Bob’s implant journal

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Bobinlondon

First a big thank you to Hawk and Stepone who have been kind enough to talk to me on the phone about implant issues.  Thanks guys, it has really made a difference to talk to a human who has gone through it.

Secondly, I want to apologise for not contributing more to the forum over the years.  The situation was that I was pretty determined to beat Peyronie's without surgery but after trying so many things and discovering that none seemed to make any difference I got a bit dejected and disappointed and lost my energy for contributing or even reading the forum.

I hope to make up for it in some way by journaling my way through this implant. If anybody has any questions or ideas on how to make it more useful, please let me know.

A bit about me 68 years old, steady relationship, desk-bound job.  Pretty fit I think.  No other major issues apart from this.  I have been struggling with Peyronie's disease for about 7 years now

It started off about 6 years ago with a lump on my penis and a bit of a bend.  The doctor did not really diagnose it so I had to keep pushing to eventually see a urologist who diagnosed Peyronie's.  I think I have tried most of the common remedies, VED, Restorex, diets, coaching, vitamins, Pentox, Thackers mixture, Chinese medicine, and probably a few other things.  

All have been very disappointing and some expensive.

At various times I considered a Nesbit operation but got put off by the idea of losing length when I was already suffering with ED.  While I used drugs to help after a while it seemed medicines like Viagra and Cialis were giving me side effects and the Peyronie's and ED were getting worse so that did not seem to be an option.  Over the last couple of years I started thinking about an implant.

Fortunately, I have a very accommodating girlfriend who has been a great support.

I live in London so am covered by the National Health service.  I feel lucky that I am under Dr Nim Christopher who is well-respected andrology surgeon and he will be doing the operation.  I didn't choose him it was more luck of the draw.

I saw him today and this is his report:
'I reviewed this patient in my outpatient clinic today.

He is due for surgery next week. He should get a minimum of 5 inches length (more likely 6 inches) with his penile prosthesis and straightening manoeuvres. This will be the Wilson moulding +/- multiple small tunical relaxing incisions. Most of the surgery can be performed via the scrotal incision but if we need access to the distal penis, we may need to open his old circumcision incision as well. If tunical relaxing incisions are performed, then it will be left semi erect for 3 weeks, if not the prothesis can be deflated the next day. We would aim to get it functionally straight ie within 20 degrees (straight enough for sex). The reservoir will be inserted in the retropubic position near the bladder via the same incision'

My translation of this is that he will see what needs to be done while I am in theatre and act accordingly.  He seemed approachable and competent so I feel I am in good hands.

To prepare I am doing as much stretching as I can with the Restorex and VED and eating a lot of pineapple in response to a hint from another member.  

I have asked about pain relief and they have promised a codeine-based painkiller as well as getting something from over the counter.   I am wondering if I should have something in reserve like tramadol just in case.  I will be getting ready for possible constipation by having an enema and taking a lot of stool softeners.

I feel like I am on the upward part of a roller coaster (surgery scheduled for the 20th) and not quite sure what it will be like on the other side.  I am really hoping that I am able to restart work after 2 weeks as I have a lot of clients to see (virtually).

Very happy to answer any questions or give any help I can.  

Cheers,

Bob
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Hawk

Bob,  A great first post.  Best wishes on your operation and recovery.  

I always load up on vitamin K for good blood clotting before surgery.  Unfortunately, you can not get much K in pill form in the U.S.  You get far more from a few servings of kale (by far the richest source of any food).  Scallions are 2nd but have less than half of what Kale supplies.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Roddy

Hi, Bob. Welcome to the forum and welcome (nearly) to the club. To directly answer your question, I used co-codamol post surgery and that was nowhere near enough painkiller for me. Once my surgeon friend insisted I take 2 Tramadol every 4 hours to stay ahead of the pain, there was no going back! The pain was clearly still there but I just couldn't feel it. I took 3 weeks of proper serious healing before I could go about my business again.

Any questions at all please ask.

Good luck!

Roddy
Aged 51 congenital curvature and then Peyronies onset, excision and grafting not successful,
Coloplast Titan implant on June 3rd, 2019 (aged 47) to correct a 90 degree bend
Dr. Mike Fraser - Glasgow, Scotland.

Stepone

Bob,
Great post.
Pain affects us all differently.
Just be sure to take all your medications at regular times.
I was stupid and took pills, only when I was in pain. WRONG!
Once you are in pain, the drugs take a while to work and people sometimes take more because they feel the medication isn't working.
If after a period of time and you are not experiencing pain, you can always cut back to a dosage that works for you.
I will be praying for you Bob.
Stay safe and stay strong.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Bobinlondon

Hi Roddy, Hawk and Stepone,

Thanks for your replies.  I am going to get stocked up on kale and have ordered some tramadol over the internet (fingers crossed I get it) as a backup to the codeine.  Am planning to stay so far in front of the pain I don't see it if at all possible.  

