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ashtown

I haven't been 100% officially diagnosed with Peyronies Disease yet but it's looking near certain according to the doctor and I'm waiting to hear back for when I can go in for an ultrasound examination. Until I have absolute confirmation though I feel it's probably better just to keep this to myself.  


Assuming this does check out as Peyronies Disease I will obviously have to tell my wife but I have a teenage daughter and I feel this would be terribly traumatic for her, especially at an age where she is likely to start getting involved in relationships of her own. Above all I want to protect her from being emotionally hurt.


Have others kept this bottled up or do you share the information with parents, children and possibly a few friends? My fear is that if I tell one person it will end up all over the place but at the same time it's very difficult to keep up a facade with everybody in your life when you are going through this sort of event. Any advice on how best to manage this?
Dec 2013 - Replaced all prescribed medicines with plenty of fresh vegetables, sleep and exercise

james1947

I was not able to say to no one regarding my Peyronies except my wife (no choice by the end).
In my opinion if you tell to somebody, is not anymore your "secret". Other people may think different.
For me, the only place I was able to open my hearth is here on this forum because I know that the people on this forum have the same problems and may of them, even they solved they problems already are still here with us to help others.

Maybe when I will make the implant (if in the US) I will tell to my son.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

LWillisjr

I woke up one morning with a sudden curved erection. I immediately showed my wife so she knew this from the beginning. And she supported me the whole time during learning what Peyronies Disease is, the treatments, surgery , etc.

I have grown children, 3 girls and 1 son. and 3 of the 4 are married. We sat each of them down and told them all. I was more bothered by the fact that I had never heard of this before. And I didn't want any of them to be surprised. I don't assume any of my sons will get this, but I want to them to understand and be better informed than I was.

I also have shared this with men I work with, and friends at church.

I have become a Peyronies Disease advocate. I want to educate as many people as I can about this. How can we as men in today's world with technology like the internet not know of this disease? They won't know until we spread the word and share our stories and try to build more momentum for a better cure.

Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

reynell

I my self told only several close friends (couples) only because they have always gave me moral support in hard times. My daughter traveled with us to the Hospital on her way home and she was told only that it was uro surge. Not that i was embarrassed but it really didn't affect or benefit her.
My wife is still hush  hush about it but its my life.
If i can help anyone going through this hellish problem i will tell it all, embarrassment has NOTHING to do with it.
I have been so blessed with guys like Les, James, and Jack who have been here every step for me.
I hope i can help others like they have helped me.

I guess you have to go with your heart on who needs to know, i think to my self "Will it benefit or help either of us?" and that's how i decide who to tell.  

james1947

lwillisjr

Appreciate your courage!
Even I have proved a few time in my life that I am not a coward, in this specific subject I am.
Maybe because I grow up in a society that "machoism" was the leading motto.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

ashtown

After reading your comments here I told my wife about the situation yesterday, while making clear that I was still waiting for a concrete diagnosis following an ultrasound. Peyronies Disease seems almost 100% certain though given the symptoms.


I tried to introduce the subject gently, while taking a very even handed approach pointing out that no two cases are the same, so while it can be terrible for some others seem to manage pretty well. She seemed to take it pretty well and just said there was no point worrying until we know for sure what is happening.


So far I have avoided hitting her with too much information and I think I'll introduce it a little at a time, knowing how upsetting this can be not only for those who suffer but also those around them. A week ago I had never even heard of Peyronies Disease and for a week now I haven't thought about anything else. My doctor was absolutely useless  :'(



Dec 2013 - Replaced all prescribed medicines with plenty of fresh vegetables, sleep and exercise

Old Man

Ashtown:

As time and the situation permits, introduce more and more information to her about Peyronies Disease. There is a "Women's Only" board
where women only can register, post and enjoy the input from many other women and how they adjusted to their men having Peyronies Disease.

Let her read any post on the regular forum that you think would possibly help her understand better what is going on with "her man".

We are not doctors here, but have been through many stages of Peyronies Disease and know much about how to "treat" it! So feel free to ask any and all questions that may arise with your wife or yourself.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

steamer

ashtown, you mentioned about telling your teenage daughter about this. my feeling is that if you think you have to by all means go ahead. for me, personally, i see no reason to do so. i had a hard enough time telling my wife. if your daughter starts asking questions maybe she can just be told that you have a problem of a male nature without going into details.
just my thought.
i've told only one other person besides my wife and only did that because he had prostate surgery and from what i've read there's a good chance it can happen to him.

steamer

james1947

ashtown

I think your approach is correct regarding your wife. As you have written is OK until now. You know your wife better than us.
Don't need to push her too much.
Regarding your daughter, my opinion is same as Streamer. Don't need to rush, have time in the future.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Lennyman

Spare your daughter this disturbing news unless you want to scar her also- mentally!  How is it going to sound when she tells her friends that you are describing your penis to her?? Think about it. Suck it up and take it like a man so your daughter doesn't have to deal with this ridiculous disease.  Lennyman
Lenny was here  :)

jackp

As my wife and I were preparing to go to Vanderbilt for my implant surgery my daughter called one evening.

