48% of men w/ Peyronies Disease clinically depressed - study

[MikeSmith0]

This is interesting.

http://www.urotoday.com/3351/browse_categories/peyronies_disease/the_chronology_of_depression_and_distress_in_men_with_peyronies_disease__abstract.html

yet still doctors don't seem to empathize or really understand this side of it

--

Friday, 20 June 2008  
Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering-Cancer Center, New York, NY, USA.

For the practicing clinician, appreciating Peyronie's disease (Peyronies Disease) significant negative psychological impact is apparent. Despite this, there exists not a single study using validated instruments assessing this issue.

Aims: To document the effect of Peyronies Disease on the psychosocial status of men.

Main Outcome Measures: The Center for Epidemiological Studies Depression scale (CES-D) for evaluation of depression and the SF-36 for quality of life assessment.

Men (N = 92; 54 +/- 11 years of age) presenting for Peyronies Disease evaluation completed the CES-D, Short Form-36 (SF-36), and an inventory regarding Peyronies Disease. Partners were not assessed.

A vast majority of men (88%) had a partner with a mean partner age of 49 +/- 11 years. The median duration of Peyronies Disease at presentation was 12 (1-360) months. As a whole, 48% were classified as depressed on the CES-D (26% moderate, 21% severe). These subjects were then placed into groups according to the length of time since diagnosis of Peyronies Disease. Length-of-time groups were: 0-6 months, 6-12 months, 12-18 months, and >18 months. The percent of men scoring above the CES-D cutoff for depression remained consistently high with no significant difference across time since diagnosis groups. These results are supported by data from the Mental Health subscale (MHS) of the SF-36 (lower scores indicate lower mental heath). For the entire sample, the MHS standardized mean of 46.80 was significantly lower (P < 0.05) than the general male population standardized mean of 50. The MHS means stayed consistently low (no statistical difference) across time since diagnosis groups.

Using validated instruments, we have demonstrated that 48% of men with Peyronies Disease have clinically meaningful depression that would warrant medical evaluation. This high level of depression stayed consistent across time since diagnosis. These data suggest that most men do not psychologically adjust to their diagnosis of Peyronies Disease and all men with Peyronies Disease should be considered appropriate mental health screening.

Written by
Nelson CJ, Diblasio C, Kendirci M, Hellstrom W, Guhring P, Mulhall JP.

[newguy]

It does appear to be one of the biggest obstacles we face. I think we all sexual matters people appear to be a bit uptight or unable to develop a logical view. You'd think that people in the field of urology would have a more grown up attitude but some clearly don't. I don't really hand that against them totally though, as they likely are trained in these areas. Primarily, my major concern is the lack of up to date knowledge some of those treating peyronie's have. Not prescribing pentox etc, suggesting a wait and see or vitamin E approach. At least as an individual we can try to reach out to others (on this forum for instance). If someone refuses to treat the physical side of problems that can sometimes make the mental side more difficult.

[Skjaldborg]

The only thing that surprises me is that this number is not higher. Forty eight percent seems very conservative to me in regards to this utterly devastating disease. I saw something about rates of depression among cancer patients being 77%, and cancer can be curable in many cases and talked about openly. Don't get me wrong, cancer will kill you and Peyronie's won't, but the public image of cancer is that it's a noble battle, even at the very end. Peyronie's on the other hand is a closely guarded secret for most sufferers compounded with the fact that it is, for the want of a better word, incurable. The looming cloud of hopelessness can indeed be overwhelming.

I was certainly among this 48% when I was first diagnosed. My initial strategy was to exhaust my medical options by seeing Dr. Lue and taking pentox, but I also knew that I had to deal with the emotional side. I sought guidance from a family therapist and it was a big help. Just talking about it with someone who did not have a personal stake in the issue provided a great relief. The gist of the process was to remind me that the state of my penis did not define who I was before I got Peyronie's so why let it do so now? I encourage everyone dealing with this disease, spouses or partners included, to get some kind of therapy. You can't control Peyronie's but you can control how you deal with it mentally.

-Skald

[newguy]

I think mentally, the "ongoing" aspect of peyronie's is something that is one of the more troubling factors for many men. The continued pain or changes in shape lead men to believe that no progress has been made, or that the opposite is happening. Of course sometimes the conditions gets worse, before it gets better, or may have gotten even worse if it hadn't been for treatments, or it's something where it's hard to be certain, and is frustrating.

