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By Chris Arnold
Stage1 of 2-Stage Surgery
Tonight is the night before I fly to Edmonton Alberta where I will be having my first stage surgery this Friday at the University of Alberta Medical Centre. This facility is one of only two places in all of Canada where this procedure can be done.
It has been a roller coaster of emotions since I got my surgery date three weeks ago. I was very relieved and happy to finally have a date after waiting almost 6 months.
Now this past week has been very emotional as my nerves are starting to get the best of me. I’m getting scared. It has been almost 16 years since my last major surgery for hypospadias back when I was 19 yrs old. I’m older now (36) and although medical techniques have greatly improved, my worry is that the 20+ surgeries I had by the age of 19 were not very successful. It seemed is anything could go wrong back then, it would!
I had stitches burst, blood hemorrhages (hematomas?) infections, major scar tissue, and even three emergency blood transfusions. So many bad surgery memories all flooding back in my mind and It is scaring me to death!
One blessing now is that I have a wonderfully supportive wife, Mel, and she does anything she can to help me through this.
Another great help this time around is that I have the HEA. I have received emails these past few weeks from over 6 different HS/ES guys who really do know what I’m going through. It really has helped me keep sane. I wish I knew all these guys back when I was a kid going through all those surgeries thinking I was the only kid out there with a deformed penis!
Today was travel day. Up at 5:00 a.m. to finish getting ready to go, off to the airport at 9:00 a.m. Fly to Vancouver, BC where we wait for 3 hours or so, then fly to Calgary, Alberta, where we wait some more and finally fly to Edmonton Alberta where we will be staying.
Upon waking up I looked outside to find approximately 3” of fresh new snow on the ground… our first snow fall of the year! In the old days that would have meant the airport would have been closed down, but now thanks to new radar landing systems the planes can land in almost anything.
The travels started off ok, but by the time we were leaving Vancouver, I was starting to get very sore. My bladder was aching, and the testicle was starting to have shooting sharp pains.
By the time we got to Calgary, I was feeling very tired, my lower back was killing me (Kidney area) and of course the testicle was in real pain now… popping more Ibuprophin.
That last short flight to Edmonton was not a comfortable one at all. But finally we were here.
It was -15 degrees (Canadian temp.) and blowing wind… burr, it was freezing cold here! Now we have a wild and somewhat scary $50.00 Taxi cab ride to the hotel downtown. We arrive at the hotel at 8:00 p.m. which was 11 hours after leaving home this morning!
I collapse on the bed after a check of my emails. Mel, fills up the tub as we were please to find a Jacuzzi tub in the hotel room! I spent about 30 min in the hot tub, which felt very nice of course, but didn’t really relieve all the built up pains from traveling for 11 hours. Off to bed.
Of course I could only sleep for as long as the Ibuprophin would work (about 3 hours) so I’m up and wide awake at 3:00 a.m. then again at 4:00 then at 5:00…. My bladder hurts so bad I can almost not even bear to sit up in the morning. It's not all that full, judging by the amount of urine I pass first thing, but man it hurts. Any time the bladder is hurting, it is like a pain connection straight to my testicle… if one hurts, so does the other. My bladder will start to spasm with pain and I get immediate electrical shocks of pain shooting down into the testicle. It doesn’t seem to matter what position I’m in or what I do, unless I load up on the prescribed narcotics, which have run out now and I didn’t get a refill as I want them out of my system for the operation!
So on top of everything I’m probably also experiencing some physical withdrawal symptoms from the narcotics I had been prescribed for almost a full year!
Today is Pre-op clinic day for me at the University of Alberta Medical Centre. I need to find my way to the Day Surg. Department by 12:30 p.m. for what should be a 2 hour appointment. I hope to get a bit more information on my surgery and what to expect afterwards, but it may just end up being a bunch of blood tests?
I’m tired after not sleeping well last night, so hopefully all goes well.
Later that evening… well the 2 hour appointment turned into a 4 hour ordeal which saw me waiting around in a cramped waiting area for 3.5 hours! I was very annoyed to put it mildly. My testicle was shooting sharp pains, my bladder and kidney area were killing me, I was hot, and annoyed. Oh well. Considering I’ve been trying to get this resolved for over 3 years I can probably wait 3 hours.
I found out that the surgery will probably be approx. 3 hours long.
The nurse told me that the doctor has done many of these surgeries with excellent success rates. That was good to hear.
That night Mel and I went out for an incredible dinner, one of the best restaurant meals I’ve ever had in my life! Then to a movie. I was pretty sore and tired by the time the movie was over so back to the hotel and off to bed.
Today was shopping and spa day! My wife and I are avid shoppers, and our hotel just happened to be right in a huge shopping mall!! I had to shop slowly as I was in a lot of pain today. I took lots of stops and sat down often. We shopped in the morning and then Mel had booked us both in for different treatments at the Evelyn Charles Salon. I had a “Man Facial” and back massage with aroma therapy. It was relaxing and nice, and two hours and three hundred dollars later we headed back to the hotel room to rest before dinner. Although the spa was very nice and relaxing, my pain level jumped quite dramatically afterwards. I had a hot bath and tried some deep breathing and meditation… this helped a bit.
We went out for dinner to an old historical part of the town, it was nice, then back to the hotel to have a fleet enema, and take some photos of my penis ‘before’ surgery. After as I cropped and saved the photos on my laptop computer I was a bit disturbed by the photos, especially the ones showing the underside of my penis… they looked terrible. The photo quality was good and it was an accurate depiction of what I look like but I never see the underside, and purposely never look under there… that’s where all the bad scars are, and they are the things that bring up the bad memories of many many failed surgeries in my youth!
From the top I was never really bothered by the look of my penis… I thought it looked pretty ‘normal’. I also was never really bothered by the look of my penis when erect… I felt the size was ok (don’t we always want more?) and it always worked fine for me when having sex. But is was the underside that really showed the mess that the doctors had made of me… and after seeing them I was more determined to have the surgery tomorrow.
Oh, I also got the surgery time today… 11:00 a.m. so I need to report at 9:00 a.m.
It is now just after midnight, and I’m supposed to be not eating or drinking anything… I think I’ll go take some gravol as I’m feeling a bit nauseous. Then I’ll try to sleep. I doubt if I’ll sleep much as I’ve drank a lot of water tonight so I’ll be up most of the night running to the bathroom in pain as I try to empty my bladder.
Well its 5:00 a.m. on the morning of surgery and I’ve been up for about an hour. Mel is still sleeping, so I’m trying to be quiet.
Coffee… man, I’d kill for a coffee! ‘Nothing to eat or drink’ of course.
I drank so much fluid last night that my bladder is throbbing in pain right now. It hurts so badly that if I didn’t know I was having surgery I’d probably be going into emergency. So now I just wait and count the minutes.
It has been a bit of an emotional roller coaster, especially this past week. I’m worried about a number of things, including:
1. The success of the surgery.
a. I’ve had over 20 major surgeries over the years (this doesn’t count many cystostopy’s and other such procedures) and none have really worked.
b. It seems with me that if anything can go wrong it will… infections, stitches breaking open, mistakes by doctors / nurses, etc.
2. The pain that I will be in right after surgery.
a. Oh man, they are cutting the inside of my mouth right out! Ahhh that thought just makes me want to vomit. I hate canker sores, let alone my whole mouth being raw!
3. I had a bad reaction to my last anesthetic.
a. It was like a cross between a seizure and a stroke… I’m only 36 and it scared the hell out of me and my wonderful wife Mel.
4. Will they be able to harvest enough skin from my mouth to do the job right?
a. I don’t want them to run out and then have to have them give me a shorter penis due to lack of skin!
b. What if the graft doesn’t take… can they do the skin harvest more than one time… or is this a one shot deal…
5. Does the surgeon really know how bad the scar tissue in my penis really is?
a. He only saw the inside through the cystostopy, I don’t think he will really appreciate how bad it is until he starts cutting into it. Will there be any usable tissue left down there?