My wife told her we were going to Vanderbilt and that I need surgery to correct a problems that the doctors here could not. Well one thing lead to another and she insisted on knowing what was going on so my wife told her.

Her response was: You two are not going to Nashville alone. I will come up the night before, take you there, stay and bring you home after the surgery. She lives 150 miles southeast of us.  She told my wife "You two deserve to be happy".

Yes, I have told my son and a few close friends. None knew anything about peyronies until I explained it to them.

I would not tell anyone that is a prude or has sexual hang up.

Jackp
http://jackp-penileimplant.blogspot.com/  

LWillisjr

At a minimum I told my son-in-laws. I wanted then to at least by informed of Peyronies Disease. My daughters just happened to be present when I told them.

We've always been an open family and my adult children clearly understand the importance of sex in a married relationship. And the importance to properly understand it. We didn't allow our kids to become "prudes" about sex.

Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

ashtown

Thanks for all the helpful feedback here guys. For some reason I haven't been receiving email notifications, so I wasn't aware of all these replies until just now.


So far my wife seems to have carried on with her daily tasks without any real change in attitude. She hasn't asked me anything more about the condition or tried to find out anything herself, which I must admit slightly puzzles me as I lie awake at 4.00am. By trying to make clear that every case of Peyronies Disease is different but holding back on specifics about worst case scenarios perhaps I have sugar coated it too much. I've mentioned curvature but not shrinkage and other symptoms.


Right now I have no intention at all of telling my daughter and that is very unlikely to change anytime soon. She is 16 and just doesn't need to be burdened with this kind of information or concern at her age before she has even had a first boyfriend. I simply wondered how others were managing. I would tell my father normally not least because if things became difficult I know he would be willing to help financially where possible. Unfortunately he'd tell his wife and at that point I may as well take out a full page advert in the New York Times or start a Twitter campaign.


Not having heard a word back from the local clinic since last Monday I called them just now only to discover my useless doctor is on holiday and didn't think it was worth advising me, so basically he dropped the bombshell without a definitive diagnosis and disappeared to the Caribbean without organising any kind of follow up visit or plan of action. They've told me to call back at 8.30am tomorrow to try and organise an appointment with another doctor or get a call back. In the UK we have the NHS, which is basically a license for 2nd rate doctors to be useless and still get paid a fortune at the tax payers expense but from tomorrow morning I shall start getting more pushy.  
Dec 2013 - Replaced all prescribed medicines with plenty of fresh vegetables, sleep and exercise

james1947

ashtown

Your experience with the NHS doctor drives me mad.
For me, as an Eastern European country citizen the Western European health care system was a model to follow.
But without to go in politics, I see that everywere where the health care system is managed by the government the results are very poor.

The reaction of your wife is not strange. Not thinking, not discussing and not paying attention to the subject is a way of defending herself psychologically. I encounter the same problem even today after 3&1/2 years with Peyronies with my wife.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

ashtown

Hi James,
I believe doctors in the NHS have good knowledge and are backed up by a massive network of resources but it often feels like every decision they take is based around government quotas and targets etc that may not always be in the best interest of the patient's care. The way their earnings are organised is also questionable if your objective is to obtain the best possible patient care. For me though, the biggest problem with the NHS is that it's treated like an untouchable jewell that is beyond criticism, which is a recipe for disaster in any large organisation.


I now have another appointment with a different doctor at my local surgery this afternoon and I shall push for more action. Another forum member kindly sent me a private message last night to tell me about a doctor in London called David Ralph at the University College Hospital who is a specialist in Peyronies Disease. It may not be possible to see this particular doctor but there will be other specialists there as well.  http://www.uclh.nhs.uk/OurServices/Consultants/Pages/MrDavidRalph.aspx


So far my wife doesn't seem terribly interested in talking about Peyronies Disease and has even changed the subject a couple of times.


Ashtown  
Dec 2013 - Replaced all prescribed medicines with plenty of fresh vegetables, sleep and exercise

james1947

Ashtown

Good luck with the new doctor. Hope it will be more proactive.

In the Urologists and other Doctors board you may find additional information regarding doctors in the UK.
Dr. David Ralf and other at the University College Hospital have good reputation, some on the forum had good opinion on them.

Regarding you wife, as I say: Her attitude is a deffence shield. I have the same with my wife.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum