you anticipate pain after orgasm (almost like having peyronies again). This could improve with time.

I am learning to accept these things, but at the same time, I want to do as much as I can to ensure I still have the best result.

I am just wondering if Perito exercises or VED could help contract the graft on the right side?

Thanks again, I am hopeful and just trying to stay positive. The issue with being under 60 with an implant is that, if something goes wrong, you have to live with it for 30+ years, and as you can see, there aren't many solutions out there.

Other than that, I have been meaning to get some viagra and see if the extra blood flow may improve the issue of the right side not inflating as much. It might even things out and give it a rounder shape. I also am thinking of booking a video consult with Dr Hakky, he also performs the T.E.P procedure, it will set me back about 800 Australian dollars but I am sure he will be able to tell me if there is anything I could do.

Apologies for the vent, I have been dealing with this for 6 months now, so, just a bit lost at times and waiting for it all to be over.

I appreciate your support and when/if you go the implant route I can give you my skype or other contact and offer my support.

J

[Sonic]

I agree with IwillbeatPD, you are very strong dealing with this, also wow, can't believe half a year has already gone by. I always thought Tachosil grafts get absorbed by the body any way so I thought this would be no problem?

''TachoSil will be enzymatically degraded and safely absorbed by the body within 12 weeks of application.''

Since you already had a revision recently I think it's best not to get to fixated on issues now as you will just take a great risk doing yet another one. Only time you should have another one is if the implant malfunctions. I have read you still even after revision have some issues with pump placement etc which is a pain in the ass probably but just give it time and you will probably learn to adapt to it all much better!

I personally would have skipped the TEP procedure and definitely the circumcision. You would have regained some girth just by the natural cycling process anyway TEP was perhaps overkill but whats done is done and from all the pics I've seen your penis now looks 10 times better than the pre op pics where you had severe narrowing all over the penis!

Hope you have a good weekend bro stay strong!

[Curvekiller94]

J good work so far man I'm sure things will get better as you go even doctor eid said it can take a year for full sensitivity etc. hang in there I'm sure things will get better. Don't give up on cycling at this stage I would say in my opinion with no knowledge of actually having an implant that you should embrace the pain and cycle as often as possible. There is no way inflation will hurt anything I could really only see it helping. Stay dedicated you got this j hang in there

Danny  

[jj21]

Thanks guys, really appreciate the responses.

Sonic - in some cases, graft can retract which can cause ED and recurrence of curvature. I read some studies where this was an undesirable side effect of using graft.

My other option is to get fillers, that way the unevenness would probably even out. It's about 8k here in Australia.

Funny thing, I seem to get better blood flow when standing than sitting down?

I am just going to cycle intensely for the next month, then maybe consider perito/VED exercises.

Thanks for the support guys.
J

 

[Trapper]

If you are wanting more roundness I would suggest a PDE5 MAX dose EOD or daily dose it's a great idea to keep your natural erectile tissue conditioned, well circulated and oxygenated (same concept as the VED). At the same time I think filler could work however I spent way more than my initial quoted price so it is an expensive rabbit hole to dive down especially if you do not like the distribution of the filler and need to go back because you if thats the case you will  either have to add more to correct irregularities or remove it in office with an agent that breaks down HA not sure what that cost would be as I went with the latter.

Also, in the laying down position your blood vessels have to work harder to get blood into your dick than in the standing position at least that's what Hakky told me at my pre-surgical consult.
 

[Trapper]

If you are wanting more roundness I would suggest a PDE5 MAX dose EOD (did this since week 1 postop) or daily dose it's a great idea to keep your natural erectile tissue conditioned, well circulated and oxygenated (same concept as the VED). At the same time I think filler could work however I spent way more than my initial quoted price so it is an expensive rabbit hole to dive down especially if you do not like the distribution of the filler and need to go back because you if thats the case you will  either have to add more to correct irregularities or remove it in office with an agent that breaks down HA not sure what that cost would be as I went with the latter.

Also, in the laying down position your blood vessels have to work harder to get blood into your dick than in the standing position at least that's what Hakky told me at my pre-surgical consult.
 

[jj21]

Thanks Trapper, I do take daily 5mg Cialis, I will have to try with the as needed dosage of 20mg cialis or 100mg viagra.

Did Dr Hakky say that this is a common issue with implants, that in the laying down position, they may not engorge ?

Thanks for your advice regarding the fillers, I will have to wait and see how everything goes. It's great how you guys have access to the best surgeons for this procedure (Eid, Hakky, Clavell).

J

[Trapper]

If your cardiovascular system is healthy no reason why you can't do maximum dose you will get significantly more engorgement in my opinion.

Regarding your question on Laying down with the implant Hakky didn't say it was specifically a problem with the implant but more hemodynamics in general. If you think about it when your laying down and your penis is pointing upwards your body will have to work harder to pump blood upwards positional ED is definitely a thing and if you have ED than it's going to be easier for your body to have a better erection in the standing position.

Good luck hope Hakky can give you the answers you're looking for!

[Sonic]

Thanks for your advice regarding the fillers, I will have to wait and see how everything goes. It's great how you guys have access to the best surgeons for this procedure (Eid, Hakky, Clavell).
J

Those 3 really stand out based on what I read. They really have a passion for installing implants and ensuring maximum patient satisfaction. In regards to your graft retracting. Is this permanent or will it be resolved with time? Real bummer you are still experiencing issues after a revision but I hope things will get better with time. I can imagine it takes quite long getting used to having a pump in the scrotum etc..

[Sonic]

Regarding your question on Laying down with the implant Hakky didn't say it was specifically a problem with the implant but more hemodynamics in general. If you think about it when your laying down and your penis is pointing upwards your body will have to work harder to pump blood upwards positional Erectile Dysfunction is definitely a thing and if you have Erectile Dysfunction than it's going to be easier for your body to have a better erection in the standing position.

Makes sense. Ever since my ED began I have noticed significantly weaker erections when I am laying down but when standing or on my knees there is much more power in them. Before this all began my erections would be rock hard even if I was  laying down but now they are at the weakest in that position.

[jj21]

Hey guys,

Viagra helps a little bit, the erection is a bit rounder and the unevenness of the cylinders inflating due to the graft thickening is less prominent. But, still there.

With viagra, can get and maintain a reasonable erection in lying down position as well.

I have 2 girls interested, I guess in the next month I will try sex out. I am reluctant atm due to pain after ejaculation, but I think time heals all.

I think I am just going to cycle intensely for a month, and then consider Perito exercises and maybe VED. See how it goes. If by Feb/Jan next year I am still not satisfied, then I might consider fillers.

Sonic - The surgeon who did my implant advised that the graft thickening issue I may have to just live with. It might contract over time, or might not. I sent you a msg on another thread, I had found some European high volume surgeons, not in Sweden but Italy, Belgium and Netherlands - not sure if it helps, but I thought of you.

Thanks for the support as always guys,
J

[IwillbeatPD]

Hey bud!

Sorry just now replying. I've read alot of your posts about the graft and just so many questions in my head about that. It sounds like your dr did an extra tunical graft during an implant procedure. That in itself is odd to me. Everywhere I've read says that the implant usually correct any dents or hourglassing. Actually in one of Dr Hakkys videos I saw doing an implant he actually says he's breaking up the scar tissue before the insertion of the implant.


I also saw where I believe Sonic said tachosil is supposed to be absorbed by the body with time. If so, hopefully thats the case with you. Id certainly be pushing the cycling now though to try to expand that area as much as possible.

For the pump, sounds like it's not the most optimal placement, but hopefully it settles down with time. Id definitely keep trying to manually pull it down. Maybe after enough time you can get it into a better location.

Also curious what is causing the pain at ejaculation. The pain is ONLY present then? I wonder what about the process of ejaculation causes it? Maybe the pain being referred from your testicals?


On the bright side, you're prob just about cleared for sex. I saw you mentioned you had a couple girls lined up. Honestly man, id go for it even if it's just for your mental health. Hopefully you have some peace knowing you can actually have sex- I mean that was the whole mission right? I think just getting out there will help you feel more back to normal-and honestly I'll be truly happy for you to be able to do that! Has to be exciting, even with these other minor issues. I can only imagine the issues you have now will get easier with time, and certainly not worse. Def give the tadalafil a shot for better engorgement. Keep us posted my bro!