6. Will I get an infection that will jeopardize my skin grafts?
a. This usually ended up happening in previous surgeries, this really freaks me out.
7. Oh my god, what about Erections!!!!! #($*%&)#$(*&%
8. How will I survive the trip back home to Terrace with all my stitches and tubes?
9. Will my wife have the patience needed to take care of me after surgery and after we return back home to our busy lives?
a. We have a beautiful house, filled with animals… we own two dogs, a number of tropical fish tanks, koi fish pond outdoors, and the biggest use of our time is our 6 large exotic parrots! Yes 6, and they are spoiled to death and a very time consuming part of our life. The parrots have specific routines that need to happen every day including having fresh dinners prepared every day and LOTS of cage and house cleaning every day. They all talk and all have very large social needs. Mel is going to have to do the majority of the work with the parrots, when usually that is my job. It is not an easy job. I worry she will get frustrated with me (I would I think). She swears she will not but I’m worried about it. It’s a lot to expect of anyone.
10. What else will the Doctor find when he operates… i.e. bladder cancer or kidney problems?
a. Honestly, my bladder hurts so badly, and constantly that it feels like I have a big tumor in there. My kidneys are also hurting and have been for much of this last year. I’m worried about what damage has been caused in my kidneys and bladder because of three years of waiting to find this doctor and this surgery.
OK so as you can see my mind is racing. I think I have to just do something to keep my mind off all these issues…. And off the fact that I’ve been up for an hour with NO COFFEE!!! I LOVE COFFEE!!! I drink a lot of coffee every day… I am a coffee connoisseur…Ahhhh!
I’m going to go lay down and try to watch tv.
It was quite amazing as far as my mouth went… It was swollen 3 times the size of my normal chubby cheeks, and I think I was scaring people, but inside, I would touch the cheek with my tongue and I could feel stitches everywhere and lumpy skin, but it didn’t feel raw at all? It didn’t even really hurt on the inside, just on the outside.
My face in general hurt a lot… just that aching pain like I’d been in a really bad fight and had my face beaten multiple times. Ice helped a bit, but the tiny bit of morphine they were giving me just gave me a headache and made me more angry more than anything!
Now I’m starting to feel the pain from my penis a bit. Really my face hurts more today than my penis does. I looked down there and it is wrapped up so tight it looks like a cast! Its very well protected which makes me feel good. You can just see the tip of the glans so the doctor can poke it each day to make sure the blood flow is still good! The catheter is coming out from the bottom of the bandages, at the base of the penis, which I knew would be the case as that is where the temporarily new meatus will be located for the next six months.
I’m drinking like crazy, the ice water feels good on my mouth and I just love the feeling of being able to drink gallons of water and not have terrible pain in my bladder! Of course every time the nurses look at the catheter bag they say “Oh My Goodness!” and run to get the bucket to empty it before it burst!
One think I CANNOT DO under any circumstances, is smile!! Which is very hard for me as I am generally a happy smiley person who loves to laugh and I love cracking jokes, especially when I’m feeling pain. This is because of all the stitches inside my cheeks. I can’t open my mouth very wide at all and I absolutely cannot smile!
Today the swelling on my face has gone down a little bit, but It still hurts quite a bit, and they still are not giving me any drugs that will actually help relieve it. I was up almost the whole night as I couldn’t sleep.
Mel brought me some cream soup, which was wonderful to sip on. I even liked the jello from the hospital tray!
Mel said she emailed the people on my after surgery email list, Mississippi Pete, Greg, Barry, and others to let you all know that I was alive and doing reasonably well. I sure am thankful that I found all you guys through the HEA. Your emails and posts on the message board really did mean the world to me, and gave me the courage to go ahead with this surgery!
I had a bit of a rough day today. The nurses I had didn’t seem very bright… they just didn’t seem to know what they were doing, they seemed very confused about everything and I never saw them unless I was ringing the bell.
I’m getting a bit frustrated about the pain medication issues… If a guy doesn’t need to be in pain after such a traumatic surgery, why make me be in pain?
My background is in psychology and I understand addiction very well. I realize I will go through some physical withdrawals after leaving the hospital but I know what those are and I know they are simply temporary… why do they always have to treat you like you’re a drug addict just because you would rather not be in pain!?! If the nurses had penis’ I’m sure this would not even be an issue!
I’m also going to ask for a sleeping pill tonight because life just always seems worse when you can't sleep.
I had a male nurse today and he was great! I really think that sometimes makes a difference. He was only on for a short shift though unfortunately. My mouth feels much better today… I’m even eating some more solid foods, which really amazes me! The swelling has gone down but is not completely gone yet.
More of my pain today is in the penis. It aches and every so often I get sharp pains. The dressing still looks good, and It doesn’t feel like its infected or anything, but its still wrapped up tight in the ‘bolster’ bandage. The Doctor said he will take the bandage off on Wednesday himself to check it out. I’m nervous about that. I know it will look terrible when I actually see my penis for the first time, but I’m prepared for it.
They finally agreed to give me a mild narcotic for pain but they tell me I can only have it two times in a 24 hour period….??? I don’t understand that? They say they gave me one at 1:00 a.m. this morning but I have absolutely no recollection of that… then the male nurse gave me one at 9:00 a.m. which was my second one for today. It is now 3:30 p.m. and my penis is hurting me a lot. They said they could give me a Tylenol… I wish they were all male nurses, and I could grab their penis and squeeze it as hard as I possibly could until they screamed in pain, and then I’d offer them a Tylenol.
My new nurse (Female) just came in to introduce herself and get my vitals. I explained my pain to her, and told her I was frustrated. She is going to see if there is anything more she can do for me… I already think I know the answer to that… Tylenol! If she says that my mild mannered personality could get ugly. I’m generally a very calm quiet person but even I can be pushed to my limit!
It is strange running my tongue along the insides of my cheeks and feeling all the stitches. It doesn’t hurt, just feels strange. I’m very happy the cheek think is nowhere near as bad as I thought it would be!
Now that it’s three days after surgery I thought I’d go back over my top 10 fears list that I typed the morning before surgery!
Here were my top 10 fears, and my answers now that surgery is over.
1. The success of the surgery.
a. I don’t know for sure, but I’m feeling very confident today about how things have gone! That could change on Wednesday when I see my penis for the first time, but I think I have pretty real expectations so I’m not all that worried!
2. The pain that I will be in right after surgery.
a. The mouth pain was really no big deal aside from that first night. The rest of my pain is a bit of an issue but it really doesn’t have to be if they would just give me a reasonable amount of medication! I think someone needs to advocate for this, we’ve been through enough psychological pain having our penis’ cut open multiple times… why make us lay here in physical pain when you don’t need to!?
3. I had a bad reaction to my last anesthetic.
a. NO PROBLEMS HERE! Yeah! The anesthetic went perfectly!
4. Will they be able to harvest enough skin from my mouth to do the job right?
a. I don’t yet know if they got enough skin from my mouth or not? The doctor said he feels it went very well so I’m hopeful about that. We will have to wait until Wednesday to see for sure!
5. Does the surgeon really know how bad the scar tissue in my penis really is?
a. I don’t know if he really did know how bad it was but he kept saying to my wife and I that “It was a terrible mess” so I think he may have been a bit surprised but he dealt with it.
6. Will I get an infection that will jeopardize my skin grafts?
a. I’m still worried about this one! Keep the antibiotics flowing!
7. Oh my god, what about Erections!!!!! #($*%&)#$(*&%
a. Thank GOD for the little yellow pills! They give me two per day to prevent the dreaded erections! And so far they have worked! I’m so relieved you have no idea!
