HPV Support Group

Human papillomavirus is a diverse group of DNA-based viruses that infect the skin and mucous membranes of humans. More than 100 different human papillomavirus (HPV) types have been characterized. Some HPV types cause benign skin warts, or papillomas, for which the virus family is named. HPVs associated with the development of such "common warts" are transmitted environmentally or by casual skin-to-skin contact.

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HPV - Q&A from Specialists

Hi all,

I recently was diagnosed with LR HPV- genital warts. To say this has caused devastation is an understatement. I am grieving a future I thought I had but no longer seems reachable. Im angry also that only some of us deal with the symptoms and know we carry this when so many people get away scott free. The lack of symptoms and testing causes the stigma attached with HPV.

In order to find out as much as I could about HPV I have emailed a few reputable sources to get their answers. Below is a summary of the replies I got. Please take a look and let me know your thoughts. Also if you want me to ask them further questions please let me know.

1. On testing of low risk HPV
- There is a low risk test called Diagene Probe A. Not commonly used but is out there. Your doc can order it on a pap test.
-A low-risk HPV DNA test does exist but there are no clinical indications nor recommendations for its use.
- There is no test as what is the point of testing when most people would be positive.
2. On the likelihood of clearing the virus.
- If you do not smoke, have AIDS/HIV or transplanted organs your body has an excellent chance of clearing the HPV. Whilst this cant be 100% confirmed that this happens it is a very high likelihood that the virus clears and remains gone.
- In 90% of cases, the body naturally clears an HPV infection within two years. This means that a person is no longer infected with HPV. If you were to test negative for low-risk HPV and later had another episode of genital warts, this would be caused by a new infection. It would not be from your original infection since your body had already cleared that infection naturally.

3. On the rates of recurrence
- It is hard to distinguish between reoccurrence and reinfection. Reoccurrence can happen under extreme stress or hospitalisation but women do not usually have reoccurrence's.
-The idea of re-occurring outbreaks, is an old one. Now it is thought that rather than re-occurring outbreaks, most people experience re-infection. (The only time this is different is if the individual is living with a compromised immune system in which case re-occurrence is more likely). Often people who have one occasion of genital warts, never have another one.
- Another source quotes that they generally re-occur after 3 months.

4. On what the likelihood is of getting rid of warts for several years and then them coming back in pregnancy
- Less than10%.
6. On telling partners current and subsequent about infection
- Persons with genital warts should inform current sex partner(s) because the warts can be transmitted to other partners. In addition, they should refrain from sexual activity until the warts are gone or removed. It is not known how long a person remains contagious after warts are treated. It is also unclear whether informing subsequent sex partners about a past diagnosis of genital warts is beneficial to the health of those partners.
-until we have a test for men, it is not morally imperative that you tell anyone you have had HPV. that is a silly idea - like telling men that you menstruate.... totally uninformative and just puts you in a powerless position...
- If you are close enough to get intimate with someone you should be close enough to tell them something like that.

I will update once I have more info but PLEASE let me know your thoughts on the above




I will answer as best as I can, I'm a male and therefore cannot answer most of your questions, neither am I an expert or a doctor. But I'll do what I can.

1. I don't know

2. It really depends on the body. Someone here recently said she has it for 8 years. I knew of this guy (who was also from this forum) who had it for 8 years and miraculously, he was cured one day. He just said that he went to check his penis and violah, no more warts and he has not been seen ever in this forum again. In fact, you can check out a recent comment by JC, he was a success story and if you check the archives, a lot of people were here but they left because they are free from HPV. Some people take 2 years, some only had one outbreak and they're gone. Some people dealt with it for 5 years or more.

The doctor I spoke to actually said 2 years is an UNDERSTATEMENT. 2 years is NOT the precise date that people are cleared from HPV. She said that the REALISTIC STATISTICS for clearing HPV is actually 4 years or more.

3. Recurrence is hard to determined but it is link to my answer in the 2nd point. Everyone have their own health system.

4. I don't know but if you have more information, that'd be great. I want to have kids with my wife next time...if I do have a wife.

