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National Cervical Cancer Coalition


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PostPosted: Tue Jan 19, 2010 10:04 pm 

Joined: Sat Jan 09, 2010 1:00 pm
Posts: 3
Location: Jacksonville
So, I'll start by saying that I've got a lot of questions, and in some ways am just looking for some support. I wish there were an HPV support group I could attend, but I've been reading some of the posts here and people seem to be really supportive so I thought I would give this a try.

I'm 27 and I was diagnosed 3 months ago with mild cervical dysplasia and GW. Luckily the dysplasia was mild, and I'll be going for my first follow up pap in less than two weeks. It was recommended that I have 4 paps this year, and 2-3 next year and by then it should probably be cleared up, at least the high-risk strain. My doc recommended coming in weekly for treatments of trichloroacetic acid to remove the GWs, but my insurance is not so great, and every visit costs me $50. She estimated that it may take two months of treatment, which is around $400 and is cost-prohibitive to me, at least at the moment. Instead, she gave me a prescription for Aldara, but told me that it can have some terrible side effects if not used correctly. I read online that it can be effective, but that it also causes terrible open sores for many people that use it, and the Rx was $300 even after my insurance was applied. After reading about the terrible side effects, and the fact that I would be trying to apply this stuff to places I can't see, and how expensive it is, I decided to hold off on it. I haven't done anything to treat the GWs at this point, and am now thinking I may be better off going to the doctor weekly to get them treated with TCA. At least the doctors can see what they're doing down there. :|

Some of my questions are about treatment. Has anyone had their GWs treated with TCA? If so, what was the result? Did they come back immediately? Has anyone tried TCA and Aldara? Which would you recommend? Are the Aldara horror stories accurate, or is it worth a try? The thing that seemed appealing to me about Aldara was that it stimulates your immune system to fight off future breakouts, and obviously I want them to go away and stay away! I'm worried I'll spend hundreds of dollars on the TCA treatments, and then just have them come back and have to go through it all over again.

My second set of questions is about relationships/sex with GW. My doctor was very nonchalant about my diagnosis, and even with the presence of a few GWs seemed to think it wasn't necessary to tell my partner anything other than I'd had an irregular pap and was having it tracked. I don't agree with her, and don't think I could ever sleep with someone with a clear conscience knowing that I had something transmittable and didn't say anything about it. I know this is very common, and not that big of a deal in the scheme of things, but it is very difficult to talk about and I'm just curious how people handle it. How early on do you tell someone? Telling them right away (first few dates) seems very, very awkward. Telling them once you've developed feelings for one another and want to be in a relationship seems mean, like you've led someone on and wasted their time if it's not something they'll be able to accept. I'm dating someone now, and I just told him a few nights ago and I can tell he's very confused by the whole thing. He wants to be intimate with me, but he's really scared he's going to get HPV and I don't blame him. It makes me self-conscious because I know he's scared to touch me, and it just compounds how uncomfortable I feel in general. :(

How effective is condoms in preventing transmission? I've read it can be up to 70%, but does that apply to strains that cause GW as well? If GW is a skin condition, it doesn't seem like condoms would do much to keep it from spreading. Is it worse to have sex when the GWs are present? Should I wait until they've been removed and I'm healed? Or is it just as transmittable then? I know I have a lot of questions, I'm just really confused, and like I said, the doc just acted like it was no big deal and I shouldn't worry about it - but it just doesn't seem like it's as low-key as she makes it seem.

Final question - and this is just to ease my heartache and worry about the future. Has anyone had good experiences with telling non-infected partners and having them accept you anyway? I know I'm early on in this experience, and will probably be rejected a million more times, but I'm still young and I want to marry and have children and I'm starting to worry that no one that doesn't already have this will be willing to take the risk and be with me. Needless to say, I'm sort of worried that I'm essentially a leper at this point and it's kind of hard to accept. Would I be better off joining an STD dating site and finding someone that will accept me for me, because they know what it's like?