Fortunately, I found out today that I don't have to isolate for 7 days before the operation.  So I will just be avoiding crowded spaces.  I have to do a lateral flow test 3 days before and then they test on the day.

Thanks again for your support.

Bob

69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

anon1986

If you like pineapple, try and eat a bunch of it from now until surgery. My surgeon suggested it to me as it helps keep bruising away and since I love pineapple I ate it everyday before surgery (and a few days after) and had ZERO bruises. Good luck!
50° curve to the right at 33, narrowing, mild ED

implanted age 34 in 2021, Titan 20 cm + 1 RTE
Dr. Hakky

Bobinlondon

Thanks Anon,

It was your hint that got me into it.  I think I have pretty much emptied the local market of pineapples!  Will be taking them before and after.  

Did you also recommend a couple of supplements for healing?  Gabapentin and meloxicam?  Would you still recommend them?  Thanks for your contribution.

Kr

Bob
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Pfract

Hey bob!

I think most have  been there at some point. Feeling discouraging and wanting to distance from the board, i guess to kind of forgetting about Peyronies.... Glad you stuck around.

I read your post attentively and learned about something i didn't knew. "This will be the Wilson moulding +/- multiple small tunical relaxing incisions" No idea what that moulding is, but i will definitely google it.

I am wishing you best of luck on the recovery and during the surgery process. You deserve to get your sexuality back in full force.  8)

anon1986

Apologies Bob, I just noticed in your original post you've been having pineapple. Enjoy it!

As far as gabapentin and meloxicam, they were prescribed by my surgeon. Apparently the gabapentin helps repair nerve damage and meloxicam is a more powerful anti-inflammatory. Because we all are peyronies sufferers, gabapentin seems like a good idea because to mitigate the scarring there's going to be some disruption to the nerves. For a few months after surgery I had reduced feeling on my shaft where my plaque was located. All seems to be well now. I still have some meloxicam kicking around and I take it on occasion when I think I need more than Motrin.  
50° curve to the right at 33, narrowing, mild ED

implanted age 34 in 2021, Titan 20 cm + 1 RTE
Dr. Hakky

Bobinlondon

Thanks to Pfact for your comment about Wilson moulding.   I had a look at the research and this article seems to describe it https://pubmed.ncbi.nlm.nih.gov/8072079/  It does not look particularly new but the results look good.  

I just had some disappointing news.  My surgery has been postponed for month so my next date for the operation is the 17th June.  

Unfortunately, these things happen with the NHS.  

So I have to wait patiently for a bit and see try and keep to my stretching and eating routine.

Thanks again to everyone for your support.

Best wishes,


Bob
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Hawk

Focus on the fact that it gives you more time to stretch that much more.  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Bobinlondon

 Hello all,

Could I ask the group for some feedback on a dilemma?  As I mentioned my surgery was postponed for a month and is now due on 17th June.  

I had arranged for my girlfriend to be around for a week after the operation to look after me.  Unfortunately as the operation was shifted she will only be able to be there for a couple of days after. I could ask for an extension and have it in say August when she could be around again.

I know some guys in the group have gone through the entire experience by themselves so it is not impossible.  I wondered what you thought of the idea of only having someone around for a couple of days and then managing by yourself.  I am not isolated as my son is quite close by and I have a flatmate and lots of delivery services available.  Although I would have to get up the stairs to meet them. I have never really been on heavy painkillers before so I wondered how much they interfere with your ability to manage daily life.

Any input from guys who have had an implant would be very welcome

Thanks,


Bob
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Hawk

Unless you are not typical, the pain killers will kill the pain.  They give you no sense of being drunk, drowsy, disorientation, loss of balance.  It is like aspirin but kills pain better.  People abuse it because it can give you a sense of motivation or euphoria if you are not in pain.

I think you will be fine, especially if you have frozen dinners, lunch meat, and other easy-to-prepare food.   Think ahead, have all laundry done etc.  It is not like you need help to the bathroom or like you could not get out of a burning building.  You will be in pain and have difficulty getting in a comfortable position etc.  The first few days it is nice to have someone bring you ice bags, food, and give you a kiss, and say "poor baby" to you.  ;)
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Bobinlondon

Thanks Hawk,

Very practical information as usual.  I must say having someone say 'poor baby' at regular intervals is pretty appealing!  
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Hawk

Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Bobinlondon

More delays.  I am now scheduled for surgery on the 1st July.  I did have the option of going in on the 8th June with Dr Ralph.  I read a lot about him and decided that, while he had a stellar reputation, I felt more comfortable going with Dr Christopher who had been looking after me up to now.  It was a tricky decision but given the organisational and life changes that I would have to do in order to do the 8th another 3 weeks was ok to wait.  More pineapple and stretching for another month I guess.  Hope everyone is well. Bob
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Pfract

You have a date and it will come soon! I can feel the anxiety from here. But it's a good thing. I hope it goes well for you Bob! Fingers crossed.  

