Stigma

[emasculated]

Hello.

I'm asking this in the psychological section because I think it is highly relevant here.
Have any of you ever had a negative experience from telling people close to you about your Peyronies?
I know most men are hesitant to even tell anyone except their partners who also keep it a secret (of course).
And I read in articles on psychological components of the disease that patients can suffer beside depression also
stigmatization. The articles don't go into depth what this involves.
But I think I have just experienced this first hand. I told some time ago a very close friend about this problem, as it happens a female.
And gradually but very noticeably this person distanced herself from me to the point of no more contact whatsover, whilst before the friendship was very deep and active.
Needless to say I don't quite understand it but it is extremely hurtful.
Have any of you had a similar negative experience? Is there in general a stigma associated with Peyronies?

[damian]

my advice to this issue. Just don't tell anyone (except your parnter)!

I told it to my mother when I was worried about myself and my suicidal thoughts and now when I'm psychological in a very good state, I'm just overembarrassed about this. It causes me sometimes sleepless nights.
No matter how hard, it is the best to keep it to yourself. Telling someone will not make you feel better. Be a man, and later you'll be proud about yourself.

It is just creepy for someone who never heard about this. The most of us would probably giggle, if we heard of someone has a bent penis. That's the hard truth.

[liber]

I fail to understand how an individual could stigmatize another with any condition. Whilst I accept in an intimate relationship Peyronie's could be very problematic. I fail to understand why a platonic friend would choose to be anything other than supportive ... isn't that what friends do?  

[damian]

you must be very naive, if you think something like a "friend" exists.

[liber]

I maybe by your defintion 'naive' but I care for my friends and know they care for me. However you have to have a friend(s) for them to 'exist'

[welshwales]

I've heard plenty of jokes about the band One Direction in regard to Peyronie's, and to be honest I've laughed too. If you can't laugh at yourself then what's the point in living? I remember an old friend of mine at highschool who got the nickname "Tap" due to a congenital curve giving his penis a tap-like shape. But he was popular with the girls, he didn't let it bother him (at least openly) and it certainly didn't seem to bother the girls he was intimate with.

I have to say, I do think damian has a point. Don't tell anyone apart from your partner unless you are absolutely confident it will not affect your relationship with them. My close family know I have had complications since my circumcision, but I haven't gone into detail and I do not intend to.

[melting]

Its only worth telling someone if the person can cope with it and can help you.
No need to worry anyone.

Better to reach out for people who have the same condition. You can always contact me, or other people I suppose, via a PM.

[Skjaldborg]

Besides my wife, I have told my parents and my closest male friend. My friend was very supportive. Some male friendships revolve around teasing and ribbing to show affection so I can see where someone might not want to tell a friend if they have this kind of relationship.

We live in a culture that generally finds humor in harming/mocking the male genitals; crotch shots and small dick jokes are an easy laugh throughout the western world. I think to a certain extent this has made it difficult for men who are dealing with certain conditions that affect the testes and the penis. I am not trying to say that this is overwhelmingly oppressive, but it's there and it can be hurtful.

-Skjald

[RoyHobbs]

Damian maybe you need to reevaluate the type of people you surround yourself with.

I have told two of best male friends and not only have they been supportive but it's given me quite some relief to not always have to carry this burden on my own. Even being able to explain why I'm really going up to San Francisco when seeing Dr. Lue is nice.

Carrying any kind of secret is a psychological burden and ultimately damaging. You have to make the decision to reveal this on your own. But for me I'm in a much better state of mind for doing so.

Emasculated, I'm sorry you've had this experience. Maybe you should talk to your friend and be certain of the reasons for her withdrawal. Maybe something else is going on.

[pretzel]

Guys,

Seems like the responses are all over the map.  I appreciate the level of anonymity offered by this forum.  It affords us the opportunity to express those things that might embarrass us in a face-to-face conversation.  Thanks for the support, Guys.  My experience is this:

Last summer I shared some of my (somewhat embarrassing) history with six very trustworthy friends.  The following day I shared again with nine additional men, four of whom I had not met before.  In both meetings I included a bit about my struggle with Peyronie's.  I have also shared with a dozen or more men in a support group setting where men are dealing with a variety of struggles (substance abuse, broken marriages, childhood sexual abuse, financial struggles, pornography and sexual addiction, etc.)  Of course, in a setting like this confidentiality is a must.  I have also shared one-on-one with good friends and family members.  Having shared with about thirty people I have never had anyone show offense, never heard a demeaning word nor a tasteless joke.  What I have gotten from these disclosures is a tremendous supply of support, encouragement and warmth.  I've never had a relationship sour because of disclosure.  The worst response may have been stunned silence.  The best responses have been that friendships have grown closer.

The key, I think, is knowing the character of the person or people you consider telling.  Are they kind?  Can they keep a confidence?  Are they mature and other-centered?

Who have I not told?  Casual acquaintances, my daughter, my sister, sisters-in-law, grandchildren, one son (I need to tell him because of a possible hereditary link), and people who just don't have a need to know.

Bottom line:  be discerning, know your audience.  Being know and accepted with flaws is tremendously freeing.

[james1947]

pretzel

You are a brave man
Myself disclosed the Peyronies to my wife, 3 urologists and the doctor injecting me the PRP.

James

[damian]

It seems to depend on the character. The only reason I shared this to my mother was to protect myself. My girlfriend knew about it for obvious reasons.

I'm an introverted guy. I'm used to live alone and independend.  

[LWillisjr]

I have told many people, even people at church. I've never had any issues or embarrassment. I think all men are thankful it was me and not them. Is always interesting watching the expression on their faces when I tell them about the Varapamil injections.