Implant + TEP procedure Journal - 34yr old Australian

[aussiePeyronies]

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

[raband]

Hey mate I feel for you.
Sounds like youve been through alot and it pisses me off when I hear when doctors down play the problems you are having.
I spoke to the surgeon that performed your implant but decided that a trip to Melbourne from Sydney could lead to more complications that what its worth.
Unfortunately Australia does not have many high volume implant surgeons especially NSW.
I wish you luck and hopefully better outcomes moving forward.

[España1980]

hello aussie, that note in which the surgeon describes your personality makes me terribly angry, it seems that he doesn't have penis problems like you do. They did that to me too, they sent me an ultrasound where it said, "I request an ultrasound, patient with anxiety who says fibrosis is noticeable." does it say notice? but Mr. Doctor, if you are touching the fibrosis with your fingers and the man who does the ultrasound does not have to know that I have anxiety. I believe that when doctors have this attitude it is because they do not know how to solve problems and they do not want to admit their mistakes or admit that they do not know more about the subject. And of course, since you have anxiety, that is your excuse, that you are penocentric. we would have to see him for so many months without being able to lead a normal life. On the other hand, Australian would tell you not to count your recovery from the first surgery, count from the second surgery, it will be better for your mind. You've had two surgeries and you're starting to recover from the second. I believe that with time you will recover your normal life and those problems that you have will be solved when your body heals and you cycle regularly. I hope and wish because you are a warrior. cheer up friend

[aussiePeyronies]

hello aussie, that note in which the surgeon describes your personality makes me terribly angry, it seems that he doesn't have penis problems like you do. They did that to me too, they sent me an ultrasound where it said, "I request an ultrasound, patient with anxiety who says fibrosis is noticeable." does it say notice? but Mr. Doctor, if you are touching the fibrosis with your fingers and the man who does the ultrasound does not have to know that I have anxiety. I believe that when doctors have this attitude it is because they do not know how to solve problems and they do not want to admit their mistakes or admit that they do not know more about the subject. And of course, since you have anxiety, that is your excuse, that you are penocentric. we would have to see him for so many months without being able to lead a normal life. On the other hand, Australian would tell you not to count your recovery from the first surgery, count from the second surgery, it will be better for your mind. You've had two surgeries and you're starting to recover from the second. I believe that with time you will recover your normal life and those problems that you have will be solved when your body heals and you cycle regularly. I hope and wish because you are a warrior. cheer up friend

Thanks Espana, I appreciate the support.

It is a shame that we have to go through such things, and be almost discriminated against due to having anxiety... We go to a doctor who specialises in penises, to heal our penis, only to be called penocentric when there are some issues?

I think we should all recognise that, if you don't have access to Eid, Hakky, or Clavell, surgery can be hit or miss. And, if you end up with issues, you may get labelled as obsessive or ignored.

J

[TwoStep]

I’m sorry to hear about your issues.

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.

I think we should all recognise that, if you don't have access to Eid, Hakky, or Clavell, surgery can be hit or miss. And, if you end up with issues, you may get labelled as obsessive or ignored.

J

These three may be good but it seems like you’re putting them on a pedestal based on hearsay and a bit of advertising

[Gt1956]

I’m sorry to hear about your issues.

I think we should all recognise that, if you don't have access to Eid, Hakky, or Clavell, surgery can be hit or miss. And, if you end up with issues, you may get labelled as obsessive or ignored.
J

These three may be good but it seems like you’re putting them on a pedestal based on hearsay

If you take his comment in the context that he does not live in North America nor in Europe. Finding a good yet alone a great dr in many parts of the world is a big challenge.

[aussiePeyronies]

I’m sorry to hear about your issues.

I think we should all recognise that, if you don't have access to Eid, Hakky, or Clavell, surgery can be hit or miss. And, if you end up with issues, you may get labelled as obsessive or ignored.
J

These three may be good but it seems like you’re putting them on a pedestal based on hearsay

If you take his comment in the context that he does not live in North America nor in Europe. Finding a good yet alone a great dr in many parts of the world is a big challenge.

That's exactly right. We are very limited here for penile implant surgeons, and with complex cases involving peyronies etc, expecting a good outcome can be surgeon dependent.

[aussiePeyronies]

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

[aussiePeyronies]

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

[atul21]

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

Some pain and soreness after first time sex is normal. But from what you describe, it seems like you are in a considerable amount of pain. Have you completely deflated yourself? Try take a hot shower as well.

I really hope you feel better soon. You have been through a lot. My best wishes and prayers.