8. How will I survive the trip back home to Terrace with all my stitches and tubes?
a. Well I only have one catheter…no super pubic tube this time! So the trip home will be rough but might not be as bad as originally thought.
9. Will my wife have the patience needed to take care of me after surgery and after we return back home to our busy lives?
a. I’m still a bit worried about this one. My wife is a wonderful lady, but taking care of me and our house and our parrots and our dogs is a huge job for anyone. I’ll just keep telling her how much I love her and hope she does ok!
10. What else will the Doctor find when he operates… i.e. bladder cancer or kidney problems?
a. My bladder is fine! Says the doctor. This is a huge relief as I was worried I might have a big tumor in there! I don’t know about the kidneys but I’ll ask him about that later. I’m drinking gallons of water and my catheter bag is filling up like crazy so the kidneys must be doing their job somewhat!
It’s 3:55 p.m. and my new nurse just came back with some Tylenol!!!! AHHHHH!!!!
I told her that I just had Tylenol two hours ago and it did not help even a little bit…. She said “OH you did? Well I can’t give you these yet then.!” And she took them back!
Hello!!! Does this seem right? Am I just over reacting? MY PENIS HURTS!!! Does anyone care? This sweet little 20 something female nurse certainly doesn’t.
I’m angry now. I think I’ll stop typing and try some deep breathing so I don’t end up beating someone with my I.V. pole! I’ll type more later when I’ve calmed down.
Later that night, it was 6:30 p.m. and I pressed the nurse call button. The nurse came and I explained that my pain level was now about 7.5 out of 10 and I NEEDED something other than Tylenol to help relive it. She said she would go right now and check to see what else she could do for me…10 min passed, then 20, then 30, then 40, finally after over an hour my new night shift nurse came in. That 6:30 p.m. nurse I spoke to had simply forgotten and left work for the day! AHHHHH! How angry this makes me!
So now it’s 7:45 p.m. and my pain level is at an 8 / 10 which is very high. I started getting more and more upset… the new nurse said they would try a morphine and Tylenol 3 combo ( I told her the morphine gave me bad headaches). I would have taken baby aspirins at this point as I hurt badly. These meds did absolutely NOTHING for my pain. You reach a point where if you don’t address it the pain (like at level 6 or 7) it gets very hard to get control of it at all.
I layed in bed moaning for 4 hours. During this time my body went into a real cold spell and my whole body started shivering, my teeth were uncontrollably chattering. From my experience I know that this type of think is a very good possibility of the start of an infection! I told the nurse this, and she gave me a blanket.
I started to break down, crying, I am terrified about the chance of an infection ruining this surgery. I think that finally my break down got her attention. She went away to return with some of the narcotic pills… finally! I took them and fell asleep.
I slept from about 1:30 a.m. until 3:30 a.m. then I snoozed from 4:00 a.m. until 6:00 a.m.
It was a rough evening.
This morning the swelling on my face has gone down considerably. It still a bit hard and tender on the right cheek but by tomorrow or Thursday I should be eating regular food again! I hope I lost some weight this week :)
A bunch of hospital staff came wandering into my room. I was still a bit disgusted after the incidents yesterday. There are so many different people working here and they just wander in and start asking you questions without even identifying themselves. That annoys me. Are you a student, a nurse, a doctor? Who knows?
Afterwards none of the staff communicate with each other, they ask me what the other said, or its up to me to get the information and recommendations from them.
I teach a course to caregivers and support workers called the C.A.R.E Concept, which teaches people in a caring role how to be congenial, acknowledging, respectful and engaging. I think the nurses and hospital staff could really use such a course… maybe I’ll leave some brochures.
I saw my doctor this morning and he said the bandages would come off tomorrow! We will have a much better idea how everything went after we gat a look at the grafted areas. He repeated that he is optimistic. I’m a bit nervous about that. I’m so worried that something will go wrong to jeopardize the grafts!
Wednesday, November 23 - 5 DAYS POST-OP - Bandage removal day
Well I got about two hours sleep last night as I got a new roommate who was up all night with the nurses. Today is the day to get my bandages off my penis and see if the skin grafts took! I’m very nervous about this. I’m afraid that maybe something didn’t heal correctly. I’m also afraid of the pain involved in removing the bandages! I heard that this type of ‘bolster’ dressing is actually stitched to my skin, so it will have to be cut off one stitch at a time! Yikes!
Well I’m having a hard time typing as I’m feeling really anxious about the doctor walking into my room at any minute. It is 7:15 a.m. right now. Maybe I’ll get up and pace for a while and try to distract myself. I’ll type more later, hopefully with good news!
9:30 a.m. and my doctor arrived. My wife had arrived extra early today (7:30) as she knew I’d be a nervous wreck needing some hand holding! She was right! I almost broke down in tears a couple times, but Mel was strong for me.
The nurses knew I was nervous, the doctor knew I was nervous… I had a lucky stone that a friend gave me in one hand, and Mel’s hand in my other. The Doctor was very gentle (not often a trait for Doctors). The outer bandage came off, it was almost like a tensor bandage. Then I could see where the inside bandage was actually stitched to the skin on my penis! Out came the scissors and he started to snip. I think there was about 8 or 10 stitches and the last two did hurt when he snipped them.
The doctor dumped more freezing cold saline solution over my penis, which aside from the shock of the coldness, felt really good and soothing!
Then the last bandage was lifted off… I couldn’t see it very well as it was the underside of the penis and I was laying down on the bed, but my wife didn’t pass out in horror so I figured it must not be too terrible looking! There was a nurse and a medical student observing also and they seemed quite fascinated, asking lots of questions.
The Doctor had a close look and proudly said that the grafts looked like they took hold wonderfully! Good color, good shape, etc. etc. YEAH!!!!! I’m SOOOOOO relieved!!!!
He said I can check out of the hospital tomorrow, leave the catheter in for one week, and clean and dress the wound area twice per day for two weeks! I am so happy, all the pain was worth it! Now I can’t wait for the second surgery!
I was anxious to get out of the hospital today.
We went to a hotel where we will stay until Saturday when we fly home.
I’m very sore. They are so reluctant to give you anything other than Tylenol here in the hospital, Why?
In the evening we changed my dressing. It was awkward to do in the bathroom, Mel was nervous to help, I was sore, and worried about the stitches staying clean and healthy. After I got a pretty good look at my penis, all split open and stitched and grafted, I broke down emotionally.
I knew it would look terrible, everyone told me that, but to really see it, you can’t possibly imagine how it will ever be fixed!? I cried badly for about a half an hour, Mel tried to be strong but ended up crying with me and holding me.
After all the crying, it was nice to be with my wife at the hotel. I had a pretty good sleep.
Friday, November 25 - ONE WEEK POST-OP
I woke up this morning in pain… then I realized that I had a bit of an erection!!! AHHHH!!! Oh my god, stop it now please! Make it go down! I tried to think of every disgusting thing I could. Finally it went down, but my penis hurt so bad and I was freaking out thinking that I may have popped a stitch or ripped something!
Mel was still sleeping so I cried for a few minutes quietly, just because of the pain and being freaked out by the erection. I took my pill before bed that was supposed to prevent erections… obviously it didn’t work.
We went down and had a good breakfast, then played the video lottery games and won $60.00 ! Yeah. Then back to the hotel room. I had a shower, which was not an easy task. Then we prepared to put on a clean dressing.
Before the dressing went on we took a bunch of photos of my penis showing the view one week after surgery. We took close up photos of the wounds / grafts. I looked at the photos and again I broke down crying. They look terrible. They look so bad, how can this ever heal well?
I’m confused and angry as the skin graft areas look very small… why didn’t the doctor take BIG chunks of skin from my mouth and put them on my penis? Is it going to be enough to make a difference? It just looks so bad, I can’t help but break down emotionally.