Bobinlondon

HI All,

Well I have got through Tuesday, which is when my previous 2 appointments were cancelled.  

So I am hoping to have the operation on Friday 1st July.  

I must admit I am feeling pretty nervous about what is going to look like and how bad the pain will be but I have been preparing as much as I can.  Got extra soft underwear, set up a tv in the bedroom and have been stretching with a Restorex and using a VED every day.  It looks like I have at least an extra 1/2 inch if not a full one.  

Have been eating loads of pineapple and just starting on Kale which has also been recommended.  

I will post as soon as I can on Saturday or soon thereafter to let everyone know how it has gone.  

Thanks again for everyone's support.  If you have any questions or ideas to make the posts more useful just let me know.  

Cheers,

Bob
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Stepone

Congratulations on your new life ahead of you.
You certainly sound like the most prepared patient.
Prayers for a great surgery and recovery.
It takes a while to get there. Be patient and things will get better over time.
Big hugs
StepOne
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Bobinlondon

Hi Stepone and All,

Firstly thanks again for all your comments and support.  

Short story -I am out the other end.  I have an implant and I feel good!

Now the whole story.  

Went in early on Friday morning to University College Hospital in London.  The positive side of the NHS when it is working well it is that it resembles a well-oilded machine.  I was put in a side room asked to get undressed, given a gown and my anaesthetist appeared.  Very nice guy, asked me lots of questions, and explained exactly what would happen.  Especially pain care afterwards, which was one of my concerns after all I had read on the forum.

The slightly strange part came when the doctor came in.  I was expecting Dr Christopher.  But it was another guy who introduced himself as a close colleague of Dr Christopher. (I can't remember his name right now)  I don't know why I did not check if he was performing the operation but since I had asked so many times if Dr Christopher would be performing the operation (and was told he was) I just assumed the other doctor was just doing the preliminary interview.

My mistake!  But not really.  I was first on the list so somehow I decided to just go with the guy.  He seemed to be a really receptive and to me, he seemed competent.  So I guess part of me just said 'F~@< it' I'm going for it.  

Was first on the list and by 10 am I was in the theatre.  The next thing I remember is being moved and the surgeon was saying the operation was a success. I think I was back on a short stay ward by 11 30 with my dick wrapped up like a cone with a blood drain and a catheter in place. I remember thinking (I was half-inflated) well if that is the length I am pretty happy about it.  Although it was like having a tent pole coming out of my hospital gown.

Felt a bit strange wandering around the ward with my two bags but it felt good to be able to move a bit.  The night was a bit difficult with a lot of noise and not much sleep.  Staff waking me up to take my blood pressure, give me antibiotics and blood thinner.  All necessary I know.  
I was not in any pain but I thought it might be a good idea to get some pain relief ready for tomorrow.  So I asked for pain relief and started on co-codamol.

The next day the surgeon turned up at 12 and updated me on the operation.  It was all pretty much as I hoped I had the 22cm Titan with no rear tip extenders.  They did some moulding but did not have to do additional cuts to straighten me which I was also pleased about.  The doctor said I still had about a 20 degree curve but if I did cycling that should clear it up.  Sounds good and I hope he is correct.  

Then for the tricky bit of removing the bandage, catheter and drain.  I asked for some more Co-codamol which I got without any problems.  I prefer to be in charge so I asked if I could remove the catheter.  He said fine so I gently pulled it out.  I was amazed at how long it was but he explained it had to go right up into the bladder.  He then largely deflated me which was a bit painful but quite ok with the pain relief.  

The doctor then left and a senior nurse supervised the next bits.  I was a bit nervous as to whether I would be able to pee but in fact it was no problem after an hour or so.  That was a big relief.  They also insisted on doing a kind of ultrasound which tells you how full your bladder is after you have had a pee.  They were very thorough and I had to do it twice before I was given the all clear.  At that time I just wanted to get home.

The nurse then removed the blood drain.  Again I was quite grateful for the pain relief as the pain was not too bad.  

My girlfriend then turned up to take me home which was great except that a 30 minute cab ride turned into an hour because it was the gay pride march.

