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National Cervical Cancer Coalition


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PostPosted: Wed Jun 09, 2010 6:40 am 

Joined: Mon May 10, 2010 9:57 pm
Posts: 15
Location: US
So being a male diagnosed with HPV Type 16 has been absolutely devastating to me.
My previous relationship where I suspect I got it from, although there is no way to definitively prove it, is over and done...only to be left alone with this now.
And no I did not know she had it before, and I'm relatively certain she is convinced she (still) doesn't have it.

I'm trying to keep perspective but the depression of my life, my relationship, and its remnants is literally tearing me apart.
My whole life focus is on me, trying to eat better, exercise, stay healthy...but my mental and emotional state is an absolute wreck.
I've gotten treatment via removal of GW, and things are looking better but it doesn't change the fact that I'm always able to pass this on whether I have symptoms or not.
I feel like I'm in the worst HPV bucket possible...a male with the highest risk strain for cervical cancer in women.
There is no downplaying it, that is the reality of the strain...and expecting any woman to accept that risk is truly devastating.
I won't ever be involved (sexually) with another woman without letting her know, and I have zero confidence any woman would ever just be OK with it unless she already has that exact strain and knows it...of which the chances are basically zero.

I'm just struggling for some support here, I can't get my head around the situation and stay positive about it.
I feel like a certain reality of being utterly alone is setting in, and it's one of the last things I want in this world.
I've busted my ass my whole life to get to where I am, to get stable, in the hopes of settling down and having a family with the right woman.
I thought I had found her, trusted her for over 2 years, and it just didn't work out...and now I'm here.
I feel like my mind, my heart, and my life have been tossed into a blender.

How do you even take the first step in recovering from this and moving on with positive expectation with your life's future relationships?
I realize it's not the end of the world, but it's a mountain of a hurdle that now stands in the way of something I truly value in my future.
The rejection and abandonment of my last relationship is hard enough right now, HPV just makes it feel that much more insurmountable.

Someone please give me some perspective here because I'm feeling pretty damn lost, and that too is a difficult place for me...I'm so strong minded and willed in life, but this has all taken it's toll and brought me to the lowest point in my life. I have to get out of this and move forward with my life, but just don't know *how* to do it at this point and be happy about it. I never thought I'd ever have to turn to another person for guidance in my life, but I'm at a point where I feel like I need it and don't have anywhere else to truly turn other than family and friends I don't even want to share this with.


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PostPosted: Wed Jun 09, 2010 10:20 am 

Joined: Fri Jul 10, 2009 6:40 am
Posts: 54
I recently dealt with a herpes type 2 diagnosis. First and foremost, time heals everything. Secondly, HPV doesn't cause cervical cancer, it just puts women at a risk. I don't know the exact percentages, but it just slightly increases their risk. I don't know the full details, but there are vaccines now, so if you get into a relationship with a women and it looks like it can go somewhere, they can possibly get the vaccine to reduce their risk.


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PostPosted: Thu Jun 10, 2010 10:05 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
So being a male diagnosed with HPV Type 16 has been absolutely devastating to me.
My previous relationship where I suspect I got it from, although there is no way to definitively prove it, is over and done...only to be left alone with this now.

How do you know you have HPV-16? Were you diagnosed with a DNA test, or how was the determination made? External genital warts are almost always linked with low-risk HPV types, but of course sometimes men do develop external lesions associated with a high-risk type such as HPV-16. Just curious how you specifically know you have type 16.

And no I did not know she had it before, and I'm relatively certain she is convinced she (still) doesn't have it.

I'm trying to keep perspective but the depression of my life, my relationship, and its remnants is literally tearing me apart. My whole life focus is on me, trying to eat better, exercise, stay healthy...but my mental and emotional state is an absolute wreck.

I've gotten treatment via removal of GW, and things are looking better but it doesn't change the fact that I'm always able to pass this on whether I have symptoms or not.

Two quick points: First, I'll repeat that genital warts are most often linked with low-risk HPV types. Second, it's not established that you would "always able to pass this on." Most cases of HPV are cleared naturally by the immune system, 90% of cases by 24 months (and many much sooner). This is not proof the virus can then not be transmitted, but many experts believe the risks of transmission diminish over time in someone who has had no recurrences. Bottom line is you may not always have HPV.