[jj21]

Sorry just now replying. I've read alot of your posts about the graft and just so many questions in my head about that. It sounds like your dr did an extra tunical graft during an implant procedure. That in itself is odd to me. Everywhere I've read says that the implant usually correct any dents or hourglassing. Actually in one of Dr Hakkys videos I saw doing an implant he actually says he's breaking up the scar tissue before the insertion of the implant.

Hey IwillbeatPD,

Thanks so much for your support, it really means a lot and helps keep my mind at ease. I agree, I thought an implant, especially a titan, pushes out any dents and fixes curvatures on its own. I have also read studies from Egydio, who is the Doctor that created the T.E.P technique. In the studies it states that, T.E.P is an alternative to grafting. I just read my operation notes and it states "Tachosil graft over tunica meshing for haemostasis".

I've learnt to just let things be for now, maybe book a consult with Hakky.

All the best,
J

[jj21]

Regarding your question on Laying down with the implant Hakky didn't say it was specifically a problem with the implant but more hemodynamics in general.

With me, even without arousal, the implant is rounder when standing? Is this normal ?  

[IwillbeatPD]

100% would meet with Hakky. If anyone can give you a solid opinion about what's happening it's him. If your doctor did something wrong he could be biased in the info he gives you if he doesn't want to fault himself.  

[jj21]

100% would meet with Hakky.

Thanks, appreciate it. I will be organising a video consult with him soon.

J

[jj21]

Review of Surgeon

Long post but well worth it if you're considering an implant, especially if you're younger.

As you may know from following this thread, I previously was appreciative of my surgeon and only had good things to say. However, after my revision, I feel I could have been treated better. I have written this post to help others and am open to opposing opinions.

I've been reluctant to type this post as I have been trying to be appreciative and stay positive. I also did not want to complain too much or defame anyone. However, perhaps this post may help some of you in the future. I have removed my surgeon's name from my signature so this does not affect his business.

Consider, I paid 12k out of pocket for this procedure (I have private health insurance but in Australia, it still costs around 12k out of pocket) and travelled interstate to see this surgeon, probably paying 3-4k in airfares and hotels.

My main issues are as follows:

Obsessive/Penocentric

If you've been following this thread, you will know that I have had issues with the graft thickening on the right side. I also have pain on the right side, and have had Erectile Dysfunction after this issue started, and numbness on the right side. When fully inflated, the penis stretches and is round and thick on the left side, however, on the right side it is flat, oval and SOFTER. The inflated device would also twist to the left, I assume because the left side inflates more.

Initially, I had no idea what this was and assumed that the device was malfunctioning, it seemed that the right side would deflate and inflate less (as the graft had thickened on the right side, when deflated it just feels thick, I cannot feel the cylinders on the right side when deflated).

After my revision, the surgeon wrote in a letter to my GP "it is a very minor issue and if he was not so obsessive and penocentric, most patients would probably not worry about it". He also stated that the issue is a "perceived issue".

I probably discussed this issue with the surgeon, once over the phone for less than 5 minutes, and once in his office pre-revision to determine that the device was working correctly and there were no inflation issues. I had no idea what it even was and thought the device was malfunctioning as, during a period of 3-4 weeks the right side just thickened n stopped inflating or (what seemed like) deflating as much. I had no idea the graft can thicken or retract. Thus, I raised the issue with him. I don't believe I gave any indication of being obsessed over this issue, rather wanted to know what was wrong and whether it could be fixed. Obviously, if there are issues with the device, I would be concerned as, if it is not correctable, I will be living with it for the next 30+ years.  

The surgeon then posted this letter to the only two high volume implant surgeons in my state (who I had seen previously). Now it is a bit difficult to get a surgeon in my state to take me seriously when they have read a letter from my surgeon stating I am obsessive and penocentric. One of the issues here is that, once one surgeon has operated on you, another surgeon won't want to take you as a patient, I assume due to liability etc. So, I am limited in what I can do in the future if these issues continue.

I found this very unempathetic, unprofessional and inconsiderate.

Letter to Another Urologist

If you have been following this thread, you will know that since my initial operation in February, I have had leakage post-peeing, sometimes randomly, and in my sleep. After the leakage, I would be in immense pain all throughout my shaft, scrotum, anus etc. The pain would last 4-8 hours, usually subsiding overnight. This would happen at least twice a week and landed me in emergency twice. The symptoms describe prostatitis, I took anti-inflammatories thanks to my GP, but the issue never subsided until my revision.

I dealt with this for 3 and a half months until contacting my surgeon via telehealth in mid-May, he advised that this was not normal, and he needed to see me, he advised he will try to get an early appointment. I checked in with his staff who advised they could only offer me an appointment in 8 weeks' time (8 more weeks of pain). I then booked another telehealth with my surgeon (one week after the original telehealth), during this telehealth he spent about 1 minute talking to me, asked what was wrong since we already spoke a week ago, to which I explained I have only been offered an appointment in 8 weeks' time and am still dealing with this leakage issue as well as pump pain and placement issues and pain in the shaft and constant discomfort for almost 4 months. He advised he would try to get me an earlier appointment. I paid $150 per telehealth, including the telehealth which lasted approximately 1 minute ($300 total).

I contacted his staff again and they still advised they could only offer an appointment in 8 weeks' time, they said they had checked with the surgeon and that is all they can offer. I then requested that they write to a urologist in my state so I can be checked up quicker. They advised that, the other urologist is probably going to charge a couple grand if they do operate whereas the initial surgeon would not charge anything to do a revision; I was happy to pay extra to another surgeon just to have this issue resolved (at this point I was just tired of being in constant pain and discomfort for months). I was advised the original surgeon will write to the surgeon in my state within the next day. Some of this is also in this thread, you can see when I was anticipating seeing another surgeon etc.

I booked in 2 weeks later with the surgeon in my state, he had not received any correspondence from the initial surgeon. Paid $250 to be told I need to go back to my original surgeon as no correspondence was received. I then called my initial surgeon's office; they provided a letter which they had sent via post to the surgeon in my state. In the letter it states, "the patient is suffering from pump issues etc he also suffers from anxiety, and I think his anxiety is contributing to his symptoms".  The surgeon had made this assumption based on my medical records which stated I had anxiety. It also states in the letter "it seems he cannot wait 3 weeks to be seen by me", actually, I was only given an appointment in 8 weeks' time. 8 more weeks of pain and discomfort.

I emailed my surgeon, advising that my implant symptoms have been confirmed by my GP and 2 other urologists in my state, and I have been in emergency regarding the pain after leakage i.e my anxiety is not contributing to the symptoms. Further, the anxiety diagnosis in my medical records was 5 years old. Only after this email did the surgeon agree to see me within 10 days. I have since had 'anxiety' removed from my medical records.
I assume, the surgeon did not think my symptoms were serious enough to warrant an earlier visit.

Upon revision, the leakage issue resolved (not sure if this was a result of the surgeon removing fluid from the reservoir, or from the medication he put me on) or, I believe he did a washout with anti-biotics. I also had revision to fix the pump placement which was very awkwardly placed. Despite revision the pump is now worse than it was before and pushes my right testicle into my pubic bone region. The deflate valve is difficult to reach as it is on the far-right side of my scrotum and is twisted.

This leakage issue really affected my quality of life, I am actively in the gym, have had an amazing physique for 12 years and had an office job. Those 4 months, I lost my physique, never went to the gym and did not resume work. I was constantly in pain and discomfort. I had an MRI which showed that the reservoir was pushing against the bladder and that everything was cramped up (prior to the revision).

After my revision, the surgeon wrote in his letter to my GP and the other urologists, that he does not understand the prostatic secretions (leakage) issue and is struggling to understand the symptom in relation to a penile implant.

Perceived issues

The letter to my GP and the other urologists starts of as this "This young man, yesterday, at ____ hospital, had his penile implant explored to try and deal with a number of perceived issues". As advised above he also believed that the left side inflating more than the right is a "perceived issue".