I got more co-codamol to come home with together with the anti biotics.  I asked and got some laxatives for the constipation I know come with codeine medicines.

I have started icing and am just resting as much as I can.  I would say I feel normal but I was nearly sick a couple of times so I need some fresh air.  

Will keep posting as things go on.  If anyone has any questions or wants to see photos just let me know.

Cheers,

Bob




69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

chrisaaa7

Congrats bob! Sounds like your first day has gone well so far, keep us updated the next few days! Wishing you a good recovery.
M 21 Los Angeles

Saw Urologist at USC who handles Peyronies alot and he does not believe I have it. Symptoms: soreness in flaccid state, glands do not engorge, 2 very small. indents, slight girth loss( last 2 might be mental),ED for 2.5 years

Bobinlondon

Thanks Chrisaaa,

Day 2 report

Like I said I am still in this rather strange world of no pain or real discomfort.  I am being careful but basically, I am a little achy in the scrotum but apart from that no problems.  I feel alert and happy. Although having a bowel movement would be welcome at this stage.

Part of me is wondering if I am missing something!  I am icing as much as I can and taking the lowest dose of co-codamol I dare, together with Ibropufen.  I remember all the advice about staying ahead of the pain.  

Glad to answer any questions and thanks again for the support.

Best wishes,


Bob  
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Stepone

Bob, sounds like you have had great care.
I am very happy for you.
Thanks for keeping us informed and documentation on your progress.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Bobinlondon

Day 3
After a bit of thought, I decided to give up the Co-codamol and just use Ibuprofen.  It was such a relief to have a bowel movement after 3 days of nothing while taking every laxative I could get my hands on.

and Day 4.
I have now cautiously given up the Ibuprofen for today at least to see how I go.  There seems to be no pain so far but I am very cautious given the warning notes from others.  Am still taking antibiotics and laxatives!  I am doing less icing now and moving to warm wraps today.  I had a shower but was asked to have no hot baths until my follow up appointment.  

Apparently, I was operated on by Dr Christopher and Dr Varun Sahdev, both of whom I highly recommend.  

I have a follow up booked in 4 weeks to learn the inflation and deflation technique.   I have no intention of doing any inflation but have been cautiously feeling around for the deflation button but have not been able to find it yet.  If anyone has any good ideas about the best way to locate it, I would be interested.  I know where is should be on top of the inflation part but it seems when I press it nothing happens.   I read that sometimes you have to turn your fingers 90 degrees to get to the right part but if I try and do that it feels like I am squeezing my whole testicle sac rather than the deflater, if that makes sense.

Reflecting on what has helped I think the pineapple and kale might be helping with the healing and the stretching helped with getting the best fit of Titan.  So, thanks to everyone who recommended those and a strong recommendation to others who are heading along the same path.  

Will write more soon.  

Best wishes,


Bob
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Stepone

Bob
Thanks for your documentation.
Are you partially inflated?
Finding the button is difficult at first.
Did they give you a sample pump? Sounds like they did not.
I am sure you could contact Colorplast as I did to ask them to
Mail you a sample pump.
You can also google the Titan pump, so you can see a photo of it.
It seems a little early to be looking for the pump button as you won't be pumping for a month, per your notes.
Because of the swelling it is even more difficult to
Locate the button.
The button can be found by
1. Locate the round bulb part of the pump.
2. Next move your fingers up from the bulb and you should feel an odd shaped structure with four distinct sides.
3. Carefully and slowly feel the various sides. You will notice that two sides are round and one side has a slight raised area. This is the actual "button". It doesn't feel much like a button. But if you can find it, you have mastered the first step.
When you eventually are authorized to deflate, pressing the "button" is more like squeezing the "button".  
Actually before I bore you anymore, I would look at my posts where Hawk replied to me about deflating. It's a skill you will learn. Some people use two hands as pressing the "button" can require some firm pressing.
I remember it was very difficult for me to
Locate the "button". It took a lot of sensitive fingering to locate the slightly raised circle, aka "button".
You may still be too swollen to find it, but perseverance will win out in locating it.
Hope my wordy post helps.
After a few months it becomes second nature in finding the button as some have said, with me it took years to perfect it.
Again look at Hawks post on the button, he has good detailed descriptions.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Bobinlondon

Day 5
And first thanks to Stepone for his detailed and accurate reply.  I am sure it will be useful when I am finally allowed to inflate and deflate. (will check out the possibility of getting a sample pump)  The reason I was interested in the deflate button was that, I thought, the doctor fully deflated me before I left the hospital.

