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National Cervical Cancer Coalition


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 Post subject:
PostPosted: Sun Feb 03, 2008 7:49 pm 

Joined: Wed Aug 01, 2007 11:09 am
Posts: 251
If you are over 30, I would suggest having an HPV test (HPV tests are recommended for women 30 and over). I had a friend who had HPV when she was 19. She is 37 now and just had an HPV test which came back negative. From what I have read, this result, combined with her clear Paps indicate that she is at a low risk of getting cervical cancer (apparently, her immune system did get it under control).

If your HPV test comes back positive for HPV, then you should consider a colposcopy. If it did come back positive, I would not panic, you are just taking precautions that are necessary by getting these tests/procedures, and if you find something, it just gives you an opportunity to take care of it before it becomes too problematic.

Good luck!


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 Post subject: permanent high risk
PostPosted: Thu Feb 14, 2008 3:06 pm 

Joined: Thu Feb 14, 2008 2:43 pm
Posts: 3
Hi guys. As someone who's been diagnosed with high risk HPV, twice, I can't help but notice the lean of most of these posts is twards GW and how to inform your partner in that context.

I'm 21, and have had 1 LEEP procedure last June and am about to have a cryo procedure done next month. Since the only time I have ever had unprotected sex was when I was fourteen, and my Paps have been abnormal, even after the leep, I have to conclude that I'm most likely going to have an active infection of high risk HPV for the rest of my life.

At this point I'm not even sure if it's responsible for me to have protected sex with an informed partner ever. Since I'm 21 and consider myself quite attractive and, er, interested, I consider this a great tragedy. Honestly, the hardest thing for me to accept is that not only did I f-mess up in a way that will have permanent consequenses; it seems that I'll have to continue to admit the circumstances of that event for the rest of my life to people I am most vulnerable to.

I don't have a boyfriend and haven't had sex for more than a year and a half. I was pretty unsocial growing up and am just now getting to the point where I think I can handle developing a relationship based on real intimacy instead of physical. Even friendships based on real affection instead of lack of options are kind of new to me. So, I'm asking for advice as someone who's interested in having a grown up conversation in the undefined future that won't end with me in frustrated tears because I can't think of a way to present this that isn't melodramatic. I'm pretty melodramatic and defensive by nature, so a previously defined game plan is going to be key.


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 Post subject: hpv
PostPosted: Sun Mar 09, 2008 4:52 pm 

Joined: Sun Mar 09, 2008 4:42 pm
Posts: 1
i have recently had oral sex with a guy and he just told me he has HPV. is there anything documenting whether you can get something from having oral sex with someone with HPV??? don't know if this all makes sense! i'm just freaked out and need some answers. i'm not a sexually active person and thought this guy was clean. i am single and want to know what is in store for me


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 Post subject: My HPV adventure
PostPosted: Thu Apr 03, 2008 2:17 pm 

Joined: Thu Apr 03, 2008 1:49 pm
Posts: 1
Hey everyone,

I am a 28 year old male. Two weeks ago I developed a wart on the inside of my mouth and having only recently been somewhat educated about HPV decided to go to a dermatologist for a biopsy. I got the results over the phone. when I called for my results it went something like this:

Nurse: "Yes, we got your results, it confirms that you have Condyloma, OK? Bye."

Me: "Wait! What is Condyloma?"

Nurse: "Your test was positive for Condyloma."

Me: "OK, what is Condyloma? Is that HPV?"

Nurse: "Yes. Ok? Bye, now."

Me: "No, wait! What does that mean? What kind of HPV do I have? Aren't there different kinds?"

Nurse: "You have the high risk kind which causes cervical cancer. OK? Bye, now."

Me: "Um, Ok."

So after crying and crying and crying I realize that because the wart is in my mouth, it is probable that I cannot even kiss someone without the possibility of trasmission. I called the nurse back and she confirmed that I could not kiss and if I wanted more information I could 'look on the internet." As we all know that proves to be very confusing. I asked her to send me my results and went off to cry some more.

After sending out an extremly painful email to all the lovers I have had in the past ten years about my HPV and thinking more about my love life several things came to the surface. Three of my former lovers had cervical cancer after dating me. Also I had genital warts once ten years ago, but the Doctor told me it was nothing. Now I have to wonder if that was HPV...