I’m afraid of the flight home on the airplane tomorrow. I’m afraid of being back home in small town BC and having something go wrong. I’m physically exhausted and uncomfortable. I have so many emotions going through my head.
Laurie from England (I met him at the HEA conference in San Jose) emailed me on the day of my surgery to wish me luck. That meant a lot to me as did all the emails I got from my HEA friends. I have re-read them all a number of times and they really do help give me strength.
I’m glad I’ve documented every step of this process in photos, and this written journal.
It’s far from over, but I hope that by next Friday, my penis will be looking better and feeling better and my emotional state will be improving.
Well I’ve survived the trip home. Luckily my wife changed our flights so we had a more direct route home cutting the travel time in half. It was difficult, however, just getting on and off the airplanes (x2) and moving around from taxi to terminal to car to home.
I have really tried hard to take it very slow since being home which is very hard for me to do. I’m generally a person who functions very well on 5 hours sleep per night, and never takes a nap or sleeps in past 7:00 a.m. so this week has been a real adjustment.
I must say, however, that this surgery really did knock the wind out of my sails, and I really did spend a lot of time in the lazy-boy recliner or laying on the couch. Having a shower and changing my dressings each day physically exhausted me!
It has also been quite an emotional week. Each evening after our pet parrots were all tucked into their room for the night and the house was quiet, I changed my dressings and asked my wife to take some digital photos of the grafted area. I then went to the computer to put the photos on my computer where I could compare the healing progress to the day before. For the first three nights after returning home, I broke down sobbing each night after seeing the photos. It was so hard for me to see how terrible things looked. It just didn’t seem to be healing like I wanted it to. As I said previously, it had been 16 years since my penis had been cut open, so my memory had really faded as far as what to prepare myself for appearance wise. Now that it is one day short of two weeks, I must say that I’m not breaking down tonight. Things are still very raw, and they are still quite sore, but they are healing noticeably.
Last night I had a hard night, and thankfully an HEA friend of mine emailed me some photos of his penis. He had his urethra partially removed, about half way down his shaft some time ago, and had not yet gone ahead with the next stage of repair where the buccal mucosa grafts would be applied. Just being able to see what his penis looked like healed helped me greatly. I was so relieved to think that my penis would heal too and I could look forward to looking more healed like my friend’s penis, even though we were both just partly ‘fixed’. He mentioned that it was hard for him to look at his own photos as he had a similar reaction to me when I took my pre op photos… we try to ignore, not look, and not think about our scars and when we are forced to look at them in living color it can really freak us out! I knew what he was talking about and I felt bad that he had to go through this, but thankful that he did as he did really help me keep it together. I hope I can offer him some support next month when he faces his surgery.
I must say that this is a unique opportunity for support that the HEA can offer… making it ok for us guys to look at other guys penis’ and not feel bad about it. I want to see other HS penis’ I want some confirmation that there are other guys out there that know what it’s like to be me. I want to be comforted to know that my scars, no matter how bad they are now, will heal and they will look better… like my friend’s.
I am determined to take as many photos of my penis as I can from before surgery all the way through both stages of this reconstruction… no matter how terrible they look, or how painful they are for me to see, I know that it is important to do. I want any man facing reconstruction to be able to see all of my photos, I want to share them with every HS/ES guy who might be able to get some comfort in seeing the transformation, and also to prepare them for how terrible things will look after surgery so the shock is not so bad when the bandages come off. But also to know that they will heal. Things will get better.
Today was the day to pull out the catheter! I was scared, nervous, things seemed to finally be healing up a bit on the skin grafts etc. but I was still nervous about peeing for the first time out of the new hole!
I ended up being too chicken to take it out until 8:00 p.m. I was just tired of hauling that pee bag around everywhere and my bladder was starting to ache from the tube being in there I thought so I pulled it out! I’ve removed these many times before so its not a huge deal. But then comes the scary part… waiting for the first pee!
Well I waited, for about 90 min before I couldn't hold it any more... the first pee after removing the cath. The actual voiding was not painful, not like I was expecting. The disappointing part is that it was messy as hell! There is no nice neat opening, it's kind of at the very base with tucks and rolls of tissue all around it, so it sprayed everywhere!
That burned! Then my penis burned and throbbed for about two hours afterwards. I had to change all the dressings and clean with saline solution after.
I've had to continue cleaning and changing dressings every time I have to void. The grafted area which I thought was finally looking like it was healing is not looking as good now. All this irritation from having to void every couple hours and then go through the whole cleaning changing bandages thing, is really frustrating me and I'm a bit worried about the tender areas?
If I could only find a way to position myself or my penis / scrotum so that it would just spray down and not all over the new tissue I'd be happy. Very frustrated and more sore than with the catheter in I think. Oh well, it's only been 24 hours so I'll just hope things heal fast and then it won't be an issue.
My bladder is also aching and my testicle is still sore and tender. I really hope when I’m all healed that there will be no more bladder or testicle pain… that is, after all the whole reason I had this surgery done! I hoped in the back of my mind that all the pain would just be gone right after surgery but no such luck… now I just have to hope it will still go away. If it doesn’t I am going to have a very hard time dealing with that emotionally. I’m too young to be living with constant pain in my testicle/ bladder every day!
Ok I’d better stop typing before I get all worked up… it’s snowing outside tonight! We have only had one snow fall this year and it all melted right away so this time I think it’s here to stay.
Well the snow had continued, and so has my frustration with voiding through the new meatus opening, wherever that might be! Up at 5:30 a.m. with that strong urge to pee… an aching in my bladder, I was so tired and I just wanted to stay in bed for another hour before having to go through the whole process of voiding, then trying to clean it all up, re apply sterile gauze bandages, etc. etc. I’m not a morning person to begin with but to have to go through this whole routine first thing really pissed me off! I knew I couldn’t wait. So off I went through the whole messy process.
It doesn’t hurt when I void, and I can empty my bladder much faster and more completely than before, but I really don’t know where the new opening actually is. I know the general area, which is at the very bottom of the penile shaft, practically in the scrotum. The problem is that there are a bunch of folds of skin, both old and new grafts that all scrunch together at the base. It doesn’t lay open flat like at the top of the penis, it folds all around so I really can’t even see clearly where the new opening is. This is what is causing me all the distress is the fact that because there is no clear opening the urine is spraying all over the fresh wounds and grafts, all over my scrotum, all over everywhere! I try every different position but nothing seems to help much. Then after I do my best to clean everything up and apply new bandages, everything starts to throb and ache with pain. Not the sharp stabbing pain I had before but a dull throbbing aching pain… I’m not sure which is worse, its still pain!
I was in the bathroom for a second time at 8:00 a.m. when my wife got home after working a graveyard shift. She tried to come in the bathroom but I was angry about being stuck in the middle of changing yet another dressing so I’d locked the door and when she tried to come in I yelled at her to go away.
Of course she didn’t deserve that but I was just so frustrated and really starting to get angry at the doctor for leaving my like this… where did he think I was going to pee from? Did he really think as he was sewing me up that I was going to actually have a clear stream when I voided? Why could he not have done something to make the opening a bit less obstructed? Why didn’t I just leave that damn catheter in longer! If only I’d known what a pain this would be I probably would have.
I went out to apologize to my wife, who had now just got inside covered in snow after trying to shovel the driveway since I obviously couldn’t! I felt very guilty and sorry for her and at the same time, angry and frustrated and sorry for myself! She was understanding as I told her I didn’t know how much more of this I could take, and started to fall apart sobbing. She tried to offer a few suggestions, none of which I thought would work, so then she got firm with me and told me that enough was enough, we just have to deal with it as we go, and things probably would get better. If not she told me to ask the Doctor all my questions when I see him on January 3rd.
