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[Waveboy]

This is my journey through my eyes and emotions.

My main dx is that I am a hemophiliac, with the background fear of any bleeding from any work or procedures done on me. My secondary dx is PE and Peyronies disease.

The main part of my lifetime worries- Part 2
I have been suffering from Erectile Dysfunction, the Premature Ejaculation (PE) part, since a teenager. It got progressively worse over the years. Trying the different meds, condoms, sleeves, SSRI meds, beta-blocker meds, sex therapists, and psychologists. Nothing changed. Every time I got a new thing, I would get my hopes up, to be knocked back down again.  Finally, I just accepted it. Every 5 yrs or so, I would repeat most things above, but nothing changed. I got married to a wonderful woman who is supporting me through all of this.  I am blessed and thankful for her. I've been married for 17rs, and after our first 2 years, my issue with PE started getting worse -by that, I mean, going from 3-4 mins to less than a min to sometimes before penetration. We are working through this together.

Part 3. Now at 17 yrs of marriage, this bend in my penis started in June 2020 and just kept getting worse. By Aug, I started blaming my wife for us not being able to have sex comfortably without the bend getting in the way. This was my fault, not hers. Which I have apologized for!. It came to Christmas and New Years', and the bend got so bad we can't find a position to get in for sex. Not the Christmas present or the start of a new year that my wife or I wanted.

Next, we placed a call to our primary care doc and had to wait 3 weeks to see them.  Then another to see urology to dx Peyronie's. While waiting on an apt for urology, my wife and I look up treatment, and all I saw was shots and bleeding and not to do it with a bleeding disorder. And, it could come back, and I was like, WTF!!!! And after finding this site, my wife and I studied, and we saw the option of an implant!

Next, we went in to see urology. It was an ok apt. He wanted to try injections. I was like, no. He wanted me to try all the other things again to fix PE. I was persistent for a referral for an implant because he had never done one, much less just started injections testing. Then his comment just before he said he would try to find a reconstruction guy. He said his recommendation was to live with what I have and use it the best I could before any surgery. But he didn't say that about injections. As of April 9th, I still have a massive bend and PE, and I am waiting for the doctor to call me with a referral.

Til later, Waveboy out

[Mikel7]

I wish you the best on this journey! I have also had 2 double hernia operations left and right  with complete fiberglass mesh in my abdomen.  It also sounds like you have a great relationship with your wife - this is also very helpful.  I do know that Hawk would be the one for questions on an implant . I also believe that Dr Eid in New York is the one Dr that comes highly recommended as far as implant surgeons go. So please keep us updated on this     Mike

[TDix]

Hang in there bud.  What insurance do you have?  You may not need a referral.  I too have suffered with PE.  It’s not fun.  I will say an implant helps in that if you finish too soon it doesn’t affect your erection.  You are still hard as a rock, for as long as you or your wife want.  Feel free to PM me or ask questions here in your thread.  We are here to help

[Waveboy]

Thanks Tdix. My insurance is a PPO but the referral is from my urologist to a specialist in reconstructive urology with access to a competent hemotologist. This is what makes my situation so complex. I will likely have to be in the hospital for about a week+ just to get my clotting factors stable. The most dangerous part of surgery will be the 8-10 day range, after surgery, when clots start breaking lose and I could possibly begin to bleed again.

[Waveboy]

So I waited 2 weeks, after driving 6 hours round trip, to make a comment due to how my apt went with the reconstruction urologist/ surgeon. I went in with a referral stating patient wanted different options  and discuss implant. So resident doc comes in and ask me my history and once I told him n showed him pics of penis with start of bend  cause it was semi hard and he measured flacid penis. The resident told me that I had bent my penis tryng to have wild sex with my wife  and forcing a flacid penis in her which damaged my penis which was NOWHERE in my statement. Then he left and the surgeon came in and all he kept saying was take the shots because u don't want grafting due to your bleeding issues or we can stitch your penis the other way from the curve  not to mention stitching 2nd location due to  2nd curve. I told him I didn't want shots due to bleeding everytime shot goes in several locations twice a week for 8 + weeks and his response was you just need to hold pressure where the shots are so it doesn't bleed! He is such a dumbass! 48 yrs of dealing with hemophilia for a surgeon to tell me that🤬. Pressure does no good if I'm bleeding. My blood can't clot without an infusion of clotting factor.
Then doc says you don't qualify for them anyway due to only having 20%curve. And my wife and I were like how did u get that and he said from the pic u brought. Which we told him it was half erection. He still didn't want to do test to see full erection full bend/curve. I had to ask him about implants and he said I didn't need to go that way because they didn't work well and I would be in every 6 months to replace parts. he then went right back to injections and saying that was my pathway to go. I then ask what was the fix with injections and he said anything over 10 degrees was a success. So I ask him if the curve was  45 and higher and I couldn't have sex, and shots got it to 35 but I still couldn't have sex that was a success to them? And to add the scar tissue could come back as another curve. His final statement before I left was work with what u have and come back when you decide about shots. Also, he informed me the PE was not considered erectile disfunction.
Again 🤬

[Hawk]

Waveboy, so what did they do after you punched him out?     

Don't be offended.  I know it is not funny, but you cannot change it, so you have to laugh at the damned absurdity.  My understanding is by his own report; he only does 30 or fewer implants a year.  I would not let this man touch my penis to do an exam much less surgery.  It sounds like he did not even offer an exam, much less a Doppler Sonogram.  Next, any implant surgeon must know that they do NOT replace parts of an implant— it is sad that some men no doubt place their confidence in him and follow his recommendations.

Now the good news.  You have just successfully completed one essential step that gets you closer to your goal.

[Waveboy]

So Hawk. I think my wife could have done the punching n prob felt better😁.

I agree it was a next step in the process. I had my mind wrapped around that going in. I'm just floored and pissed that doc never read the referral and acted like he knew all about hemophilia cause he stated he just did a case with a patient that had that. I quickly responded that it was a simple case n not a big bleeding area and he was like you're right. Shocker, the bleeder knows better!

Then when he kept going on against implants not working is when my wife was like, how many do u do?  He answered less than 30.  At that point, I was glad the resident did the exam. Not! He was just as lost, But look at the teacher.

Back on topic. I'm going to change our approach with these docs cause they not reading what I'm putting down!