So after taking a vow of Celibacy because of my new status as a carrier of Cervical Cancer I get the actual test results in the mail and they say: "The lesion is positive for low risk HPV DNA probe and is negative for high risk HPV DNA probe."

What the Heck?! Low risk? The Nurse said High Risk!

So now I am totally confused. Does low risk mean it only causes warts and not cancer? When I read statistics that say 80% of young women will get HPV, does that mean it's OK to have sex with low risk HPV? I really want to do the right thing here and if that means being celibate, so be it, but so far neither that terrible nurse, nor the internet has helped very much.


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 Post subject:
PostPosted: Thu Apr 03, 2008 3:20 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi and thanks for posting. Low-risk HPV types are indeed the ones virtually always associated with "condyloma" or warts, and are not the types linked with cervical cancer.

It's important to keep this perspective, too: Most everyone, male or female, will have one or more HPV infections over the course of their lives. We know that even with high-risk HPV, though, very few cases ever result in even a single abnormal Pap test, much less cervical (or any other type) cancer. The key is not to abstain from sex, because you're not likely to spare anyone an HPV infection by doing so. The important thing is for women to have regular Paps, and THAT is the frontline of prevention for the relatively few women who have high-risk HPV infections that persist and may elevate their risk.

Kissing is not defined as a primary means of HPV transmission, but nobody really knows just what the risks are there. The usual guidance is the obvious: don't kiss or perform oral sex while a wart is present. It isn't likely HPV will persist over the long term, as the immune response generally clears the infection at some point.

I hope that helps. Post again anytime you want to chat about something.

Best,
Fredo

_________________
ASHA Moderator


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 Post subject: Thanks Fredo
PostPosted: Fri Apr 04, 2008 11:14 pm 

Joined: Thu Feb 14, 2008 2:43 pm
Posts: 3
Now that was something that was helpful to hear. Articulation is something that is something personally difficult for me, and I dearly appreciate the way you responded.


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 Post subject:
PostPosted: Thu Jun 12, 2008 8:04 pm 

Joined: Thu Jun 12, 2008 6:46 pm
Posts: 1
I have read so many posts and people questioning whether it is safe to assume that , the more time that goes by, the less chance of, maybe, having a recurrence, or maybe, infecting a partner. Well I have to tell my story. I’ll try to keep it short.
Was infected when I was 17yrs old, I am now 35, with 2 children (5 & 3 yrs). When I first found out I was infected, the doctor treated them and within a month there was no sign of any warts. I kept going to him for follow-ups, every 3 months, then every 6 months, and so on, until one day (about 3 yrs later) he told me to stop worrying about it, he said that (they’ve) found that for people who do not have an occurance in this amount of time (3 yrs) , it is highly unlikely that it will come back. So I asked him should I ever tell anyone about it and he said “no, it’s not significant enough for you to be so stressed about.” He also, said something about my immunity being built up to it and not to worry.
Just to make it clear, he was a very good doctor, not flaky but very confident in his approach and clear in his instruction and advice.
I should also mention that over the past 17 years, I have not been the permiscuous type, but I have had several long term relationships (5yr, and a couple of 3yr). But I also have passed over many opportunities because of HPV. It really sucks how this can “run your life”.
Anyway, 17 years later and I’ve been married now for 31/2 years. Everything going great and nearly forgot that I ever had HPV until I noticed a spot on my husband (on our honeymoon no less). My husband has not had very many partners at all. Two maybe 3 and he had a long “dry” spell just before me. So, I am convinced that my HPV has become active 17 years later. However, there are no visible warts present on me, only my husband. I am going for a coloscopy soon and maybe that will tell me more. I have always had regular pap smears and sometimes I have 2 per year. All of them normal. I am also convinced that, if my HPV has returned, it is because of my last pregnancy. I had a very healthy, normal pregnancy but gained a lot of weight. The baby pressed hard on my pelvis for the last 2 months of the pregnancy. Also, after giving birth, I had so many physical ailments, really, too many complaints to list here. The point is, I felt so physically drained from it all that I think my immunity dropped and the HPV “reared it’s ugly head again”. I am no doctor but I do know my own body.
Regardless of how, when or why, I’ve gone back to feeling the same way I felt 17 years ago. (You know those feelings...shame, guilt...etc, etc) My marriage is suffering because of it. I find myself “looking for a way out so that I do not have to deal with the pressure of “having to have sex”. We hardly have sex anymore anyway. Also, I am worried because we did have sex orally before this happened and I’m worried about the implications of that. I’m afraid to ask my Doctor to look at my throat because I’m afraid of what he will find. A lot of times I think I would like to separate from my husband so that I would not have to even think about it anymore. I would just deal with it on my own.
Note: I have remained friends with everyone (the 3 relationships I mentioned) who I’ve been with over the years and I know that they have never got ‘it’. I never did tell any of them and I don’t regret not having told them. I also don’t regret not telling my husband before we got married. That doctor was right and it’s not significant enough to tell every person you might have a relationship with.
I have a lot more I can say and tell
Ciao for now