I feel like phoning him tomorrow and yelling at him, asking him what the hell he was thinking when he did this to me! Of course maybe by Friday things will be healed to the point where I don’t need all the dressings and I can start to learn how to pee in a more straight stream!? If this happens I’d feel foolish tearing a strip off this doctor who is supposed to be one of only two in all of Canada who can do this type of surgery. I guess I’ll just wait out the week being angry and emotional and frustrated and hope that things heal by Friday. If they don’t, I’m going to be really upset.
I called the Dr’s office today, he wasn’t in but the receptionist said she would have him call back. I waited all day… no call.
I did get a call back from a lady at the patient relations office of the University of Alberta Hospital. I had emailed them some complaints about the nursing care that was provided during my stay, and they wanted to let me know that they were still looking into them and they were going to contact me once they had more information. They took my concerns seriously which was nice to see, and unexpected. I will be better prepared to assert myself and my needs with my second surgery in May when time comes for that.
The Dr. called back today at lunch time. I’m glad I was home. I told him my concerns about the rate of healing, and the buried meatus that caused me to spray urine everywhere with no control. He basically just said it’s still early, the grafts have to go through a ‘maturation process’ and it takes time. He said that the spraying problems would just be something I’d have to deal with as I’m in a half finished state and so I just have to put up with it for the next 6 months until the stage two surgery!
I then told him I still had some pain in my testicle and bladder, but it was different pain, more of a dull ache than the terrible sharp constant pain I had dealt with for the past two years. He said sometimes the surgery solves the pain problems and sometimes it doesn’t, some people always have pain to some degree and I may be in that boat.
This last comment was not what I needed to hear! The reason I had this major surgery is because he told me that it was likely the strictures were causing the pain and if we fixed the strictures the pain would go away! Don’t change your story now!?! I would have much rather he just gave me the standard answer he gave me first… Things are still healing and will take time. Just be patient. But no, he had to open the door to the possibility that all this pain and agony might not even help!?
OK, calm down now… I’m getting all worked up. I just have to try to stay mentally intact long enough to let things heal. I will give things until Friday and hope that there is an improvement, if not I’ll start to worry.
I have to fly back to Edmonton for a follow-up the day after New Year's, so I can hammer the doctor with questions then.
A friend (one of my employees who is off on Maternity leave) heard I’d had surgery and came by this afternoon with her two young boys. They brought a gift basket of things to do while I’m recovering, and the boys got to see the parrots and other animals at our house. It was a nice visit, but wore me out! 30 min was about all I could handle.
Well, things are still very messy when I void, I haven’t yet figured out a way to position things so that it doesn’t spray everywhere. Once in a while I get it right and a stream comes out but that doesn’t happen often and there doesn’t seem to be any rhyme or reason to it?
The good news is that things seem to have healed quite well over this third week. The skin graft areas still look a bit like a strip of raw bacon laying on the underside of my penis but many of the stitches have dissolved (probably due to my two showers a day plus saline washes during the day!) The skin is looking better and I’m able to dig around a bit more so I can get a better look at the opening areas.The opening area is still quite raw looking and I can see a bunch of stitches still very much intact deep in there.
It’s not hurting quite as badly when I get erections, but it still hurts. The Dr said that once the healing was progressing the erections would be a good thing, helping to stretch things out, and increasing blood flow to the area! I’ll be happier when I can have them without the pain!
I’m getting back into my routine, trying to do a bit more around the house, taking back more of the parrot cage cleaning duties from my wife who had been doing the majority of the work since we returned home. It’s good to be doing more, but it’s also difficult. I get tired very easily. My penis hurts after standing or sitting too long (more than 20 min) and walking, bending over, twisting etc. irritates my surgery area.
I’ll be going into work Monday for an hour or so, then I teach a short class on Tuesday next week. That will be a good test for me to see how I do. I probably won’t do much else work wise next week, and then we’ll be closing for Christmas holidays!
The scars in my mouth are still a bit of a problem… if I talk too much I feel my face getting all stiff, and it feels like I might drool from the corners. I still can’t whistle as I can’t purse my lips enough to make the sounds! My parrots really miss that, so I try to sing to them instead. I’m confident that this will improve over the next few months as things loosen up.
Overall I’m less angry about the outcome of this first stage than I was last weekend. It’s still frustrating and I’m worried about getting back to work and being able to void without making a big mess everywhere, but I’ll deal with that when the time comes. For now I can start getting back to my ‘normal’ routines, and back to my life… until the second surgery!
It’s been an emotional rollercoaster. I find it interesting to read back through the entries that I’ve written to see the changes and the ups and downs.
Another friend from HEA just told me he is having the stage one surgery (the same as the one I just had) on Tuesday next week! I hope I can be some support to him as he goes through what I’ve just been through. He said he will also keep a journal.
Happy New Year! I’m feeling like this year will be a much better one than 2005, which saw me in so much pain that I spent the whole year on Narcotics! It's weird to think back about that year now. I honestly don’t remember whole parts of it! Like movies for example, I love to go to the movies with my wife or friends and there have been at least 4 movies now that I have absolutely no memory every having watched but my wife and friends swear that I went with them to the movie theatre and watched them… I don’t remember at all.
Regarding that pain, which was the whole reason for my having this surgery, I would estimate that it is approximately 80-85% gone now! Yeah! I’m on NO medication except for the occasional Tylenol if the pain starts to become noticeable. That maybe happens 3 or 4 times per week, depending on what I’m doing. Of course, in my dreams I thought it might be 100% gone right after surgery but I guess that was unrealistic… now I just need to hope that it doesn’t come back after the stage two surgery.
I’ve now started back on my exercise routine, which I’m very happy about. Last year with my pain as bad as it was, I couldn’t even do a mild walk on a treadmill. Needless to say I became VERY out of shape (which is not normal for me) and I gained a bunch of weight. To make things worse, I’d quit smoking one and a half years ago and gained 20 lbs. then the past year not being able to exercise at all I never lost that weight and I put on another 10 lbs! Now 30 lbs might not seem like a huge amount but for me, who has never had a weight problem in my life, it was a very big deal. My goal is to loose 30 lbs by my birthday in April.
I went to the Dr. again for a check up. It cost about $1000.00 and took 3 days of traveling and stopovers to get there and approx 4.5 minutes in the doctors office! He talked very fast so I asked questions as fast as I could too!
The end result… he was very happy with how the skin grafts looked. He said they are healing nicely, but not ‘healed’ yet and that will take time. I asked about having the second surgery in May (the 6 month mark) and he said he thought that might be rushing things a bit… he said the recommendation was 6-12 months healing.
Ahhhhh! This is not what I wanted to hear! I don’t want to wait in this state for 12 months! I think he saw the horror on my face when he said that. He told me to book another trip on May 4th to have a Cystostopy done by him and then he will decide when I can have surgery. I hope it’s not too long after May.
Overall, I’m feeling pretty good, almost back to ‘normal’ and I’m pretty positive about the healing of the grafts. It still sprays and is messy when I void but it has gotten a little better… I just have to be careful when I go at the office because if I don’t pay attention it could spray up and all over my clothes! Try explaining that one at the office!
Well, it’s now been 3 months since my surgery back in mid November. I am continuing to do better… much better than before the surgery. Although I realize I’m only half-fixed, my pain has greatly decreased and it has made a huge difference in my life for the better.
I’m very anxious to get the second part of the surgery done and over with.
The skin grafts that were taken from my mouth have healed very well and they look nice and smooth and pink now… nothing like how they looked the first few weeks after the bandages came off! I really think this procedure makes great sense. There are no hair follicles in that tissue from the mouth, it is very flexible, it’s tough, It’s very smooth and used to being wet. It just makes sense and I’m so happy I found the doctor that could do it.
I still have some minor pain in the testicle which does concern me a little bit. I’m worried that after the second stage is completed the pain might return. I hope not and I guess I just have to stay positive and hope that this doesn’t happen. I never want to go back to living with the kind of pain I had before this surgery.
