ASHA STI Message Board
It is currently Wed Apr 16, 2014 10:51 pm

All times are UTC - 5 hours


 

National Cervical Cancer Coalition


Forum locked This topic is locked, you cannot edit posts or make further replies.  [ 32 posts ]  Go to page 1, 2, 3  Next
Author Message
 Post subject: NEW - MEN'S FORUM
PostPosted: Wed Feb 18, 2009 3:58 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Welcome to ASHA's HPV Forum for Men. Men are a minority in the HPV forums, so we thought we'd create a sub-forum to collect thoughts, questions, feelings, and comments from guys. Of course, women are free to respond here, too!

Let us know what you're thinking, fellas. Something to get off your chest? Need to vent? Confused by the swirl of HPV facts, figures, and stats, none of which seem to answer YOUR questions? Well, sit down on the porch next to me and chat away!

Fredo

_________________
ASHA Moderator


Top
   
 
PostPosted: Sun Mar 15, 2009 5:33 pm 

Joined: Sat Sep 20, 2008 7:30 pm
Posts: 24
Hey everyone,

I’m a guy and yea I got something to get off my chest. What really bothers me is the fact that HPV is virus that everybody is opinionated about, and the problem is, no one seems to have a definitive answer as to if the immune system will clear the virus over time for sure. I have spoken with a few health professionals and a handful say that the virus will go away on its own, some say it depends on the immune system, others have said that the virus doesn’t really go away, implying that HPV is in fact something that is permanent if you are unfortunate to be infected with it. Does anyone in the forums know for certain whether or not HPV will in most cases go away on its own? Will the virus always be apart of the host immune system and just lie dormant and wake up again in the future? Does it simply depend on a person’s immune system where the majority of young people with good immune systems will beat the virus, as opposed to those with weak immune systems who frequently catch colds or have lingering illnesses? How can someone tell if they have a good or bad immune system? If someone has a good immune system does that mean that they will most likely recover from viral infections such HPV more readily than others? And most importantly, why does that FDA and most health officials claim that the HPV virus will go away on it is own in the majority of it cases while others do not?? What evidence is this assumption based or proved on?? What are the statistics of HPV clearance rates versus non clearance rates??


Top
   
 
 Post subject:
PostPosted: Mon Mar 16, 2009 9:32 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi infostd2008,

Good to chat with you again. Medical research studies done with those who are positive on HPV DNA tests show that within 6-24 months, about 90% of those folks test negative. I think about half usually test negative around 12 months. Such research (Koutsky is one of the citations you usually see here) is the basis for statements that the virus most often clears naturally, due to effective intervention by the immune system.

It isn't completely clear why some individuals have persistent HPV infections that don't clear, but some combination of things like genetics/family history, smoking, diet, and other lifestyle factors are thought to play a role. Also HPV type might play a role here, as HPV-16 seems to hang around a bit longer than some other types.

I hope this helps. Please post a follow-up if you like.

Best,
Fredo

_________________
ASHA Moderator


Top
   
 
 Post subject:
PostPosted: Thu Mar 19, 2009 7:11 am 

Joined: Sat Jan 19, 2008 6:16 pm
Posts: 370
Hey Fredo,
Just wanted to thank you for adding a men's forum. My experience with HPV was that nobody is really looking out for guys so its nice to see ASHA being progressive on that front. In my opinion there are at least
two issues in regards to males with HPV that need some attention.

1. We've got no place to go to get our junk checked out. If you suspect you have HPV you have to bounce between your regular doctor, a dermatologist, or a urologist. In my experience I finally tracked down a gynecological oncologist for treatment because the 5 doctors I went to before were unsure of HPV and were reluctant to treat it. I'm not saying I'd want a male version of a gynecologist, but maybe that wouldn't be a bad thing?

2. NO TEST. Sometimes not knowing your own health status is more frustrating than knowing. At least if you're aware that you've tested positive for HPV then you feel like you have something you can treat and test later for to see if the treatments were effective (in the case of low-risk anyway). No test for guys often means no treatment for guys and that increases the source of infection for women.

Just wanted to add these thoughts, I'm some other guys out there are running into the same types of issues.


Top
   
 
 Post subject:
PostPosted: Thu Mar 19, 2009 9:01 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Thanks greatful, good thoughts there. Maybe we should start a men and HPV board, to see how that goes?