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PostPosted: Fri Jun 20, 2008 5:24 pm 

Joined: Fri Jun 20, 2008 5:17 pm
Posts: 2
Hi All,

I'm new to this forum and appreciate the honesty of everyone's replies. I was diagnosed with HPV over a decade ago and still struggle with how it's changed my life. I just found out about a new book by a researcher who was also diagnosed with HPV and did a study of women living with HPV and/or genital herpes. It really speaks to me, so I wanted to share it with you all: Damaged Goods? Women Living with Incurable STDs by Adina Nack. We need more people taking this disease seriously and doing the research to help those of us living with it and hopefully helping practitioners understand us better.

_________________
Living with HPV


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 Post subject: HPV new diagnosis
PostPosted: Thu Jun 26, 2008 6:12 am 

Joined: Tue Jun 24, 2008 4:22 am
Posts: 2
I am a South African male, yesterday June 23rd I accompanied my girlfriend to to a gynae and she was diagnosed with HPV (warts).
We are in a new relationship and we haven't had sex yet. Now my worry is that what the Dr said. He mentioned that HPV will not go away and the prescription that he recommended does not guarantee that the warts will be gone forever.
Say after the the treatment I happen to have sex with my girlfriend, how safe am I from contracting HPV with or without comdoms. The doctor also mentioned that condoms are not 100% safe against HPV. I am confused and I want to support my girlfriend.
How long after or during treatment can we engage in sex?


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 Post subject:
PostPosted: Sun Jun 29, 2008 11:19 am 

Joined: Sat Jun 28, 2008 10:49 pm
Posts: 3
My story is VERY different from some of the others posted here. I am a 50 year old woman, married to the same man for 32 years. There have been no other sex partners in that time. At a recent routine pap/HPV test-- i was floored to be informed that i tested positive for high risk HPV. My pap was normal, though. Now- the choices.....wait 6 months to re-test or have a colposcopy now and see what is going on. My question is------is it "over kill" to do the colposcopy while the pap is normal---i am told that many hpv infections clear up on their own. And- even with the colposcopy i still need to re-test every 6 months. Any advice on this? :?: :cry: :?:


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 Post subject:
PostPosted: Mon Jun 30, 2008 9:53 pm 

Joined: Mon Jun 23, 2008 9:13 pm
Posts: 89
I was diagnosed in early June of this year with HPV. I'm having a colposcopy tomorrow. I am a little confused as to the type I have especially since my boyfriend has warts. My pap smear was abnormal (LGSIL). I thought paps found only high risk kinds of HPV. Is it possible that I have both high and low risk? I also have an appt with my general practice doctor b/c of throat irratations. I'm concerned about oral HPV too. :( Feeling a little down, but thank God for my boyfriend and all his support, understanding and his positive attitude.

Praying for the best tomorrow. Will check back in to share.


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 Post subject:
PostPosted: Tue Jul 01, 2008 11:30 am 

Joined: Tue Jun 24, 2008 12:26 pm
Posts: 127
want2bdifferent,
A PAP can show abnormal changes from high OR low risk HPV. I've had GWs (hate to even say the word "warts") removed before, had only one abnormal PAP ever, in 17 years. They did a colpo (just the visual check) and said everything looked fine, went back to having normal PAPs. I had a bump biopsied recently from "down there", tiny little thing, but every little bump scares me. The biopsy came back as normal old skin. ALL of the HPV DNA tests have come back negative for HPV. I even had the one that checks for 13 or 18 specific kinds....negative. I'm scratching my head. I've been to seven or eight DIFFERENT doctors, including Hopkins, asking about little bumps in my mouth on my gums and under my tongue. My throat also is very irritated on a regular basis. I was diagnosed with acid reflux, put on meds for it and sent away. I was told I am a "worry wart". Poor choice of words, huh? :) I've been battling female bacterial infections recently and so has my daughter. She and my fiance also have the bumps and little skin tags under their tongues. I had her looked at too, sent me home saying it is normal. No one will even biopsy one of the bumps. My fiance found out that he isn't producing sperm - semen, but no sperm. Could his tubes be blocked by GWs? We may never know.I think low-risk HPV causes more problems than doctors suspect. Let me know what the doc says about your throat!