5. Where is 5?

6. This is a very personal thing. Some can live with not telling, some cannot. Some allow guilt to consume the person, sometimes they feel they can get away with it. To me, it is best to tell. "Treat others how you would like to be treated". I wouldn't want anyone I am with to hide such a secret for me. If you love me, tell me, let us face this together. If you trust me, tell me, so you know I'm there. And vice versa.

Igrief, thanks for your response.

I will try to get more information on the pregnancy part for you.
I am also goin back to the clinic for my first cryo session tomorrow so will so will ask more questions then. Also can anyone tell be what to expect eek! Will I have a sore you know what?

In relation to reoccurance's it seems like most people only have one to two outbreaks judging by the fact some people only have one post on here then none again! I suppose this is enlightening. I will remember when I hopefully finally clear to update with happy statuses.

I am with you in the fact that you should disclose health issues with all partners however it is a frustrating subject. For instance say in 3 years I meet someone and haven't had an outbreak in 3 years and have been told by my doctors to say nothing but I decide to tell the person I previously had genital warts the likelihood is they will run a mile. Whilst we all know here now that it is common and a lot of people have it without symptoms that is not the general consensus in public. Sure only the other day my sister was talking about an ex friend of here's who has the disease and therefore apparently is a skank. I haven't told my sister due to this attitude she has but am building up the courage to tell her that her underdstanfjng is wrong. I am not a"skank" but yet I'm stuck with it. I understand why people would want to run the other way. For example men never know they have hpv without the actual warts. So they live in blissful ignorance, why would they want to jeopardise this. Especially since the facts are so inconclusive that you can't even tell them you Defo have cleared it etc! Also I understand that if someone cares about you they will stay but the reality is in this day and age people generally have sex before they are in love, that is the modern day dating scene. Also you don't want to lead someone on for moths if the risk to them is not worth it. Sorry for sounding moany but I'm having a bad day today!

The cryo is not that bad, it's like a little stinging feeling.

Personally I'd prefer that treatment over 12 weeks of Aldara.

I had the cryotherapy and the dr. gave me condolyn gel and if you can get it I highly recommend it.

I have been through the Aldara, Cryo, and Condolyn, I have also bought the Terasil, taken supplements from activamune (very expensive, but worth it). I am at this moment wart free for over a month :)

Also is there a way to send an email message to everyone in the group so that we can ask old members to check in. That way we could get a percentage of who has cleared etc?

Iwillneverbethesame thanks for your reply. I thought it best to get the cryo as they can see more there than I can see so at least hey will zap everything.

How are you getting on with your challenge,relationships etc?

I have not dated anyone in almost a year and a half. I am terrified and still going through the emotional aspect of all of it. If I ever date again, it's going to be with someone who really takes the time to know me and when I am ready to handle that type of rejection. Right now I couldn't do it.

I was not very well when I found out and it took me months to stop crying all the time. I am better mentally than before, but I still have the crying fits occasionally.

It's a process I guess we all go through our own ways of handling it.

Thanks for the informative post Rosie. I was fortunate to find a good dermatologist that I go see for my genital warts. I have been seeing him every four weeks since Sept. 2012. I am very familiar with the cryo treatment. When I first met him and we talked he told me that over the years he has seen the best results with the cryo. It is not necessarily cheap, an exam($50) with cryo treatment($65) can run up to $115 per visit. If I am clear then I only pay for the exam.

A couple of advantages of the cryo is that it kills the wart instantly. The second they freeze it the wart dies. Everything else after it is frozen is the healing process. Personally I liked that. No applying creams for weeks/months or putting acid solutions like acv on. Everyone has a treatment that makes the most sense to them, both personally and financially, and will work the best for them for me the cryo works well. The other advantage of the cryo is that let's say the doctor is wrong and the spot he treats is not a wart but instead a gland or small patch of oil under the skin. Treating it with the cryo will not harm that spot. Yes the area treated will have to heal up but you are not necessarily damaging things permanently.

I don't know if this is your first treatment with cryo, but if it is on your follow up visit, you and your doctor should evaluate how the treatment went, did it work well, and how well did your body heal up. For me the area treated does one of two things. The area either scabs over and then the scab falls off. This usually takes about two weeks total, or the area will swell up slightly and get red and then the swelling and redness goes away. Again this takes about two weeks as well. By the time the forth week rolls around and I go back to the doctor you can hardly tell where the treated area was/is. Some areas will take longer to heal and I do have some areas that have taken several months for the redness to go away but that is more the exception than the rule.