Fredo

_________________
ASHA Moderator


Top
   
 
PostPosted: Mon Mar 23, 2009 6:57 pm 

Joined: Sat Sep 20, 2008 7:30 pm
Posts: 24
Hey again Fredo,

Many thanks for all of your informative advice. I am now exploring my options for getting tested for HPV. My doctor sent me with an order to a lab to have a blood test for HPV. Unfortunately, I was informed that there is currently no blood test for HPV. However, I was also informed that an anal swab can be collected and sent to a lab to be tested for HPV in males. My question is, since no FDA approved test is currently approved for HPV testing in males, how is a doctor able to perform a biopsy, an anal swab, or a culture and get positive or negative test results for the HPV virus in males? Why are none of these methods FDA approved for males? How accurate are these testing methods for detecting HPV in males? I tried to get more information from a laboratory but they will only disclose information to my doctor concerning this matter. Why is this so? I am earnestly considering getting tested for HPV for my future. My dream is to get married someday and have children, without infect anyone else. My final question is if I choose to have an anal swab test for HPV or a culture, which I would prefer hands down over a biopsy, how many times can I be tested for HPV using either procedure? Why does the doctor have to swab the anus? And which part of the anus (deep inside, or partially inside?). Is this where HPV is found in infected males?? My plan is to get tested now, and if I test positive, I will give my immune system time to clear the virus and get tested again, hopefully test HPV negative at that time. Sorry if I asked too many questions of you. Hopefully you have more insightful answers...

Thanks!!


Top
   
 
 Post subject:
PostPosted: Wed Apr 08, 2009 5:18 pm 

Joined: Wed Apr 08, 2009 5:03 pm
Posts: 1
This is great, I have been looking for a source like this for a while. I was diagnosed with HPV about three months ago, although I knew I had it prior to making the appointment. I would assume that I have had intra-anal warts for about two years now. I would have thought that I would have cleared them by now but I'm thinking that I was exposed to several HPV strains and I also battled a parasitic infection from a South American excursion for about a year that ruined my immune system for a while. The warts really got bad during that time. Anyways, I just had surgical removal of my anal warts a week ago today. I must say that the experience has been so much better than the initial TCA treatment I had. The TCA just about killed me. It's amazing to me how tolerable the pain is (even without medications) post-op. I am frustrated though because I can't seem to find any posts of men discussing their experience with surgical removal of intra-anal warts. I am MORE than willing to talk about mine. I am happy with the progress so far. I am healing and the pain is less every day. Bowl movements are still painful, but stool softeners and coffee make it manageable. Has anyone had surgery to remove their intra-anal warts and have had clearance since? I am always confused by medical journals that I read that mention "initial clearance" of hpv after 6 months from the surgery. Does this mean that the surgery only worked for 6 months? That they only followed-up with the patient 6 months afterwards and that's the extent of their data?

I will try to continually update on my status. I feel as though there are a lot of other gay men out there (or men in general) who are going through the same fear, pain and nervousness of this situation. Please feel free to share you experience if you have been through this. I'm interested in hearing about it. Also, what is the outlook for recurrences on this? I've prepared myself to accept the fact that I'll most likely have more to deal with eventually. Has anyone been cleared since their initial surgery?


Top
   
 
PostPosted: Thu Apr 09, 2009 11:55 pm 

Joined: Thu Apr 09, 2009 10:57 pm
Posts: 5
Hi all-
I am posting for my dear boyfriend who I told last month that I had a positive high risk HPV test. It has been incredibly confusing since then-- I was under the impression that there is little risk to men with the high risk type, but on further research he found a ton of information about HPV being linked to throat cancer as a result of oral sex. How much of a risk is this? Is there a test for oral HPV? Can a man of 45 get a vaccine (he seems to think so but I have never heard this) Is oral sex without a barrier an impossibility for the rest of our lives?

The information is all so contradictory. I tend to be less alarmist and low-intervention about things, but my man is much more cautious and freaked out. What are reliable sources of information??!!

Thanks and looking forward to your response,
DMP1123


Top
   
 
 Post subject: it's me again
PostPosted: Fri Apr 10, 2009 1:07 pm 

Joined: Thu Apr 09, 2009 10:57 pm
Posts: 5
Okay so I just got off the phone with my doctor who says THERE IS a screen for men for HPV- he says they swab the penis just like they do for women. Is that really true? I have never heard this before. I can't believe how much contradictory information there is out there. :?:


Top
   
 
PostPosted: Sat Apr 18, 2009 1:54 pm 

Joined: Sat Apr 18, 2009 1:33 pm
Posts: 8
I feel bad that I have this thing (EGW). I don't want to give it to anyone else, but it just feels like I can't be as free as I used to be in terms of enjoying various activities. I understand that condoms can decrease risk as can treatment, but I still feel like any new partners are taking a risk with me. I know that EGW are really of little clinical consequence, and I know that the two women (one because she is a past partner, one because she is a prospective new partner) I have had to tell about these EGW have taken it really well. I still can't help but feel frightened that I could give EGW to a new partner. Even though EGW are rarely of any serious clinical consequences, I can't help but feel that it's somehow "hurting" the other person. I honestly hate those feelings. If I gave that new partner EGW, I would feel horrible. Obviously, she could have gotten them from someone else in her past, but still...I can't escape the feeling.

