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Old 11-08-2007, 08:13 AM   #1
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Help--7 years of normal paps, suddenly CIN 1/HR HPV

Girls, I'm new and could use some advice. SORRY this is so long...

I just received a diagnosis of CIN 1/mild dysplasia with high risk strain(s) of HPV after 7 normal paps in a row. I'm 27 and had been getting yearly paps since 19 (age of first sexual intercourse). My last pap in 9/2006 was normal, so I contracted the HPV last year to year and a half, depending on the incubation period. I had NO idea I had HR HPV (I was there for BV), but in retrospect, something's been off for months, a year even. I've had recurrent BV, something I've NEVER had before, and co-infections are common with STDs. I'm positive I got it from one of two partners I've had in the last 2 years (the 4 others were either virgins, or 1-2 times protected, pre-2004, so way too much time has elapsed for my infection to be from any of them). Ironically, both recent partners were tested for every STD a man can be tested for, including herpes 1 and 2, and negative for all of them, but I STILL got HR HPV. I can't even describe how dirty and ashamed I feel, and what utter hypocrisy, since I'M the one who made them both get tested, with clean results, and yet I'M the one with an STD!

I'm scared because in the less than 1 year I've had this, my HR HPV has caused mild dysplasia. I don't know why my body is not clearing it and not even strong enough to at least fight off cellular changes. I'm guessing it must be HPV16 because that's hardest to clear. I think one year --> CIN 1 means it's progressing pretty fast? My ob was very flippant with me when I went in to ask questions--he didn't think my worry was warranted in the slightest--needless to say he didn't want to biopsy me either. So I'm geting a second opinion. I've been researching LEEP v. cryo, and undecided. While I understand I do not have cancer right now, I simply can't bear the "wait and see approach," I want something done about this NOW. I don't know if my body can clear this because I still have resistant BV making it difficult if not impossible for my immune system alone to clear both.

However, I have no kids, and I definitely want at least one in the future, and I know LEEP and cryo (and the other methods) can affect that. It sucks so bad, because I have no problems with fertility and could get pregnant whenever I wanted, I just don't have anyone to do it WITH; and the prospect of surgery causing fertility problems is sitting on me like a dead weight. Since I have no boyfriend or prospects on the horizon, it may be some time before kids is a real possibility. In the meantime, I can't be going back to the gyn every 6 mo. for a repeat pap...I can't play the waiting game.

So my question is, what would you recommend?

1) My current gyn's advice, sit and wait for 6 mo. for repeat pap. No biopsy necessary unless the next pap is also abnormal. He didn't even recommend telling my current on/off partner! (This "conservative treatment" is also what my brother, a med student, recommends.)
2) Going to a second gyn and demanding cryo.
3) Going to a second gyn and demanding LEEP.
4) Going to a second gyn and demanding a colposcopy only.
5) Do nothing.
6) ???

Thing is I'm not sure how a second opinion would benefit me because I don't have my records so he has nothing to go on except the path report, and I don't want to anger my current gyn of 4 years (who is ok, if a bit uninformed about HPV) by asking for my records. I'm sure they know what that's all about.

I have no one to talk to about this. I'm so ashamed, I'm not telling close friends for fear of being the subject of gossip (people talk, even if they mean no harm) and my brother is so far away and thinks this is not much to worry about since it's CIN 1. I don't dare tell my mom...she doesn't approve of my premarital sex and would only give me the "you had it coming, you'll get no sympathy from me" spiel. Sex is a HUGE stigma in our house. I have no boyfriend...it's hard to describe the relationship I have with my current on/off partner, just suffice to say that while we aren't together I trust him and know he wouldn't engage in activity that puts my health at risk.

I have many other health problems, facing surgery again in the future, and this is the last thing I need. I almost wish I never went in for my pap. More than anything I am so disappointed in myself...I thought I had been so careful, but I could have been MORE careful, like using condoms all the time even after tests came back clean...or even not have sex anymore. And after this horrible news, I'm considering abstaining from sex forever.

Thanks for any advice.

Last edited by BE 123; 11-08-2007 at 08:24 AM.

