Introducing Myself and My Newly Deformed Dick

[mjc2]

Hi, I'm new here. Like you, I'm mortified to be on a Peyronie's Disease Forum but extremely grateful that such a thing exists, because society and the majority of doctors I have spoken to seem to know virtually nothing about it.

Here's a bit of info about me. I have no idea what I am doing so if I miss vital details, please let me know and I'll elaborate.

I'm a 43 year old man who until this point in my life have not had any significant health problems. About five months ago I started to suspect something was not right 'downstairs' as I wasn't getting erections during the night and I was not interested in having sex with my partner.

Like most men, I have had times of feeling insecure about sex, or intimacy, and sometimes this meant wanting to avoid sex, especially in a domesticated relationship. My partner and I also have a young baby so I thought we were just going through the standard 'drought' most new parents experience.

However, I realised something was different when my partner went away for the weekend with the baby and I tried to masturbate. To my surprise, I couldn't get a full erection but I soldiered on regardless. I finally came, then my penis became swollen and red from the duress and I thought to myself: this isn't right.

After a few weeks I tried to have sex with my partner and noticed I wasn't hard enough to do it with 'conviction' and I remember feeling very insecure. It was around this time I realised I wasn't having erections at night or when I was, they were weak and felt curved, which was and still is deeply troubling. At this point I finally conceded there may be something wrong and Googled 'bent penis weak erection' and the search thew up a wealth of information about Peyronie's. An image search confirmed for me beyond any shadow of a doubt that I had Peyronie's.

I initially went to the Doctor who referred me to a Urologist but the waiting time too long so I searched online for an authority on the disease and found a Urologist called Dr David Ralph who is a senior Urologist at UCLH in London specialising in Peyronie's. He diagnosed me and said he's seen much worse cases but that did nothing to ease my mind, my dick was bent and I couldn't get hard, this was as bad as I could ever imagine things being.

He prescribed me 5mg daily of Telafadil and 20mg a day of Tamoxifen. I am still confused as to why he prescibed me the latter as it is commonly used for breast cancer. He also recommended the SomaCorrect, which I have only recently started to use as it took my some months to save the money for. I am considering stopping taking the Tamoxifen and switching to Pentox. Also considering a traction devise such as AndroPeyronie as well as the VED. I'd greatly appreciate any advice or other shared experience especially about these two options and I'm keen to hear more about what others have done.

I am approximately six months into my journey. My dick is curved to the left by about 30 degrees when semi-erect and I can't achieve a full erection. There is a large indentation on the shaft and I have lost significant girth where the indentation is, resulting in an hourglass shape. I am depressed, scared I will lose my relationship and have lost all confidence both inside and outside the bedroom. I actually find my own cock grotesque now, which I desperately need to address if I am to live with this condition.

I am coming to realise the main battle with Peyronie's is psychological. Of course I will carry on with the physical treatment and hope for the best, but meanwhile I owe it to myself and my partner not to shut down, disappear into self pity or self obsessed fear. I believe that, more so than Peyronie's itself, this is what spells the end of a relationship.

Anyway that's my story so far. I am incredibly grateful for this forum and the support I have already received from some members. After six months or fear and paralysis, I am now ready to throw everything I have at this and hope to god I see some improvement in time.

My thoughts are with all of you out there suffering this terrible thing. It may not be a terminal illness but it really cuts to the core of male vulnerability and has the potential to make life unbearable - if we let it.

Thanks for reading.
MJC2

[Benjamin62]

Firstly.  Sorry to hear.  This is a journey... I can tell you that... and  although it may feel like the end of the world... you will get thru it.  And there is treatment.  Find a urologist who deals with this ALL the time.  Most of all protect yourself mentally by talking to people... it really helps

Here's my edited for television thoughts and you can investigate each. On this site:

(Some May work... but at least have been known to)
Diet
Oral rx meds (pentox, cialis)
Traction (manual or device)
Vacuum Devices
Injections (not without it's own risk of damage to other elements of the penis... and the cost ... is high given it's spotty results)

Those above will take dedication and time (as in months/years) and may not be effective.

Last resort
Surgery (Plication or excision and grafting)

I had a 90 degree downturn... tried all... and decided to have surgery last week.  It really was an easy Plication surgery. No pain to speak of... need to wait six weeks for use.
Surgeon says it was a great result.  I also had hourglassing that he rectified with a synthetic graft.

Anything else you read or hear about from ointments to supplements are by and large a total waste of time and money.

Find a professional who deals with this everyday (not just a run of the mill urologist).  Easy to find look up on this Peyronies Forum.

It's treatable!  But don't fall for instant results that sound to good to be true.

Oh.  One last thing!

You mentioned the word "grateful" at the beginning of your post.
I have to say I have been very grateful throughout the process...
And
The minute I came into Post Op that word... grateful... has been in the forefront of my mind.
I actually think this journey made me a better man.
More empathic, a better listener... and oh the wonderful doctors and surgeons I have spoke to in the US... if you reach out.... the will call you back.

