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   Help--7 years of normal paps, suddenly CIN 1/HR HPV (Cancer: Cervical & Ovarian board)

16th November 2007
I can relate to the diry & ashamed feelings. To an extent the "ick" factor is still there, even now, but I manage to deal with it a little better as more time goes on. There is some comfort in knowing I am far from being alone in this.

Thanks, so am I, he is my world. We met at work, and I just secretly adored him for the first couple months. Then we were in a position where we got the opportunity to actually talk to eachother. We sat together at a company going away party for a fellow employee, and our first official date was on December 31st 2005. We got married on December 31st 2006. Sounds fast to a lot of people, but it was absolutely the smartest thing I have ever done in my life. Never been so happy, he is amazing, I am truly blessed. Before this I had never even lived with a man, and I had been in a long term relationship in the past. Not the type to make sudden leaps, but in this case it just felt right. Best thing about it, I adore his family, and my family adores him. Never thought that was possible after watching my brother & his wife & the whole inlaw saga.

I always thought most people acquire type 1 at some point in their lives. My husband has type 2. He acquired it years prior to knowing me. As for the odds, what can I say, like everything else in my life the odds seem to be against me. I do have it now. He successfully managed not to pass it on to former girlfriends, but I guess I was the lucky one. He only gets outbreaks every six months or so. Months into dating him I got my first outbreak. He takes Acyclovir twice a day only when he gets a breakout. I seemed to be suffering more regularly, which I hear is normal the first year, then it slows down. I was getting them every month or so it seemed at first. I was doing the same as him initially, took two on the onset of one, but my doctor advised that I go on it daily. So I now take Acyclovir once daily which has been successful for the most part. If I were single still & acquired it I would probably be a complete basket case by now. I am basically a walking STD. I would probably swear off sex for good. However, getting it from the man I am married to, though still unpleasant, is much easier to deal with. I did some research on the effects of Acyclovir on HPV. One study seems to hint towards benefits, but nothing concrete that I have seen yet. It would be nice if it helped to suppress both. Wishful thinking though I am sure. I will try to find that site, thanks for the tip!

Yes, there are over 100 strains of HPV, most harmless. For most people its a virus that they acquire & their immune system suppresses it without any knowledge of its presence. The only time it becomes apparent is in cases of certain strains. The strains that cause genital warts can be emotionally devastating for people, and even a fewer amount of strains cause cervical dysplasia. Its so tricky to predict who will & who won't be ultimately effected by the high risk strains because of the nature of the virus. Which is why I personally feel no woman should ever go more than a year without having a pap regardless of her past history. I went from normal my entire life to CIN III. I am still EXTREMELY skeptically of the basic pap smear. They are not 100% accurate. I think it is more likely I got a false negative pap the one prior to my bad one in 2005, than it progressed that rapidly. Not worth wasting too much time on however, since noone will ever be able to tell me for sure. What I don't understand though is why a woman who has tested positive for high risk HPV, and been diagnosed with CIN in the past would not have a colposcopy done in oppose to the basic pap post any treatment or surgery. I sometimes feel like I am wasting my time with the paps, and I would rest more easily knowing they were taking a closer look at things with a scope in oppose to swiping random cells thinking if abnormal cells are present, eventually we will catch it. I am sure its all money driven which is just a horrible thought. Again, hopefully the fact they are offering a vaccine for both men & women for the high risk strains will prevent the little ones of our future from having to go through this.

My understanding on Gardasil is it will only be effective on the strains you have never been exposed to. So, if you have a strain lying dormant, I believe the vaccine will still be rendered ineffective. However, I have wondered if it may help work towards suppressing a strain you may already have, but again it is likely just more wishful thinking on my part. From a science standpoint not sure its possible, but it would be really nice if it worked that way! Don't think it will do any harm though as far as overburdening ones system. My doctor knows my HPV status, and she recommended even though I am married to put up the bucks to get it done in order to protect myself from the high risk strain(s) I have not acquired. Again though, not seeing the need for me to do that at this juncture. When the FDA approves it for women in my age bracket, then I will likely get it done.