Thanks so much for anything you can offer that you think might help. I've been talking to a few people in my life, and they help as much as they can, but they don't have it so they really don't know what to say and definitely can't answer some of the questions I have.


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PostPosted: Tue Feb 02, 2010 8:19 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Quote:
Some of my questions are about treatment. Has anyone had their GWs treated with TCA? If so, what was the result? Did they come back immediately? Has anyone tried TCA and Aldara? Which would you recommend? Are the Aldara horror stories accurate, or is it worth a try? The thing that seemed appealing to me about Aldara was that it stimulates your immune system to fight off future breakouts, and obviously I want them to go away and stay away! I'm worried I'll spend hundreds of dollars on the TCA treatments, and then just have them come back and have to go through it all over again.


Aldara can cause painful skin irritation in some cases, but usually the irritation is milder. Unfortunately there's no way to predict what your experience might be. When Aldara does cause discomfort, patients are usually advised to stop using the cream until the irritation subsides. One advantage of Aldara - besides what you mentioned about reduced recurrences - is that even when it doesn't totally remove warts, it can shrink them so that removal by another method is easier. TCA is still probably the most common means of treating genital warts.

Quote:
How early on do you tell someone? Telling them right away (first few dates) seems very, very awkward. Telling them once you've developed feelings for one another and want to be in a relationship seems mean, like you've led someone on and wasted their time if it's not something they'll be able to accept.


I agree there's probably no need to discuss HPV right away, maybe waiting until things are obviously going well and likely to soon move towards sex. In any conversation about HPV, stress that the virus is one that virtually all sexually active people have at some point, but it's usually harmless and most people's immune system clear it without their ever having a clue.

Some experts debate the need to tell partners you may be with way down the road, say a year or two after the last episode of warts. For more on this go to viewtopic.php?t=394

Quote:
Final question - and this is just to ease my heartache and worry about the future. Has anyone had good experiences with telling non-infected partners and having them accept you anyway?


viewtopic.php?f=4&t=4804 goes to a discussion we had about a study that found partners are more accepting of hearing about a genital warts diagnosis than people often think.

I hope this helps.

Best,
Fredo

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PostPosted: Wed Feb 03, 2010 7:49 pm 

Joined: Sat Jan 09, 2010 1:00 pm
Posts: 3
Location: Jacksonville
Thanks for your response, Fredo. I know that was a really long, involved post, and I appreciate you going through it and answering some of my questions. HPV is so confusing because there seems to be so much conflicting information out there, and it ranges from "it's no big deal, don't worry about it" to potential for cancer, and growths in your throat, and so many other scary possibilities. The craziest thing to me about it is that it seems like the stigma, and potential possibilities of the virus are worse than the day to day of living with it. Yes, I have a few gws, but they're small and I doubt anyone would notice them if I didn't tell them - and it seems like the risk for actually developing cancer is pretty small (I have low and high risk strains). Overall, I would say I'm healthy, I just have an additional thing to take into consideration in the future.

I'm going for my first follow-up pap on the 15th, and I'm going to talk to my doctor more about aldara vs. tca. I'm leaning towards tca because the gws are pretty small, and I'm worried about getting the aldara on the surrounding tissue and causing irritation to healthy tissue.

As far as the dating stuff goes, well, I would say it's probably not helpful to read people's comments on some dating websites about it, because they're pretty judgmental and mean about it. I think that the right person will love me (and all of us out there looking) for who I am, and not worry so much about a diagnosis. I keep thinking about this postcard someone sent to Postsecret (Postsecret.blogspot.com) that said "I love you and I'm positive I want to be with you even if the results are positive. Please get tested." It's really comforting to me. One thing that might be a blessing in disguise about this whole situation is that you really can tell if someone truly cares about you, or if they just want to be with you for the wrong reasons based on their reaction.

OK, enough. Another long post! Sorry... I just don't have a lot of people to talk to about this that understand.

Thanks again Fredo!


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PostPosted: Thu Feb 11, 2010 3:39 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Keep in touch!

Fredo

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