Incredible  

[TonySa]

Welcome, be sure to start by reading the survival guide and bring your questions here.  https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057

[bob v]

Re: the psychological. I know it's tough, but just be honest, and you'll be amazed by the support and encouragement that you might receive. In fact, a dear lady friend found this website forum for me. While this may be hard to believe, our mates can be incredibly supportive if we really share our hearts in this arena. And if they cannot be that way, then the love is very thin. In my long experience women love closeness and connection, perhaps more than you might imagine. Again, that's my experience.
Good luck. Hang in there.

[mjc2]

It's been a while since I posted here so thought I'd update my progress.

First and foremost, I still have Peyronie's. This sucks but there have been some improvements. I am able to have sex with my partner now and achieve an erection. This is incredible and I am extremely grateful, although may be due to the Tedalafil I take daily and I worry about what will happen if I stop.

My curvature has greatly reduced, from approx 30 to 10 degrees. This was initially a huge relief but I now suspect due to the plaque spreading to the other side of my shaft. This has led to some shortening, maybe an inch and a half (I never measured myself), perhaps in the same way the Nesbit procedure leads to shortening by compensating for the curve on the other side of the penis.

I am terrified the shortening will continue but I am trying to keep the faith. The curve and position of indentations seems to change on a weekly basis so the plaque must be very active. I am currently curving slightly upwards and I have considerable hour glassing which also scares me.

I take 20mg of Tamoxifen per day and 5gm of Tedalifil. I stoped taking the Tamoxifen for a while on a forum members' advice but experienced a noticeable relapse so started again.

I have not been consistent in the application of my VED device because I have broken it three times and had to wait for parts. I am also confused about the protocol described here because it contradicts the advice of my Urologist and the manufacturers of my VED device, who I have spoken to on the phone. They say VED devices work on the premise that you achieve the maximum erection possible within the cylinder every time, coming as close to a full erection as possible. This worries me due to all the horror stories of injury with VED and traction. If anyone can provide some clarity on this issue I would really appreciate it. I would also love to hear from anyone with experience of using both VED and traction and whether they can be used in tandem.

So, definitely some positive progress to report here. Also some alarming developments (i.e shortening).

The struggle continues.

Thanks for reading.  

[TonySa]

I'd def start traction and/or VED to also address the loss of length and girth.  They can be done in tandem.  However, read the survival guide on how to take accurate measurements so you can accurately monitor progress.

[NotSoStr8]

So thankful to have found this site.

I am 56 and have had very low testosterone levels for over 5 years which I have been treating. About 3 years ago I got up the nerve to discuss
growing curve issues. My urologist sent me a referral to Dr H. I was not able to get into him for two months so I sought out another Urologist in the area where a dopplar was done and I was told no venous leakage,approx 60D dorsal curve. He suggested Xiaflex and I froze at that point as I was not sure if I was ready to jump into Xiaflex - from all the reading I was doing at that time I felt it was too premature to go that route.

I then went to Dr H and he did another dopplar and suggested INTERFERON A shots. He said my curve was not at one point, rather it was gradual curve and he thought the Interferon would be best, and also he told me to stay away from Xiaflex (learned subsequently that he does not like to do the Xiaflex treatment). So I embarked on 3 series of 6 shots at 4 week intervals with dopplars done a month after each treatment. Although there was some improvement (approx 10% degree improvement) the insurance started out covering the treatment and then unilaterally stop covering it as it was deemed experimental. Needless to say I am now left with a large bill to pay.

At this point fortunately I was able to confirm that there is a urologist in my area who is doing the Xiaflex treatments (listed on site as a top administer) and I was also able to confirm that a patient of his with similar issues was being treated successfully. So I am feeling like I found a treasure at this point. Last week went to my first visit and although no dopplar was administered he was able to confirm by manual and visual checking that the plaque on the dorsal top surface was evident and said I would be a good candidate for Xiaflex.  

I was looking for your input on my situation.

I am considering moving ahead with the treatment. (The Dr is working on insurance assistance through Bio Serv.)

Any and all your thoughts at this point are greatly appreciated. Sex has been uncomfortable with 50D dorsal curve and I want to feel like "a man" again!!

[TonySa]

With such a substantial curve it seems xiaflex is warranted.  Just make sure the doc regularly does this treatment and to add traction between shots.

[NotSoStr8]

TonySa, thank you for the input. I will be consistent.

I have been using traction (Restorex) and VED (SomaT) intermittently, however not regularly. I will follow through on the traction however not sure how often (daily?) and time of duration (15 minutes?). Look forward to your and everyone's input.

[TonySa]

As I recall Dr Lue suggested waiting about five days after the second shot in each series for several hours a day-I tried for 6.