However, I seem to be slightly partially inflated.  I had read somewhere on the forum that the implant could partially inflate itself so it seemed like a good idea to know how to deflate it properly but perhaps I have the wrong end of the stick.

But I should probably wait a while until I get back to the doctor to make sure I am not doing anything stupid - which is quite possible as I am very curious.

In accordance with the posts I have read I am keeping my penis upward against my tummy supported by a good pair of underwear.

As I have said in my previous posts I feel very lucky with how things are going.  Hopefully, it is not too boring for others to read but I guess it is also good to know the whole procedure can go smoothly.  I am still taking the Ibruprofen, but as an anti-inflammatory rather than a pain killer.  As far as I can tell I have no pain at all.

I will stop icing today and will start using gentle heat.  The doctor told me not to have hot baths so I am just showering and will use a heating pad for the wound.  My penis still looks in slightly the same shape it had with the Peyronies so I will be please to start cycling and hopefully do something about that.  Although to be honest I am not very concerned with how it looks while deflated as long as it is reasonably straight for sex.

I will keep posting as things progress but I feel I don't have a lot to talk about at the moment.  Thanks everyone.

Bob










69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Bobinlondon

Day 19

Well everything still seems to be going well. I went back to the hospital to see the practice nurse yesterday who is a specialist nurse who helps people with issues like implants.

I was a bit concerned that the tubing seem to be sticking out of the left side of my penis but she looked at it and said it was just where the tubing was slightly bent and the tubes were in the right position.  

She fully deflated me which was a little painful but fortunately I had taken a  co-codomol tablet before I arrived at the hospital.

It was a big relief to be able to have my dick pointing downwards which makes going to the toilet much easier.   She also gave me one of the keyrings to learn how to use the pump and deflation point.

Nearly all the bruising has gone.  I have been using an arnica gell which I highly recommend if anyone has bruising they want to get better as soon as possible.  

I am due to see the doctor again on the 29th to learn (hopefully) how to inflate and deflate myself and start cycling.  I am really looking forward to a good bath which I can't have yet as apparently, they use some kind of glue to repair the incision as well as stitches.

Happy to answer any questions people have but it is good to report that the whole thing can go really smoothly (so far!).

Kind regards Bob  
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Stepone

Thanks to another great report. I was taking baths to soak when I pumped after a week or so. I am surprised they haven't allowed you to bathe fully.
I wonder if there is a misunderstanding on your part?
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Bobinlondon

Well maybe things had been going too smoothly...

I cautiously tried masturbating a few days ago and although it was successful I wonder if I was too rough with my penis too quickly.  It was the night before I was due to go back to the hospital and I started to get twinges of pain in my scrotum afterwards.  But nothing too serious.  I thought I would get over it.

At the hospital the next day I did not see either of the 2 doctors who had operated on me which was disappointing but can happen with the NHS.  It was a new French woman doctor.  She examined me and said everything looked good but caused me some concern by saying infections could occur for a long time after the operation.  Which was worrying as I thought I was mostly out of the woods.  

She then partially inflated me herself which was extremely painful even after taking 2 co-codamol tablets beforehand.   It was not the penis itself which was hurting but her fingers on the pump. (especially as I think she had some nails!).  She then got me to try and I managed partial inflation and deflation.  Although to be honest I was so panicked by the pain I am not sure how much I took in and whether I am able to do it again.  I have not tried yet for the reasons I describe below.  Interestingly enough she said that at other hospitals they do not try and inflate for 6 weeks to allow more healing.  (I am at week 4)  I know other surgeons say differently.

The pain went away quickly but throughout the rest of the day, I kept getting sharp tingles/pains in my scrotum.  I went back to icing it and that seemed to provide some relief.  I got to sleep at night and felt ok in the morning but as I started moving around and doing things the tingles/pain started coming back.  I am now sitting on the edge of the seat as it seems any pressure on the scrotum brings them back.

It is disappointing to get hit with this setback as I felt things were going on really well.  I guess I just have to go through it and keep doing the things that seem to help - icing and no pressure.  I wondered if I have somehow started an infection down there.  

I wondered if anyone else has gone through something similar?  I feel a bit unsure about trying to inflate/deflate with this pain for fear of making it worse.  I do have the option to go and see the nurse practitioner again or perhaps the Coloplast rep in London to get a bit more advice.  