A couple of other things. If there is a hair follicle in the wart, it is definately not a wart. Also don't be too surprised if things get worse before they get better. All the wart treatments that I know of are all trying to do the same thing. The treatment is trying to kill the visible wart(s). By killing the wart it is also irritating the virus. By irritating the virus the doctor is hoping that your immune system will better identify the virus and find a way to surpress it. The virus is not happy about this and will try to live/multiply. Warts have 3 goals, they want to show up, they want to stick around, and they want to get bigger. I know after a couple months of treatment I went from having 2 or 3 warts to treat to having 4 or 5 warts to treat. Not long after that though it got a lot better and since March I have had either zero warts or one questionable "wart" which we agreed to treat. Each questionable spot was basically a dot hardly visible but why take a chance. Again one of the advantages of cryo, you can get a little aggressive on questionable spots. You may be one of the lucky ones and your body will react quickly and things won't get worse but instead clear up and not come back. According to my doctor this does happen to some people. Let's hope for the best.

Good luck and best wishes.

"The doctor I spoke to actually said 2 years is an UNDERSTATEMENT. 2 years is NOT the precise date that people are cleared from HPV. She said that the REALISTIC STATISTICS for clearing HPV is actually 4 years or more. "

I REALLY hope that's not true. I hate the thought of having even more surgeries for the next 3 years to get rid of this crap.

" I have also bought the Terasil, taken supplements from activamune (very expensive, but worth it). I am at this moment wart free for over a month"

Thanks for sharing these. I'll definitely have to research on the particular supplements.

"Also I understand that if someone cares about you they will stay but the reality is in this day and age people generally have sex before they are in love, that is the modern day dating scene. Also you don't want to lead someone on for moths if the risk to them is not worth it."

This quote resonated with me. Unfortunately it's hard to find someone that's willing to be friends for a period of time before getting in the sex discussion. And in my case being gay, a lot of guys have this thing about wanting someone "DDF" (Drug and Disease free - neverminding that they may not necessarily be those things). Of course those aren't the right guys for me but they seem to be prevalent unfortunately.

Hi all, so just back from my first cryo which wasn't so bad. I had a tonne of questions I wanted to ask the nurse but I got upset an just left without asking. I think part of me thought when I went back they might say they had got it wrong and I don't have warts. Sure I would never be that lucky.

Throughout the treatment the nurse was telling me what she knew about warts and it basically doesn't agree with what I had posted previously which was answers received from the CDC, Dr d Harper who worked on guardasil, and a support service based here in Ireland. I also got answers from the Irish family planning clinic which I will post on here shortly. The clinic I went to today said that the virus is believed to be for life, she said that most people get reoccurance's down the line and the very lucky few have no outbreaks after, they also told me when I first got diagnosed that you only need a condom when you have actual warts( I laughed coz lets face it the chances of ever having sex again are slim to none)! This is completely diff to what other organisations say. The problem is the answers are so incomplete. Also something else i think is that the lack of testing is ridiculous, surely testing would stop the spread of it.

Midas I know exactly how your feeling, how long have you had symptoms for?

I don't Know when my anger will subside if it ever does. I was thinking today how there is so many people who have multiple partners nd will never be affected by this. I have had 4 and only one was outside a relationship(8 yrs ago) yet I have this raw deal! God I wish for a miracle! Imagine a cure, but sure why would they bother when the reality is they don't care coz its not dangerous! I tell ya what it certainly is mentally damaging!

I have been wart free for just over 6 month I had anal warts for 2 years before I got surgery. They have not come back and I hope they never do it was HELL what I when though here. But I was really lucky to have a lot of good support around me! Just keep fighting and take care of your well being

