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National Cervical Cancer Coalition


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PostPosted: Mon Jun 21, 2010 3:02 pm 

Joined: Mon Jun 21, 2010 9:41 am
Posts: 10
Location: US
Hi all. Long time lurker, first time poster.

I'm a female, in my 30s, and was diagnosed with low-risk HPV (our good buddy GW) six months ago. This wasn't a huge surprise to me, as my partner received his diagnosis almost 10 years ago. Given that condoms cannot protect you, I had some knowledge of the risk I was undertaking.

What I wasn't prepared for, though, was the myriad of treatment options, the pain (both emotional and physical), the low efficacy rates of treatment, and the blase attitudes of many practitioners. When I first went to PP, I was told that I didn't necessarily have to have any treatment, that many practitioners just leave well enough alone because the virus will eventually be destroyed by your immune system and it's for purely "cosmetic" reasons that people opt to have treatment. The shock was evident on my face, and she quickly rephrased her statement to include "emotional reasons as well!" I had cryo that day, on four little warts, and while the pain was surprising and unexpected, it wasn't horrid, and felt like a bee sting. Sitting was sort of difficult, and showering....yuk. I was clear for about a month, and they returned. I went back for another treatment, and was again clear for about a month. In March I began seeing a counselor, and started anti-anxiety medication. However, the little buggers returned again, and I proceeded to have cryo every 2-3 weeks until this past Monday, when the NP looked at me and said, "Look, we're just not getting ahead of this thing. You need to see a derm." I asked if I was doing something wrong in the shower that was triggering the virus again. She didn't know. I asked about transmission via towels, toilets, etc, and was told no. "Well, what about if I'm showering and I touch a wart while I'm soaping and then touch another part of my genitals?" Her response was that memory cells should recognize the virus and know how to combat it. Then came the immune system questions. "Do you smoke? "No." " Drink?" "No." "What's your HIV status?" "Negative." "Do you have diabetes?" "No." "Do you take supplements?" "Vitamins B and E, Folic Acid, a multi-vitamin, and Viactive." "Huh. You're doing what you should be doing...that's just weird!" "Great." I then started doing some research on-line, perusing medical journals to try to get some "real" answers. One study stated that the older a person is, the more resistant to treatment they are. Under 20? GW clear up in 1-2 visits. 20-30? 3-4 visits. Over 30? Good freakin' luck. Awesome. So I made my appt. with a derm, and went to see him last Tuesday.
His response to the shower question was 180 degrees opposite. "Yes, it is theoretically possible for you to transmit the warts to other parts of your genitals while showering. I suggest you use a washcloth." ACK! I already use a different towel every time I shower, and now I'm using a new washcloth, too. Then came the barrage of immune questions. "How many treatments have you had?" "8." "All cryo?" "Yes." "Do you smoke?" "No." "Drink?" "No." "What's your HIV status?" "Negative." "Have you had an anal pap smear?" ".....What?" Yeah, I went from "Many people opt to not treat this at all" to "You need an anal pap smear because perianal warts are linked to anal cancer. It's a low probability, but you need to rule it out." WHHHHHHAAAAAT?! So if stress levels are linked to your immune system, it's no wonder I can't get rid of these stupid things; every time I see a doctor I learn something new and awful about this stupid virus that makes me freak out completely, and nobody seems to have the same information available about it. I hit the journals again, and learned that with any type of HPV an anal pap smear should be conducted; the thought is that the virus can be shed during sex and can travel down to your anus via the secretions. I'm so not ready to deal with that yet.
Tomorrow I am receiving TCA and a blistering agent. I was promised that it would hurt, that it would be frustrating, and that I would have to go back in a week because he wasn't planning on treating me all in one sitting due to the pain. I was also told that humans always win, and that we will eventually beat back the virus, but man o man. I really perseverate on it, especially when I'm alone, and am really not looking forward to it.

Well, if you managed to read my diatribe, thanks. It kinda feels good just to get this all out there.


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PostPosted: Wed Jun 23, 2010 8:55 am 
Site Admin

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

Thanks for your post, and wow, what a rough time you're having. I'm sorry this has all been so difficult.

Let me say something first about anal cancer. This is a relatively rare disease and is most often linked to types of HPV other than the "low risk" types that cause genital warts. There is little consensus on the need for routine anal Paps, as the extent to which anal Paps might reduce anal cancers isn't well understood yet. The take home point here is that anal cancers aren't common and, when they do occur, usually involve HPV types other than those found in genital warts.

As for recurrences, they aren't exactly rare and tend to happen more in the first three months or so after treatment. This is highly variable, though, and of course it's not unheard of for someone to have multiple rounds of treatment. You're absolutely right, this is painful, embarrassing, inconvenient, and just a mess to deal with. It makes you wonder if anything is ever easy!

TCA is a common means, probably the most common way, of removing external genital warts. It has a pretty good track record. There are actually a number of approaches to treatment, and you can read about them at http://www.ashastd.org/hpv/hpv_learn_warts.cfm#7. There are surgical options, provider-applied chemicals (like TCA), and even take-home prescriptions: one of them, Aldara, works by stimulating an immune response (at the local, cellular level) in the area where it's applied. In addition to working as a treatment in some cases, it's also associated with lower rates of recurrences. It can cause skin irritation, usually mild, but some people report it can really sting and be uncomfortable.

