CC diagnosed. But what now?

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Lostatsea

Hi everyone. 19 year old, UK resident recently diagnosed with Congenital Curvature, thankful for finding a place with a wealth of information on such a debilitating condition.

OK here goes: for as long as I can remember being able to achieve an erection, my penis has curved upwards back towards my body. When fully erect, its shape can be best described as like that of an inverted "C" or close bracket ), tip pointing (almost touching) stomach. The penis can be pulled back slightly but not without some discomfort and only when held.

Alas, after building up the confidence to admit to the problem and seeking an appointment with an Urologist, I am left distraught and confused by the advice they gave to me. I don't want to get into too much detail on a public forum but the attitude they displayed towards a subject of such sensitivity was, I felt, deeply unprofessional; the crux of their opinion was: "get out there and give it (intercourse) a go and if there's a problem come back."

I was completely taken aback by this dismissive, blasé attitude and wondered if others had experienced similar? They admitted from the start that they had very little experience with Peyronie's/CC cases (none with people my age) and my heart kinda sank from that moment. I had to present them with a CC fact sheet (they hadn't heard of it) for them to overturn their initial diagnosis of Peyronie's; they confirmed the diagnosis of CC over Peyronie's with their superior consultant, after viewing a photo of my condition and a physical examination when flaccid. I got the impression they were scared of something they didn't understand, so their response was to send me on my way as quickly as possible.

And I guess that's why I'm most disappointed and, I have to say, frightened. I went there seeking advice, reassurance and a plan of action and ended up having to avoid a misdiagnosis by pretty much diagnosing myself from the causes, signs and symptoms (relating to Peyronie's vs CC) discussed here and across the internet (I'm eternally grateful!). In return, they could only offer uncertainty, no solution and an insensitive attitude.

I understand their unwillingness to offer surgery, especially after seeing the risks and potential side effects discussed on these forums, but surely after seeing the severity of the curve (I just can't imagine how intercourse would be possible, despite their assurances and, sigh, suggestion to go and find out) there must have been a better option for them to offer other than to dismiss the condition outright.

So now I feel as though I've reached a dead end, not sure how to get back onto the road. Can anyone out there offer any advice? Anything at all? Is it worth seeking a second opinion with someone specialising in the condition? Alternatively, am I presuming the curve is more serious than it actually is (would intercourse be feasible)?

Help! :-\

newguy

Unfortunately it's not entirely uncommon to be on the receiving end of such treatment. I think more training should go into dealing with the emotional side of patients needs. I know urologists aren't therapists but it's certainly a vunerable position for many men to be in, and as such it's not satisfactory that people leave feeling this way. It sounds to me like you'd be better off seeing a urologist with a wider knowledge of conditions like congential curvature. I don't know how other members here feel about naming and shaming practices who put people through ordeals like this, but I really don't like seeing people treated this way.

It sounds like you're thinking of deciding against surgery. I believe that in cases of CC surgery is often very effective: http://www.ncbi.nlm.nih.gov/pubmed/21121435  so I wouldn't rule it out. It might be worth trying to get a referal to a specialist through the NHS. You might have to wait a while but as you are young, the condition is severe (if they agree that is the case), and as there no other real alternatives, maybe they would elect to carry out surgery. The point regarding if you are capable of having intercourse is possibly the only valid point mentioned by the urologoy practice you visited. A second opinion will at least provide another take on that too.

LWillisjr

From all I have researched, surgery is the only option for congenital curvature. So the real question is it severe enough to warrant surgery.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

GS

Lostatsea,

I've had Peyronies for a while now; I started out with a 45 degree bend (it is 35 now).  Looking at my erect penis, I didn't think there was any way I was going to be able to have intercourse again because I didn't see any way I was going to be able to penetrate my partner.  But, I was and I did...and I continue to on a regular basis.

What I'm trying to say is you might be surprised by how well your curved penis will work; I would definitely give it several chances before I thought about surgery.

Keep a positive attitude and give it a try; I bet it will work.  Good luck and let us all know how well you do.  

GS

 

Worried Guy

I agree GS, a baby has to come out of there so unless the curvature is severe sex should still be possible.  

Lostatsea

Thanks for the replies.

Yes, the experience I had with the Urologist is not one I would wish others in my position to endure. Let's just say inappropriate jokes aplenty, perhaps in an attempt to cover their lack of knowledge/experience in relation to the subject.

I guess my next move is to seek a second opinion from someone a lot more clued up on the condition, to get their take on the severity of the curve and whether it would hinder sex. I'm afraid the only way I can describe it to you is that it is a continuous, upwards curve from base to tip, in the shape of a close bracket ), tip touching body when fully erect; the shaft can be pulled back slightly but not without discomfort. I'd fear pain/injury if intercourse was attempted, if it were possible to at all. It seems severe to me but, I don't know, perhaps I just can't get my head around how it could work yet...

Any further advice, particularly in regards to potential surgical options, would be gratefully received.

:)