I left thinking no doc knows how to cover this unless they been through it. Because u know they go home after a visit like that and have the option for sex and we don't. That will piss u off enough right there.

Tks for your comment and your site to help get through it all. Sorry I'm not as detailed as some of these post

[Hawk]

Totally knock the Premature Ejaculation out of the discussion.  It will have zero bearings on the solution you need.  Any fact that is not relevant will just confuse the issue.

I would stick with
1. I have Erectile Dysfunction - Oral meds do NOT work.  I either cannot get an erection or cannot maintain an erection if I manage to get one.
2. In the rare instances in which I do temporarily get an erection it is curved at 40 degrees or greater.

No one makes you have sex to see how your penis works.  Keep it very simple.  What you and your wife report "is the case."

[Pfract]

Hey Waveboy. I was reading your post. You are doing the right thing in searching for a solution to your problem and looking for help. But it looks like you are not having the medical care that you deserve. And especially with penile implants, first time installation is key. 

Have you considered some of the top doctors often mentioned here? May be very far, but you know you would be in good hands!

Also give this website a good look. I heard several people mentioning it already.

https://surgeo.com/penile-implant

https://surgeo.com/qualify-surgeons

[Waveboy]

Tks pfract for the sites. My wife an I will look into it.

Tks hawk and yes they not getting pics of me n wife having sex! They ask for top n side pics , but now it's obvious they use those measurements instead of doing it correctly. they don't get it that once u get that erect u can't keep it there much less say hold on let's get a picture

[Pfract]

Good to know Wave. Also, an advice...  Don't use Paul Perito. Never. Run away like the plague, even tho he's near you.

That website lists doctors that charge that fee, and only that. That's what you pay. Complications are also included. Read the faq. Very nice.

[Waveboy]

Pfract please message me on last post when I can chat with u. Tks wb

[Waveboy]

So starting around 2 today, I completed a full circle from starting with my primary doc in Feb. about Peyronies, which went almost 2 months to get to urology, that couldn't help. Urology sent me to surgical specialists. He was against an implant and was for injections that would make me bleed and get hematomas which the surgeon quoted "just hold pressure," which doesn't help my bleeding disorder! Both the specialist and urology docs ended the visit with the statement, "work with what ya got!"  They didn't listen to any history or that I couldn't have sex because of bend and pain in my penis, so what the hell could I work with. Back to today, to primary, that seems to be the only dr willing to listen. My primary says this is another step closer to fighting the insurance company. So I have to stay strong with my emotions and continue the insurance battle. But I have to give tks to my bride for moral support and helping argue with these companies. I am sorry for all the guys out there without support. The support is in this forum. And just to say, hang in there and don't give up. The struggle is real physically and emotionally. And thanks again for this forum! Til next battle, take care. Yes, I'm one step closer!!!!

[Hawk]

You are right.  It is exactly that, one step closer.  If the insurance company and doctors knew the team they are up against, they would save themselves some work and throw in the towel.  I am not sure how long the struggle will be, but I am betting on Waveboy and  BoykinLady !!!

[Stepone]

Waveboy, so sorry for what you are going through! I will pray for a good outcome for you. I know a little of your frustration, almost 7 years ago I found this site snd it changed my life.
Stay strong and you are blessed to have such a supportive wife.
You both sound like wonderful people.
Prayers and blessings for both of you towards your goals.
StepOne

[Waveboy]

Hello again.

It has been since may 6th we've all talked. Sorry for the delay, but things have been very busy!

I had to deal with a lot more red tape, doctors, and insurance to get things approved.

July 22nd come around and I was supposed to see my surgeon in Tampa. I drove 6 hrs, one way, to be told I was seeing one of his fellows, because my surgeon(Dr. Rafael Carrion) was out of town. I was not happy about it and let that doctor know this. She understood and they made another appt on Aug 4th so see the correct surgeon. Another day off from work- another 6 hr trip to Tampa.

So, when I see Dr. Carrion on the 4th (the correct surgeon) they did the ultrasound and confirmed severe Erectile Dysfunction and Peyronie's! I had zero response from the shot. He is the only physician for the past 1-2 years that did ANY testing. He gave me choices about the Spectra malleable or the IPP. Due to my hemophilia and previous mesh abdominal "screeen door" from 3 prior inguinal hernia surgeries, it was going to be complicated either way. I chose the IPP with consent for the stipulation that I may only be a candidate for a malleable due to complications from hemophilia. At this point I had no choice. Even a malleable would improve my life, however, I still preferred the IPP. Surgeon stated that he would go that route if it was safe for me in surgery and bleeding, otherwise it would be the malleable. He had my health in mind first! I was good with that on the understanding that IPP was first choice! He stated for me that he would use the LGX700CX with my anatomy. So we left that apt with him stating that the hospital was on Covid regulations in the OR and they would call when they were lifted. I had to wait because hospitals were only allowing emergency surgeries (due to Covid precautions) and had taken away all non-emergent surgeries requiring patients to stay overnight. Normal implants are usually a same day procedure but due to my blood issues, I required an overnight or a 23 hr observation with potential to be admitted. So, we waited and continuously argued for surgery dates and finally received Oct 4th, at Tampa General in Tampa Florida- 5 1/2 hrs from my home. We were super excited to have come this far, regardless of circumstances though!

Day of surgery Oct 4th.