It seems the surgeon does not believe my issues are real, he believes they are perceived in my mind; not real. If this was true, I would not have required a revision.

Left inflated for 5 weeks

If you've been following this thread, you will know that after my initial surgery, I was left inflated at the same level of inflation as post-surgery, for 5 weeks. I was suppose to be deflated slightly (T.E.P requires some level of inflation for 4-6 weeks, but I was not supposed to be as inflated as I was). It is possible this may have contributed to my long-term issues. Initially, I thought a scar capsule healed over the reservoir and was causing auto-inflation but, I don't believe this is what happened. Dr Eid does usually advise that a scar capsule can form quickly over the reservoir, and that full deflation  is very important.

On week one, my surgeon and nurse tried to deflate me, however, there was too much swelling. The surgeon advised that he was going on holiday for a few weeks and to book in with the nurse the following week.

On week two, I booked in with the nurse, there was still too much swelling, she advised that she was going on holiday and to book in with another doctor at the same practice the following week, as her and the surgeon will be away on holiday.

On week three, the swelling subsided, I called the surgeons office and was told by one of his staff that she couldn't book an appointment with another doctor at the practice because it was almost 3pm and she is off work but she will do it the next day. I didn't hear back from her. I called back on week 4 and was told by the same person that she will take care of it, I asked to speak to the staff member/receptionist I usually deal with, they said "no, I will take care of it". The nurse and surgeon were still on holiday.

Week five, I had now been left inflated around 90% for 5 weeks, it was getting very uncomfortable, I was also getting the leakage issue which at the time I assumed was a result of being left inflated for so long. After having immense pain after leakage, I called the nurse and advised her I was in a lot of pain and haven't been deflated, her initial reaction was and this is word for word, she first laughed and then said "you're just an anxious person **** (my name)". After advising to her that their office staff failed to book another appointment and I had called twice and had been waiting 2 weeks, she called the staff and called me back, advised the pain was due to being left inflated for so long and that they could see me immediately. As I was in pain from leakage, I didn't see the surgeon until 2 days later.

At my appointment 2 days later, the surgeon examined me and said "the implant is pushing the scrotum forward". I am wondering if this is why I had pump placement issues. He also apologised for his staff not being responsive and deflated the device. He advised that there was still some swelling and a haematoma in the scrotum which would settle in time. The nurse then ensured I could deflate and inflate the device and rushed me out of her office. I was not advised what a full deflation looks like or feels like or given any advice on how to best deflate the device. I spent probably a total of 10m in the nurse's office.

I felt that after this issue, the surgeon and nurse just did not want to deal with me. They either felt that I was making issues out of nothing or that my case would be troublesome.

Nurse's comments

After the nurse laughed and made the comment of "you're just an anxious person", I really did not want to deal with her. In the future when I had any issues, I tried to just keep it to myself as I did not want to be laughed at or called anxious or made to feel like I was making issues out of nothing. I probably should have reached out quicker regarding the leakage issue I was having, this would have saved me a lot of pain and discomfort.

I really don't know if these issues are very uncommon or they just seem to find it funny/amusing in younger guys, or simply that a female nurse cannot fully fathom the pain, understanding and acceptance that comes with having penile problems.

I do recall in my post-surgery consult with the nurse, while we were waiting for the surgeon to arrive, she was complaining about having to stay back and wanting to leave that day, and excited to go on her holiday to Bali the following week. I don't think she was very concerned about my implant or patient care at all.

Leakage/ejaculation pain

As already explained above and throughout this thread, I had immense pain post-leakage which would happen at least 2 times a week. The pain would last 4-8 hours, usually subsiding fully overnight. I would also have the same pain post-ejaculation. I needed to bank sperm to start TRT, so, I had to ejaculate. I emailed my surgeon regarding this, advising that, I needed to see him and have this issue resolved, this was also explained in my telehealth appointments with him.

Unfortunately, he was of no help, I don't think he saw my issues as serious enough to even give an earlier appointment, until I had emailed him regarding the anxiety letter issue. I had to hold off on TRT for a while which also affected my quality of life.

As you can see, I had to bank sperm to start TRT, and having pain post-ejaculation was holding me up for this. I would expect that medical professionals would follow through with their duty of care and take your health concerns into consideration. Especially, if these issues were a result of their surgery.
 
Positives

I do want to be fair, and so I will add the good experiences I had with this surgeon. Despite the issues I have had, my surgeon was initially, very patient and understanding. He answered all my questions, he had recommended T.E.P, offered to do the T.E.P via a ventral incision to save my foreskin. He also did my partial revision without charge and this included removal of the scrotal web which is a cosmetic procedure.
Although, I feel he wasn't as helpful after the surgery, and especially after the revision.

Scrotal Web

I am grateful that the surgeon performed this procedure as part of my revision free of charge. However, in his letter to my GP and the other urologists, he states "He is also worried by a scrotal web which he believes is changing the length of the ventral aspect of his penis". Actually, I was never worried about length or perception of the penis, and I never expressed any issues with length of the penis, I advised him that my length was returning thanks to cycling and I was happy with that (you can confirm from reading this thread that I don't have issues with length/girth). I advised him in a consult that another urologist in my state, stated that the scrotal web procedure is good and can add a nice cosmetic effect to an implant. I then asked him if he thinks it will make a difference to have it done, he replied yes it will. So, we proceeded to have it done.
 
Graft

Upon research it seems that the T.E.P technique, should not require grafting. The studies indicate that T.E.P is an alternative to grafting. I recall specifically, in my deflate consult with the surgeon that he could not remember if he used a graft. Upon receiving the operation notes, they do not state which side the graft was used. User Tortao who also had the T.E.P procedure done, did not have any grafting done.

In my operation notes it states "Tachosil graft over tunica meshing for haemostasis".

The graft thickening is what has been causing me pain and discomfort, as well as functional issues. I.E the implant can be twisted, hard and inflated on one side and soft, oval, flat and deflated on the other. After reading some studies, they also state that graft retraction is a common undesirable side effect of grafting. Graft retraction can result in Erectile Dysfunction and curvature recurrence post-implant. I was not advised of this at any time.
 
I am also concerned that one side not inflating properly will affect cycling, I can only feel the stretch and pain on the left side when cycling. Nothing I can do about it now other than hope that the graft softens and improves over time. Maybe try Perito exercises and/or VED.

Pump placement

As you guys already know, initially my pump was very awkwardly placed, it got to a point where it would hurt to pump, as the pump was pointing upward towards the left. Pumping with my fingers would result in me hitting the tubing/deflate valve which would cause some pain. Additionally, one side of the deflate valve was poking my right-side scrotum constantly. The pump was very high, and on an angle. This was painful, uncomfortable, and also cosmetically, did not look the best ( although, cosmetics is not a big issue here, pain and discomfort it).

I advised my surgeon of these issues on one of our telehealth appointments. I recall asking him if the pump will settle over the next few months (it had already been 3 and a half months but I note, after reading some journals, peoples pumps settle over 6 months), his exact words were "with the sub-coronal incision, the pump will not get much better, you will require a simple revision".

In his email to me prior to my revision he states "I understand your issues of uncomfortable pump placement (which I believe to be caused by the significant scrotal haematoma you developed)". Here, in writing, he does not state that the sub-coronal incision he performed could result in uncomfortable pump positioning.

Unfortunately, after my revision (penoscrotal incision) the pump is now worse than it was before. It is hitting my right testicle and my right-side scrotum. Sometimes it pushes the right testicle up into my pubic bone region which is very uncomfortable. The deflate valve is now horizontal, so, I must press the front and back of the scrotum to access it (as opposed to side to side). This makes deflating very difficult. The pump itself is in front of the testicles, pointing to the left and up, kind of on an angle.

In the letter to my GP and the other urologists, the surgeon states "the pump was repositioned in a lower part of the scrotum where I think he will be more accessible although, because he has quite a small scrotum, it is difficult to disguise". I emailed my surgeon 2 weeks post-revision when I started cycling and realised that the pump was in an even more awkward position than before, the surgeon replied "You can try and manipulate it but it may not move, Where I put them and where they end up, particularly in a small scrotum, can be different. As your scrotum contracts and is not large anyway, the pump is likely to be pushed around. That was certainly not how it was left but there may not be an easy answer due to space".

