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

[jj21]

Might have some good news

1. Spoke to the nurse, she advised that auto-inflation is rare and it's usually fluid left in the cylinders behind the scrotum. I used Hawk's trick of pinching the base and pressing behind the scrotum, I also pointed my penis down for this. Woke up this morning and there wasn't much auto-inflation at all. My penis was comfortably flaccid. Fingers crossed this is permanent.

2. I have not had any episodes of major pain post leakage. Last few weeks I ended up in emergency twice after going to the bathroom, seeing leakage and then ending up in excruciating pain. I have not had any leakage at all the past week. Fingers crossed it was prostatitis and the colcicine which my GP gave is working.

3. Noticed a little bit of length gain as well. Will do some pics when I am up for it.

At this rate, I may be able to bank sperm, start TRT and get on with my life.

J

[Stepone]

Great news.
Glad to hear improvements are on the way. Stay strong and keep on pumping.
StepOne  

[jj21]

Had a few issues:

1. As per the pic attached, no matter how much I deflate (have tried taping it, squeezing perinium, holding it squeezed for a minute, pressing pump twice), it reverts to this level of inflation. I have also had a urologist deflate me properly, it was great, but after 10-60 minutes, it always reverts to this level of deflation. This is uncomfortable and sometimes painful. It is almost as though the left side is deflating more than the right.

2. At the bae of the penis I can feel some kind of tubing?

3. The pump has positioned into a very uncomfortable angle, the deflate valve is sort of horizontal and the pump is pointing up with some tubing or something poking the scrotum.

On a positive note, I have not had any secretions/leakage which resulted in excruciating pain. This has been great. Tomorrow, I have a fertility test anad I will have to ejaculate, so I will see if there is pain after ejaculation.

J

[jj21]

Update:

I had to masturbate to bank sperm this morning, I do have some pain, mostly in the tips. It's not as bad as before, been two hours and it is still there. Seems to be very slowly subsiding.

 

[Curvekiller94]

Glad to hear things are headed in the right direction I'm sorry it's been a long haul. I don't have enough knowledge to comment about the Inflation of the left cylinder  

[jj21]

Can anyone explain what this bulge is? It's causing a dent which makes my inflated penis tilt to the right.

Majority pain is on the left side, down to my perinium too.

Any advice is much appreciated.

J

[jj21]

Hey,

I don't know what happned but this mornign I went to pee, had some pain. Wasn't too bad. 15m later went to the bathroom (#2), had some leakage/secretions after. Since then I have been in excruciating pain, glans are burning, stabbing pain throughout the shaft, scrotum aches, perinium and anus is sore. This is to the point I cannot walk.

It's been one hour, I have taken paracetamol and ibuprofen, no difference. This use to happen before, when I would have leakage but I thought it had improved with the prostatitis medication.

I dont know what to do, if I go to emergency, they will just provide pain killers, if I see a urologist here, he will just want me to go back to the urologist interstate who did the surgery (who is on holiday).

I am going to take some stronger pain killers and wait it out.

If this isn't due to prostatitis then has anyone any idea what this could be? I have done the tests the urine and blood tests again to check for infection, I will have the results on Monday.

Anyone have any idea what this could be? I am really struggling here.

J

[ohnoohno]

I have absolutely no idea unfortunately but I'm sending you prayers in good health that it will all resolve for you soon. Sorry to hear you're going through this. You'll come out on the other side fit and healthy eventually.  

[Sonic]

These latest posts are so sad, it really sounds like you are going through a nightmare. I feel like I have repeated myself so many times but I really hope they fix the issue soon it sounds awful that the waiting time is so long.

[Stepone]

So, everyone's penis recovery is different as is everyone's penis appearance.
I am sorry for all you have been through.
I definitely think you are having fluids being pushed back into your penis from the reservoir. So I wonder if the reservoir is being squashed by the surrounding tissues? I don't know, but I do know that I too sometimes will have fluid flow back into my penis when I have not correctly locked the pump.
I have always had this problem, but in my view, the positives outweigh the negatives.
Sometimes I think I have it locked and an hour later I can feel my penis has filled a little.
So perhaps we both have leaky pumps?
But my penis only fills enough for me to notice, but not bad enough that a little rearranging of it in my pants can't hurt.
I always wear my penis in my jockey shorts to the right, so it's not a big deal. But if you wear your penis facing down, I can understand that could be a problem.
I too can feel tubes around my penis base. I just accept it, right or wrong, it is what it is.
I think our penises are fairly similar, so I don't see any problems.
My pump too felt awkward, but by month 8, it seemed to find its place.
....
Just saw your latest post on pain.
I had a UTI that produced same problems. I wasn't drinking enough liquids and I got a UTI.
Last time I had a UTI, based on my symptoms, they gave me a stronger antibiotic which after 2 days cured the pain.
They called me 3 days later and said yes, I had a UTI and continue taking the meds for 7 more days.
Perhaps you should call the urgent care and ask for an antibiotic as you can't take the pain?
Big hugs and I hope you get some relief soon.
StepOne  