We woke up at midnight and drove the 6 hrs to the hospital. We signed in at 630am to do a Covid PCR test, even though my surgery wasn't until 1030. Once we signed in they wouldn't let my wife or I even leave the waiting room due to Covid lock downs in hospital. Let's just say South Florida is less advanced when it comes to Covid.... Covid test came back neg. WooHoo,  we continued on to step 2. They wouldn't let my wife back in the pre-op area due to Covid rules but finally my surgeon come in and I asked for her, due to no one told us what was going to happen regarding my hemophilia. We hadn't seen the Hematologist at Tampa General, other than the tele-med consult 2 weeks before. Next thing I remember I was upstairs in a room about 6 pm. Then they finally let me see my wife! They kept us apart for 12 hours. She didn't see me in recovery and almost went to jail a few times, I am sure of it. Message came to me through a nurse that I received my implant. I didn't have an indwelling catheter and I was just wrapped up. I had 2 JP drains placed. One for the abdominal incision for the reservoir and one for the scrotum. Nursing staff on day shift wasn't very nice and informative. They kept telling my wife she couldn't stay -that she would have to leave at 830pm but they didn't understand that I had to get infusions every 12 hrs with only a 30 min window to keep my blood thick to clot. They didn't have orders from the hematologist yet either. Luckily, the night shift was more understanding. I needed an infusion at 10 pm and they let my wife stay until that was done. I was in and out of it from pain meds and peeing every hour, but still from the bed. Through out the night they kept scanning my bladder to make sure I was peeing enough, but the machine kept malfunctioning. So, early in the morning some med students came in around 6am just to check on me but no one could tell me anything. Finally my wife was allowed back in at 8 am, after sleeping in the car all night. She was too afraid to leave to go to the hotel due to my hemophilia infusions and complications. About lunch time we started receiving information about surgery. They got me up to walk to bathroom to try and pee there. At 1pm  the PA came in and ordered an in and out cath to empty my bladder which is when they learned their ultrasound machine was wrong and my bladder was really full. They started to keep me another night but came back and confirmed with my wife, who is an early retired nurse, that she could cath me at home if needed and they discharged me Tues afternoon at 430! Holy crap, 5 pm traffic in Tampa and it was raining buckets. Pain meds given and we have a minimum 6hr drive. So during the whole trip, every hour I think I have to pee. That is a 20 min ordeal with getting me out of the car to stand and pee in a urinal. Traffic was a nightmare, weather a nightmare, and I have to get infusion every 12 hrs at 1030pm. So to recap, we left Tampa at 430pm, at 1030 pm we are only halfway home, need to find a rest area with some light for my infusion that my wife has to place a IV line in me for my blood meds. The hospital blew out most of my veins trying to get IV's placed before surgery. After a 45 min episode of drug addicts at the rest stop in Ocala, rain, and lighting issues,  we finally got a place to run my infusion. On the road again. Finally getting home around 2 am. My wife going on 2 hrs sleep since sat night(3 days).

Day 2 post surgery
So we got home about 2 am this morning Wed Oct 6th.  My wife has to start cathing me every 6 hours due to my bladder is starting to spasm. We have to re-wrap the compression dressing due to urine leaking out soaking the bandage every 6 hours as well. That first dressing change was when we noticed just how much surgery I had. I had 2 incisions above my penis; one to place reservoir, the tube crossed over my front screen door for hernia, then an infrapubic incision to place pump and cylinders. Then we notice a 3rd incision at the top of shaft on the back side where they did penoplasty to fix the Peyronie's. I was told not to mess with anything as for as cycling until 3 weeks out due to the reconstruction. No baths, just showers. I felt I was doing well at this point. I was sent home 20% inflated.

Day 3
I woke up about 3 am with extreme pain in my ass, literally! My wife and I check the surgery site wondering what was going on. In the middle of the night I developed a massive thrombosed hemorrhoid that hurt like hell. Now I am dealing with a bladder that is in constant spasms and making me leak and pee all over myself and my ass is hurting! I manage to suck it up with pain meds until I get to see my primary doctor tomorrow. To make matters worse, all of my doctors are an hour away from where I live. Along with going to see my blood doctor for follow up on infusions and drawing blood, I felt like I'd never get pain relief or get to lie down. My infusions were still every 12 hours and it was a nightmare to get a good stick on me after the hospitals chop job on my veins. My wife is up every hour with me checking on me so she is still sleep deprived. Some time during the afternoon my bladder just gave up. No more peeing without the catheter. My wife starts calling the physicians office and sent messages through MyChart, to no avail. We had a plan for her parents to come down and help my 13 yo to take care of things around the house and when we got home both parents and 13yo were sick with colds, so that was one more thing that went wrong. They had to stay on the opposite side of house from my wife and I. If i'd have sneezed or coughed, I'd have died right there!

Day 4

Day 4 started like day 3. About 3 am I developed a different pain down there like a knife/ sand spur that I felt like I was being torn apart. I had never felt this kind of pain in my life, even after all of my surgeries. It was the pudental nerve that was flaired up from the hemorrhoid. It is located between your anus and the edge of your scrotum. Trust me you never want to piss that nerve off! I couldn't sit up in any position without in agonizing pain. Thursday was a very painful day due to riding in the car and in wheelchairs at doctors offices from 10 am-5 pm. They referred me to a general surgeon the next day and the blood doctor ordered a STAT PICC line to be placed in my arm for infusions due to the challenges that my wife was having getting IV access. Bonus-the infusion specialists were having trouble getting IV access too. Luckily, the vascular surgeon was top notch and got my PICC line done early Friday morning.

Day 5
Back to Dr.'s offices for the general surgeon to tell me he can't do anything about the hemorrhoid because I had just had surgery on my penis and he didn't want to cut on my butt and make things worse- "Just put hot washcloths on it hourly to help relieve pain"! At this point,  I was an emotional wreck. Thinking WTF! why are all these things going wrong. I never read about all this on this site! I have one doctor saying I need to get out the bed so I don't get bed sores on my ass and back and another saying don't sit or stand because that will make hemorrhoid worse and the nerve flair up. The only thing they agreed on was no straining! I knew i had to get off the pain meds cause it was constipating me, but on the flip side I about crap myself to death prior to surgery due to being so nervous. I hadn't been eating much- mainly just enough to get pain meds down and not be sick. My wife kept telling me I wasn't constipated, just empty. I started the Lactulose Rx anyway just to be sure.

Day 6
First day of not having to go anywhere. I felt like a rotisserie chicken in the bed. Doctors started me on FloMax to help control my bladder spasms. Started leaving my penis unwrapped so skin can have a break to heal! First attempt at a shower with a shower chair and wife helping. I had to stop twice- thought going to pass out. Pain coming from all the other things. Penis and surgery site still numb feeling. I can feel the pump though. Feels like a brick down there. My nuts are like what the hell did u put down here. They are sore and pissed off. We read in the OR notes when we got home that they left me 20% inflated so scar tissues didn't set in and mess things up.

