My storey and worries/ advice needed

[BionicLeeroy]

Hello and apologies in advance for the long post

I was diagnosed with peyronie's disease approx 3 years ago. 1.5 years after the initial diagnosis the curvature entered the stable phase but had left me with roughly 100 degree upward curve in the penis.
My GP had referred me to UCLH in London where the consultant recommended that I have a Lue procedure (plaque incision and grafting). At this point I felt I had no other option left but to go ahead with the surgery.
The surgery was carried out in August 2017. The procedure should have taken 3-4 hrs. I came round in the recovery room and the surgeon advised me that I had actually been under for 6 hours as the procedure hadn't worked. They opted to insert a malleable implant under the same anaesthetic procedure as to give me the best possible outcome. They explained to me at the time that they would swap this over for an inflatable implant after 3 months. The reason for not inserting the IPP instead of the malleable was increased risk of infection.
This was such a lot for me to get my head around. I had received no counselling with regard to the implant and had not consented to the procedure.
The healing process was quite slow because of the double procedure, I was on pain medication for approx 6 weeks. As it was malleable (semi rigid) implant, it was a nightmare trying to conceal. It feels my life has been on hold ever since. I have 2 young daughters and it's been devastating not to be able to do the same things as before (swimming etc)
I had the next procedure to swap the malleable implant for the inflatable implant at the beginning of December again at UCLH. My consultant was David Ralph who is an implant specialist. I was advised that, as this was revision surgery (which comes with greater risks) that Dr Ralph would be the leading surgeon. It was only on the morning of the surgery that I found out it was going to be one of his colleagues carrying out the procedure. In hindsight I should have aborted the procedure then.
I was implanted with a coloplast titan 22cm with 3cm rear tip extenders through an incision in my scrotum. This was 1cm longer than the malleable implant, that it was replacing. I was allowed home the next day and the recovery went ok.
I had an appointment at 2 weeks post op where they tried to cycle the device, however it was too painful. At week 3 I started daily cycling.
I am now just over 5 weeks post op.
My concerns are as follows and any advice would be greatly appreciated.:-
The penis is looking deformed in the flaccid state. At the base of the penis there are really hard lumps which are really noticeable. The consultant has advised that these are due to the folds in the implant. Do these soften up over time? I am slightly worried the implant was incorrectly sized.
My flaccid state is now just under 6 inches, this is really hard to conceal. I am still worried about not being able to ever go swimming again or use public changing facilities. This still seems like a semi erection. Also where it kinks to put it in boxer briefs. If it's been in that position for a few hours it seems to stay like that until stretched the other side. Will things soften up over time.
How do other people manage with going swimming etc?
Even though I am daily cycling a couple of times to max, I am still struggling with the deflating. Are there tricks with the OTR valve to get more flaccid. The nurse managed to get it softer that I can.
I have tried squeezing the penis during deflation. Sometimes this seems to help.
Is it better to keep the button pressed through the whole deflation or only for a few seconds at the start
My valve is positioned so the deflate button is facing forwards. Is this normal. I find it hard to try and hold both sides with it positioned like this.
I am worried about the amount of RTE (3cm) that had been used. This seems to have pushed forward the position in the penis where it folds when flaccid. I think cosmetically it would have been better with less. It is fine when in the erect state and points to about 3.00 - 3.30 and is very rigid. However in the flaccid state causes a big unnatural bulge
I think the biggest worry for me at the moment is the look and feel of the penis in the flaccid state and the thought of not being able to conceal it.
Any advice/ comments would be greatly appreciated.

[Spikepork]

Hi. I too was operated on by Mr Ralph. My experiences although positive overall were that he is quite difficult to communicate with and is almost surrounded by a ring of steel in his office and as such direct comms and replies are nigh on impossible. Is that your experience.

Were you told and did you ask why a colleague (who) operated on you without your prior consent as I would think this is almost illegal! As regards the issues it takes time for the overall positioning of your new "member" will calm down and sit and hang more comfortably. My deflate button faced forward also but I find it relatively ok to press and deflate. Should only need pressing once and then use for hand to squeeze down the shaft to fully deflate. Press the bulb once after to ensure the deflate button is closed or there is some "backfill" or at least there is for me making a semi feel still apparent.

Ask lots of questions about your concerns and get detailed replies but ask in a way that does not initially seem like a complaint. If you want to talk feel free to PM me.

[BionicLeeroy]

Hi spikepork
Thanks for your advice, was your procedure done at UCLH on the NHS? I have found the communication so far has been terrible and no direct consultations with Dr Ralph. Only his colleagues.
I am under the impression that as it is NHS, there is no guarantee of surgeon. If I had known before the day it wasn’t going to be Dr Ralph I would have cancelled.

[Spikepork]

I was a private paying patient so I don't know when it's NHS. Always here if you need a chat. God knows I needed lots over the last few months.

[Anonymous3]

Your still swollen. The titan is stiff. The days of hiding are over. You will always havea semi erection. I am told it will soften up .I still wating. The pump does get softer as you pump what you feel in the pubic area are tubes as tissue grows back you will not notice it as much.

Now for the damn OTR pump and its auto inflate feature. To delafted holdd the realese vavle with one hand with the other squeeze your dick. Once you think it is delated use a reverse jacking motion starting at the head working backwards. It will look deformed and ugly for a little bit. Once you are delated give the pump a quick squeeze 1/4 to 1 pump. That should lock out auto inflate. If it could inflate between 30 and 40% during the day. My dr says you should feel a vibration I never do.

As you cycle it will hurt at the tips, this is normal it will decrease in time. I only feelmmit now when I first max out and quickly goes away. The first few times you cycle you may get 10 pumps, that will increase in time. The day mine actual set it self and broke scare tissue was around 70. Now I am fully maxed at about 40. When the pump rock hard you are maxed out.
Pm me if you need to

[Spikepork]

Great advice. I'm at the very start of all this and it's exactly as you describe. 10-15 pumps and not wall to wall. Did you cycle vigorously each day? Twice a days my consultant said once a day initially so I'm a little unsure here. Yes pain in the glans as I inflate as far as I can. And yes odd shape cock after deflation. Good advice on the press of the pump afterwards as I am getting a bit of a refill as hadn't been doing that extra pump after deflating. Have you seen any change in girth/length after this amount of time. Like you I have the titan so was told it gives you the semi look which I don't actually mind.

[Anonymous3]

I would vary my cycling some days it was max out and hold as long as could with the discomfort. 3 hours was the longest. Other days was max bold for about 5 minutes release and repeat for an hour.
As far as I know only the OTR had that feature. It has been discontiued.
That little bit deflate button is a pain i use thumb and index. If you are still swollen and neec to pratice finding it put your model in a wash cloth and find it wiypth your eyes closed

[Anonymous3]

Bionic
Your size sound about right. I have no rte and deflated at 4.5 inches. Maxed out 5.5 l and about same on girth. Dr said expect about another 1/2.
Although ours are not designed to do length. Some have had increase over time.

As your swelling goes down you should be able to reposition. Mine is kinda down to left deflate.
Your choice od clothing may have to change if you do not want to show go to looser fitting clothes. I go commando and do not have a big problem. Since my surgery O taken a cruise. Had no problems but I dont wear Speedos I wear board shorts With your legnth you may have a problem with it peeking out.

[BionicLeeroy]

Thanks for all the advice, I am continuing with the twice daily inflation to max. In the evenings I am leaving it inflated for an hour.
Hoping the deflation gets easier soon.
Me and whe wife are looking forward to trying it out Friday (6 weeks post surgery)

[Anonymous3]

It will