At no point in my pre-surgical consults  was I advised that a sub-coronal incision could cause issues with pump placement or that a small scrotum could cause pump displacement. At my pre-revision consult, I was not advised that a small scrotum could cause issues with pump placement either.  I have also read many journals of men with small scrotums, none of them had issues with pump placement. I had a penoscrotal incision and went through the trauma of another surgery, only to have a more uncomfortable pump position.

Other Patient Experiences

Being in Australia, we are very limited in options when it comes to penile implant surgeons. I have managed to find about 6 people on FT who used the same surgeon. 2 had sub-optimal results (although I only found out about one after my surgery), and the other 4 had great results. Of all 6, they had penile implant surgery only (No T.E.P). Of the 2 that had sub-optimal results, one had issues with the pump, and the other had a wobbly erection due to (I assume) over 3cm in RTEs and the erection being tilted to the right. The user with too many RTEs went back to the same surgeon, the surgeon advised that "it is what it is" and everything is normal. I can't imagine Dr Eid saying this to a patient, Dr Eid is known to fix wobbly erections due to too many RTEs.

Letter

After my revision, my surgeon was supposed to send a letter advising of the procedures performed to my GP. My GP wanted to be advised of the procedure so we could monitor the incision, ensure no infection was present and heal and resume my normal life. I emailed the surgeon and he advised that the letter had been sent. I called his office a week later, they advised it had been sent. My GP called up their office himself and they advised they will fax it again. I emailed the surgeon and advised I had pain after walking a lot at the airport and wanted to be checked out by my GP and maybe another urologist, he advised the letter has been sent, faxed and if there are issues it is with Australia Post (I didn't know medical professionals post letters, I assumed they were emailed). At this point, I had more pain at the incision site from walking long-periods at the airport (catching a flight back to my state), I needed my GP to check everything was normal.  My GP did not receive the letter until 3 weeks post-revision surgery. By this time, I was emailed the letter by one of the surgeon's staff, along with the operation notes.

This was not a major issue, but I still find it as as bad practice. I feel if the surgeon and his staff had the time to email me, they could have emailed me the letter, even if he was not willing to provide the operation notes straight away. And, in the event that I did have some major issues, we would not have been aware of the procedures performed.

With a procedure like this, I think it's important to be monitored, ensure everything is healing correctly and that no infection is present. It is difficult for your regular doctor to do this when they are not aware of the procedures performed.

Email after revision

About a day after revision surgery, I emailed my surgeon with 9 questions including: when I could gym, is it okay to point my flaccid down, can the bandages be removed on Monday, was there any abnormalities found which could explain the leakage/prostatitis issue (important issue). I stated that when he was talking to me in the hospital, the hospital had given me a lot of pain killers and my memory was a bit fuzzy and I just wanted confirmation.

He replied with "I spoke to you after your surgery, the same evening, and twice the next day, for a total of some 45 minutes explanation. We went through all of these but my answers to your questions are below".

His response seems to indicate that I am hassling him with irrelevant issues. As you know from reading this thread, I have been struggling with leakage pain, pump placement pain and discomfort etc for months. I also had not resumed my everyday life which he was very aware of. I just needed confirmation from him that I could heal and resume my life. And, most importantly, the leakage issue would resolve.

This is a complex procedure and I think it's important to have a surgeon you can email in the future if you have issues. Especially, when other surgeons may not take you on as a patient once you have been operated on by another urologist.  

Auto-inflation

As you guys know, I was struggling with what seemed like auto-inflation. I was never shown how to deflate fully, and had no idea that a fully deflated titan should look flattened, and you should be able to feel the cylinders. When the surgeon deflated me in his office before my revision, he definitely deflated it a lot better than I did. I was in the hospital for an hour and when he came in to check, the device had not inflated much. Although, I do not believe it was fully deflated. I also was not very active for that 1 hour.

I had another urologist in my state deflate me, and when he did, the device inflated more after sitting down.

The surgeon wrote in his letter that he is not convinced auto-inflation is a real issue.

I noticed, after my revision, that the device was deflated very well. Until, I was catching my flight back to my state, this involved a lot of walking and after all the walking, the device definitely inflated a bit on it own.

Currently, I can squeeze with the technique the surgeon showed me (squeeze with the shaft gripped in between palm and apply pressure on the sides). I can get a good deflate, but when I walk around, or after sleeping and waking up, the device definitely inflates more. I know this as I can feel the cylinders when fully deflated, I can also bend the shaft when fully deflated. After an hour, there is some fluid in the cylinders and the shaft is not as malleable.

The surgeon was definitely able to deflate it better than I did, although I still do not believe it was fully deflated. I think it's important to fully deflate the device, Dr Eid states that partial inflation can result in tissue atrophy. Further, a partially inflated titan is uncomfortable, with fluid in the cylinders, the flaccid is heavy, in addition to the already large flaccid of a titan. This results in discomfort.

I squeeze very tightly to get a good deflate, which results in pain. Regardless, eventually, after an hour or after overnight, I get some backfill.

Currently, I do get some backfill. When laying down, the device is more deflated and when standing, the device seems to inflate a bit more, this happens when both inflated and deflated. My only guess is that, due to the graft thickening on the right side, I am not able to deflate it properly as there may not be enough pressure to squeeze it back into the reservoir and some fluid gets stuck in the part of the tubing which is separate to the shaft.

The other explanation could be that the issue is intermittent. There are times when I have gotten less backfill than others.

None of the videos I have seen show a fully deflated titan. Deflation demonstration videos also only show the person holding the deflate valve and doing a gentle squeeze while pointing the penis downwards for 1-2 seconds. Please correct me if I am wrong, but I think that if you have a titan, you know that it requires more effort to achieve full deflation.

I am trying to book in with another urologist, perhaps he will be able to show me how to deflate better. I am certain I am doing everything correctly, and have tried everything from squeezing in different areas, behind the perinium, pressing 1-2 pumps after deflating, pinching at the base etc. No matter what, when I stand up, it fills a bit. Especially after standing/walking for long periods and overnight.

It could be there is some technique to deflating and squeezing that I am not doing as the deflate valve is already difficult to access. Also, the graft thickening does not allow enough pressure from squeezing to allow all the fluid back into the reservoir, perhaps some is stuck.

There is not much I can do. With the above in consideration, if I contact my surgeon, he will probably be annoyed, tell me the issue is "perceived" or that there is nothing he can do or that he already spent time explaining all this to me. If the surgeon was able to deflate it better, then I think the issue is in the way it is being squeezed when deflating. I think this is due to the graft, perhaps the angle etc. There is a guy on FT who has to hold his implant a certain way for the left cylinder to deflate correctly.

I would love an explanation as to why, when the device is inflated, it is girthier when standing. This could be why it seems to auto-fill when standing when deflated too.

Chronic Pain

I have been dealing with pain for six months, it is not bad as before, however it is still there. Currently, I get pain on the right side where the graft has thickened. Close to the frenulum there is pain. The surgeon states in his letter, the following:
"The proximal part of the penile frenulum divided during his circumcision, is tender, and on examination retained stitch, sign of infection or other abnormality".

Additionally, I get random pain in the shaft, anus and upper thighs, as well as the scrotum. Walking/standing for too long can be uncomfortable.

Some pain post leakage/ejaculation, but not as bad as before.

This has really affected my quality of life. I just want to be able to pick my niece n nephew up, run around and dance with my niece, go to the gym, wear tight clothes to my office job etc. Unfortunately, all I can do is wait.

I have no idea if this pain is going to be forever, or if it will subside over time. It has been 6 months since my initial surgery, 6 weeks since the partial revision.

Thoughts about revision surgery regarding pump

It baffles me that a high-volume implant surgeon has done a penoscrotal incision for a revision to fix the pump, and the pump is worse than it previously was. I was careful not to walk much, not to cycle for two weeks etc.