Thanks. I have my follow up ultrasound on Tuesday. Hopefully it will go away on its own, afterall, it was an unwelcomed guest.

Enough about me, where are you at with your situation. I see you have CIN I with high risk HPV. Was this result based on the pap, or have you already gotten the colposcopy & biopsy?? Are you still going in for a second opinion??
23rd November 2007
Hope everyone had a nice Thanksgiving!!

Hi Briea, LEEP can cause scar tissue, making it difficult to see the transformation zone. I was informed this happens on occassion, but isn't necessarily the norm. I was told by a member on here I fall into a small group of people this happens to. Medically, it was a very quick & simple procedure to get around it in order to obtain cells for my pap.

For high risk probes done after an abnormal pap, or by request, they are checking for strains, 16,18,33,35,39,45,51,52,56,58,59,& 68. In my records the doctors have noted types 16 & 18 in the past. I was under the false impression they knew I had these types specifically. Turns out this was just a notation because they are so highly linked to cervical cancer. When I found this out I asked if I could be typed specifically. My doctor said yes its possible to do it, they just do not because it would not change the protocol any. Though it would be nice to know, I would much rather them error on the side of caution. I like the fact the protocol is the same straight across the board for high risk HPV. It is possible down the line as more research is performed that other strains of high risk HPV may be linked directly to cervical cancer. I remember around the time I had my LEEP they had not linked HPV to 100% percent of cervical cancers yet. They said it was responisble for some. In a couple short years time, research has made a huge leap. (Pun not intended) Who knows what they will be saying another couple years from now. Even though HPV has been around for quite some time, the knowledge of its significance is still relatively new.

Anytime. It was different grades of lesions within the same tissue sample.

Thanks Briea, when I say its a part of our life now, I mean it in terms of we must be diligent from this point on. My doctor believes once you get HPV, you will have it for life. Kinda like herpes. I believe this too. Which means we must be on top of our annual exams, and follow appointments. Since my margins were not clear, and I have a coexsisting HSV infection, my chances of reoccurance have been increased a bit. My latest pap was performed on the 15th. They obtained cells from the transformation zone/ECC. This is where most cell abnormalities start out, so if this one comes back clear, I will feel much more confident that I have this under control. I had an ASCUS back in Feb of '06, the following in May said epithelial cells with reactive/inflamatory changes. The one in Dec came back normal. The one after that came back endocervical transformation component zone not present or scant. The doctor took no further action. My pap in August came back the same, so they had me go back in to repap & that came back the same as well. This is how my doctor came to the conclusion I have scar tissue & dilated on the 15th. Keeping my hopes up I will be getting back good news next week!!!

I have never used suppositories, but isn't it the material in tampons which links it to TSS?? I do have tons of different kinds of supplements in my cupboard since 2005, and I am hoping Acyclovir may be helping to suppress as well since it is an anti-viral medication.

You ladies are awesome, so glad you are on here!! Have a wonderful Thanksgiving weekend!! Wishing everyone clear paps in the future!
24th November 2007
Hiya Cyn

Your info is so helpful. So, to be clear, your doctors noted 16/18 in your chart but said they don't know if you actually have either or both of those, just that they are responsible for the overwhelming majority of cancers so they are playing it safe? That is a good policy. I see what you mean, I often think it may cause me more mental harm than good to know which strain(s) I have. It would probably not change my regimen, but it may cause me to undergo leep sooner. (instead of waiting till March to recolpo)

Was the dilation for a colpo or a repap? Was it an easy procedure and was the doc able to see/get everything?

I hope the Acyclovir will help you as well--I sure wish anti-virals were broad-spectrum and attacked HPV as a byproduct!