I feel like I'm in the worst HPV bucket possible...a male with the highest risk strain for cervical cancer in women.
There is no downplaying it, that is the reality of the strain...and expecting any woman to accept that risk is truly devastating.

Cervical cancer is certainly something about which women should be aware, but keep in mind that even with high-risk HPV types, cancer is a very rare outcome (and most often occurs in women who have either never had a Pap test, or have gone five or more years without one).

I won't ever be involved (sexually) with another woman without letting her know, and I have zero confidence any woman would ever just be OK with it unless she already has that exact strain and knows it...of which the chances are basically zero.

See comments above. Don't overstate the risk, and don't assume you're protecting a woman from high-risk HPV by not being with her (80% of sexually active people are estimated to have one or more HPV infections in their lifetimes). Even if you have it, you may not always be able to transmit and if you do, if she has regular Paps her risks for invasive cervical cancer are small. In fact, most women with high-risk HPV never have even a single abnormal Pap as a result and clear the virus without ever being aware!

I'm just struggling for some support here, I can't get my head around the situation and stay positive about it.
I feel like a certain reality of being utterly alone is setting in, and it's one of the last things I want in this world.

Acknowledge these feelings and thoughts, don't beat yourself up for having them, but also challenge them. Look at the facts: Is HPV common? Yes. Does it usually lead to detectable diseases and a nightmare scenario of cancer. Hardly, such outcomes are rare, rare, rare.

I've busted my ass my whole life to get to where I am, to get stable, in the hopes of settling down and having a family with the right woman.
I thought I had found her, trusted her for over 2 years, and it just didn't work out...and now I'm here.
I feel like my mind, my heart, and my life have been tossed into a blender.

Challenge your own thinking. Given the facts, is this reaction warranted?

How do you even take the first step in recovering from this and moving on with positive expectation with your life's future relationships?
I realize it's not the end of the world, ok, better, better but it's a mountain of a hurdle that now stands in the way of something I truly value in my future.
The rejection and abandonment of my last relationship is hard enough right now, HPV just makes it feel that much more insurmountable.

Challenge your disaster thinking. Is HPV a pain in the neck. Sure. Do you want it (does anyone)? Of course not. But do most of us have it? Yep. Will it likely persist forever or cause us harm? No.

Someone please give me some perspective here because I'm feeling pretty damn lost, and that too is a difficult place for me...I'm so strong minded and willed in life, but this has all taken it's toll and brought me to the lowest point in my life. I have to get out of this and move forward with my life, but just don't know *how* to do it at this point and be happy about it. I never thought I'd ever have to turn to another person for guidance in my life, but I'm at a point where I feel like I need it and don't have anywhere else to truly turn other than family and friends I don't even want to share this with.

Great that you found us, this is exactly why this board exists.

Fredo

Oh yeah, great observation from Cansol97 that the HPV vaccines on the market are highly protective against HPV-16 infections! Keep that in mind as a prevention tool.


"There is no stress, only stressful thoughts."- author unknown, but clever!

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PostPosted: Thu Jun 10, 2010 2:50 pm 

Joined: Mon May 10, 2010 9:57 pm
Posts: 15
Location: US
Fredo and Cansol,

Thank you for the input and encouragement, I appreciate it.
Definitely just have a lot going on in my head and it's hard to grasp it all and be positive...but your replies have certainly helped.

Fredo,

I was diagnosed with Bowenoid Papulosis and via a biopsy as Type 16 by a derm.
I was treated with Aldara but it did not respond, so I had the numbing/scraping procedure done and am going back for my post-op checkup next week.
Things seem to be better, but the main site is still red/pink and healing. I don't expect it to go away for at least a couple months.

It's just difficult to accept these things sometimes, but that's what we have to do...it's the first step in the road to recovery (mentally, emotionally, and physically).
Not having my relationship (that I valued immensely) still intact is truly the root of all the torment.
If could have been with her indefinitely, none of this would even bother me.
It's just the compound loss of her and knowing I now have this and have to somehow find someone who will accept it in the future that has brought me down to this level.