Having sex for the first few times after healing was a bit nerve wracking… I was worried about too much stretching or friction on the new skin grafts… they are still a bit tender and feel a bit tight when I have a full erection. I just took it easy and had very mild ‘calm’ sex and the scar area along the grafts did hurt a bit for the next day as well as the testicle, but it was worth it of course. Having an understanding partner makes a world of difference.
I continue to exercise (I really missed being able to be active while I was in pain for the past two years) and I’m now down 12 lbs! Yeah!
So overall, I’m happy, optimistic, and looking forward to part two of my journey with this reconstruction. I will probably wait until my next check-up with my doctor, on May 4th, 2006 before I write again. I hope I will be able to find out when my surgery will happen.
We are flying from our home to Vancouver, BC then to Calgary, Alberta, then to Edmonton, Alberta… a long trip to what will hopefully be my LAST surgery for Hypospadias repair.
I’m in a much better state of mind going into this surgery than I was back in November of last year when I was going into the first stage surgery. One big factor is that I’m not in pain any more like I was for over two full years before the first stage surgery. I’m in much better physical shape, having shed over 20 lbs after my first surgery.
Also because the first stage surgery was a big success (I’m not used to surgeries being successful!) I’m optimistic about stage two.
However, all that being said, I’m also very nervous. I have a number of worries that I will write more about later. This is a very important surgery and a number of things could go wrong.
Yesterday at work, I was trying to get everything done as I’ve booked off work for a full month so there was much to get done. I was very surprised how anxious I felt all day… almost like when you drink way too much coffee, I was edgy, shaking, almost feeling like I would have an anxiety attack. But I just kept busy and tried to stay focused. I have some very supportive people around me which is a huge help in my life.
I also heard from some of my HEA friends, including one guy that lives in my Province and who I was able to meet recently and have coffee with. We have the same doctor and he just had his first stage surgery. He is a great guy and I’m really happy to be able to get support from friends that know exactly what I’m going through. I never had that through all my surgeries growing up and it means a lot to me know as an adult.
Well I must go and get ready to head to the airport for a full day of airports!
Well, the trip here took 10 hours and 4 airports but we made it. It was much easier to make this trip this time than last time as I was not in any pain this time. I only had to spend 2.5 hours in the hospital on Friday for the pre-op appointments, blood test urine tests, anesthesiologist chat, consent forms etc. I’m glad my BC insurance covers hospital stays in Alberta because one of the forms I signed said the daily hospital stay rate they will bill the BC insurance is $2007.00 per day! Yikes, I would hate to have to pay that myself. We have to cover all the travel expenses ourselves which will probably be about $4000.00 so that’s enough for me.
So I’ve been trying to keep very busy these last few days just to keep my mind off things, however tonight will probably be a sleepless night as I worry about the surgery tomorrow.
The good news is that my surgery is first of the day at 7:30 a.m. which means I have to be at the hospital at 5:30 a.m. so that is very good… just get it over with as early as possible!
I will be taking some ‘before’ surgery photos tonight and then will snap regular photos of the healing process afterwards to share with the HEA group.
I’ve been thinking a lot about all my HEA friends as the conference in New York started yesterday and I was really hoping to be there as a success story for adult reconstruction… oh well, next year I suppose.
Well I’d better go get some more coffee. We are going to do some laundry then heading to the West Edmonton Mall (largest mall in Canada) for some shopping!
I’ll try to type in the morning before I head to the hospital… I’m sure I’ll be a nervous wreck by then.
Ok, today is the day. I’m not a nervous wreck, probably just because I’m too tired and can’t have any COFFEE!! Oh well. I did get a few hours sleep last night which is good.
I guess my biggest fears involve:
My biggest hope will be that none of the above happen and I can be one of the new success stories… a testament to these new surgical techniques, even for guys like me who have had many failed surgeries in their past.
My mouth won’t be full of stitches this time so those nurses had better watch out! If there are any of the same problems as last time I was in they will hear it from me!
Well, its done! Stage two of the surgery is now over and the doctor said it went very well. I don’t know if I believe him yet, until I get a chance to see things for myself, but the bandages wont come off for a couple more days.
This time the recovery has been a breeze compared to the first stage when they took the skin out of my mouth.
When I woke up after surgery I had two I.V’s in my right arm, I had two catheters, one in the penis and a super pubic one which goes in through my lower abdomen a few inches below my belly button. I also had a blood drainage tube that had a suction ball on the end to suck out any internal blood from around the incision site.
I got the blood drainage tube out today.
I’m still on bed rest but the nurses said I will probably be able to get up later on today.
I’ve been very lucky to have an awesome nurse for the last three days shifts, her name is Joanne and she is the best.
I think the Doctor ended up being able to fix the gland for me by closing it up so it looks more ‘normal’ I’m quite excited about that.
So, there is much less pain with this surgery and I’m feeling really good. Lets hope the healing continues with no complications.
I’m out of the hospital… I got out at lunch time yesterday (Thursday) after the doctor came by and had a look at things. It turns out that he was able to reconstruct the new urethra all the way to the tip of the gland, which he originally told me he wouldn’t be able to do, so that is positive. I’ve looked at the gland and it looks really good. It looks almost ‘normal’ which is amazing as it never has before! My worry is that the stitches will break open like they always did when I was younger and then it will be all ruined.
The pain I had originally was in my testicle. The doctor used a procedure where he pulled tissue from inside my scrotum up and laid it over the stitches of the new urethra. It is called a ‘Dartos Flap Procedure’ I think and he said it reduces the chance of fistulas from 60% to less than 5% post op!
The other pain was from the super pubic catheter. I have had many of these over the years when I was younger but not for over 16 years or so… so to have them cut through my lower abdomen and through the diaphragm muscles etc. was quite uncomfortable… also they stitch the tube to the skin around the entrance hole, and that stitch pulls every time I move or talk, or breath deeply and that hurts a bit.
In fact the penis has not been very painful at all. Having the great nurse, Joanne, was a big help as she felt like I do regarding pain… why be in pain if you don’t have to be… she would give me Demerol shots which totally helped and allowed me to sleep for 6 hours at a time through the night.
One thing that surprised me and is causing me a bit of anxiety is that the doctor used a clear film that looks like saran wrap to wrap around my penis? I’ve never heard of this before? You can see the swollen penis through the plastic and pockets of blood that are just sitting there along the incision. He said that we cannot take that bandage off for at least 5 days. This means tomorrow, which means I’ll have to do it myself. This scares the hell out of me because they told me it is sticky on the side that is touching the penis and the though of pulling tape off my stitched up penis just about makes me pass out!!
I can tell you that I will not be taking it off tomorrow for sure as that is the day that I have to fly from Edmonton to Calgary and then from Calgary to Vancouver. We stay overnight in Vancouver and then on Sunday we fly home to Terrace. So I won’t be trying to pull this plastic off until Sunday at the earliest and I’m thinking of leaving it until Monday (7 days post op) because if anything goes wrong and I end up in Emergency it would probably be better to be there on a Monday than on the weekend.
So I had a bad night last night as they doctor sent me out of the hospital with just some Tylenol 3 for pain (these are like baby aspirin for anyone who is in the least bit of pain!) so I was up every two hours through the night. Of course this makes me cranky and less tolerant for things. I don’t know why they couldn’t give me something stronger given the fact that I’m traveling on airplanes over the next two days!
I’m constipated, so they have me on two stool softeners but these haven’t worked yet, which ads to the cranky factor!
Regarding the fears that I wrote about the day of surgery, It is still too early to tell if most of them will come true or not. So far I’m feeling positive about the appearance as long as those stitches don’t rip open.