Will keep reporting as things change, and hopefully improve.  Cheers, Bob

69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Stepone

Bob,
I am confused about what's going on.
My doctor told me no sex for 30 days. I waited 31 days.
My doctor told me to start pumping on day 7 or 8 and as instructed I did this for the first 3 weeks in a warm jacuzzi along with a cocktail to numb the pain.
Pain for me continued for months and I still have short bursts of pain from time to time. But from reading other journals, I see that this is normal.
My doctor never mentioned about infections weeks after the surgery.
In the first week after surgery, my surgeon did tell me to contact them if I got a fever, but that never happened.
I am not saying your surgeons don't know what they are doing, but if you read journals from other implants here in the US, particularly those patients from Dr Eid, and my own surgeon, you will find that they all recommended pumping sooner rather than later.
Don't you think it's odd there is such a huge difference in treatment?
Please read other peoples journals and you will learn a lot.
Also, did you surgeon say you could have sex before 30 days?
StepOne is  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Bobinlondon

Hi Stepone and all,

Thanks for the comments.

Things have moved on a bit and I am no longer experiencing as many twinges of pain.

I was really pleased that I managed to deflate myself this morning as that will give me more confidence to try inflating.

Yes I do find the differences between what many doctors recommend very confusing. However I am at 4 weeks now and feel ready to try some serious inflation. I'll have a nice warm bath and try it gently.

I was so relieved to get away from French lady doctor that I forgot to ask her when I could try sex! But given it has been four weeks now I feel that I could try it quite soon.  However my girlfriend is away at the moment. I don't feel a couple of weeks more wait will make that much more difference.

I will take another look at some of the other journals but I feel like I'm in a reasonable place at the moment.

Thanks again for your advice.

Kind regards Bob


69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Bobinlondon

Hi All,

I had a bit of a frustrating few days because despite reading all the journals and looking at all the videos, I could not get the implant to inflate.  I was squeezing it as hard as I could but it just seemed I could make a dent in it but it seemed not much liquid was being transferred.  Deflating was still ok.

I phoned my favourite nurse at UCLH and she arranged for me to see a doctor who kindly gave up her lunch break to see me (I took a load of chocolates in to say thank you)

She said that sometimes you had to give an extra hard squeeze to get the bulb working.  She did so and then helped me inflate and deflate a couple of times to make sure I could do it myself. It was such a great feeling when the bulb was compressed properly and I could feel the liquid moving around.

She gave me a useful hint which I will share.  On one side the tubing sticks a bit out of my penis where it bends as it collapses.  She recommended keeping a bit more fluid in the penis so the bends are not so obvious.  I tried and it seems to work well.

So now I can get seriously cycling.  To be honest I can't wait.  My penis is still slightly bent from the Peyronies but the doctor said that should clear up in 6 months with the cycling.

Will keep everyone informed of my progress.

Kind regards Bob  
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Stepone

Thanks for sharing.
Yes I have had that issue a few times.
Are you able to inflate your penis to maximum yet?
No pain is no gain
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Bobinlondon

Hi Stepone and All,

After seeing a more sympathetic doctor I found I could cycle without too many problems.  All well and good. It is interesting though - I noticed a kind of reluctance to get started so I have really been pushing myself to do 30 minutes a day.  

One thing I feel puzzled about is that I can squeeze the bulb until it is hard and I seem fully inflated but there is no pain at all.  I am ok with the size I am but wondering if I am missing something.  It would seem there is no point in keep cycling as I thought the idea was to get extra length.  

I have seen the videos where a doctor suggested bending the end of the penis down to an extreme angle in all directions to make more space but it seems a bit brutal and I don't want to damage anything.

The second issue is auto inflation.  I can deflate fine and my penis is nicely bent forward at the front and seems almost floppy.  I give a squeeze or 2 on the bulb to stop auto inflation but in a short time, the penis seems to be half inflated again.  It is not a big problem as I just tuck it up in my underwear.  But I would like to have it pointed downward if I chose.  

Would be grateful for any advice from the wise ones...

Best wishes,


Bob

69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Stepone

Bob, I can only tell you sometimes it happens to me.
I try to squeeze all the fluid out by grasping my penis until it feels like two big pliable straws inside my penis, then I will give a firm squeeze of the pump, not two, but one, and then my penis seems to be floppy. It's sort of like a hit and miss type thing.
I forget now how long you have had your implant, but some of us heal differently. I experienced gains and pain the entire first year.
When you inflate to maximum, try waiting a few minutes and see if you can get a couple more squeezes in. It seems like with me, I inflate to maximum, and after 5-10 minutes I can get a couple more squeezes in.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Bobinlondon

Thanks for the advice Stepone,

Will give it a go and report.


Kind regards, Bob
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Hawk

Bob, could you put the year of your surgery in your signature line?  It would help us when we respond to you.

Auto inflation is almost always the result of not being totally deflated (Reservoir completely full) during the scaring in time.  It is important that the penis and the reservoir are alternately stretched during the scaring-in period.