I just have to deal with it and move on...it's good to have a forum like this to post questions and get feedback to ease what sometimes feels like a dark and lonely world. I know I'm not alone in going through this situation, but even knowing that alleviates only some of the distress around it.
Time heals everything...and right now, it's all I feel like I have anyway...so hopefully it will run it's course, and it and I will find a better path in life.


Thanks again for the feedback.


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PostPosted: Thu Jun 10, 2010 6:51 pm 

Joined: Sun Apr 11, 2010 1:46 pm
Posts: 10
Location: TX
I understand your feelings. I was recently diagnosed with HPV with a DNA test; then also diagnosed with genital warts after I insisted on a biopsy of tissue my doctor was sure wasn't HPV, but was shown to be that with a biopsy. The first few weeks after my diagnosis were horrible. I couldn't eat, cried at the drop of the hat, and was overwhelmed with fear. I had an Aha! moment when I realized I was in much more danger from the anxiety I was feeling than I was from HPV! Also, my BF made the comment that it could have been much worse. One or both of us could have received a diagnosis of HIV. (We both had unfaithful spouses before our divorces.) That helped me put it in perspective.

Treatment for the genital warts was difficult, too, as I had a not very pleasant experience with Aldara. Thankfully, TCA worked after two visits, and now I am playing the wait and see game. Wait and see if the next HPV DNA test will be negative, and wait and see if the GW will come back. Wait and see if BF, who currently is symptom free, will ever have any symptoms. It is stressful, but I'm coping much better than I did at first.

There are many, many women out there struggling with their own STD issues and wondering if a man will accept them! I don't think this will be a deal breaker for you with the right woman. Plus, women can get immunized against HPV 16.

Gail


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PostPosted: Tue Jun 15, 2010 11:11 pm 

Joined: Tue Apr 06, 2010 12:42 pm
Posts: 8
Location: Canada
I have HSV2 and struggle with this immensely as well. I would enjoy having some folks to talk with. I am struggling after nearly 5 years with my diagnosis. I understand the stress and anxiety I feel is worse for me health wise than the herpes. Still, I struggle, struggle.


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PostPosted: Wed Jun 16, 2010 8:47 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Gail - thanks for sharing your story and insight. It's good to hear from you and please feel free to post anytime, even if you just want to connect with someone and chat.

ibpositivelife - I'm also glad you found us. Feel free to post here anytime you want, and check out the herpes forum, too (but it's great to have you on this board!).

Fredo

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PostPosted: Thu Sep 02, 2010 6:28 pm 

Joined: Fri Aug 27, 2010 2:32 pm
Posts: 6
Location: North Carolina
I read your post and is if I everybody go thru all of this devastating emotions...*sighs* is hard to understand, best wishes


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PostPosted: Tue Oct 05, 2010 9:13 pm 

Joined: Mon May 10, 2010 9:57 pm
Posts: 15
Location: US
Well it's been awhile since I posted an update and I wish I could have better news, but I'm still battling things.
I'm at month 10 of treatment...Aldara failed to do anything, and I've had probably 7 removal surgeries now (numb, scrape, cauterize).

I would say it's probably 50% cleared or more, but there are still small (pin sized to maybe 2-3 pin sized) flat GWs still present and the area is overall tender (pinkish) and healing, basically always healing because I keep going back for more treatments.

I have a follow-up tomorrow with my derm and will be getting more of the same treatment, which isn't terribly painful but uncomfortable and at this point seemingly questionably effective.
Last time I went (2 months ago), we thought things were all treated, but here we are, continuing treatment once more.
Is it common to take a year or more of removals?
At some point do you stop treatments and wait for your body to fight it off?
Do I go see a different derm and get a second opinion?

I have to say, this has to be the most difficult thing I've ever dealt with in my life, it's virtually incapacitating on the personal terms of anyone's lifestyle.
And at the rate I'm going, this may take another year (?) two years (?) more (?) to clear up? I don't even want to imagine it.
I feel like my entire personal life is on hold for the indefinite future.

I wish I could say this has gotten easier to cope with over time, but it's really tearing me down. I'm doing my best to fight off the depression, but this keeps me stuck in a rut I can't do anything to get out of, I can't progress beyond in my personal life (relationship wise)...the rest of my life (work, recreation, etc) is all relatively busy and great but HPV keeps me from enjoying any kind of relationship. I don't talk to anyone about it, I just deal with and have been trying to be patient and wait the treatments out, but it's an absolute gut shot every time I have to go back for more treatment, feeling like it will never end.

