Unfortunate Thing about ED discussion Forums

[Mark H]

I believe the problem with this type of forum is, its only going to attract people that have a problem. Therefore you aren't going to hear from people that have had successful surgery and no issues with Incont/ ED and then frequent these sites to talk about having no problems. The people here have happened upon this site looking for answers. Surfing the web in hope of solutions. Sorry to sound so desparate but its reality. Any ideas, anyone?

[Kathy Meade]

Mark,

Yes this is naturally a biased group, it is mostly Dr Krongrad's patients and therefore mostly surgery patients. That should change over time as the group grows and other treatments should be better represented. The successes will mostly move on without being on this type of forum. What are your questions?

[Arnon Krongrad, MD]

Not sure I would characterize bias as unfortunate unless you want to characterize any and all studies and groups as unfortunate. The fact is all studies and groups have bias. The key is to recognize it, as Kathy has done.

That said, there are folks here who are doing well and are held to us by many forces: gratitude, altruism, love ... it's a long list, I suspect. We are working to bring in people who can give balance. Here is one example of involvement by a man who's doing well and still interacting.

Mark, see if you can find others to join us who are well and who are not well. It ain't a study, but it's a useful mix nonetheless.

[Mark H]

Sorry if my comments were that negative. Maybe I am at a dark moment. What would be encouraging is to here from others that have had Incontinence and ED problems after surgery, and had their bodies return to normal and how that came to be and what took place. Wow can you say run on sentence! I am fortunate and grateful that my surgery and prognosis since has been so positive. This forum is appreciated I was just commenting on the lack of positive comments in the healing to well category. It would be great to here from someone that had problems but bounced back. Thanks for your replies

[Angela Jenkins]

Mark - I agree with you completely. We would also like to hear from those who have recovered and their bodies have healed in time. It helps the rest of us be realistic in our expectations. Let's see who responds.

[Arnon Krongrad, MD]

There are two issues here: 1) functional return and 2) mood dysfunction. To some extent these may be cause and effect but that is not a given. We can pursue matters here within certain limitations, eg nobody here is your doctor. Accordingly, if your "dark" is more than a "moment" you should be talking directly with your doctor about it.

With that said, I will ask Michael Burke and Lee Pravder to also comment on your comments. And I will broadcast an appeal for involvement by those who may have done well. Let's see what we can come up with, shall we?

[Mark H]

Thanks Kathy! On the humor side my questions are: When can I get an erection and wear a swimsuit with out a big bulge in the front! LOL! thats really at issue. Other than that life is good.

[Kathy Meade]

Hey Mark,
You are an attractive man with a great smile. I don't know if you are married or single, gay or straight but if you like women I can tell you from experience with my husband that treatment for prostate cancer forces a man to slow down. For women that can be a very good thing. Mourn what you have lost but don't you get lost there because you may miss some wonderful things. One younger man told me that he would not tell other survivors who were complaining about their sex lives that his was better than before prostate cancer. He did not want to make them feel bad. After treatment because he had to slow down his wife got more excited than she ever had before. That had a wonderful impact on him and low and behold he was surprised what popped up. Maybe men just don't feel comfortable about talking about successes here.

Now if you are talking about incontinence pads in your bathing suit that is different. How much are you leaking? If it isn't too much then how about just going without a pad? Spend some time in the water and nobody will know.

[Mark H]

Wow thanks for the compliments and great advice! I am happily married my wife is incredibly supportive and your advice to slow down is well received, especially with intimacy. I am a type A the needs to heed your comments
Thanks

[Kathy Meade]

You are very lucky to have a supportive wife. Some how you have to find a way to let the worry go. Talking also helps and most women love to talk so you have someone who can help you work things through.

[Angela Jenkins]

Mark - I understand what you're saying. There are several members of the network that are doing fine, no problems and no complaints. Jimmy is doing great, but we want to stay part of the PC community not because of what we can get out of it, but rather what we can give. We've all been on the same journey at some point in our lives. You're right, a lot of the members are looking for answers , but that's not a problem. That's the benefit of a social network, to hear each others stories and experiences and learn from each other - encourage each other. As Kathy said, I believe in time, as we get the word out, you'll see a balance in the group. I hope to get men and women to the network that haven't been diagnosed yet, but are here for the education. Tell your friends to join us. Ask your doctors to join us. When an organization is new, we draw from people we know. In time our demographics will shift and I think you'll see even more positive benefit from this network. Thanks for being a part and sharing your thoughts on this.

[Mark H]

I agree and thanks for the response. As always I am here to support others and learn from all.

[david radford]

its been a year since my surgery i do a little better each day my wife has been great. you can call me at 2396919320 my surgery was positive and a godsend