I have read journals where people paid a surgeon, but the surgeon allowed resident urologists or student urologists to perform the surgery. I noticed, my initial procedure and revision required an assistant urologist. This is from the receipt which I paid, and also, my surgeons' comments when they failed to deflate me at the correct time were "***** (assistant on the receipt) was in the operating theatre with us, he could have deflated you earlier".

I am wondering if the surgeon allowed the assistant urologist to perform the surgery and thus, I have these issues. Or, maybe the surgery is complex and sometimes we have these issues, I did go through T.E.P. I still think this should have been explained during the initial consult.

Other implanted guys who went through T.E.P

I recall in my very first consult, I requested if I could talk to other patients who went through T.E.P and/or the implant that were of a similar age. The surgeon advised he would get back to me.

Eventually, I spoke to his staff who advised that this was not possible. I requested if I could talk to someone of any age who had just gone through the implant, later I was advised by his staff that this was not possible.

Another urologist here in my state who was my second choice, advised me himself that he could get younger patients of his to talk to me. So, I don't know why this was not possible with my surgeon.
 
Quality of life

My quality of life has definitely been affected. Regardless of the functionality and cosmetics of the implant, I have regular pain, and standing/sitting for long periods can be uncomfortable. The backfill I get is uncomfortable. Wearing tight clothes and pushing down on the implant causes pain, I don't know why, my only guess is it is due to the graft thickening on the right side and/or some nerves have been damaged which may take time to heal or from not being deflated fully.

I was at my brothers Brazilian Jiu-Jitsu tournament over the weekend, I was standing most of the day. This resulted in pain, but also, by the middle of the day, the device had inflated quite reasonably.

The only thing I can do is try to move on, see if another urologist can show me how to deflate properly or if there is an intermittent issue regarding deflation. As I still have some pain post-ejaculation and post leakage (although not as bad as before), I have held off on any kind of sexual activity for now.

I will probably give it another 2 months of cycling and then attempt to have sex with a girl I'm talking to and see how it goes.  

Cursed Patient

There is study on pubmed pertaining to managing the difficult penile prosthesis patient. This is a snippet of the study (google "cursed patient" to find it):

Contemporary patient and partner satisfaction rates following IPP are 92-100% and 91-95%, respectively. Factors associated with satisfaction include decreased preoperative expectations, favorable female partner sexual function, body mass index ≤30, and absence of Peyronie's disease or prior prostatectomy. Determinants of dissatisfaction include perceived/actual loss of penile length, decreased glanular engorgement, altered erectile/ejaculatory sensation, pain, diminished cosmetic outcome, difficulty with device function, partner dissatisfaction and perception of unnatural sensation, complications, and extent of alternative treatments offered. Personality characteristics which may indicate psychologically challenging IPP patients include obsessive/compulsive tendencies, unrealistic expectations, patients undergoing revision surgery, those seeking multiple surgical opinions, feeling of entitlement, patients in denial of their prior erectile/sexual function and current disease status, or those with other psychiatric disorders. The mnemonic CURSED Patient is presented: "Compulsive/obsessive, Unrealistic, Revision, Surgeon Shopping, Entitled, Denial, and Psychiatric."

I believe my surgeon has grouped me into this category. He believes my issues are perceived, only cosmetic, and that I am obsessive, and my symptoms are exacerbated due to anxiety. It's unfortunate, as, at least if my pump was in a more comfortable position, I could walk around comfortably, go to the gym comfortably etc. I don't think having revision to fix the pump, resulting in it being worse than before is a "perceived issue". I think the issue is real, another urologist can physically feel the pump is in an awkward, uncomfortable position. I don't believe my other issues are a result of obsessiveness or high expectations either, especially, the leakage/post-ejaculatory pain. We get the implant to have a functional sex life again, how do we do that, if we have pain post-ejaculation? Is having surgery to fix your sex-life, then expecting to  be able to orgasm/ejaculate comfortably during sex, too high of an expectation?

I still think, whether the ideology of a cursed patient is true or not, we still deserve to be treated fairly, and our concerns to be taken into consideration. Especially, when your quality of life is affected.

A reminder to anyone out there with severe peyronies, peyronies can make the penile prosthesis much more difficult and it seems there is less patient satisfaction in peyronies cases. If you don't have one of the best surgeons, do all your research and talk to other patients that the doctor has operated on. Remember, the implant surgery is irreversible, if you have issues, there will not be much you can do. If you are younger, you will be dealing with it for many years.

Eid, Clavell, Hakky

All the research and journals I have read seem to indicate that, if you want a good result, your best bet is to go to Eid, Clavell or Hakky. They will not only strive to give you the best functional result, but also the best cosmetic result, and will take all your concerns into consideration. They are also known to fix other surgeons mistakes.

As I explained above, another person who used the same surgeon as me, ended up with over 3cm in RTEs, he advised the surgeon that the erection was too wobbly to use, he could bend it parallel to his legs. The surgeon advised there was nothing wrong with it.

My concerns were brushed aside as well, I now either have to live with it and accept it or try and find another doctor who might take my concerns seriously. If they at least looked at the deflation issues, it would help a lot with daily discomfort.

I was talking to another person recently, and they advised that, if you don't have one of the top surgeons, and end up with issues, you'll just be ignored and brushed aside.  And, sometimes this is because the surgeons themselves don't know or understand what is wrong. That's exactly how I feel.

Conclusion and Final Thoughts

I think my surgeon did the best he could, but I also think I could have been treated better by him and his staff. I think he's about to retire and just isn't as concerned about patient satisfaction. I also think that he should have spent more time advising of the risks involved with T.E.P and grafting. I am also baffled how he made my pump in a more awkward position despite having revision with a penoscrotal incision to fix this issue.

Another thing to consider is, the more surgeries you have, the more scar tissue gets built up. We want to avoid revision as much as possible. So, will the uncomfortable pump hitting and pushing my testicle up constantly plus the other pain/discomfort be lifelong? I don't know. Maybe in a year from now I will opt for surgery to fix it.

The other thing is, what do I do if I continue to have issues or do not heal? What do I do if I come off the anti-inflammatories and anti-biotics soon (6-week course is nearly up) and the leakage issue returns resulting in 4–8-hour pain after peeing, 2 x a week? I don't want to go back to my surgeon as I feel he will just think I am being obsessive or too anxious. The letter in which he stated I was obsessive and penocentric in was sent to the only other two high volume implant surgeons in my state as well. I have been waiting 3 weeks for one of the surgeons in my state to tell me if they can take over my case and teach me how to deflate properly. Will they take me seriously? At this point, I am wondering if they will even respond.

Going to Eid, Hakky or Clavell would be the best thing to do, but just a video consult would cost me approximately $800 Australian. I have already spent 12k for the surgery and 3-4k in airfares and hotels.

I think some of these surgeons don't realise that this a person's life they are dealing with, whatever happens, I will be dealing with it for the next 30+ years, that is a long time. Who knows, maybe in a few months from now, things will improve. One can hope.

I am still going to do all I can to ensure that, if things can improve, they do.

What are you guys thoughts? Let me know what your experience with your surgeon was like.

J







 

[Sonic]

Read the entire post and I will be completely honest with you. I wanted to say this months ago particularly once you had the revision done and the pump was placed in a even worse position that this surgeon has done a horrible job but I did not want to say anything due to the forums rules on slander etc. Now since you have admitted it yourself I can with certainty say that he has done a horrible job with his surgery on you. Not only the fact that he placed the pump in an uncomfortable position but most importantly after a revision placed it in an even worse spot. This is a big red flag. I will not mention the doctors name but I already know who he is.

It is absolutely not by any means normal to have a revision done so soon after being implanted on and really the only possible way for it to happen is for the surgeon to fu@ck up.. Also left you inflated for too long and basically tried to brush of all your concerns with a BS anxiety excuse to cover up his own faults.

The pump placement sounds horrible and I am so sad you have to go through this hopefully it will get better with time and if not then I hope you find another surgeon who can FIX it.

Really hope you get better soon bud.

This really highlights the risks of getting an implant can be quite horrible..