Day 7

First day the nerve down there has calmed down and the hemorrhoid is still there just not as inflamed. This day was the first day i started reflecting on what I had done to myself. Would love to say it was a great day but it wasn't. Very much like a roller coaster ride. Each time I go pee i am using a urinal laying in bed or having to sit on toilet because I cant bend penis down and move around with a hard on. I know its only 20% but that shows and I have always been that man that always made sure i wasn't showing. Wearing scrubs to work everyday is a pain. Thankful that I read in the OR report that I had 21cm cylinders placed with one 2cm rear tip extender on each side. That would put me at loosing no length and the curve is fixed. It will just take time and healing to get there. So on this day I would have great emotions and bad emotions. I am so thankful for my wife for her help emotional and physically. She finally today was able to get 6 hrs of sleep in one night!

Day 8-13

Each day is getting better. I am able to get from the bed to recliner! I need assistance to get up and down and still unsteady walking. My delayed recovery had been from other things happening, not the implant, Now we are in week 2 and the doctors office sent email to start moving pump around but not deflating or inflating. I cant take bath and warm area up so I'm having to put heating pad over waist. Pump movement is not easy at all. It feels like it is stuck to skin inside sac. Yes makes things sore and I'm very weak feeling. No much success this week with any movement of pump- cant get it unstuck. Good things this week- I don't have to get my wife to cath me twice a day cause FloMax is helping with bladder spasms and other areas have calmed down. They will flair up if I try to sit straight up or sit in hard chair. I can't answer question of what its like to cycle because I am told not to do that, due to my surgery site from reconstruction area cant be messed with. I still have sutures from the penoplasty and with a bleeding disorder, rupturing sutures is never good. On day 12 I went in and got my PICC line taken out and took my last infusion for my blood! To celebrate that day, I walked in and out of that doctors office, no wheelchair for me! It was a great day!

Day 14 - 20

Yes I'm doing a week at a time now because things have leveled out some and I am thankful for that. Surgery sites are healing up and swelling has gone down, in fact there is no swelling. I was stressed some on that because my penis started having some wrinkles in areas not normal, but it was from swelling and the reconstruction part. Week 2 the head of my penis started having normal coloring in it and I started having more feeling when touching penis and around surgery sites. Pump still feels huge and still feels like it is stuck to my skin. 2-3 times a day I am trying to move it the best I can. Off all pain meds! Have to take Tylenol in the evenings after messing with the pump. I am able to get up without assistance and I am starting to walk around the house and the yard more. Have to start building up my strength cause I lost it very rapidly. This 2nd week has been a down hill week! My emotions are getting better. I feel things are getting better!

Day 21 -Oct 25th

 Its Monday am. I am able to get up on my own and go pee in bathroom, alone! So when I woke up at 230 am and went to pee I didn't think anything of it. My wife woke up at 7 am to go pee and she panicked and woke me up wanting to know where the blood came from in the toilet. It was enough to be concerned. After a quick strip down of my clothes and the sheet we figure it was from the reconstruction site. where blood had filled penis from night time erection or partial one and scab and suture broke loose and all ended up in toilet. Yes, we were good and awake then.  I have my follow up with my surgeon on Thursday and I am thinking this has just set me back and I was gonna have to do blood infusions again possible have to do this each time I want to have sex and pump it up. I was not in a good place today. The next couple nights I didn't get much sleep, but I had no more bleeds. Still have all the stitches and glue over surgery sites.

Day something. Its OCT 28th day of follow up post surgery

So here we go again to Tampa. 6hrs. We left 2 hrs early just in case. We look at the weather and there is a severe thunderstorm line right in out path the whole trip. WTF!. So heavy rain like 30 mph on I-75! Had to pull over twice and went through possible start of tornado! Just to say STRESSED OUT for 8.5 hours of road trip down there. Surgeon did see me even though we were 30 mins late!. He was happy swelling was gone and he said healing was very good. He was concerned about the bleed on Monday and part of site on shaft wasn't completely healed. He tested the pump and he deflated and partially inflated and deflated to show it was working but he told me 2 more weeks without cycling due to penoplasty site wasn't healed enough and if I cycled too early, I would tear sutures and would possibly get infection but he was happy about everything else! He confirmed that with my hemophilia and all that was needed to be done with me, no other surgeon would have taken on my case and he was again happy how things turned out. He showed me how to move pump around and the feeling of pump sticking to skin would go away over time and I would have more movement. He only wants me to pull the pump down very gently.

So now its the sat after apt

 I'm going to try and find better chairs to sit in and go to some neighbors house for an afternoon cookout seeing as when I left out of the doctors office he deflated me some and showed me how to position it up without hurting and wear a tighter brief underwear. So off i go. I will update you as I move along. Only issues that I still have to work around is having to sit to pee with leaning forward because I cant point penis down to pee. Otherwise, things are good. I did notice today I really don't like cold weather because  my balls and sack are pulled up tight with pump there now...it keeps things pretty sore.

I stayed at the cookout longer than I anticipated. I was a bit sore the next day but Tylenol and rest helped.

ps- about day 5 -I was very concerned about a lot of things happening. My wife said "Lets see if Hawk has time to talk". He called and we talked for a good 45 minutes. My mind was at ease and I knew I wasn't alone. That was a huge relief and I just want to say thanks for the ability to PHONE A FRIEND!
Special thanks Hawk! You rock!

pss-* Dr. Carrion is the Urology department head at University of South Florida who has mad skills but his staff response time to questions and everything about Tampa General absolutely sucks.*


til later or until 2 week follow up with training on cycling. Waveboy out!

[Hawk]

This is not just an expression.  I honestly did not know whether to laugh or cry reading this report.  I wish I could give you both a hug.  I wish there were some PDS Forum war medals I could officially award to both of you.  The PDS Medal of Honor, a Purple Penis Award, and several others.

This great articulate post leaves me with so many comments I want to make that I don't know where to begin.  One thought is that this pretty much illustrates how strong the drive is to have sex.  What other reason would make someone elect to go through such an ordeal?  I doubt anyone would endure this to be two inches taller, have a great golf swing, or have movie-star looks.  When this is all working as planned, hopefully, you will never get bored with sex. 

Keep in mind that you have had so many years of issues with Peyronies Disease, and PE that even when your penis becomes unstoppable that it will take months for your brain to catch up.  You will have to form new pathways of thinking.  You will evolve into completely different sexual thought patterns and behavior.  It will be an exploration to rival any Star Trek voyage.  Merrix touches on this some in his journal.

PLEASE keep us updated.  We must at least have the closure that the goal was realized, the quest was completed, and the two of you finally have what you deserve with each other.  What a team!!!  This journal will have the special recognition it deserves.  I just have to figure out what that is and how to do it.