I've had cryotherapy and recurrence. I let the recurring warts sit there for a couple of years. The prospect of a new partner after a couple of years has prompted me to do something about the recurrence. So, my doctor did cryo again, and we're trying Aldara. I know all of those things and condoms should help reduce risk. But...still, I don't feel good about not knowing if I could give a new partner EGW.

At least, I know that she was understanding enough not to reject me. It's enough for her that we use condoms and I get treated.


Top
   
 
 Post subject:
PostPosted: Tue Apr 21, 2009 3:51 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Quote:
Okay so I just got off the phone with my doctor who says THERE IS a screen for men for HPV- he says they swab the penis just like they do for women. Is that really true? I have never heard this before. I can't believe how much contradictory information there is out there


Right, such tests have been around for years but they're not currently approved for use outside of medical research studies. Part of this has been due to uncertainty of how to obtain the best, most reliable specimens from male genital skin, and the rest usually involves confusion over just what the test results mean (even if accurate they don't measure if the virus is currently infectious to sexual partners, how long it might have been there, what course it will take, etc.) Also, there's no treatment indicated for HPV+ men (or women, for that matter) who have no skin lesions (such as warts) detected.

Frustrating for guys, to say the least!

Fredo

_________________
ASHA Moderator


Top
   
 
 Post subject:
PostPosted: Tue Apr 21, 2009 11:25 pm 

Joined: Sat Jan 19, 2008 6:16 pm
Posts: 370
Quote:
Also, there's no treatment indicated for HPV+ men (or women, for that matter) who have no skin lesions (such as warts) detected.

Frustrating for guys, to say the least!


I think that the most frustrating part of HPV in regards to males isn't only that there is no test or treatment, but there is also not very much information or research available. Honestly I got the feeling that nobody was even asking if it could be cured or prevented in males. Granted as far as we know males aren't at a great medical risk, however they do seem be the PRIMARY source of infection for females who are at great medical risk. To tell a male who may or may not have contagious high risk HPV to "not worry it won't affect you" basically the medical community is unintentionally telling them "don't worry about a woman you might love....you'll be fine so let her fend for herself." I personally found this lack of control and knowledge over my own health status to be the most disturbing aspect of HPV.


Top
   
 
PostPosted: Sun Apr 26, 2009 9:04 pm 

Joined: Thu Apr 09, 2009 10:57 pm
Posts: 5
Also (and I've written about this before, sorry to be redundant but I'm still trying to get a handle on this) it appears that there is some risk to men to develop throat cancer, if they contract Oral HPV from having oral sex with a woman who is infected with high risk HPV. Does anyone out there know how much of a risk this really is? My boyfriend's doctor told him that there is a screening for oral HPV. Then if he has it, is it recommended to screen for throat cancer regularly the same way that they screen for cervical cancer in a woman once she has a HPV+ Diagnosis? Does anyone know where to get reliable information about this that is realistic but not hysterical?


Top
   
 
 Post subject:
PostPosted: Mon Apr 27, 2009 9:22 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi dmp,

The risks here are not great. Oral cancers, which are really a subset of head and neck cancers, aren't common and the majority aren't even HPV related. I'm not aware of any protocol for screening, but I can't imagine anything along the lines of cervical Pap tests are recommended for someone based on the chance they might have oral HPV. He'll have to work all that out with his doctor, of course.

Best,
Fredo

_________________
ASHA Moderator


Top
   
 
 Post subject: oral hpv
PostPosted: Mon Apr 27, 2009 10:25 pm 

Joined: Thu Apr 09, 2009 10:57 pm
Posts: 5
Thanks for getting back to me Fredo.

When you google "HPV and Men" or "Oral HPV and Men" you get a list of articles that link Oral HPV with Throat/Head/Neck cancers, so that's why I was asking. What do oral hpv warts look like? The same as genital ones?

Thanks again,
DMP


Top
   
 
Display posts from previous:  Sort by  
Forum locked This topic is locked, you cannot edit posts or make further replies.  [ 32 posts ]  Go to page 1, 2, 3  Next

All times are UTC - 5 hours


Who is online

Users browsing this forum: Google [Bot], Yahoo [Bot] and 3 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB® Forum Software © phpBB Group