I’m really freaked out about pulling off that clear tape, it’s right over the incision site, Ahhhh! I have to stop thinking about it and trust that the doctor knows what he’s doing. Of course it doesn’t make me feel any better to know that I will have to pull it off at home in BC which is 10 hours flying time to where my Doctor is! There is no one in my town that would have any clue what to do with me if problems occurred.
Oh well, I’d better go try to relax.
So, Mel went out shopping this afternoon. I told her to go so she doesn’t get tired of being cooped up with me all day. While she was gone I decided I needed to shower and clean things up.
As I took the bandages off and started to look at the plastic tape over the incision site I noticed a build up of old blood pockets… it looked almost black and was trapped under this tape right along the wounds. I decided to start peeling back the plastic carefully to see if I could release some of that old blood as I was worried about infection setting in.
Much to my relief the plastic tape came off quite easily. I kept going, the old blood had a terrible smell as it drained out, which made me even more determined to get the tape off and get in the shower to clean the area off good. By the time I got the tape off, I was sweating and my hands were shaking from the build up of nerves but I felt very relieved.
I got into the shower and it felt so good to have clean warm water running over the area.
I got out and began the process of putting new dressings on, which was quite a process. Then back to bed where I stayed for the next few hours.
One thing I was surprised to notice when I removed the tape and bandages, was that there was a separate incision made on my lower scrotum. It was about 1.5 inches long with a few stitches. This is where the tissues was taken from for the ‘dartos flap’. My understanding of this was they take tissue from the scrotum and lay it over the incision of the new urethra (internally) then close the outer skin over it. Doing this is supposed to reduce the risk of fistulas. From research I’d done before surgery I thought they just pulled the tissue up from the bottom of the incision made for the new urethra so I was surprised to see a completely separate incision down below. This also explained why I was having so much pain in my right testicle… that was right where the cut was.
Later on that day, I kept checking my penis trying to get a sense of how things looked. I started to get worried about the very tip of the gland just below where the catheter came out, the incision looked like it had opened up slightly and I started to worry. Of course my worse fear is that the incision would break open as this had happened many times before in the old days when I was a teenager.
My pain level was increasing after the removal of the tape and the dressing change and my fears of the incision opening the day before we had to start the long two days of airline travel home made me decide to go into the emergency department just to check things out and for some reassurance that the incision was still sound.
The doctors gave me some steri-strips (thin clear tape strips) that I could place over the gland to keep it snuggly together. They checked the site carefully and said there had been no broken stitches on the end, which was a big relief. Back to the hotel and back to bed.
I’m not looking forward to two days of airports and traveling but I can’t wait to get home.
Despite my worries, this second surgery has really been much easier than the first stage as I don’t have the pain of the skin grafts taken from my mouth to deal with. Also, even thought the penis is very swollen and bruised, it already is looking quite good. I’m still surprised the doctor was able to complete my urethra all the way to the tip.
I’m excited and anxious to see the end result in a few weeks!
Well we are finally home! It was a terrible trip, just too long and too many airports. It took two days 3 flights and 4 airports as well as an overnight stay in Vancouver.
I’m very sore and swollen and I’m having a huge amount of discharge from the incision site which worries me a little bit but I’m hoping that will work itself out. I’m changing the dressings many times per day and trying to move around as little as possible.
The discharge is a redish brown color and smells very bad… all I have to do is touch the swollen area of my penis and it comes gushing out through the incision. (sorry for the gross description but that’s how it is).
The one thing that is keeping me from freaking out completely is that I haven’t had any fever / chills which is a sure sign of infection. I’m taking anti-inflammatory and anti biotic medication but the antibiotic is just one time at bedtime (Macrobid) so I don’t know if that is good enough or if I should be on a larger dose. I think I might go see the doctor on call tomorrow just to ease my mind about the discharge.
It’s just so nice to be home.
What a difference a day makes. It seems like in just one day the discharge problem has virtually ended. The reddish brown discharge changed to a slightly yellowish discharge and decreased to almost nothing, just a small spot on the bandages! That was a big relief. I’m just so surprised how quickly it went from gushing out and soaking bandages to almost nothing!?
The incision looks really good in that I don’t even see stitches? I don’t know how the doctor did that? The stitches must be only on the inside? Most of the incision already looks healed over except for the last inch or so just below the gland where I can still see it is a bit raw and red.
The swelling is starting to go down slowly, and the pain is uncomfortable but very manageable.
I called the doctor’s office to ask about the two catheters yesterday and they said I had to leave them both in until my checkup in three weeks… that seems a bit long to me but better safe than sorry. It is an inconvenience having to keep these tubes in but a small price to pay if all works out well.
So as far as the surgery goes I’m very very happy and relieved and I’m really excited about the check up and getting the tubes out and having that first Pee!!!
On a sad note, today we lost one of our beloved parrots, Charlie, who was part of our family for over 10 years. He died quite suddenly and we have sent him away for an autopsy but we think it was something like stomach cancer. Our 6 parrots are truly like our children, they talk, they laugh they crave our attention, they tell us “I love you” and sometimes they misbehave and drive us crazy, but we really love them and much of our life revolves around them. Mel was especially close to Charlie as he was her baby, so she is very devastated. There would never be a good time for a loss like this but we are glad he held on until we came home from my surgery and I’m glad I can be home for Mel right now.
So another week has gone by. They swelling has gone. I’m still putting dressings on the area and there is still a bit of yellowish drainage at the very bottom and at the very end.
There is a clump of black stitches at the base of the gland and if I apply a bit of pressure on the penis some drainage will come out at that stitch area about half an inch below the new meatus at the end of the gland. That is worrying me a bit right now as all I can think of is “FISTULA”! I have to keep thinking that it is only two weeks post op and there is still time for it to heal and close up.
The other thing that has been nagging at me a bit this week is that the scar area along the underside, even though there are not a lot of visible stitches, looks quite bad to me. Maybe this is just an early over reaction but I remember all the nice slides and photos the doctors show of the ‘After’ penis and they always looked really good with nice smooth skin and barely a scar visible… my penis doesn’t look like that. Now mind you the underside was scarred like a patchwork quilt before surgery, and the new skin grafts were for the inside of the new urethra, not for the outside area that you see. I guess I’m just hoping that the scars tone down and smooth out and soften up over the next few months.
I took some two-week post op photos tonight. I then spent some time looking back through the photos of before the stage one surgery and after stage one… it was very hard to look back on those photos and it made me appreciate where I’m at right now a bit more, but it still got me a bit upset.
My ‘After’ photos may not look like the ones the doctor’s show at their conference presentations, but they are a reality. Maybe I’ll do my own conference presentation next year and show the ‘real life’ photos of a guy who had his penis butchered by incompetent doctors as a child and then finally had things done properly as an adult… However it is important to understand that ‘properly’ doesn’t equal ‘perfect’ because of what the new doctors were left to work with after the butchering of our younger years!
Well I woke up this morning and checked my bandages and was surprised to see some blood on the bandage. I’ve been having a very small amount of discharge but no blood lately.
On further inspection I soon realized that the stitches in my gland area had all burst open.
I’m so disappointed and upset right now. Soon I’m sure I will be really pissed off (still too upset to be angry though) because I told my doctor more than once and even in writing just before this surgery that I was very concerned about infections, fistulas, erections and stitches breaking open. I told him this had been a common pattern in the past and I was very concerned about it happening this time. Unfortunately he didn’t seen to think any of this was that big of a deal because he didn’t do anything differently to address these concerns.
It made me feel like maybe I was over reacting or being a worry wort and I should just trust the doctor… well guess what? Everything I said I was VERY CONSERNED about came true! I developed an infection on Friday, I had no medication to prevent or reduce erections, there was a fistula (I hoped it would heal itself over time), and now the stitches have burst!
So the 5 biggest fears I wrote about the morning before this surgery
4 of the 5 fears have all come true (it’s still too early to know if I have Bad Chordee or not). Very disappointing. It’s bringing up a lot of the old feelings I used to have when I was younger and going through one failed surgery after another.