Hang in there, let us know how you're doing, and stop by anytime!

Best,
Fredo

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ASHA Moderator


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PostPosted: Wed Jun 23, 2010 12:47 pm 

Joined: Mon Jun 21, 2010 9:41 am
Posts: 10
Location: US
Hey Fredo-

Thanks for the reply. I did discuss other treatment options with the derm, and he stated that TCA was the next logical step after cryo. Apparently both have similar efficacy levels, and it really depends on the person with regard to its effectiveness.

I must admit, I had quite a chuckle when I followed that link and read about TCA. It leaves a bit to be desired in its description. I went yesterday for treatment, and I feel like Yosemite Sam (My biscuits are burnin'! My biscuits are burnin'!) The initial application wasn't nearly as bad as cryo, but as the night progressed, I found myself feeling as if I had suffered a sunburn on a rather delicate area. Ouch. The feeling persists today, but with a bit of ibuprofen it's not horrible.

Aldara (imiquimod, right?) is something I really want to stay away from. I did some research in the medical journals (Journal of Derm, Journal of STDs), and not only do they not fully understand how/why it works, the side effects seem to far outweigh the benefits. Plus, its efficacy rate is as low as the other treatments, and since I have really sensitive skin, it just does not seem like a good plan for me.

I also read a few articles that stated that hypothetically, you can contract HPV from heavy petting (skin to hand to skin). I asked my derm about this, and he confirmed it. One article had 500+ people touch their GW, then their hands were examined, and in most of them they found traces of the virus. Scaaaaaaary! Yet another thing that isn't mentioned in many of the resources we are given. :(

Still hanging in there (with roasty buns),
whyme.


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PostPosted: Mon Jun 28, 2010 12:21 am 

Joined: Mon Jun 23, 2008 9:13 pm
Posts: 89
It's been a while since I've posted anything. But, I just want to say...Wow! I just read your initial post. It kind of deads the whole theory that we won't always have HPV. You said your partner had first been diagnosed 10 years ago and he still was able to pass it to you. : ( Mannn!!! I was hoping that I wouldn't always be contagious. I had one abnormal pap (May 08), 2 weeks later my now ex bf said he had gw. I still don't know if he gave it to me or I gave it to him. 8 months later my pap was back to normal and have been ever since. I never had any visible warts. Needless to say, it's been 2 years and I'm still confused. I stopped dating and stopped having sex. I'm having real issues with moving past the experience. Anyway, I hope your treatments help you eradicate the gw once and for all.


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PostPosted: Mon Jun 28, 2010 6:50 pm 

Joined: Mon Jun 21, 2010 9:41 am
Posts: 10
Location: US
Hey Want2be---

You said your partner had first been diagnosed 10 years ago and he still was able to pass it to you.
---True, but we began having sex in 2006. I don't know if that makes it better or worse in terms of time frame. :/

I was hoping that I wouldn't always be contagious.
--- I'll tell ya, none of the girls that interacted with my current partner tested positive for HPV, neither low- or high-risk. In fact, they were all in shock when he contacted him to tell them he had it (he was trying to figure out where he got it, not that it mattered). To me that says that conditions have to be right for it to show up once you've been exposed. We were together sexually for four years before I manifested symptoms, and I firmly believe it's because we had a crazy few months leading up to it, including a trip overseas where I was sick as a dog. My immune system was shot, and just couldn't fight it off anymore. So I don't think it's safe to assume you'll always be contagious. As my derm told me, "It's frustrating, and it sucks, but the humans always win." :)

I had one abnormal pap (May 08), 2 weeks later my now ex bf said he had gw. I still don't know if he gave it to me or I gave it to him.
---Aggravating, isn't it? We spent tons of time trying to piece together where he got it from, but in the end we realized it doesn't matter. He can't go back and undo anything, and we both have it now, so forward is really the only option. Dwelling on it made us both angry, frustrated, and upset, which doesn't help with the healing. :(

8 months later my pap was back to normal and have been ever since. I never had any visible warts. Needless to say, it's been 2 years and I'm still confused.
---I think the research shows that if you've been good for 2 years, you should be fine. That means your body successfully fought it off. Yay, you! :)


I stopped dating and stopped having sex. I'm having real issues with moving past the experience.
---Honestly, without a counselor, I would be a mess. I was crazy suicidal for awhile there, and just could not stop thinking about it. I didn't feel human, or female, and I just wanted to pretend I was a eunuch and retire to a nunnery in France. I still have times when I get super frustrated and cry, but I don't dwell on it like I did for awhile. It's been hard to come to grips with the fact that I didn't do anything to deserve this; it just dropped in my lap. It's not permanent, it doesn't change who I am as a person unless I allow it to. I am not my disease. Sure, the symptoms suck, and the treatment *really* sucks, but it's all temporary. I will heal, as I've done in the past, and life goes on. These are the things I keep telling myself. :)

Anyway, I hope your treatments help you eradicate the gw once and for all.
---SO DO I!!!! :D


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