[Gap63]

What a nightmare JJ, I have nothing to add except my fingers are crossed they find the cause of the problem and get it rectified.


Also I would of thought your surgeon would want to know the issues you are having, even if he is on holidays

[jj21]

Thanks guys, I received the blood test results and urine test results. No infection, no UTI. White blood cell count is normal.

My prostate was inflamed, and doc says that the penis being warm is a sign of inflammation.

Not sure how/why I've had this result, it seems to be uncommon. As I had a sub-coronal incision, pump placement is difficult. Surgeon can fix that, and the auto-inflation with a basic revision. However, the extreme pain post leakage is stil a mystery.

Have started taking slow release naproxen (anti-inflammatory) as well as colchicine. It's possible at times the prostate is being inflamed and secrets pre-ejaculat causing pain. It's also possible there has been some nerve damage.

One thing is really like to know if anyone can comment on is, my left side of the penis seems to be thicker and rounded and the right seems to be flat. Almost like the left side engorges and inflates more, the left cylinder also seems to deflate more. Perhaps this is a defect? . The pump id also kind of twisted in the scrotum, not sure if that would have any affect on the cylinders.

I'm just waiting it out for now until I can see my surgeon in July.

Appreciate the support as always.  

[jj21]

Update

I have managed to get an appointment with my original surgeon for the 26th June with a possible revision surgery on the 27th June.

I would like to ask members here if they have ever come across the following issue:

When laying down and inflated (penis pointed up), my right cylinder doesn't seem to inflate as much, it is flatter and my left cylinder is hard, round and more inflated. When standing, both cylinders are hard and round.

The same thing happens when deflated, if I point my deflated penis up, there is less fluid in the right side of my flaccid, if I stand up, it seems to inflate a bit.

Any idea what could be happening?

J

[Curvekiller94]

Jj I'm so sorry this is still hurting you. I still tend to think when the revision is done you will no longer have the pain you're experiencing. Great news you don't have an infection. I noticed not many people were replying so I took the symptoms (anonymously without screennames) and entered it into chat gpt. This is what it told me about your symptoms keep in mind this is not a mes professional but has been shown to be usually right
(Not positively right)

Chat gpt says :
Based on the information provided, the issue seems to be related to the inflation and deflation of one cylinder of the IPP. This could indeed indicate a possible cylinder malfunction or leakage (Option 1). However, this is purely speculative based on the information given and should not be taken as a definitive diagnosis. It's essential to convey all symptoms accurately to the physician, who can then make a comprehensive assessment. They may want to investigate all potential causes, which could include the other options as well.

Key symptoms of a cylinder malfunction or leakage in an inflatable penile prosthesis (IPP) may include:

1. Asymmetric inflation: One side of the penis may not become as firm as the other side during inflation, which is the symptom you've described.

2. Partial or complete inability to maintain an erection: If one or both of the cylinders are malfunctioning or leaking, the device may not be able to maintain an erection as it should.

3. Visible changes: Depending on the degree and location of the malfunction, there may be visible changes such as an abnormal bend or curvature to the penis, or a length discrepancy between the two sides.

4. Discomfort or pain: While not always present, some men may experience discomfort or pain, particularly during inflation or sexual activity.

Please remember, these are potential symptoms and it is essential that the person experiencing these symptoms communicate them clearly to their doctor for an accurate diagnosis and treatment plan.

 



 

[jj21]

CurveKiller - I really appreciate you taking the time out to investigate the symptoms. It does seem likeone side is malfunctioning, the right side just does not inflate or deflate as much as the left.

My appointment to see the surgeon is 26th June, hopefully I will get some answers.