You are both in my prayers.

[Mikel7]

All I can say is "Wow"!  You have been through the fire so to speak.  You still have your sense of humor.  I laughed when you said, "I felt like a rotisserie chicken in the bed".  I got a visual with that.  You are an example of strength and courage to us all!  I pray for continued strength and healing for you and your wife!

[TheBoykinLady]

Thank you Hawk.
It has definitely been an experience, to say the least. The now funny part is my hubs only hit the high spots with his post. There was so much more going on that kept me thinking "How do these guys even survive if their wives aren't nurses?". I was, and still am, dumbfounded by it all. I guess anyone else would have had to be admitted to the hospital but Tampa General is a horrid place.
I don't know how they made US News Top Hospital 2021. I know it's a teaching hospital but man, the incompetence is astounding. The good news is Dr. Carrion operates at 3 hospitals and has 3 offices. If anyone is interested in using Dr. Carrion, they have other choices besides Tampa General.

I will say that with Covid precautions, from my professional opinion, I would not recommend having any surgery unless it's life threatening anytime soon! It's a huge pain in the rear end and creates many non-Covid risks
for the patient, at any hospital observing the restrictions. Nursing shortages, supply issues, and general lack of morale, are clearly a problem.

His Home Health nurse was no help at all either. That was just another appointment to disrupt our days.. 

I do want to say that my hubs has been a very good patient through all of this. I know if the rolls were reversed, I doubt I'd have been as accepting .

Mikel7 thanks for the prayers and good wishes. We very much still need them!

[Waveboy]

Thank you Mikel7. For the first 2 weeks the only thing I could control was my sense of humor. Only showed breaking down around my wife. She is and has been my anchor!

Thank you again Hawk. We read and read and read this forum throughout the waiting time trying to prepare(insert 6 types of new underwear and empty toilet paper rolls lying around in the water closet here and thanks for the heads up Merrix, literally !). But waveboy's luck proved otherwise. Yes, its been a rough month. I just realized after reading your comments about how life (sex life) will change mentally and physically. I always look at the brighter side of things. Yes sex has always been at the top of my list and I just didn't want to accept, no I refused to accept, that at age 48 I was never to be able to have sex with my wife of 16 yrs ever again. Yes I had my fears, but my anger from doctors telling me that I just had to deal with what I had and nothing could be done overruled my fears. Again, I still had them don't get me wrong. Yes, I am still in the nervous phase, but prayers, love and support, from my wife and the support from you Hawk and everyone in this forum is helping me get through it and hoping that I (We) can possibly help someone else!

Today Nov 1st-28 days post-op.

I am sore in my scrotum for the 2nd day in a row. Just realized that the pain is where the pump was resting and its where I thought it was stuck to my skin. Surgeon showed me how to move pump and I have been slowly doing it daily. The pain is when the scrotum tightens up or when I walk and the pump moves over that area of skin that it was stuck to and it is very sensitive. So just another adjustment. At this point, if this is the worst part of IPP  surgery, I will take that.....with some Tylenol.

Again, just to say thank you for the prayers and the education from everyone and thanks and lots of love to my wife!

waveboy out!

[Hawk]

Especially with the scrotal approach, the scrotum is far more painful than the penis.  It all just takes time.  It is difficult to believe at this stage, but you can push the pump bulb so hard one side of the bulb touches the other with zero discomfort. 

I don't want to give you something to obsess over, but the one concern is if you feel the bulb actually adheres to the wall of the scrotum.  That is a sign of infection. On the other hand, if the scrotum is relaxed from heat, you should be able to slip the scrotum around with it sliding freely over the pump.

[tshug]

Waveboy, that was a great report. You and your wife make a great team! I’m very thankful for my wife helping me through my recent revision surgery. I had to laugh at Hawk’s comment that none of us would go through this to gain 2” in height, so true!

You’ve gone through quite a bit so far and hopefully the rest of your recovery will go well.

[Waveboy]

thank you tshug for your thoughts and prayers. Always great to have a team especially at home with my wife. To all others out there that doesn't have a wife or significant other to support you, take advantage of the team on this forum!!!!

as far as getting taller, a better golf swing! This is hilarious! This is my personality of joking when not in pain! Passion is my drive! Passion with my wife. 2 things I have had to deal with my life is hemophilia and passion! So thankful I married my wife in 2004! I didn't have to hold  back my passion anymore because I found  the right woman! The LORD put her in my life! So I was determined when Doctors said I couldn't  anymore, determination kicked in to get my passion back. So my emotions are all over the place and knowing all others didn't keep me down! Today and each day after this is a great day!!!! So someone else can try for the 2" taller! hahahahaha.

Again I suggest and recommend anyone that doesn't have or feel like they do not have a support group please lean on this team with hawk and all others on this forum!

On a lighter more positive note. I walked 1/2 mile this am and 1/2 mile in the afternoon!  Not winded and not sore! Thank GOD!

waveboy out!

[Waveboy]

Alright I am at week 5 post surgery

Dr. still doesn't want me to cycle due to area at shaft of penis still not healed. This area as of now is the only sensitive area from my whole surgery. Very tender when underwear or sweatpants hits that area.

I am still walking twice a day and still slowly moving pump around in my sac, and getting feel and knowledge of pump anatomy. Some area's of skin are sensitive where pump is leaning up against so i try to adjust or move it around as much as I can a couple times a day. These cooler days doesn't help due to the sac is pulled up tight.

I had to go to brief's and not tight boxers due to when walking the skin on the sac would stick to my leg and move things around and having a pinching feeling. Looks kind weird in public when you stop to swing each leg out to get rid of that feeling.

Emotional state is still up and down mainly trying to stay up. Just trying to look at positive side of things because I'm on the downhill side of things. Ready for shaft site to heal so focus can be on cycling.

Thank you again to the forum for all the updates and things everyone goes through. We all are human. We all need someone and a group like the forum to lean on. So again thank you to my wife and the forum!

waveboy out!   

[Hawk]

Every day you are a day closer to the fruits of your decision and all your combined efforts.

I think I am as anxious for your to start cycling as you are. 