I would personally avoid pointing my penis down for as long as possible.  It can result in a lower angle to your inflated penis (in my opinion).

Now a question for you -  Please give a link to: "the videos where a doctor suggested bending the end of the penis down to an extreme angle in all directions to make more space."

It is pretty strange that I would have NEVER heard of such a thing.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Bobinlondon

Hi Hawk,

Thanks for your message.  Unless I am missing something my year of implantation is in my signature line as June 22.  I have altered it to make the year clearer.

Given I did not start cycling until 4 weeks after the operation I am not sure if there is much I can do if the scaring has already happened.  Do you think there could be some value 2 months after the operation to try and stretch the reservoir a bit by keeping it very fully deflated?  

The video I referred to was https://www.youtube.com/watch?v=WJaZCeJjxIM as demonstrated by Dr Paul Perito.  Personally, I think it looks terrifying but there might be some value to it.  I would be very interested in others' opinions.

I am very happy keeping my penis pointing up.  I am just a bit worried that I am making the auto inflation worse by not keeping it down where there seems to be more pressure forcing the saline out of the penis.

Thanks for your thoughts.

Best wishes,


Bob


69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Stepone

Bob,
I believe a upward angle of the penis is as nature intended.
Mine was that way, until I injured it.
I don't know why anyone would want to angle down their penis.
But all I can do is give you my thoughts.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Hawk

Bob, I apologize.  I thought you only listed the month and day of your implant.

Bob, there is no sound reason that pointing your penis below your reservoir would reduce auto inflation.  The lower your penis is, the more likely it is to fill since, as you know, fluid runs downhill.

I cannot promise you can still stretch the reservoir capsule, but I would try.  I would lay on my back and squeeze, roll and drain every drop possible from my penis (be sure to drain the area behind your scrotum), then wrap your penis snugly with Coban.  Do this before bed.  This should prevent backflow and stretch the reservoir capsule to the extent possible.  I would do that nightly for several days to see if it helps.  I only had to do it for one night and a part of a day to resolve the issue, but I was earlier in the process than you.  I would have to refer to my journal to recall how much earlier.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

BTW, In regard to the video,  these are my thoughts:
1.  I do not believe you will find any other penile surgeon who will suggest you do this.
2.  How does bending the penis/cylinders at one point mid-shaft give more length and girth than inflating the penis to maximum waiting and inflating a few more pumps?  I miss the logic/mechanism of action.
3.  Though Titan cylinders are very durable, this seems like it could place a lot of repeated stress on the same point.
4.  Based on his history, I think this man is one of the most grandstanding, unscrupulous, self-serving men in or out of medicine.  He has been sued by two different men for the amputation of their penis.  He also faced several criminal charges for his involvement in distributing counterfeit cancer drugs to cancer patients.  Link ---> https://www.sun-sentinel.com/news/fl-xpm-2004-05-28-0405280185-story.html

None of this proves his technique does not work, but everyone who cycles gains size after surgery.  I would need someone I respected more than Perito to convince me to use that technique.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Stepone

I totally agree with Hawk.
Stay away from anything this doctor says.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Bobinlondon

Hi Hawk and Stepone,

Thanks as usual for your replies.

To the specifics.  I totally agree about Dr Perito.  I would not trust his techniques at all.  I just wondered if anyone had been brave/foolish enough to try them.  I will stick with normal stretching.

Hawk,  thanks for your ideas on bandaging.  I will go to the pharmacy tomorrow and get some bandages and give the 'binding up' approach a try.  I can't think it is going to do any harm and might work.

I will keep to my original practice and have my penis pointing up most of the time.  The only problem I have about it is that I do a kind of dancing where the girl's backside is sometimes pressed against my crotch.  I am a bit concerned that if I keep it pointed up that it is going to make her think I am dancing with a permanent erection!

Cheers all,  Bob
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Stepone

Give her a thrill. Haha
You will become very popular I am sure.
When I was young and I would dance, i was constantly getting Hard on's. I was very popular on the dance floor back in the 70's. Haha
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Bobinlondon

I wanted to bring everybody up to date with the progress of my implant since it has been nine months since the operation.

Sorry if I am upsetting anyone who thinks this forum is too biased towards implants but I would have to say that my experience so far has been great.

Re-reading my implant journey I would say that everything went really well. I did not experience much pain post the operation. I would say that what I experienced was more on the discomfort level rather than real pain. I am guessing that the fact that I did not have any surgery before the implant made the operation easier.

How has it been since then? I did the cycling as carefully as I could for the first couple of months. I would have to say that I have not been cycling every day since then. Probably about two to three times a week. To be honest the reason has been that I have been very happy with the length. I am about 6 ½ inches when fully inflated. The slight bend I had immediately after the operation has gone completely and to my eye I'm completely straight.