 
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Old 11-12-2007, 04:11 PM   #2
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

First of all, you need to calm down and recognize that as a sexually active adult, you have an 80% lifetime risk of contracting one or more types of genital HPV. It's extremely common. Second, if you haven't had a colposcopy with biopsy, then your doctor is only speculating that you have CIN 1. CIN 1 is a histological diagnosis that can only come from a tissue biopsy. If your pap showed LGSIL, you may or may not be CIN 1. Third, the most current information available indicates that you have a 60-70% (or greater) chance of auto-regression. CIN 1 rarely progresses to cin II/III. It can, but this is usually not the case. The most recent treatment protocol for CIN 1 is 6-12 month repeat pap or HPV test. If it doesn't clear by 24 months, than treatment should be considered. As far as telling your partner--that's up to you, but you have both exposed each other to the virus' that you each have and he may not ever know, then again, he may develop lesions. Some HPV types produce only cervical dysplasia in women, other strains (like type 16) can cause both dysplasia and warts. If he is any kind of a man, he will respect you for being honest. BTW, even diligent use of condoms will not protect from HPV. I would suggest that you request a colposcope--this way you can rule out anything more serious. Pap smears are notoriously poor indicators of lesion grade. Your pap results (as I understand your explanation) indicate that you have a low-grade lesion(s). The colposcope will allow a pathologist to determine the depth in the cervical skin the lesion(s) actually affect. This will determine truly whether or not you have a low-grade lesion or a high-grade lesion which you should be more aggresssive in treating. In any case, try not to panic over this. Eating healthy, excercise and reduce stress--this helps your immune system do its job to clear this.

Last edited by piperpilot; 11-12-2007 at 04:15 PM.

 
Old 11-14-2007, 08:59 PM   #3
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

Hi and thanks for your reply. I did tell my partners, both of the ones I could've gotten it from (and of course, each of them pointed a finger at the other); even though my type does not affect men, I'd feel like a liar if I withheld info (in case they pursued other sexual relationships. I could not manage being the cause of another woman's infection).

I've had this for 12 months. I know hrHPV typically clears within 6-12 months and if it doesn't, the clearance rate from that point on is drastically reduced. Well, I have not cleared it. I have however just begun a nutrition/supplement plan for the following 3 months so perhaps there will be regression of my cervical dysplasia, if not clearance of the HPV.

Now, I know CIN1 regression is slightly more often the case than not, but the hr types are tricky. Type 16, the most common hr strain, seems to have a higher progression and/or stagnation rate than regression rate--not comforting. So, I am getting typed, but if the results come out 16 or 18 then I may be more worried for something I can not do much about now.

I am confused as whether someone can carry HPV (whether high, low, or no risk) indefinitely, or whether clearance really means it's GONE. Is there CONSENSUS on this? My brother, a med student says the latest literature supports the dormancy theory--that it could resurface at a later time. I suppose this would explain why some women have a few years of success after leep or cryo, then back to dysplasia again, all the while not having changed partners or cheated?

And, as if cervical dysplasia wasn't enough to worry about, I also (stupidly) engaged in oral sex and have the oral and other "girl parts" dysplasias to worry about.

My gyn did not want to colpo me even though it is indicated/standard protocol (I'm 27, hrHPV and CIN1 from pap; the only time you wait and see with a hr strain is if the girl is an adolescent) so I am seeking another gyn's care.

Quote:
Originally Posted by piperpilot View Post
First of all, you need to calm down and recognize that as a sexually active adult, you have an 80% lifetime risk of contracting one or more types of genital HPV. It's extremely common. Second, if you haven't had a colposcopy with biopsy, then your doctor is only speculating that you have CIN 1. CIN 1 is a histological diagnosis that can only come from a tissue biopsy. If your pap showed LGSIL, you may or may not be CIN 1. Third, the most current information available indicates that you have a 60-70% (or greater) chance of auto-regression. CIN 1 rarely progresses to cin II/III. It can, but this is usually not the case. The most recent treatment protocol for CIN 1 is 6-12 month repeat pap or HPV test. If it doesn't clear by 24 months, than treatment should be considered. As far as telling your partner--that's up to you, but you have both exposed each other to the virus' that you each have and he may not ever know, then again, he may develop lesions. Some HPV types produce only cervical dysplasia in women, other strains (like type 16) can cause both dysplasia and warts. If he is any kind of a man, he will respect you for being honest. BTW, even diligent use of condoms will not protect from HPV. I would suggest that you request a colposcope--this way you can rule out anything more serious. Pap smears are notoriously poor indicators of lesion grade. Your pap results (as I understand your explanation) indicate that you have a low-grade lesion(s). The colposcope will allow a pathologist to determine the depth in the cervical skin the lesion(s) actually affect. This will determine truly whether or not you have a low-grade lesion or a high-grade lesion which you should be more aggresssive in treating. In any case, try not to panic over this. Eating healthy, excercise and reduce stress--this helps your immune system do its job to clear this.