I keep hoping for a therapeutic vaccine (cure), I don't know how, since HPV has been around since the dawn of man and still nothing you can do to combat it directly once you have it.

Has anyone heard of or tried Aldara (imiquimod)? I know it's for warts, but I think you can get it compounded as a suppository too, I'll ask about that if I get bad news in March. I believe it is a local immune-booster and that is how it gets rid of most ppl's warts.
30th November 2007
I recommend it just based on my experiences. I had the HPV test in Jan of 2006 through Kaiser since it was the last month I was going to be covered by them. In Feb of 2006 I went to Planned Parenthood for my repap. I got a call back saying, "Your pap was slightly abnormal, we are going to do it again in three months". I was floored at first in 2007 when I got all my records together & read them for the first time. The pap in Feb was ASCUS, but the HPV they did came back negative. So one month I tested positive, and the next negative?? I asked two different doctors about this recently, and they both agreed that it is more likely to get a false negative than a false positive. Had they said it was ASCUS, but the HPV came back negative, I would have told them Kaiser told me I tested positive just last month. Which would have prompted more questions, more of a discussion, and perhaps I would have gotten a colpo. The protocol is do colpo on ASCUS if the HPV test is positive. If nothing else, it would have put my mind more at ease, I have more confidence in the colposcopy than the pap. However, I put the pieces together over a year later, and by then my new doctor decided to start clean slate as in do a pap, and go from there. So here I am. Thankfully my latest was normal YEY!!!! I can go back to a year screening now. Am I 100% confident about this? No, I do have my doubts. I went yearly for paps, always normal. So it either went from normal one year to CIN III the next, or the pap missed the abnormal cells. I have a tendancy to think things into the ground, which isn't always the best thing. Paps have a high false negative rate, but they are making some improvements. Plus the odds are they will catch abnormalities eventually if you go in regularly.

I have learned from this mistake though. The doctors sometimes omit things they do not feel is pertinent for you to know. Another example, I had a CT scan done over the summer which noted "mild fatty infiltration of the liver". When the urologist gave me the results from the scan, he did not mention this. I saw it when I got the report & read it for myself. I questioned my primary about this, and he said given my age & the fact I am at my ideal weight its nothing to worry about. Its very common. Doesn't change the fact that THEY SHOULD TELL YOU EVERYTHING ABOUT YOUR BODY!!! At least now I know its wise to make sure liver function tests are included in my annual blood work, and to make sure I am diligent about getting tested yearly. I didn't mean to go on a tangent. I'm always telling people to get copies of everything just because I have had a handfull of negative experiences. Doesn't mean its the norm, and hopefully others will be in the hands of COMPETENT people....its better to error on the side of caution though I always say. Also it is important to be proactive in ones healthcare I have also learned.

In lieu of a biopsy. Like they do the pap, then apply the solution & take a quick peek with the colposcope at the same time just to be extra diligent. They could take a biopsy if necessary. It would be nice, but because of costs, its likely just wishful thinking. Some doctors will perform colposcopies at request I am hearing, but I have not been so lucky as to find one of these doctors.

I think vitamins, eating healthy, & exercise are all important. I was the portrait of health...always ate healthy & worked out regularly, and I still got slammed big time by the virus. I will admit I was better about my health before my bad pap than I was after my LEEP. Kinda went into a slump you could say there for a little while. I think the treatment of LEEP gave my body the break it needed to help get on top of it. I give more credit to the Acyclovir than anything for my latest good news. It was in 2006 that I started taking it. Could just be coincidental of course, but there is something there that perhaps warrants more research!