I just can't believe it is THIS hard to get rid of GWs. My immune system is normally super strong, I can be in a room of coughing/sneezing/nose blowing people and not even get sick...but I can't fight this off even WITH treatments? How can that be?

How the hell do you stay positive about something like this?
What else can I try or do to improve the chances of getting beyond this?

I've been eating better, I've lost weight, I've been exercising...I've tried my best to stay positive and focus on the good things in life, but visit after visit with a constant reminder and having to "wait another month" to see how it goes is getting wearing.

Any advice at this point?
I'm just tired of waiting, tired of not being able to have any level of intimacy, tired of hiding this situation...just tired, so tired of it all.


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PostPosted: Wed Oct 06, 2010 5:31 pm 

Joined: Mon May 10, 2010 9:57 pm
Posts: 15
Location: US
Well, just got back from the latest derm appointment.
He isn't convinced the areas I see are recurring GWs, doesn't believe they'd return to the same area after being treated.
Only one of the spots was potentially concerning, so he took another biopsy and I call in a week to find out the results.
That sounds hopeful, but I'm pretty sure they are still GWs...I guess we'll see.

I asked what some other options were if the biopsy came back positive and he mentioned another topical ointment that began with a V.
After some research at home and recollecting what it sounded like, I'm pretty sure he said Veregan.
Not sure if it will work any better than Aldara but I guess it's an option to try.
Beyond that he said he can only continue to treat the areas as he has: numb with a shot, slice and scrape, then cauterize...which sucks.

I guess the final option is to wait for my body to just take care of it on it's own...if it ever will.
HPV-16 is the most resistant strain and apparently the immune system has the least effect on it compared to other strains.
So I'm not entirely sure my body will even fight it off, or how long that will take...maybe years.

I guess we'll see how the results come back and take it from there.


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PostPosted: Thu Oct 07, 2010 3:53 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
http://www.veregen.com/veregenrx/pdver_web_default.html

Hey,

Thanks for posting and indeed, the product you're talking about is Veregen, a botanical treatment (it's a green tea extract) that's the newest approved treatment for genital warts. I know a number of experts in this field who are excited about its potential. In clinical trials it fully cleared warts in a little more than half those who used it, and recurrence rates are pretty low, I think, less than 10%. See the link above for more on the "official" site.

I don't know that anyone on this board has ever been treated with Veregen. My understanding, without actually speaking with anyone who's used it, is that side effects (like skin irritation) occur less often than with other genital wart treatments. I hope you'll keep checking in and let us know how things are going. Also, stop by if you just want to vent a bit. We're here for you!

Best,
Fredo

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PostPosted: Thu Oct 14, 2010 8:23 pm 

Joined: Mon May 10, 2010 9:57 pm
Posts: 15
Location: US
Hey Fredo et al,

As expected, my biopsy came back positive for HPV cells still.
My derm didn't recommend the Veregen but rather suggested going right to laser treatment.
I guess he feels that's the next best step.

I don't know anything about it, I have to organize a consultation with a doctor that does the laser treatment from another office and was told that doctor would have a consultation with me first and then at a later date have an outpatient treatment at a hospital by that doctor.

I looked up the doctor they are sending me to and he doesn't have the best patient rating, so I might try to get one that I want to go see with a better rating.
I'll do some research on the laser treatments as well, but if you have any information on them, i.e. what to go with, what to avoid, what to be aware of, etc...I'd really appreciate it.

Obviously not the news I was hoping for, I can only hope the laser treatment will be more successful and I can move beyond this all sometime in the near future...


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PostPosted: Fri Oct 15, 2010 3:53 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Laser for genital warts can especially be of value in cases where there are a number of warts and/or when other treatments haven't worked so well. On this topic, the CDC Treatment Guidelines say:

Quote:
Carbon dioxide laser and surgery might be useful in the management of extensive warts or intraurethral warts, particularly for those patients who have not responded to other treatments.


Let us know how everything goes. We're thinking about you!

Fredo

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PostPosted: Sun Jan 16, 2011 2:07 pm 

Joined: Mon May 10, 2010 9:57 pm
Posts: 15
Location: US
Well, another update...