Well I got back home last night after traveling to see my doctor for a three week post op check up. He pulled out one catheter… the one that was in my penis, but left the super pubic catheter in for another week just in case. We plugged the catheter so I have to pee through my new urethra. As always that first time taking a pee after surgery in that area is a white knuckle – teeth clenched moment. You are never really certain if it will be one of those terribly painful burning moments, or if it will be not bad.
For me it burned and hurt a bit, but not too bad. It hurt more after I went than during. It was throbbing, aching and burning for a while afterwards.
I was pretty upset after the stitches broke open on the end of the penis on Monday, but the doctor didn't seem to think it was any big deal. It was a big deal for me only because I was quite excited that the head / gland actually looked good stitched up... almost 'normal' (I really hate using that word in relation to a penis).
This ‘normal’ look is something I’ve never had for as long as I can remember. None of my surgeries as a teenager resulted in the stitches in the gland area holding. They always ended up breaking open and so finally I gave up at 19 yrs old and just let it heal opened up. It didn’t look great but the only people that would ever see the underside of my penis were people I was having sex with. If you saw me in the change room you wouldn’t know. So I left it. I never felt good about it but I lived with it.
The doctor reminded me that he told me before surgery, that he wouldn't be able to take the new urethra to the very end. He ended up doing this, but he now tells me that he probably shouldn't have even tried. He told me the tissue was very thin and he didn’t think it was worth continuing to try to close up. He said we need to be concerned about function not appearance. I was almost hoping that he would say “Ok well lets just stitch that back up right now and send you on your way”, but he didn’t.
I know he is right but in the back of my mind I guess I was hoping for what we all hope for... a more normal looking penis. I guess my new career as a porn star is not going to happen!
So far I have been able to pee just fine. It hurts still (two days of using the new urethra) but I have even tired peeing standing up, and it seems to be working.... I've never been able to pee standing up at a regular toilet as it sprayed too much. I used to be able to stand and use a urinal but I just might be able to stand at the toilet now. We'll see. I may just end up continuing to sit down - after 37 years of doing that it's kind of habit.
There is still some swelling and the new stitched area underneath is still a bit hard and stiff, but the doctor said that will start to soften up and get more flexible as the months go on.
So the end result of my check up is some good news and some disappointments. Typical story I suppose. My penis will not look like those great ‘after’ pictures that the doctors show in their conference presentations. I think we need more realistic photos for guys, like me, who have been through many failed repairs as a child. It’s important not to set people up to expect that they might actually end up with a brand new looking penis! Although reconstruction techniques have improved dramatically, there is still not always a perfect fix or reconstruction for guys like me.
I had no choice but to have the reconstruction because of the chronic pain I was having due to the strictures… however, if this was not the case I don’t think I would have chose to go through this new reconstruction process, knowing what I do now.
Today is the 4 week post op date. I celebrated by pulling out my super pubic catheter! Yeah!! I prefer to remove my own catheters as I’ve had so many its not a bit deal, but I have the control. The super pubic catheter is a bit more of a challenge than a regular one as there are often a few stitches to snip, and the biggest difference is that you really have to pull hard to pop the end of the tube through the bladder wall. It takes a bit to psych yourself up for it but having removed a super pubic tube before I knew I could do it.
It was such a huge relief to have that last tube out of my body. I was really starting to hate it, especially that last week. It was clamped off and I was peeing so it was really just a back up precaution incase something went wrong. The doctor said to leave it in about a week, which would technically mean Wednesday but I just couldn’t wait another two days and I was pretty confident that I was voiding well through my new urethra so out it came!
My abdomen is tender still from where the tube came out. There were two additional stitches, one on each side of the opening that I had my wife snip and then pull out last night. I think they might have been starting to get infected as they really hurt, so out they came and that was also a big relief.
So now I just have to have enough patience to continue healing and try not to get too impatient for results… specifically I’m talking about the appearance of the underside of the penis. After the huge disappointment about the stitches in the gland area breaking open, I have been trying to tell myself that it’s not about the appearance, however, I must say that so far, I really feeling ripped off at then end of this two stage reconstruction.
I feel ripped off because it really looks terrible. The scar area on the underside of my penis looks really bad, worse, in-fact than before this two stage procedure… and it didn’t look very nice before! So, I really hope that over the next couple months as things heal and loosen up and soften that the look of my penis will shape up and improve.
When I have an erection, right now I still can’t have a full-on erection, as it still hurts terribly. The partial erections that I do have show some pretty significant chordee. This worries me, however, I do understand that I had a whole lot of stitches in there and I know from the last surgery, that even at 12 weeks things were still a bit stiff and sore in the erection department but it did get better.
It's 5 weeks post op, and to celebrate feeling better with no tubes and no more bandages / wound drainage I climbed a mountain! It is Terrace Mountain, a moderate size peak right in our city limits. It is a popular hiking trail, and is a moderate level hike that takes about 1.5 hours and really makes you sweat and makes the leg muscles burn. It feels like quite an accomplishment to sit on the rock peak and look down on the city and all the mountains surrounding it! It felt really good.
As far as the healing, it is continuing. The scars are changing a bit, although the still look really bad. Erections are getting a little bit easier but they are still painful and the scar tissues still pulls really hard making it too uncomfortable to have a full erection (or sex).
I was interested to read the medical article on the HEA message board about epidural pain control preventing erections post op. I wish I had been able to tell my doctor about this article before surgery, however, my stitches broke due to erections three weeks after surgery so I’m sure the epidural would have been removed by then if I’d had one.
I’m starting back to work part days this week and will be back full time next week. It feels good to be getting back into a regular routine again.
So, at week 5 post op, I’m peeing well… no new fistulas… no longer applying dressings / bandages, still disappointed in the degree of scaring on the underside of my penis… still not able to have full erections due to the scars… Going back to work.
Happy Halloween and Happy 3 months post op for me! Things have continued to heal. It seems to be healing a lot slower after this second surgery… I guess there are a lot more stitches internally this time around than after the first surgery. The underside of my penis still feels very scared and hard to the touch, like a hard mass of scar tissues. When I have an erection I have some chordee which I didn’t really have before and it pulls and hurts a bit if it is a very strong erection. This also makes sex uncomfortable when done in the standard missionary position… with a little adjusting the penis can go in without bending upward (thus pulling on the scar tissue area) and it doesn’t hurt quite as much. I am a little discouraged that I’m still having these problems after 3 months. All I can do is have patience and trust my doctor who tells me it will get better with time.
The one other problem area is around the testicle where the doctor made an incision and took out some sort of tissue to lay over the first row of stitches on the newly created urethra. My testicle had been hurting since the surgery. That area hurt more than my penis at some points and it still hurts daily now, 3 months later. It’s not the same pain I had before these two surgeries, (I had unbearable epididimytis pain before) it is not as bad, but it hurts enough to bother me every day… It is not ok. Especially since I didn’t have any pain after my first surgery up until the second surgery. I am angry about this as I think my doctor made some sort of mistake when he was cutting out this tissue. I’m trying not to over react yet, but it’s been 3 months and this testicle pain isn’t improving at all. If it still hurts like this in January (6 month mark) I will know the Doctor screwed up and I will be VERY ANGRY. He might say ‘well it’s better than it was’ but its not as good as I know it could have been and no level of pain down there is ok, especially after having had 8 months of no pain!
So after 3 months post op from the second of my two stage urethral reconstruction here is where things are at:
So my opinion about these surgeries after 12 weeks:
I have a set of side by side photographs that I will be submitting to HEA to post of the website so anyone considering this surgery can see the real life photos, not just the best case ones the doctors brag about in their conference presentations. These photos of the stage two recovery shows my penis before and after the stitches broke open at week 3.
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