Thanks again,
J

[Stepone]

Jj21,
I am sorry you have to go through this. I read all your posts and it seems like each new post has had a new symptom, except for the pain which has been there from the beginning.
I am wondering if the pain was being caused by a leaking system or were they unrelated.
It will be interesting to hear the final results.
Stay in touch and stay safe.
StepOne  

[jj21]

Any idea what this bulge is? I can feel two tubes in there or perhaps one tube and a bundled up cylinder?

It straightens out a bit when inflated.

I have had a lot of issues and am just collecting as much information as I can for when I see my surgeon next week.

Any advice is appreciated.

J

[Stepone]

I can feel tubing in a similar slight bulge in the same area.
So when you inflate totally, is this the same Side that does or does not inflate all the way?
If this is the same side, maybe it is the problem cylinder.
Stay safe and be sure to number all your concerns when you meet with surgeon, so you don't miss anything.
Hugs buddy, hang in there
StepOne  

[jj21]

So when you inflate totally, is this the same Side that does or does not inflate all the way?
If this is the same side, maybe it is the problem cylinder.

Thanks StepOne for your continuous support, it really helps.

It is the opposite side that doesn't deflate/inflate fully. Strange isn't it. Left side deflates/inflates well but has a bulge, right side doesn't inflate/deflate properly.

If you have the same thing, then maybe it is normal.

I will have more answers next week when I see my surgeon.

J

[jj21]

Recently my pump has twisted, the deflate valve is lower than the pump an is behind it, to the right of my scrotum, the pump is arched high up and to the left of the scrotum. The deflate valve and pump are almost horizontal in my scrotum, twisted to the left (hope that makes sense).

Could this possibly be the cause of pain? Could this be the reason why my left cylinder inflates/deflates more? Is it possible for the tubing to have twisted causing issues with the cylinders?

J

[Stepone]

Jj21
I think anything is possible of course.
I recall my pump shifting. At first it was so tight against my penis I could barely grab it. Now over time, it shifted around and is so much more comfortable.
I don't recall the actual time it became more comfortable, but I am thinking it could have been about 8 months and to this day, it has become more and more comfortable.
So yes, this could be attributing to some of your pain.
I would suggest reading some of our journals and it might help you understand the process.
StepOne  

[ohnoohno]

JJ, did the implant surgery cost you in Australia as an Australian citizen?

I'm dual citizenship with United Kingdom and New Zealand, I know by this I can also live in Australia without visas so wondering if surgery would be free also. Maybe not it seems.

Trying to find the best surgeons possible who specialise in Peyronies and Implants in NZ and Aus currently.

[jj21]

StepOne - Thanks,  my surgeon advised that, due to the sub-coronal incision and haematoma I had, the pump most likely will not improve. Due for revision next week.

ohnoohno - I am an Australian Citizen, I went with Chris Love who I believe would be the best in Australia. It cost me roughly 11k out of pocket, that included the implant + TEP + hospital and anesthesia fees. The implant itself is about 7k. This all includes the amount paid by my private health insurance. I found 3 really good implant surgeons in Australia, 2 in QLD and 1 in VIC. 2 of which also offer the T.E.P procedure.

I have heard Dr Ralph is good in London, and I think there was a member on FT who got his whole surgery covered by the NHS, there was just a long waiting period.

J

[ohnoohno]

Thanks JJ! 11K AUS dollars isn't that bad tbf! I actually came across Chris Love when googling about yesterday, good to know.

I'm in the process of trying to get in touch with Ralph/NHS as I'm currently abroad but maybe this will be my route.

Hope you're doing better.

[jj21]

Just came interstate and had my appointment with my doctor.

He advised the following:

- he is not sure on why I have pain after leakage;
- the pump is very awkwardly positioned;
- it is possible the reservoir needs to be moved;
- the auto-inflation may be from the reservoir being pushed against;
- the reason the left side inflates and deflates more may be due to the grafting.

I am currently in the hospital staying overnight to be operated for a revision tomorrow morning. The surgeon is unsure what exactly he will do, he is going to decide on the day. He will take the pump and cylinders out, check for infection etc. He may move the reservoir and take out some fluid. He will do a cystoscopy and also look inside for any abnormalities, he may then put the same device in or put a new one in, he will also remove some of the scrotal webbing.

J

[Trapper]

Good luck JJ21, Hoping for you to have a great outcome!

[Stepone]

Jj21, big prayers for you!
StepOne  

[Sonic]

Sorry you have to do a revision but fingers crossed it turns out all good this time.

Really sorry for your complications here. You are one tough bastard, you will win in the end.

[ohnoohno]

Good luck JJ

[Pfract]

Fingers crossed you get it good this time. You have been through a lot. Good luck jj!