[Waveboy]

Thanks Hawk

Yesterday I past another mile stone. I know I'm not supposed to start cycling yet, but I had to find the deflate button and test the pump. Not to do anymore than a few pumps like doctor did in office last week because I don't want to test the stitches.

So off I go. Kicked back in the recliner and I find the release button. Oh by the way to let everyone know that out side from all that I had done just to add to my physical history. I have a essential tremor(family tremor) so my hands shake mildly on a normal day and worse on a bad day, pain day or using alot of strength with my hands. So again off I go and find release button trying to get grasp on the pump and press valve without it slipping, trying not to let button go from my fingers shaking and wondering how the hell I will come up with 3rd hand to squeeze penis down. I get button pressed and feel this small vibration in pump for about 1-2 secs but it only vibrated twice on the 5 times I pressed the button with deflation twice? Have to ask doc that ? next week. Anyway I was excited I figured out the deflation!

The pump on inflation was a totally different ball (haha) game. Every time I went to go and squeeze hard ass bulb it would pop out between my fingers like busting a grape open! That's a pinch you don't forget. I had to take other hand and hold back of pump in place then still trying to squeeze that thing! shout! About every 5th push I felt bulb concave a tiny bit. Something was happening because I got it up to where the doc had it before tightening stitches! Holy crap I did it! I looked at the time I thought an Hour. WTH! But then I thought I DID It!!!!

All in all I went to bed Knowing I am a man again physically and mentally! Small steps baby!!!!!

start testing a little each day!

waveboy out!!!!!

[Roddy]

Hi Waveboy

I’ve just read your journal here from start to finish. Fascinating stuff from you. Thanks for sharing in such intimate detail. There were, indeed, some laugh out loud moments in there - particularly when you said “you don’t want to piss that nerve off anytime soon”. I laughed cos I remember similar, excruciating, breathtaking pain. It really did take my breath away at times. However, you are now at week 5 and by far you are over the worst of it all. You have shared some very dark moments there and it’s so valuable to do that because what you will experience now, from this moment on, makes all the pain worthwhile. I remember those early days too, when your 3rd ball would shoot out of your fingers as you were mid-squeeze. Nothing can prepare you for that one and we have all been there!! 🤣

Heartening to read that your wife has been your anchor as you say. At aged 48 you have decades of your fantastic relationship to enjoy and explore. You’ll be like a ‘kiddie in a sweetie shop’ as we say here in Bonnie Scotland. So much exploring of each other that was never possible before - but now that you’re bionic, your PE will become a very minor irritation to you only now, as your wife won’t even know whether you’ve cum or not - you’ll still be rock hard til you press that magic button.

Respect to you for your journey and for your journal.

Roddy

[tshug]

Waveboy, that you’re feeling feeling the vibration pressing the deflate button is great, you’re doing it right. You should squeeze your penis after feeling that sensation to completely deflate the CX. I had a CX before my revision and that’s how my CX worked. To inflate you should give the pump ball one quick hard press to start wait a couple of seconds then start pressing the pump ball again. On the second or third pump I would feel a pop in the pump and the rest of the pumping would be much easier. It will get easier the more you practice inflating and deflating.

Good luck

[Waveboy]

Thanks Roddy for the light at the end of the tunnel!

Thanks tshug. Did they switch you away from cx just due to the severe under sizing? or was it something else to do with cx? I haven't felt the vibration on each of the deflation but button works with deflation either way. Just didn't know if was a problem or not. Thanks for the heads up on pumping. Still have to figure out a way to grab it without it slipping to get that pump on! I will look and feel for that pop. earlier today I achieved a full deflation or the most I have achieved yet. I will try again on the pumping this evening. I figured I could at least do it up to the inflate before pulling of stitches. At least that would give me practice. Especially since doc office just called and moved my follow up apt another week out.

So a ? for anyone. I achieved what I felt is complete deflation and I can feel the cylinders starting to fold. Is this safe for long periods of time? Mainly 10-11 hrs while I am work. I wear scrubs and I need and choose to conceal this new bionic tool.

waveboy out!

[tomas1]

I'm glad you've almost completed the journey.

I always grab the top of the pump where the tubing comes out to hold the pump when squeezing the bulb with the other hand.
My hat's off to anyone who can inflate with only one hand.

[Hawk]

Inflating with one hand is doable but risks the pump bulb (that resides on the slippery side of the scrotum skin) shooting out from between your fingers.  To those without an implant, it is something like putting silicone oil on your fingers then squeezing a marble as hard as you can until your grip is slightly off-center and the marble shooting out of your grip and across the room.  In the case of the pump, it usually gets its path cut short by striking a testicle, much like shooting a marble with a big shooter to those who ever played that game.

I think we have all done it, but the instant unpleasant shock and awe are enough to instruct you on how to avoid it.  I usually lay the index finger of my other hand very lightly against the pump bulb to prevent that.  If it happens after you are totally healed, it is not pleasant, but it is nothing like it is when your entire scrotum is still sensitive from surgery.

The AMS/Boston Scientific is significantly easier to deflate than a Titan.  In fact, some think their pump is defective because they accidentally deflate it while inflating.  I don't think it is possible to accidentally deflate a Titan.

[Waveboy]

Thanks thomas and hawk.

great example hawk. Yes on the deflate while inflating. The reason I can see that is if you holding the pump trying not to let bulb slip out of you fingers and you don't realize or feel the button on the released valve you might be pressing it at the same time. I know some people dont have great feelings in their fingers. Luckily thats not me.

Thanks again for advice. Will be trying again today. On the pump up. I am getting better on the release / deflation. Baby steps right!

waveboy out

[tshug]

Waveboy, the decision to go away from the CX was Dr Eid’s and my choice. Dr Eid felt and was right that the Titan was the best choice for me. There was nothing wrong with my CX other than my surgeons incompetence on how to correctly size one. I would have preferred a Titan for my first implant, but my surgeon/hospital only offered the AMS CX or LGX and he probably would have mis-sized a Titan too.

[Waveboy]

Thanks tshug
 
Just trying to fig all my bionic's. Trying not to get frustated

[Hawk]

Waveboy, you will be everything except frustrated in a few weeks. 

IF you are straight enough for intercourse and your girth is very close to what it was the week before surgery, the Titan would have given you no advantage.  The cylinders start our a litter stiffer when new, and the pump takes a little more dexterity to operate.  If you have a hand tremor, that could be a disadvantage.