 
Old 11-15-2007, 07:43 AM   #4
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

Quote:
Originally Posted by brieaukirsch View Post
I am confused as whether someone can carry HPV (whether high, low, or no risk) indefinitely, or whether clearance really means it's GONE. Is there CONSENSUS on this? My brother, a med student says the latest literature supports the dormancy theory--that it could resurface at a later time. I suppose this would explain why some women have a few years of success after leep or cryo, then back to dysplasia again, all the while not having changed partners or cheated?

And, as if cervical dysplasia wasn't enough to worry about, I also (stupidly) engaged in oral sex and have the oral and other "girl parts" dysplasias to worry about.

My gyn did not want to colpo me even though it is indicated/standard protocol (I'm 27, hrHPV and CIN1 from pap; the only time you wait and see with a hr strain is if the girl is an adolescent) so I am seeking another gyn's care.

Most places where I have read about HPV say most of the time the body rids itself of the virus in a couple years. I am positive for high risk HPV, and was told by a doctor I will have it for the rest of my life. There are times I may test negative, which means it has simply fallen under the radar for the time being. Personally, I believe more in the dormant theory, which means extra diligency when it comes to the immune system.

As for dysplasia in other areas, I too have worried about that, but have yet to pursue it.

Good call on getting a new doctor. One thing I have learned through all of this is to be proactive in your own care.

Best wishes to you! Hugs!

 
Old 11-15-2007, 11:39 AM   #5
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

Quote:
Originally Posted by CynwithCIN View Post
Most places where I have read about HPV say most of the time the body rids itself of the virus in a couple years. I am positive for high risk HPV, and was told by a doctor I will have it for the rest of my life. There are times I may test negative, which means it has simply fallen under the radar for the time being. Personally, I believe more in the dormant theory, which means extra diligency when it comes to the immune system.

As for dysplasia in other areas, I too have worried about that, but have yet to pursue it.

Good call on getting a new doctor. One thing I have learned through all of this is to be proactive in your own care.

Best wishes to you! Hugs!
Hi, thanks for your input. Did you have a LEEP and did everything turn out ok? Did you ever get typed for which strain(s) you have? Did you ever test negative for HPV again after your procedure?

The dormancy theory makes the most sense based on anecdotal evidence, if we are to take everyone's word that there was no infidelity involved on either party (which you can never truly know about another human being).

This has made me so cynical. If I was justifiably paranoid about STDs before, as friends always accused me of being, I'm now paranoid on a whole new level. How ironic that the most careful, paranoid person ended up among the unfortunate 10-20% with hrHPV that actually show cervical changes!

Do you know if the immune system "down there" is the same as the immune system overall? I wonder because due to other chronic health problems, I take great care of myself and already do all the right things, so it's not as if I could quit smoking or start eating better or exercising more; I already did everything "by the book!" It just makes me think there's no way for me to kick this, esp. since I've had this a year without knowing and didn't start the vitamins in time...oh well, I still hope they help.

Thanks.