[Stepone]

I agree Sonic,

This is a giant nightmare.
I can't imagine what I would do, but I think contacting an attorney might be a good step. I am not familiar with your area, but here in FL, these attorneys don't charge anything for a consultation and essentially tell you upfront, if they don't win, you don't pay anything.
I know quite a few people that have had implants and experienced no problems.
I have a friend that is a brain surgeon and he sadly told me that he wished more surgeons operated like brain surgeons....and there would be fewer bad surgeries.
He says of course, he can't make any sloppy cuts or just ram something in. Haha
Best wishes
And I am so sorry
StepOne  

[ohnoohno]

I'm sorry you're dealing with this JJ, what a nightmare. All people going through this would want a surgeon that respects their patients concerns and for you not to get that I can only imagine how harsh it is on your mental. I hope some other doctor can pick up the pieces here and you get in good shape soon.

 

[Curvekiller94]

JJ I'm sorry you had to go through all this. But there still are some positives. I think the route is pretty clear to me for you. Obviously this is my opinion only.

I don't know if it was necessarily  that bad (it's not great), but if the leakage stops and pain then it was worth it. I think there are still some positives,I mean it looks much better than it did preimplant. There's at least a chance things improve fingers crossed

I believe the path forward should be as follows:

Let things heal maybe the pain and leakage will go away. Surgery takes a long time to heal keep in mind (not minimizing your concerns just positive vibes). If it gets bad again go back to  the doctors and say what gives what am I supposed to do?

 Something my dad taught me that worked for me (he was a doctor that's how he knew it would work when I needed a prescription renewed and they weren't doing it despite having great successs on adderall for my adhd and kept the same low dosage for years for some unknown reason they didn't refill it ).anyways,  If you believe you aren't being treated unfairly and you need immidiate results. Send your complaints to the doc via phone to receptionist and say we need a better solution I'm still in pain etc, if he ignores you can call and ask the receptionist the following:

"Hey im dealing with an ongoing problem and I don't think it's being addressed properly who can I speak to?"

Tell the guy who runs and owns the office your concerns and ask them how can they address these.

If they brush you off again

You can then call the front desk and say "listen if this situation doesn't get handled and I don't get some kind of resolution I will be issuing a complaint to the Australian Medical Board. I feel no one is taking me seriously and I'm being constantly dismissed." (All countries have a medical board that you can complain to if uk hate being treated unfairly. Having said that not something to abused, but if you need it you need it.)

https://www.betterhealth.vic.gov.au/health/servicesandsupport/doctors-how-to-make-a-complaint

Of course this is if you feel the doctor is ignoring your concerns as a patient.
—————////////////————-//////—————————-
In the meantime
Try your best to get active - maybe start in your house if the gym is too far away or you aren't  feeling comfortable to like physically active doings yoga, push ups, sit ups, lifting weights.

I really like boxing it helps me mentally and physically.  Working out can help nerves get released if something is entrapped or something in general it brings down inflammation  working out. if the nerves  are stuck  it could result in some of the pain you felt.

You'll get through this one way or another bro hang in there. In the end maybe things will just heal up and work out try not to stress deep breathes stay healthy and take care of yourself. I can't imagine the struggle right now you must be having you got this though dawg we're all in this together. You're really strong and I'm pretty sure I speak for everyone youre handling this like a champ hang in there bro.
 

[IwillbeatPD]

Hey J-

I read your post above. Great write up about your experience, and surely that will provide some insight to others on what they could potentially deal with-even if not common.

Just my two cents from a more psychological perspective- I think you've handled this incredibly well and have a great mindset towards a difficult situation. Fortunately you're in a place where we're all facing difficulties (Peyronies Disease). I think it's exactly like you said, just try to carry on with your normal life the best you can, give things a shot with your new dick. Hopefully your dick and the pain gets better over the next 6 months. I'd think long term. If in a year the pain is still bad or you're having issues with your implant I'd consider another surgery personally(from one of the top 3 surgeons). I know you're young and revisions suck, but it's like I always say- I'd rather have 10 years of sex in my 30s and 40s than 10 years in my 60s and 70s.

I'll be praying for you man- keep us posted as you start trying to return to normal life activities. Maybe try to find exercises in the gym that don't cause pain-just getting there would be a good start to get you back in the routine. I'd also go on some dates. Maybe just getting back to the "normal you" will help you feel better.  

[jj21]

Would anyone be able to tell me what this means in layman's terms please:

"The proximal part of the penile frenulum, divided during his circumcision, is tender, and on examination retained stitch, sign of infection or other abnormality."

I have had a lot of chronic pain by my frenulum, this lasted 4 months post implant and now has continued post revision... just looking for answers.

Thanks,
J

[Curvekiller94]

This sentence is describing a medical examination of a specific area of the penis after a circumcision procedure. Here's the breakdown:

1. "The proximal part of the penile frenulum" refers to the part of the frenulum that is closer to the body. The frenulum is a band of tissue located on the underside of the penis, connecting the glans (head of the penis) to the shaft.

2. "Divided during his circumcision" indicates that this part of the frenulum was cut or separated during the circumcision procedure. Circumcision is the surgical removal of the foreskin, which is the skin covering the tip of the penis.

3. "Is tender" suggests that this area is sensitive or painful to touch, which could be due to various reasons, such as inflammation, infection, or normal healing process.

4. "On examination retained stitch" likely means that during a medical examination, a stitch (suture) that was used to close the wound after the circumcision has been found to still be in place. Normally, stitches are either dissolvable or are removed after a wound has healed sufficiently.

5. "Sign of infection or other abnormality" indicates that the medical professional is looking for signs of infection (like redness, swelling, warmth, or discharge) or other abnormalities in this area, but the sentence does not specify whether any such signs were actually observed.

So, in summary, this sentence is describing a situation where a man who has had a circumcision is experiencing tenderness in the part of his penile frenulum that was cut during the procedure, and upon examination, a retained stitch was noted. The healthcare professional is also vigilant for signs of infection or other abnormalities in this area.

[Curvekiller94]

In some cases, the frenulum is partially or completely cut or removed — this is known as a frenulectomy or frenuloplasty. Whether or not the frenulum is supposed to be cut during a circumcision can vary:

1. **Medical Requirement**: For some individuals, cutting the frenulum is medically necessary, such as in cases of a condition called frenulum breve, where the frenulum is too short and restricts the movement of the penis, potentially causing pain.

2. **Surgeon's Technique**: The decision to cut the frenulum can depend on the surgeon's technique and the patient's anatomy. Some surgeons cut the frenulum as a part of the circumcision procedure, while others do not.

3. **Cultural or Religious Practice**: In some cultural or religious circumcision practices, cutting the frenulum is a standard part of the procedure, while in others it is not.

4. **Patient Preference**: In some cases, adult patients who are choosing to undergo circumcision may have a preference about whether the frenulum is cut or not, and they should discuss this with their surgeon ahead of time.

In the situation described, it's not clear whether cutting the proximal part of the penile frenulum was intended or was an accidental part of the circumcision procedure. It would be best for the patient to discuss the specifics of his case with the healthcare professional who performed the circumcision or is providing follow-up care.

-gpt

[jj21]

It would be best for the patient to discuss the specifics of his case with the healthcare professional who performed the circumcision or is providing follow-up care.

-gpt

Curvekiller - Thank you for the detailed post. I should have added that, that paragraph is from my operation notes from my recent revision. I have tried to discuss with my surgeon but he didn't say much at all regarding this, other than that, he gave a shot of corticosteroids (I think), to help with the pain)

My pain at the frenulum has since returned, and I am wondering, if there is a stitch still there, can this cause long-term issues?

Thanks for responding, I am just looking for answers and appreciate it.

Unfortunately, my surgeon didn't say much about it.

J

[Curvekiller94]

J, I'm sorry there are so many hoops dude hang in there check in with the circumcision doc maybe.  unfortunately chatgpt was the best I could do but it sounded like an okay answer. The stitch was removed eventually right?  

[jj21]

The stitch was removed eventually right?  

No, I believe the stitch is still there? The operation notes do not state that he removed the stitch, plus he would have had to do another sub-coronal incision to access it?

Now I am wondering if this will cause long-term issues, and this is why the surgeon kind of just brushed me aside and ignored me.  