I have had slight problems deflating. I don't seem to be able to do it in one go. Immediately after the inflation I can get it down to a semi-rigid state and then I have to leave it for a couple of hours and then try again. Then I can get it down to what feels like fully deflated.

The only real problem I've had is that the tubes on one side feel a bit protruding when I am fully deflated.  When I first was operated on I felt very sensitive about how it looked and felt. As time has gone on I have realised that I can adjust inflation a bit so that the tubes are not as protruding as they are when completely deflated.  And to be honest I quite enjoy walking around with a slight stiffie all the time 😊

Sex with my girlfriend has been transformed.  From having to dose up with Viagra to get hard I can now enjoy sex for as long as she wants it.  It's strange I feel I have almost had to reprogram myself to worry less.  If something happens during sex for example I can't get my penis in the first attempt, I used to get stressed and worried I would lose my erection.  Now I have to remember that is not going to happen!  

I do not miss having a 'natural' erection and am more than happy with how things are.  I still get feelings of excitement and that is fine.  The fact of being able to get and sustain an erection for as long as I want is totally brilliant.  

Thanks a million to all the mods and members who spoke to me or answered my questions, especially Hawk and Stepone.  It really made a difference. In return, I am happy to answer any questions or talk to anyone who might be wondering if an implant is right for them. I promise to be as honest as I can be.
Cheers, Bob
 
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

Stepone

Bob, thanks for your report.
It sounds like you have found your new penis to be pretty darn good. I know it's hard to believe, but sex will continue to get better.
I am surprised you haven't gained much length. I was still experiencing gains even after a year. Not much, but it settled stable at 7".
When you inflate, do you pump to
Maximum? ... meaning do you pump so much that you never matter how hard you squeeze that pump, it just can't take another pump?
The pump is strange for sure. I have had problems too, one thing I have learned is sometimes I will use two hands to press on the pump button to deflate.
I think we are used to things working easy and on/off type switches. I wish they could come up with an easier to use pump. Having to squeeze that pump button through my scrotum wall can hurt big time sometimes, but in the big scheme of things, it's not so bad when I have mind blowing sex.
But it sure would be nice if it had an easier button/switch. But of course we don't want any exterior buttons, lol.
I wonder if the could figure something out using magnets? Lol
Best wishes and thanks for your updates.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Pfract

Very happy to read this, Bob! Enjoy as much as you can! :D

ohnoohno

Hi Bob,

This is really great story reading over your post I'm glad to hear it's all worked out a year down the line. I then see you mention you're from the UK and had it done via NHS! I also am from the UK and was under the impression I had to go private mainly to fix this. Was your whole surgery etc covered by the NHS?

If so I am wondering on the process that got you from A to B?

I first went to my GP that took a look and said not sure go to the hospital, I then went to the hospital which said they didn't know what to do here then I tried another hospital and they practically said the same. All NHS / are based in London. This then lead me to a private urologist who specializes in Peyronies that cost me over 200£ to diagnose it and give me some Cialis. I then went on to buy my own VED. Have been trying these for a year with no resolution.

I'm not sure on my next angle but an implant seems like the best option so this is why I ask how you managed to get one on the NHS? It would be great to hear the steps if you are able to share...

Thank you and take care
29 y/o diagnosed 13 Jun 22.

went from a slight 30dg bend at glans to whole thing being deformed/loss of length over a year.

trying to find a way out of this all

philtered


  Try getting a referral from your GP to prof ralph in london. I paid to have mine done by him and it was pretty quick, but he does nhs patients but the wait will probably be a few months.
AGE 59
Acute since  Dec 2017
VED, traction & supplements
Went from 30 degree curve to 80 during acute stage  stabilized since May 2019
Curvature calculated at 80 degrees by Dr Ralph from emailed photo.
Titan  22cm with 1cm RTE's Prof ralph Feb 2022

Bobinlondon

Hi ohnoohno,

Sorry for the delay in replying.  

I ended up at the Urology department of University College hospital in London.  All details are here.  https://www.uclh.nhs.uk/our-services/find-service/urology

I was originally sent to Chelsea and Westminster Hospital but they did not have a urology surgeon so they sent me to UCLH.

I can't really speak highly enough of them.  The treatment was first class and all on the NHS.

I don't know how difficult it is to get referred there but if you can I highly recommend it as they deal with a high volume of Peyronies cases.

Some people seem to think Dr Ralf is great - others are really upset by him.  My surgeon who is in my signature was great.


Happy to have a chat if that helps.    
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.