So how are things going with you? Are you still waiting for biopsy results to come in? The waiting stinks more than anything probably. Wishing you the best!! :angel:
30th November 2007
Hi. I am new to this forum and am now in this predicament. My problems started showing up back in January. I've been having annual pap smears since probably at least 30 years of age, if not earlier. Always normal. I am almost 48 years old and had my first abnormal pap back in January, negative on HPV, had another pap in June, still showing ASCUS, negative for HPV, had another pap smear two weeks ago, came back yet again showing ASCUS, this time positive for HPV. I also have uterine fibroids. Have been married before. And did things I am ashamed of many years ago, when younger. I cannot change things I have done in the past of course. I remarried back in 1993. Been with him 17 years now. I have to have a colposcope this Monday afternoon to look for more cells. The ones present now have not changed any. I understand from what I've read here that the doctor doesn't know the strain you tested positive for. Is this correct? But they test you for the certain strains that were mentioned here. I am wondering about this Acyclovir. What is this given for? Thanks.
1st December 2007
Cyn, I am so glad to hear you can return to annual paps! :cool: Hurrah for you girl! Though I understand: once we have had problems with paps we will forever be "paranoid" but hopefully in a good, "preventive" way. I really didn't need another wakeup call, I have other health problems and had a couple major surgeries a few years ago, but I too always thought of my lifestyle as top-notch in every day...yet, I have hrHPV hanging around causing dysplasia.

"Fortunately" my biopsy finally came back, CIN1. He took 2 biopsies so I don't know what the other one said, not sure why the nurse didn't tell me the other one over the phone but she put the report in the mail for me. Thanks again Cyn for ALL of your advice. I'm sure it will help a lot of ladies, not just me.

lhinton, Cyn takes Acyclovir (sp) for herpes, but just wait for her to answer those questions for you as I can't comment. I do have a question for you, you've been with the same man 17 years, but you still showed positive for HPV after 2 consecutive negative tests? I am sorry. That really sucks, HPV can be so evasive and mysterious, it can just crop up "out of nowhere." I think this is why my gyn-onco does not test for HPV when he sees an ASCUS or dysplastic pap (assuming the pap was read correctly). False negative HPV tests are far more common and he says, unequivocally, that 100% (not 99.99% but 100%) of dysplasia and cervical cancer is caused by HPV.

Hey, we have all done things we regret, I know I did and that's why I'm in this situation now...but, as the ladies here taught me proper screening and taking care of yourself means you can beat this. I encourage you to look through old posts to see how you can better your lifestyle to beat this! Good luck.
3rd December 2007
Thanks Brie!! :) " once we have had problems with paps we will forever be "paranoid" but hopefully in a good, "preventive" way. " You so hit the nail on the head with that one! Its SO TRUE. Here here on the new found paranoia, that hopefully only ends with us being more diligent about our health screening in the future!! I am sorry to hear of your other ailments, I know how draining it all can be. I can't help but notice these things tend to come in clusters too....

I'm glad you finally got your results back! Are you opting to hold off on treatment til a repap is performed in March? I am glad, anytime, we are all in this thing together! :)

Hi Hinton, welcome to the board! There is a high false negative rate for paps as well as for HPV tests. General rule of thumb if a pap comes back ASCUS they run a HPV test. If that is negative they repap in 3-6 months. If its possitive for HPV they do a colpo right away typically. If you get an ASCUS test twice in the same year, regardless of a negative HPV test they do a colpo. You can be positive for HPV, and still test negative if it falls just under the radar. Glad to hear they are doing a colposcopy on you finally, hopefully that will bring you good news & piece of mind! Please let us know what you find out!

I do not know the exact strains I have tested positive for, this is correct, just that I tested positive for the high risk HPV strains listed. I have herpes (HSV) in addition to HPV. It is believed that HSV works as an accomplice to HPV, increasing ones risk factor significantly. Acyclovir is an anti-viral medication. It works by helping to suppress the HSV virus. I have found this to be very succesful in keeping breakouts at bay by taking it daily. There is research that suggests Acyclovir may also be benefitial in helping people with an HPV coinfection. It could be as simple as it cancels out the increased risk factor for those with coinfection. The effects of the medication directly on the HPV virus is still undergoing research...
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