[Curvekiller94]

The frenulum is pretty small I think you  may be able to tell if it has been removed

I guess since that was written did you ever go back to that guy?

[Curvekiller94]

In short I don't believe you want a non removable stitch in there

[jj21]

I guess since that was written did you ever go back to that guy?

These are the operation notes from my recent revision 6 weeks ago. Same surgeon that did the revision and the implant, haven't gone back to him.

The notes do not state that the stitch was removed, and he did a penoscrotal incision for the revision, so, he would not be able to access it.

I might try and email him.

Thanks for your support, if I can just get the pain and discomfort to resolve, I can continue with my normal life.

J

[jj21]

The surgeon just replied with the following:

"I thought that area was tender, but not sure if a stitch granuloma or just chronic irritation or inflammation. If still a problem then maybe get someone locally to have a look"

The are does have two small bumps, I guess the only thing to do is wait it out and try and find another urologist. One I had a referral for in my stat is booked out until December, I will have to try and find a new one in my state.  

[jj21]

Curvekiller - Thank you btw, I feel a bit at ease now just having some kind of explanation. Praying this isn't something chronic and will either have a solution or eventually resolve.  

[Sonic]

since frenulum is located on the outside of the penis and not the inside it will not be chronic or permanent believe me. Do not worry about that. Think of it as when you get a wound on your arm or hand. It will get irritated and hurt etc but with time it will heal up perfectly a wound doesn't hurt permanently like that and this will be the same.

If the pain is quite sharp then perhaps contemplate asking a urologist for some cream that could alleviate it? Or just take pain meds.

[jj21]

with time it will heal up perfectly a wound doesn't hurt permanently like that and this will be the same.

Thanks for your suggestion Sonic, I will talk to my GP about some creams that may help.

It's difficult to not imagine that it will be permanent as I have had this issue for the past 4-5 months.

J

[jj21]

Update on a few things

Disclaimer: Sorry for the complaints guys, I really have been wanting to come back with good news, but I am just putting my thoughts out there. I don't want anyone else to have to go through this, and I want all you guys, especially younger guys to be aware of all the risks that these surgeries can pose. The positives and the negatives.

Frenulum Pain

I have had pain by the frenulum, and I can feel two small bumps close by on the right and left side. This pain lasted for about the past 4-5 months. It subsided for a little while after my revision, I assume because the surgeon injected some corticosteroids into the frenulum (if I have understood the operation notes correctly). The issue has since returned.

This is what the surgeon's letter says post-revision regarding this issue:

"The proximal part of the penile frenulum, divided during his circumcision, is tender, and on examination retained stitch, sign of infection or other abnormality."

I recently asked him for clarification and this was his explanation:

"I thought that area was tender, but not sure if a stitch granuloma or just chronic irritation or inflammation. If still a problem then maybe get someone locally to have a look"

I am still looking for answers, the frenulum area is tender, and constantly sore. I am aware of it every day, especially when wearing tight clothes and/or moving around a lot. I am not sure if it's going to be like this for life, if there is a stitch which has not dissolved or some other issue.

I can confirm that this issue has lasted from about 8 weeks postop to now about 26 weeks post op.

It's difficult for me to see a local urologist as, most of them aren't familiar with T.E.P. Further, once one urologist has operated on you, other urologists are reluctant to take you on as their patient. One urologist who I saw previously in my state advised he doesn't have availability until mid December. The other, doesn't want to take me on as his patient as I have been operated on by someone else interstate.

I have to wear loose clothes everywhere, any pushing down on the penis just causes discomfort and pain.

Unsure what to do. Going to Hakky/Eid is a bit out of my budget at the moment. Might book a consult with Hakky or Eid eventually, but I am unsure if they will be able to tell me much without examining me. Just an online video consult will cost almost 1000 Australian dollars.

Erection Angle

Now this is what is strange, when I sleep, my penis naturally is positioned upwards towards my belly. I have noticed that, when I cycle in the morning after waking up, my erection angle is 2 o clock. After wearing clothes during the day, my flaccid gets pushed down, and when I cycle at night, my erection angle is now just below 3 o clock.

I find it strange as, after reading Merrix journal, after 6 weeks he was wearing suits and has a 2 o clock erection angle which wasn't affected by the flaccid being pushed down on.

Not sure why this is. 6 months post implant and keeping my flaccid pointed up for a few hours results in a higher erection angle, keeping my flaccid low results in a lower erection angle. Maybe my crus hasn't healed yet? OR could this be due to another underlying issue.

Gym

I went to the gym in the morning, had to take it very easy and wear loose clothes. By the afternoon I had some pain, I think just need to take it easy or wait it out until I found some kind of solution for these other issues.

Auto -inflation

I don't think I have auto-inflation, I think what is happening is that the graft on the right side has thickened, so, when deflated, I can't get a good squeeze on the right side cylinder. I think this causes some fluid to be stuck which eventually results in backfill after a few hours, or after walking around/being active.

This makes sense why the surgeon was able to deflate it a bit better. Currently, I flatten the shaft when deflating like two vertically flattened straws, then flatten it on the other side like two horizontally flattened straws. I get a good deflate, however, after a few hours it seems to backfill.

It also seems to fill more when standing, and some fluid seems to go back when laying down and pointing the shaft upwards.

Only way to be sure is to get checked out by a urologist who will take these concerns into consideration, which is difficult to find here.

Length

Length is close to pre-op. Atm I am not convinced T.E.P was worth it, however, this could change in a few months.

Girth

Girth is difficult to measure as one side inflates more than the other due to the graft thickening/retracting.

Ejaculation

I have been wanting to try out the device, and have 2 girls that are informed of the implant and are keen but due to ejaculation issues I have held off on it. The problem is that, I have pain during and after ejaculation. The feeling of an orgasm just isn't nice. I expect this to improve over time, it is about 6 weeks post-revision.

Viagra

With viagra, the one side inflating more than the other is less significant, the penis seems to round out a bit and looks and feels much more natural. One thing I was never advised was that, an implant is a cure for E.D, but you may still have to take viagra. I recall in one of my consults with my surgeon, he said that, as my condition progressed to the point that I needed high amounts of viagra, I was a good candidate for an implant. He advised, that with an implant, there would be no need for viagra. I accept that in some cases this may be true, but in some we still need viagra. Without viagra, my penis would be two hard sticks, one inflated and round, and the other a little softer and flat, definitely not comfortable for a vagina.

I accept that I can use viagra for the rest of my life with the implant, but I think people should be aware that, you may still need it, even with the implant. I have read on FT a lot of people still use PDE5s post-implant.

Pump

Pump is the same, kind of twisted, poking my right side scrotum with the has a burning sensation and causes discomfort. Upon reading the notes of my surgeon after revision, there was some fluid on the pump, he advised that he doubts this would be an infection.

This may improve over time. If it doesn't, the only way to fix it is another surgery which may not be worth the risks, scar tissue build up etc.

It is very frustrating that my surgeon, during revision to fix the pump, and with a penoscrotal incision, has managed to leave the pump in a worse place than before.

Can't do much but accept it and see if it's worth a revision in the future. Makes going to the gym, being active and sitting for long periods quite uncomfortable.

Graft issue

Not much I can do about the graft issue I had, if you follow this thread, you know all about it. I am just cycling and seeing what happens.  

The first few weeks after being deflated, my result was great. The girth was great, both sides would inflate fine, length was slowly coming back, even pain was minimal. Then one day, about 2 weeks after being deflated, I started getting pain by the frenulum and eventually my right side wouldn't inflate/deflate as much (graft has thickened/retracted as per surgeons advice). Further, the pump became very awkwardly placed. My guess is that, something went wrong at the incision site by the frenulum and with the graft (maybe, the operation notes don't state which side the graft is).

Was a graft really necessary in my case? I really don't know. I have to get a second opinion. It really doesn't matter now as the only way to fix it, would be to have a sub-coronal incision and immobilize the neurovascular bundle again, which poses too many risks (as per the surgeons advice).

It is a bit frustrating to accept that one side of my implant will inflate nice and thick and round, and the other inflates soft and flat and oval. Further, the right side graft issue seems to have resulted in some E.D, pain and a thicker more uncomfortable flaccid.