It becomes very easy to obsess about your penis, which I think isn't healthy but is totally understandable. Skjaldborg is right in that talking does help. I must say that even from men only talking on here, you can only sense the relief that others understand how you feel, and this is an importaqnt step is realising that there are many aspects to a person that cannot be touched by this condition if they adopt the right outlook. Alongside a comprehensive treatment reginem and things to take your mind off the condition (exerise etc) there is always hope.  

[BrooksBro]

I found the scoring tool used in the study as an on-line test.  I scored "possibility of major depression."  That's depressing.  :-(  Now what?

http://counsellingresource.com/quizzes/cesd/index.html

[newguy]

I must admit though. that occasionally my mood does get rather dark. It's not something that is at all frequent, and it appears to sometimes come out of the blue which is a somewhat distubring aspect of it. I just try to tell myself, that it will pass and hold onto that thought. Some periods of time are not really well aligned with thinking positively, and so simply keeping hold of the idea that this feeling will pass, and acknowledging that it has done previously, is quite useful and powerful I think.  

[MikeSmith0]

I must admit though. that occasionally my mood does get rather dark. It's not something that is at all frequent, and it appears to sometimes come out of the blue which is a somewhat distubring aspect of it. I just try to tell myself, that it will pass and hold onto that thought. Some periods of time are not really well aligned with thinking positively, and so simply keeping hold of the idea that this feeling will pass, and acknowledging that it has done previously, is quite useful and powerful I think.

That is a very healthy way to do it... I usually order a pizza & eat it all in one sitting.  Not good.  After I was diagnosed I gained 15 lbs...(but I lost most of it since I stopped this behavior)

Yeah I guess the number actually should be higher...but I think most of the men who get Peyronies Disease are over 50 and have been in a relationship for a long time that involves a lot more than sex...so it might not be as bad w/ that kind of social / emotional support and acceptance.  Still, probably a lot do get depressed even w/ relationships, etc...

I totally agree the depression is exacerbated by certain doctors' refusal to do anything.  But also - there's not much they can even do.  I took pentox for a while and it does very little.  So, it's depressing every time I see a new urologist thinking there must be something new that this one knows... but nope... and then I leave with the same info I came in with.  

The one bright spot was that i might have gotten in the xiaflex study but it's pretty obvious now that I have the placebo - so now I am stuck in that damn study until 2012 so I can get the real medicine.  And I am not supposed to use the ONE thing that I think did help - fastsize.  Xiaflex will not restore elastin, so I don't even see it as that much of a "cure" - especially for lost size...maybe for the curve.

Have any of you noticed how much more "big dick" jokes stand out w/ this disorder? It's like our whole society  is obsessed with dick size.  I never noticed this was as prevalent as it was before.

This site has been a big help though... and also it has helped me to understand how to talk about Peyronies Disease with others.  I don't think I could've discussed this in the "real world" if I hadn't discussed it here.  It was awkward even making my first post.  Now I don't even care... all my friends know at this point (bc I don't want to hear any conversations / complaints related to anything below the waist these days... ).

[newguy]

MikeSmith0 - Pentox does work for some men. You're right though, that it doesn't work for everyone, so people should readly themselves for that possible scenario. It's good news that you've got into the Xiaflex study. We'll havr to see how that loans out for you. I agree with you about the jokes. It's hard to get a fully understanding of how society and groups think, until you  effectively fall out of one aspect of it. Then you see things for how they are and what dynamics are at play.

[emasculated]

I didn't want to open another thread for this. But can anyone get access to the full text of this newer review: Psychological impact of Peyronie's disease: a review. [J Sex Med. 2013] - PubMed - NCBI
and send it to me perhaps?

[Learning]

I've been depressed since I can remember so dealing with this has a weird effect.  In some ways I can block it out because I'm used to not being happy but other times, when I really think about it and read very bad cases and think about my condition worsening, I feel much more depressed.

You can put everything in perspective.  In this infinite universe, us having varying degrees of a dysfunctional penis is so insignificant.  

[emasculated]

Haha.. I can relate to that. I'm also struggling with depression since my 20s and I strongly suspect hormonal reasons for it. My testosteron isn't exactly low but it's fluctuating at the low end and my thyroids are not working properly etc..
So the thought of suicide has always been a constant companion. And I never wanted to be older than 30, after that it just seemed kind of ridiculous. And I had ideas about good reasons for suicide.

EDIT: Btw. I still have not received this study! Anyone?

[Knight]

Check your PM 's. Not sure if that's what you wanted to see open?