Answers from doctor in Irish family planning clinic

Sorry to hear your obvious distress.
I will try and answer your questions though as Im sure you understand, there is a large variation among individuals in the way any disease progresses.
1. Most people fully clear the virus within 18 24 months.
2. Infected people can transmit the virus at any time until it is cleared whether warts are present or not.
3. There is no test currently available commercially.
4. The vaccine protects against the 2 strains which cause most genital warts so there would be a good chance of protecting against further infection by getting it. Obviously, the main purpose of the vaccine is to protect against cervical cancer causing types of HPV but as long as you get the Gardisil brand, you are also getting wart protection. There is no need to wait until the virus is cleared to get it as is does no harm if you have already been infected with any of the strains present.
5. Recurrence rates are very variable. Pregnancy can be a trigger but if the virus has been cleared, it is gone
6. With regard to telling future partners, which can be the source of major psychological distress caused by HPV, I would say if you are free of warts for 2 years, it is most likely that you have cleared the virus and should not regard yourself as being infective. Also as you rightly point out, most people infected with this virus remain blissfully unaware of the fact and are the main sources of infection.
7. Lastly, I want to stress that while unsightly and distressing, warts have no medical significance. I am not in any way trying to suggest that you are not suffering from this but simply to dispel any false information you may have picked up regarding links to cancer. The strains of HPV that cause warts are not associated with increased risk of cancer, do not adversely affect babies in utero or have any serious physical health risks.

Well Rosie welcome to the roller coaster of hpv information. I would bet if you talked to another healthcare provider you will get a different answer, talk to another healthcare provider you will get a different answer, and so on and so on. This is one of the things that makes it so difficult to get a clear understanding about hpv and its effects both initially and long term.

There seems to be a lot of debate as to whether the virus is cured and removed from your body or if it just goes dormant but could show up again. I believe that the virus goes dormant. That eventually your immune system figures out the right formula and is able to surpress the virus. Modern medicine has never been able to kill a virus. Aids, hpv, hsv, polio, the common cold, etc are all viruses modern medicine cannot kill/cure on its own. Now, of those viruses modern medicine has had tremendous success with vaccinations. It seems that the vaccinations do seem to work. You don't really hear about polio except in third world countries these days for example. In general, medicine seems to believe that viruses stick around. If you have had chicken pox the shingles virus is left in your system. Ever had mono? If you have the epstein barr virus is left in your system. If that virus is not surpressed by your immune system it is believed that it could lead to cronic fatique syndrom, or some cancers, or even to MS. From what I have read they say that over 95% of the population has it. Yet no one seems to worry about that. I believe if viruses like these can lay dormant in your system what would make hpv any different. So I believe that the virus eventually gets surpessed by your immune system. However viruses are patient and they tend to mutate and lie to your immune system.

Now if you're looking to become filty rich, and I mean so rich that Bill Gates or Warren Buffet would come to you for a loan, find a way to test for genital warts. Just some sort of swab test that would only take a moment and provide instant accurate results. Something a doctor or nurse could do or even some kit that a person could use in the privacy of their home. I have heard about the vinegar test but that does not work. I tried it on more than one occasion and it never did a thing.

If you do come up with this test, and become filthy rich, I would like a "modest" annual residual for coming up with the idea. You know enough to get a few new motorcycles every year, a big house with a paved track in the back yard, a private jet, and Hawaii(yes, all of Hawaii). Who knows, at that point I might even end up thinking hpv was the best thing to ever happen to me? Don't worry I'll come back to reality in the morning, but I do think I'll sleep well tonight. :)

Best wishes to everyone.

Hi Rosie...I first felt symptoms of the warts late January 2013. I had my first surgery on March 22nd, had a recurrence around June and a week ago had my 2nd surgery. So it's been almost 8 months. Keeping my fingers and toes crossed that I don't get yet another recurrence.

I'm glad your cryo treatment went good. It is frustrating reading all the conflicting info regarding HPV and specifically on the warts. Like you said the priority for finding a cure is lower because it's not life threatening but yes it is quite mentally draining. :-(

mentally draining oh yes that is for sure even though my warts have not come back I still think about it every day. then when having sex its more on my mind is it really gone or am i passing this on to someone (all my partners know about my HPV) yet my GP still has said there gone and stop worrying easier said then done it ain't your ass that went though hell!

Thank you for helping me find out about the pregnancy thing! I appreciate it. And to be honest, 18-24 months is really a bad statistics. My doctor said a realistic period is actually 3-4 years on average.

So for those who hit 2 years and HPV is not cleared, don't panic! The average period is 3-4 years. If you're beyond that, DO NOT EVER PANIC! Someone here had it for 8 years and miraculously, he was cleared from HPV.
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