Now I have to live with this for the next 30+ years. I am sure I will soon accept it, the harder thing to accept is living with chronic pain for the rest of my life, more below.

Positives

The positive is, if the pain during/after ejaculation subsides, I could probably have a reasonable sex life. The penis, with viagra, rounds out and is close to pre-op length of BPEL 6.5 inch. My pre-peyornies length was around 7-7.2 inches (never really measured, that's just an estimate.

Although, it seems to be more round and girthy in any position other than laying down? Confusing right? At least all other positions would be able to be performed comfortably.

This is a positive from having peyronies, but I still need the pain during/after ejaculation to subside.

Conclusion

I am dealing with chronic pain, the surgeon doesn't know himself what is wrong but admits that it might be a stitch granuloma or chronic inflammation/irritation. Dealing with a malfunctioning implant is one thing, but dealing with chronic pain at 34 which stops you from living your life, is quite difficult. Having constant pain in your genitals which stops you from going to the gym, wearing tight clothes, having a social life, picking up your niece and nephew, sitting down for long periods, really takes a toll on you.

I am looking back and dreaming about the days that I had peyronies BUT I could at least go to the gym comfortably, I could run, jog, walk around, pick up my niece and nephew and dance with them. I didn't have chronic pain, I could sleep comfortably, I had a social life, I could stand for long periods without discomfort.

I really just want my life back, not even concerned about sex anymore. If I could just solve the pain and discomfort, I can at least resume my normal life. I can worry about a sex life later on, or hey, if I have to give up sex but can walk around and sit and gym comfortably, so be it.

I am really thinking about what Dr Eid always says, that the implant itself is the best solution. He doesn't believe in T.E.P etc and other procedures, and I can see why, when things go wrong; the repercussions are lifelong and not worth the risks to fix them.

There is a saying that, "whatever happens to you in your life, accept it as the will of God (or higher power, the universe etc whatever you believe in) and that is the best thing for you, and no body is ever going to take away from you, snatch away from you what you really deserve, and whether you get something or not, just keep working hard"

All I can do is, accept it, work hard on other goals, eventually see Eid or Hakky for clarification.

Appreciate advice and support from you guy as always, and always here for any of you guys if you require support.

J



 

[Sonic]

Thanks for your suggestion Sonic, I will talk to my GP about some creams that may help.

It's difficult to not imagine that it will be permanent as I have had this issue for the past 4-5 months.

J

I did not know you have had the issue for that long. I honestly have no idea what it might be then. Even when people rip their frenulum during agressive sex by 4-5 months it will have healed. This sounds incredibly strange. I think the TEP and circumcision was overkill, 3 procedures in one surgery that's like asking for too much problems.

You need to try get hold of a urologist who can look these things up. It is not normal to have pain for so long. I feel like anything I say here is useless because it doesn't help. I just keep repeating myself but I really hope it gets better soon. Keep your head up brother!

[jj21]

Eid, Hakky or Clavell.

Hey guys,

As you know, I have issues with the graft retracting, pain by the frenulum (possible stitch granuloma, chronic irritation or inflammation).

In your opinion, which doc would be best to consult with regarding these issues? I know Dr Eid uses Grafts, and Dr Hakky does sub-coronal incisions which would require circumcision, not sure about Clavell.

I am in Australia, and a consult with either, will cost me almost 1000 Australian dollars.

Thanks,
J

[jj21]

I just noticed that at the bottom of the pump and also to the right, the scrotal skin is stuck to it, almost like it has been glued.

Any idea what this is or if it can be fixed without surgery?

This could be the cause to my pump displacement post -revision

J

[Hawk]

JJ, I don't want to alarm you, but generally speaking, the pump adhering to the skin can be a sign of infection and is one indicator Dr Eid made me aware of.  I am not saying that is the case in all instances or with your particular case.  I would however report it to your surgeon as soon as possible.

[jj21]

the pump adhering to the skin can be a sign of infection

Thanks Hawk, I don't think it is an infection as I have done all the tests for infection, I was advised that even with an infection on the device (not septic), red blood cell count would be very high. I might talk to my GP again and double check.

If you get a chance read through the new posts on this journal, you'll find that I haven't had the best experiences with my surgeon. I am in the process of trying to find a new one who will take my concerns into consideration.

I would really value your opinion on my experiences when you get some time to read through them.

Thanks for your support,
J

[jj21]

You actually got me thinking Hawk, maybe it is an infection, that would explain my chronic symptoms. The surgeon also stated the following in his letter:

"The proximal part of the penile frenulum, divided during his circumcision, is tender, and on examination retained stitch, sign of infection or other abnormality."

Could indicate infection by the frenulum or incision site maybe, that's where I have chronic pain.

Just emailed Hakky's office back and booking a video consult with him. $546 USD, about $850 Australian. Trying to see my GP and a new surgeon here for a physical examination.

I think the only thing I can do is save up and try and see Hakky or Eid. Get tests don't hear to ensure there is no infection.

I'm just tired of these symptoms, confused, and looking for answers.

J

 

[jj21]

Hey guys,

Just tried to have sex, lasted about 20-30m, basic missionary, side to side, and girl on top position.

She couldn't tell the difference, it felt natural but also different, hard but good.

We weren't really very rough but here is the worrying part, I have since been in quite excruciating pain, it feels like someone smashed my shaft with a hammer in all different areas. The tips are also burning, my perinium and scrotum is just sore and achy. Very similar to the pain I use to have when I had the leakage issue.

I just took some codeine, if the pain doesn't subside soon, I will be going to emergency.

I think the only thing I can do now is save up around 40k Australian and go to the USA to see Hakky or Eid for a revision.

J

[Sonic]

but here is the worrying part, I have since been in quite excruciating pain, it feels like someone smashed my shaft with a hammer in all different areas. The tips are also burning, my perinium and scrotum is just sore and achy. Very similar to the pain I use to have when I had the leakage issue.

Sounds absolutely terrible, so sorry you have to go through this.

[Hawk]

J,

I do not like having this conversation to add to your stress, but I think it is important for your long-term good, so I feel forced to do it.  Just to clarify, it is white blood cells that increase with infection, not red blood cells.  Keep in mind the following is just my unprofessional and best understanding, and I can be wrong.  I also include some direct quotes to me by Dr. Eid.

As I understand it, the reason antibiotics never resolve an implant infection is that the area walls itself off.  This walling off might also prevent an immediate significant rise in white blood cells.  I am not sure about that.

According to Dr. Eid, infections "always require removal of the implant."  That means IF you have an infection, you do not have time to save money to come to the U.S.

During one conversation, I told Dr. Eid that some say you should pull on the pump during recovery to keep it from adhering to the scrotum wall.  It is the only time he has ever been so blunt in a conversation with me.  He said, "That is utter BS!  If the pump adheres to the scrotum wall, that indicates there is an infection." Dr. Eid went on to say that "an infection always manifests in the pump area...and that... the pump is the bellwether for IPP infections."  That means the pump is the leading indicator in all cases.  He further explained, "The first indications of an infection would be that you can no longer clearly feel the details of the pump." He said " the pump becomes coated in film or biomass of infection that obscures the details."

When I press my fingernail against the scrotum and run the skin over the pump bulb, I can feel at least some of the ridges of the concentric circles that go around the Titan pump bulb.  I can also clearly feel the raised area over the pump release button.  I use this reference to keep track of whether the details remain discernable.

I hate that you are having any of these issues, but I think you need to find an IPP surgeon in Australia who will see you in the very near future. Hopefully, this is NOT an infection but rather a minor blip on your road to a revision, but in the worst-case scenario, you do not want to wait down the road and have an infection reach an emergency stage and have a doctor not of your choosing removing an implant to irradicate infection.

[Trapper]

I think the only thing I can do now is save up around 40k Australian and go to the USA to see Hakky or Eid for a revision.

J

Hey man, I hope your pain improves soon! These issues sound extremely frustrating. Regarding the 40k Australian can you get a loan? Your physical and mental health are more important than your financial health, your earning potential is greatly reduced if you have chronic pain, depression, and stress even if you must pay interest on the loan I would take care of your health first in my opinion.