I had my laser treatment about a month ago, the doctor was excellent and although it's early (and I'm hoping I'm wrong) but I think there are still areas that were treated that did not get rid of the GW signs. It's all pretty red still, but healing nicely over most of the area.

So here we are...2 years after I initially noticed the HPV, and 1 year after treatment has started (initially with Aldara, then with numbing/scraping/cauterizing, and now the latest with laser in a hospital). I have a followup in another 5 months with the urologist who performed the laser treatment.

Seems like it's all...wait 3 months, wait 6 months, wait wait wait. Treat, wait, treat, wait.

My life is essentially on hold...I've dated 2 girls since my HPV diagnosis and can't even put myself into it...it all feels wrong...not because they're necessarily wrong but I feel completely, utterly wrong and don't even want to put me or them in the situation I'm in. One I told about it, she was very understanding/accepting about it...but the relationship didn't last much longer. The other I just couldn't bear to tell, maybe a lack of comfort with the situation, lack of whatever...so I left the situation.

It's hard not to feel like such an important part of life is missing right now...and as each month passes, I don't know if I'll ever get back there with the unknown.

The one part I've thought about quite a bit is that my ex-gf (who I assume I got HPV from) never had any symptoms...only told me (after my diagnosis) that her ex-bf from 10 years earlier mentioned it...but she never had signs herself. But for me to get it from her, no symptoms...then she would have to be a carrier despite not having them. So that makes me believe...with the same type, even if I were to get rid of visible symptoms, I believe I can still pass this on to someone else. Knowing/Feeling that...and considering all that I've been through, makes me not want to ever put another person in that same position.

So how do you ever "move on" from that? Give up that part of my life indefinitely? Only seek out partners that have HPV...seeking out only partners with the type you have so you avoid all others (good luck with that, it's hard enough finding a person you match with...throw that in and you're probably at slim and none)? Put people through a grinder of questions surrounding their sexual history and hope they're being honest? Start dating, build up a friendship and trust basis to open up and tell these things...only to have that person become attached to you and then you drop a bomb on them they must consider, which could have very unwanted consequences (that I am fully aware of and am extremely leery of having anyone else voluntarily step into...I don't wish this on anyone). It just destroys the whole level of fun and intimacy...it's all this black cloud hovering over your entire sexual being and it's pretty damn miserable.

I don't know where to go at this point...I've been hovering in solitude for the most part, waiting this mess out, hoping it gets better, dodging endless questions from friends and family about "why aren't you dating?"...but I still have the aftermath to deal with regardless of visible symptoms. I don't even know how to date at this point...every physical move is taking a step down a path that is potentially misleading the other person...and regardless I just feel "wrong" or "dirty" even walking that path. They'll want more (last girl I dated), and I'm stuck. At the very least I feel like I have to wait until all visible symptoms are completely gone (which I'm unsure will even happen, at what point do I just say it won't?) and even then...I still have the concern of passing it on (without symptoms) like my ex-gf did to me (assumed).

Getting more and more distant as the days pass, definitely the hardest thing I've ever had to deal with in my life.

Will keep you posted here, at least it offers me an outlet from time to time...but hope is definitely fading (I know Fredo will call me out on disaster thinking, but I am a deep thinker...and things like this impact me equally deeply).


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PostPosted: Tue Jan 18, 2011 10:30 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hey there,

Thanks for stopping by and giving us an update. Man, I'm sorry this has all been so difficult, and no doubt you're justified in everything you're feeling. I think it's especially difficult for you because the warts are still present...a daily reminder. The cycle of treatment/wait/treatment has to be so...very...frustrating, to say the least.

I'm sorry to hear the relationship with the one girl didn't work out, but at least it seems it ended for reasons other than the warts. You're right, it's hard enough to find someone compatible and then you add persistent warts into the mix...doubly frustrating!

As for HPV transmission without symptoms, one possibility here is that a person can have symptoms that are so small they can be hard to see even with a medical examination. The vast, vast majority of those with any type of HPV never see or feel anything, but tiny lesions are often there (and they tend to self-resolve eventually).

Keep posting, come here as often as you like. Let us know how you're doing. Just curious, but do you mind me asking how you approached the topic with the one girl you mentioned?

Best to you!
Fredo

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