One could argue that you might have avoided the surgical work on your plaque with a Titan and a different surgeon, but that would be a guess, and that is water under the bridge.  It might give you a little longer recovery, but the final outcome will be the same.  You and your wife pulled off an amazing feat considering the obstacles.  I would probably still be sitting here with no implant trying to figure out my options. 

[Waveboy]

Thanks again Hawk.

Yes my wife and I went through a lot. Yes I say both of us because we are a awesome team! I went through a lot of physical stuff as most of you have been through on this forum. 95% of the time my emotions are in check and I am looking at the positive side of things. I am one that tries not to ask for help but this is out of my wheel well and I am truly thankful. I just worked again on inflation again and it worked better. Just gonna take time. sorry for the jumping the gun on concerns, but I am getting better responses here than waiting on doc's office to call back.

thanks for showing light at end of the tunnel!

waveboy out

[Roddy]

You’ll get much better response in here than from a doctor. Not saying anyone knows better - just that they’re eager to help and reassure, and offer help if we know the answer. Don’t worry about the deflation - Hawk had told me more than once to try and remember from muscle memory where the button is. One day it just clicks (pardon the pun) and then you simply reach for deflate with no thought process from that day on. Remember how ridiculous it was to change gears in a car, whilst braking at the same time and checking your mirrors and indicating? Then you’d think it ridiculous if anyone told you that was a difficult thing to do in life. 🤣

[Waveboy]

Thanks roddy

yes I am running with the muscle memory and changing gears, fixing mirrors. I am just glad others have been through this and chat about it in this forum. I know it was just 5 wks since I had my surgery and all the time before then with all the problems. I am just amazed that 20+ years in the medical field and all the people I have met and friends and family I have never heard about all of this. So again I am thankful for Hawk and this forum. Things are working out better each day!

waveboy out!

[Waveboy]

So an update. 5 wks post surgery

So correct me if I am wrong. Between asking ?s about this pump and my bionics. I have learned how to grab hold and deflate good and how to grab and press bulb in without it slipping! What I think I have figured out is that I was looking at all the wrong things. I thought with 35+ pumps I would be all I could be. I was rushing things is what I have learned. This evening I was able to get 15 great pumps and it was inflated and strong! Yes much shorter than before, so I tried pumping again and the bulb was rock hard. Then after taking a breath a light bulb clicked that all this is new and hasn't had time to stretch so 15 pumps is all cylinders would hold. Remembering comments yal have given me I took a moment and let it sink in!!!!! Waveboy this is not a race its a marathon! I  do feel much better and stress level wayyyyy down.

thanks again

waveboy out!!!!

[Hawk]

Waveboy, first of all, you are not supposed to be cycling due to the surgery on your plaque area.  Do NOT screw this up with impatience because, after years, you cannot wait a couple more weeks.

There are partial pump squeezes and full pump squeezes.  They cannot be counted the same.  A full pump squeeze where the walls of the pump touch each other equals a one-pump. Anything else is a partial pump.  After pumping all you can (WHEN YOU ARE CLEARED), you can wait several minutes and usually do 2 or 3 additional partial pumps because the tissue has stretched some.  With a real stretch, your penis will have a LOT of discomfort after 20 minutes.  It will be screaming to deflate because the tissue is stretching.  If you measure, you will see an almost weekly increase for at least 3 months, maybe much longer.  Fully pumped, your penis will be at least as hard as a 17-year-old.

[Waveboy]

I agree with you hawk.

It stops before it get tight where the surgery it was, but I will stop and keep it deflated if it will not hurt anything to be deflated until the 19th of Nov. Your thoughts? as far as your description on pumps it probably got 5 full pumps then 10 partials at best today but I will leave deflated unless I get different answer from you or an update on follow up.

thanks for your opinion. Always respected.

waveboy out!

[Waveboy]

To add to my comment last night hawk. I have only tried pumping up 4 times since i saw the doctor last. Mainly to prove to myself I was able to do it and when I went back to the doctor on the 19th I wasn't learning it then and there in the office and be in extreme pain.

I do not want to screw anything up for sure! Asking a lot of ?s here so when I get to the doc on the 19th I can ask the same and see what answers I get. Just for confirmation.

Again I appreciate everyone's comments! I will be checking in daily here. I go back to work on the 12th to see if I am cleared in the medical field to work. Doc has cleared me for past the 11th. My follow up with doc was supposed to be the 10th but they moved it to the 19th due to doc not being in the office.

So as far as an up date. I am walking 1-2 miles a day to build up my energy level and not be winded. No pain just a a mild dull discomfort in shaft here and there. Just taking 1 tylenol a day.

waveboy out!

[TheBoykinLady]

Hawk, thanks for keeping him in line. I had no idea he was pumping. Now Waveboy is going to have to walk around the house in his underwear until he goes back to work on 11/12 so I know he's not misbehaving .

Roddy, thanks for helping too.

This has certainly been an experience for both of us!

In all of my years of nursing I've never been asked some of his questions and have no idea how to answer. I never had an IPP patient. Thanks to each and every one of you that have helped us learn. I have a mad new respect for uro nurses.

Waveboy has officially been evicted from my recliner. He has recovered enough to get busy doing things and quit obsessing over details that he shouldn't be, at this point in his recovery.

The fact I am on here telling you guys all of this, is a testament to his speedy recovery. That's a great thing because he needs to get out of my house. LOL

Much love to you guys!

[Hawk]

It is amazing the things you can learn about your husband when you read his posts 

Hopefully, he can get his penis to hang enough that he can go to work without it sticking straight out or you might have to follow him when he leaves the recliner and goes on walks

[Waveboy]

So start of week 6 post op.

Feeling good with no pain or discomfort. Was told by my private nurse to leave it alone and stay deflated. So I am still letting area on the shaft heal. Still walking 1-2 miles a day.

I go back on the 19th to get educated on how to use pump and deflation per how the doctor says with this model. I do thank everyone for how they use theirs. Sometimes I get ahead of myself. I am not one of those people that can just sit around. I have to be doing things do I will overthink things. So my private nurse/ wife has banned me from the recliner. I have 5 more days out of work but she will put me to work today.

So I will update as I go.

waveboy out!!!!

[Mikel7]

Walking everyday is very good. I walk about 1.5 miles each day.  The recliner should be taped off for you.  Good report!