[jj21]

Thanks guys, I am swollen currently, and fully deflated. Once the swelling goes down I will try to inflate and see how everything is. The pump is in a really good position now.
 

[Stepone]

Jj21
So what did the surgeon do?
We are all curious.
Please update your signature to include what was done.
What instructions did you receive.
Thanks for keeping us informed.
StepOne  

[jj21]

Update

10 days post revision

I believe the surgeon fixed the pump (it is now placed low and a bit more comfortable), performed the scrotal web procedure, and removed 10ml from the reservoir. He may have pulled everything out and did a washout - I am not yet sure.

One of the main issues I had was that the left side seems to inflate more than the right. When inflated, I can feel a strong cylinder on the left, it is round. On the right, as we move up towards the top of the penis, it is oval, flat and a bit soft. When cycling, it seems as  though the left side is stretching, I can only feel the stretch on the left side. The surgeon advised it is possibly that the graft on the right side has contracted, he said he will try to contract it open during the surgery but this may be something that I just have to live with. Has anyone ever come across anything like this?

A part of me is really wondering if I had gone just the implant surgery, whether I would have avoided all these issues.

I am grateful for any feedback or advice.

J

[Stepone]

Jj21,

Thanks for the update. I have no knowledge of your plight concerning the tubes.
By the way please note in your signature the date of revision and also the doctor's name for each surgery.
I have one question for now.
When you pump, do both tubes feel the same length and the same thickness?
Than you and I hope this all works out. Your case is definitely one for the books, unfortunately.
StepOne  

[jj21]

When you pump, do both tubes feel the same length and the same thickness?

Thanks for your reply. When pumped at a comfortable level or fully pumped, the length is the same, however, right side is a bit more oval and flat, left side is round and full. It's hard to explain, but, when pumped, I can feel a cylindrical rod on the left side, on the right I cannot.

This causes a bit of a twist at times, almost like the left side inflates more than the right.

 

[jj21]

Update

I have mostly been resting, just 11 days post revision. It seems like the pump has taken the same place as pre-surgery, the deflate valve is poking my right side scrotum which causes friction n some pain/discomfort when walking.  

Will cycle next week. The cut is on the scrotum this time (first surgery was sub-coronal).

I think I just need to rest, recover, and time will tell the rest.

J

[jj21]

Just to add:

The pain I use to have after leakage has completely stopped. I have had leakage but no pain.

This could be due to the surgeon taking out 10ml from the reservoir, or it could be from the medication he has put me on for prostatitis.  

[Stepone]

 Jj21, thanks for your posts.
I have never felt my cylinders to see what they feel like when inflated.
Next time I inflate I will feel them Out and let you know.
Stay well and I am glad things are improving. Remember this is a slow process.
StepOne
 

[Pfract]

jj21... i am not sure you are in a better place or not, after your revision surgery? I hope you are.  

[jj21]

Appreciate the advice from you guys.

I think I just need to give it time, it's 5 months post-surgery and 2 weeks post-revision. I think at 9-12 months will be a better indication of how things are.

I think one thing we need to stop doing in the beginning, especially us younger guys, is comparing our implanted penis to pre-peyronies. And, comparing our healing/result to other journals. Every journey is different and time will tell what result the surgery brings.

We need to remember that, an implanted penis even with some minor issues, is still better than a peyronies penis which is not function for sex at all. Also, sex is a small part of life, we must remember that women are usually accepting of these issues (especially as they get older) and there is so much more to life than sex.

At the very worst, if you have to accept a life without sex or intercourse, so be it. There is much more to life.

As an update (5 months post-surgery and 2 weeks post-revision:

I am starting to feel more comfortable walking around, the flaccid is still deflated (I have not cycled after my revision surgery yet). Will start cycling tomorrow as that will be exactly 2 weeks post-revision. Pain is subsiding and feeling/sensation is returning.

I have been pulling down on the pump about 25 - 30 times a day, 5 sec pulls. The pump is a little awkwardly placed atm again.

The incision in the scrotum is healing, peno-scrotal incision is not too bad. I imagine my journey after partial revision would be similar to having a revision surgery as the surgeon pulled the device out, did a wash out and put it back in. In saying this, the revision is not too bad, almost 2 weeks and I am walking around comfortably. Future revisions shouldn't be too bad at all.

Haven't cycled to see whether the left side inflates more than the right, if it does, I may just have to live with it.