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 Post subject:
PostPosted: Wed Jul 02, 2008 7:19 pm 

Joined: Mon Jun 23, 2008 9:13 pm
Posts: 89
Well, yesterday I had my colposcopy/biopsy (painful) appt. My gyno said that she would be surprised if further procedures were necessary and she'll probably just ask me to come back in 6mos. Bitter sweetly, my bf has to see the neurologist to probably get his growths surgically removed, because the aladara wasnt working. They didn't get worse but they didn't get better either.

As far as my appt w/ the internal medicine dr....she said that in all of her years she's never seen anyone w/ genital warts in the mouth. She examined my mouth and throat, then proceeded to my ears and nose. She said my ears and nose had signs of allergy infections which is probably the cause of my throat irratations too. She offered to do a viral culture of my throat to check for HPV but...I chickened out and declined. I mean what can I do about it even if I do have high risk HPV orally?! She said I shouldn't be worried or ashamed.

This disease doesn't mean that I didn't take care of myself or that I'll develop serious health complications since I follow up with my doctors regularly.

Damsilindistress, maybe you shouldn't worry either. Just keep an eye on the bumps and see if you notice any changes over the weeks/months. Keep your head up and be more positive. Life goes on and this is just one small part, we can beat this.


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 Post subject: Update!! HAPPY YAY!!!
PostPosted: Sat Aug 23, 2008 9:33 pm 

Joined: Mon Aug 27, 2007 8:19 am
Posts: 5
Okay it has been about a year since my last post and I have been emailed by a few people in situations like mine so I would like to start by saying, PLEASE EMAIL ME IF YOU NEED SUPPORT!!! I have learned to grow so much from HPV. That guy I was talking about in my previous post, we have now been together more than a year, and are happy as ever. Unlike all the other guys, he was educated and accepting and willing to forgive me. We have a fabulous relationship, and he knows I check myself regularly to make sure the warts are not returning to help minimize the risk of infection. If you are struggling with telling someone about your HPV let me tell you it is the hardest thing you will ever do. Some people will reject you and make you feel disgusting, but if they do that you need to remind yourself that you aren't disgusting and that they just aren't ready to understand the virus, and that many estimates out there say 1 in 4 women have HPV, and if that is women, I'm guessing men are 1 in 2 that have it. (not that I'm saying men are more promiscuous, oh what the heck I kinda am generalizing that they are. no offense to you men, its not meant in a bad way.) And if you really want to get down to HPV, if a person has ever had a wart on their hand, that is HPV. Its like type 1 or something, but it is still the virus, just not the genital part. I learned that the more people I opened up to about me having it was #1 the hardest most embarassing thing ever and #2 that a lot of the people I told either had it, or new someone close to them that did. When I first learned of my HPV I felt so alone, and I've learned that I really am not alone, and I want you to know that you aren't alone too. I had a success story with my HPV and a relationship, and while I had to take a lot of heartbreak to get there, I got there, and I know you will too one day. I'm always here to support you if you need it, just put ASHA in the email subject line, and I will be your own personal support group or whatever you need me to be. You can't be alone when millions of people have the same thing. Best of luck to everyone!!! (oh and thanks for all the support I get from people too!!!)

Sam


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 Post subject: about HPV
PostPosted: Fri Aug 29, 2008 12:18 am 

Joined: Fri Aug 29, 2008 12:02 am
Posts: 2
hi..i was detected that i have a HPV 16 -18..i was shocked of knowing that..stressful..really have a sleepless night...is that virus really a big deall.what i mean is do that virus will lead to crvical cancer..by the way im 35 yrs old and after knowing that i have this virus my ob gyne gave me a vaccine for prevention...but till now i keep on thinking about this...please help me...i really dont know what to do..thanx


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