[Hawk]

The recliner should be taped off for you.

With "Crime Scene" tape !  The scene of unauthorized pumping 

[Waveboy]

HaHa Mikel7 and Hawk take the side of the woman!

Don't worry I would also!

Been busy all day outside with my 5 lbs weight limit. Did a mile this morning and a lot of movement this afternoon with yard work walking and riding golf cart.

Just a little sore nothing a little tylenol cant handle.

Try some more tomorrow. So I get minimal time in recliner. Observed of course!

waveboy out!

[Waveboy]

waveboy here.

so last week, the end of week 6 I had my follow up with the doctor to get clearance to start cycling. Woohoo all wounds and stitches cleared to start cycling! Very interesting visit. The doctor made couple of pumps and then deflated and tugged on the pump stating I need to start pulling pump down more. That was the only sore part is when he tugged on the pump. So he said you do it. So I got in my stance and grab the pump and bulb (because I didn't want it to shoot between my fingers like a grape again and put me on my knee's). I got one great pump in and I was like woohoo Off to the races we go. The doctor was on the computer typing while I was in motion, and I let the bulb go waiting in it to inflate/ fill up again like he had done, but it stayed compressed and I thought WTF I broke it. So I was like doc whats up and he never looked up from typing and said give it a sec and keep going. So my second turned into 10-15 secs and again I was like Doc whats up! He turned and felt it and was like hmmm haven't seen that and tugged on pump again moved things around and it popped back open. Now try again as he said. Of course I lost in what to say but I went back at it. I got about 12 pumps in and felt the tension in cylinders. Hot damn I could have a hard on again without the curve! Then he said deflate and in my mind I was thinking I just got it up! He told me I would have to work on full deflation but it would come in time. I needed to cycle at least 2 times a day for an hour. That drive home was probably the best drive home from tampa because things started working. Thank GOD!

That visit was Friday Nov 19th. So of course bright and early Sat morning I wanted to start cycling ( it had been 6 weeks and I was clear to cycle!) but he did say it was gonna be 3 more weeks before sex! that was the depressing part, but I will take the cycling part. So I got into my reclyner that my wife/ home nurse said I could get back in did the first pump and the damn thing stayed compressed down again! WTF! Didn't happen to the doc when he did it and now twice when I did it! Ok ok waveboy just calm down! So I tugged on the pump shuffled things around and boom it filled back up!!!!! So I went back to pumping making 12 great pumps where it compressed all the way down then bulb got almost rock hard so I figured best way to get death grip on bulb to make several puffs. I would wait about 2-3 mins once shaft was tight feeling slightly uncomfortable and when the bulb would let me I would get 2-3 more great pumps and more puffs. So saturday was interesting sore but tolerable.

So each day Sat and Sunday I cycled twice a day. Then monday morning came and it was work day. Unable to spend time for 1 hr cycle in am when you get up at 5 am to be at work at 630 am without a bonner in a set of scrubs! So my cycling with have to be in the evenings! I spent most of my days monday, tues and wed trying not to show anything at work so several times each day I would have to go to bathroom to deflate. Don't know if its running back into my penis after deflating from pressure in pouch or what. Lucky it was a short week at work for the holidays. Each evening I was able to cycle for and hour( thankfully the bulb has not compressed and stayed down anymore cause that was scary). It still takes me close to 30-45 mins to get pumped up to the uncomfortable tightness. I get about 5-6 good pumps then bulb gets so tight that u can't squeeze it. I will get couple puffs. Then I am tugging on pump downward then resting a few mins then bulb will let me get 2-3 more pumps. Hopefully that's how I am supposted to be doing it! I'm just glad I see a hard on!

I tried a bath and cycling and there was no difference in pumping. bulb still tightens up and I am no where close to full. So I change positions. I have cycled laying in bed, in bathtub, reclyner, standing and laying in bed with legs bent. No change in couple great pumps then bulb to tight to pump then changes to puffs. after 2-3 mins get those 2-5 great pumps. So we will see.

Today is 1 week since starting cycling. Still the same with pumping. I am getting better with the emotions of being aggrivated about the bulb pumping. I'm just doing what I think is right. I am getting way better at deflation where it is complete deflation! Still working on the keeping it deflated without it draining back into penis. Sometimes I give a pump after deflation and that works.

Once pumped up I am still showing 2 inches shorter in length than before peronies. Thickness is almost back to normal. But reading in the forum I just need to give it couple months. I am thankful for all the positive things that this brought me.

If any suggestions or statements let me know.

Waveboy out, thankful and blessed!

[Hawk]

Great report, WaveBoy!

Only one thing makes the bulb stay collapse.  It cannot get any fluid from the reservoir.
Only two things can cause that
1. You are out of fluid because you pumped it all into the cylinders OR it leaked out because of a break in the system
2. You have a crimp in the tubing that goes from the reservoir to the pump.
You obviously have the 2nd one, or moving things around would not correct the situation.  I don't recall hearing about that before, but at least you are getting it to work.

You sound like you are auto-inflating during the day.  If you cannot resolve that within the next ten days, it is very likely to be an issue for as long as you have that implant.  The only way to resolve it is to stretch the scar capsule around the reservoir.  You do that by drawing every drop you can from the implant both in front of and behind the scrotum.  You then have to keep it deflated to stretch the reservoir capsule.  You can either sit with your penis in a vise or wrap it very snuggly with Coban.  I would opt for the Coban.

Size - unless you were undersized by the surgeon, the size will come back.  You can tell if you are undersized by feeling how far the tips of the cylinders extend into the glans.  The two cylinders should be close to equal length and extend at least 1/3 of the way or further into the glans.  If your glans droops when inflated, it is a sign you are undersized.

If there is no evidence of being undersized, then keep doing what you are doing.  I do not have an AMS pump, but you should be able to pump until the stretch is quite uncomfortable.  Remember that you cannot pump hard enough to damage your penis, only hard enough to make it bigger.  The more discomfort you feel, the more stretching you are accomplishing.  Increase the number of pumps and the duration.  If you cannot do a BPEL because you are too sore to press the ruler to the bone, you still have some swelling that makes ou penis seem to be shorter.

Three Questions:
1. How is the girth?
2. What angle are you when totally inflated?  Parallel with the floor is 3 O'clock. 
3. What angle are you when deflated?

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