J

[Stepone]

Jj21,
It sounds like you have moved to a happier place. The reason I always suggest people to read journals of individuals that have gone through the implant process......is exactly because of the post you made.
There is a lot of psychological growth when you receive an implant.
Thanks for your post, take your time and things will progress.
It's unfortunate you had to go through two surgeries.
By the way, I would go slow on the pump pulling. As swelling goes down and things heal, the pump will gradually feel more comfortable and not so tight against the penis.
I wish you well and thanks for your posts.
StepOne
 

[ohnoohno]

Appreciate all the updates JJ. Hope all resolves for you soon and you can be healthy.

I agree what you mention about as long as things are better with implant than they were with peyronies its an improvement.  

[jj21]

Hey guys,

Cycled today, the pump is different, I think it's just positioned differently. As for the inflated look, seems like girth has improved, some more dents prevalent which I am sure will fill out with time. It is very oval atm but I am only 2 weeks post-revision, it still has a good feel and look to it.

The deflate valve is kind of twisted, so it is horizontal, makes deflating a bit tricky, especially with a healing penoscrotal incision. However, no major issues. Anyone else have this?

I am glad everything is going smoothly so far. Probably will not update for a while.

Always here if anyone needs help.

J

[jj21]

Hey guys,

The deflate button is flat, horizontally sitting on the bottom of my scrotum, just below and slightly underneath the pump. Reaching it and then holding it to deflate is very tricky and requires two hands most times.

The surgeon advised that my scrotum is small and there is no easy answer, I can try and manipulate it with my hands. I am guessing this would not be worth another surgery.

My only other option is not to cycle/use the device, or limit usage so that I do not risk not being able to deflate.

Any suggestions?

J

[Stepone]

Jj21
Here is a suggestion you need to do.
READ THE JOURNALS OF OTHERS ON HERE.

You will find, most of us had difficulty with the pump. Finding the button, etc.

You just had surgery, it will take weeks and months for this area to calm down.

Your balls have a third ball(the pump) in your ball sac. Give them some time to get acquainted. Lol

StepOne  

[Sonic]

Man I'm sorry you had to go through all this BS J, just popped into the thread and noticed you have now had your revision. If I have not misread I take it you still have some issues but situation is overall better now?

Let's see in around 2 months where you are at. I hope it goes as good as possible now.

[GaussRifle]

I don't know if you have water safe stitches but I remember Hawk always emphasized on trying to use and find buttons submerged in a tub with warm water. You want to be warm and your ball sack should expand too.  

[jj21]

Hey guys,

Just going to add the following then I think I am going to leave and not think about the implant for a while:

- the pump is awkwardly placed, it is horizontal and flat behind and lower than the scrotum. This makes deflating very difficult. It's in a worse position than before my revision. Surgeon says there is no easy answer, I have a small scrotum and I can try manipulate it with my hand. Its obviously not worth another surgery but the fact that it's worse now than before my revision is a bit frustrating.

- in the operating notes/letter to my GP, the surgeon stated that when he pulled out the pump, there was some fluid on it. He says he doubts this was an infection and he has sent it for testing (haven't heard from him). But, this could be the reason to all my past pain and leakage, I really don't know.

- the left side still inflates more than the right, this is a bit uncomfortable and I can feel more of a stretch on the left side. Surgeon advised this is because the graft on the right has contracted. It may improve with cycling otherwise, might just have to live with it.

I am mixed on starting VED, I want to start VED to see if I can get the right side to stretch and have a more comfortable inflated penis. But, I am not sure if the risks are worth it.

My final thoughts are, if you can afford to see the best, which in my opinion is Dr Eid, Dr Hakky and Dr Clavell - go for it. I think other doctors just prioritize getting you functional, after that if you have issues, they don't really take them into consideration.

I am just going to leave things be and see where I am at in a month or two.

Always here if anyone requires support.

J

[Stepone]

Jj21,
I can't imagine what you are going through.
Hopefully as time progresses the pump area will relax and it will be more comfortable.
I have a small scrotum and small testicles, my doc never said anything about that causing a problem.
I would suggest calling the manufacturer. I don't recall what country you live in, but I seem to remember from reading other men's journals that a few have contacted Coloplast and have gotten good help.


Could you place the name of doctor(s) for your surgeries.

StepOne  

[Curvekiller94]

J I'm very proud of you for how you are handling this. I know it isn't easy but you are handling this right. Hang in there man I have faith things will get better for you.

Curve