 
Old 11-15-2007, 03:38 PM   #6
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

I had LEEP in May of 2005 through Planned Parenthood. The procedure itself went smoothly. I do have scar tissue however, so today at my pap my doctor had to dilate my cervix in order to get an adequate sample. That procedure was very quick & simple, and felt like a normal pap. Hopefully those results come back clear, if so, I won't need another pap for a year which will be nice. ( I have been going in every few months since 2005 ) Initially I was never tested for HPV. I was diagnosed with CIN III, so they just automatically assumed I had it. In January of 2006 I decided to have an HPV test through Kaiser since my insurance with them was to expire at the end of that month. Those results came back positive for high risk HPV. They told me back then I had types 16 & 18, but I later found out through my current doctor what they likely meant was I have one of those two types. Now the following month I went to Planned Parenthood for my follow up pap. Those results came back ASCUS, but when they ran the HPV test it came back negative. This was February of 2006. So, it went from positive one month, to negative the next. In May of 2006 my pap came back with negative with epithelial cells with reactive/inflamatory changes. No HPV test was run. The one in Dec of 2006 came back normal, along with the ones done in 2007. My best guess is my immune system kicked in, helping to keep the virus at bay.

I feel ya. I always thought I was being soo carefully about STD's. I was a virgin til I was 20. I got tested routinely for STD's once I became sexually active. When I would go in for my annual pap I would request to be tested for everything. What I did not know is they were not testing me for HPV. In fact, up until I was told I had it, I had never even heard of it.

I am pretty sure the immune system is the same in that region. I ate unbelievably healthy, and worked out regularly & still managed to get slammed by the virus. I imagine some people are going to be naturally more susceptible than others. Vitamins can't hurt, so the way I see it do everything possible, and hopefully it will help work towards fighting it off. Regardless, the best line of defense will be regular paps for the rest of our lives.

Sorry to hear you are in this boat. I know its hard, but atleast you caught it in time, so now its just a matter of staying on top of it....

 
Old 11-15-2007, 04:33 PM   #7
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

Thanks Cyn!

How old are you and what is your childbearing status, if you don't mind my asking? I'm only 27 and haven't had kids, but really want them in the near future. Did your doctor say anything about your residual scar tissue and whether it will impact pregnancies/deliveries in the future?

It's interesting and great that your HPV status changed within a month. I reckon your LEEP paved the way for your immune system to overcome the virus. That's my hope anyway! Continued good luck on the series normal paps and HPV- results.

Have you or will you get Gardasil? I'm torn on that...

It seems one can never be too careful. My friends always raised their eyebrows at my sexual caution calling me all sorts of paranoid/OCD, yet I'm the only one having problems. My brother is a med student and extremely paranoid about all this, especially now after he's seen what is happening to me...Thus marks the commencement of my affair with celibacy. Seriously, sex for me is so not worth all this. I always considered myself so knowledgeable about STDs, my primary concern was herpes, but imo HPV is potentially FAR more devastating (second to HIV), and the "it's common" excuse does not lessen the emotional and physical effects of women who are severely impacted by it.

Last edited by BE 123; 11-15-2007 at 04:38 PM.

 
Old 11-15-2007, 11:07 PM   #8
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

I'm 28....29 in February. I do not have kids of my own, but my husband and I have talked about it. If I can get a green light from the pap I had today, and get this cyst business taken care of, we just may start trying in the near future. As for LEEP & scar tissue impacting pregnancy she has not mentioned it, but its something I will directly address if and when the time comes, because it is a concern of mine. Coincidently you mentioned herpes, and as it turned out my husband had herpes when I met him. So, I now have HSV as well. Another issue I will have to address before getting pregnant, my concern of course being I do not want to pass it on to my child during birth. I am assuming C section would be my best course of action. I can relate to your STD paranoia. I was honestly more careful and more responsible about sex than most people. Its ironic that I now have two STD's. In the beginning the whole HPV thing floored me. I wasn't interested in dating, but then I met my now husband after LEEP. Life is funny like that.

My doctor has discussed Gardasil with me. There are four strains the vaccine protects against. She said most people will have one maybe two. Rarely someone might have three of the four, but extremely rare for someone to have had all four strains, so it can still be benefitial to most. The thing is, the FDA has only approved it for people under 27, or maybe it was 26, anyways, which means my insurance would not cover it. I would have to pay the full price. I believe she said its $150 and its three shots so it would be a $450 tab. If I weren't married I would do it without hesitation regardless of my current HPV status & age, but where I am in my life right now...not seeing much of a benefit for me personally.

I have said it over and over again, when all is said & done, and I make it past all of these hurdles...the emotional damage this has caused will likely out weigh the physical. The thing I find most disappointing is the lack of information doctors seem to provide their patients overall. Equally disappointing is the lack of public awareness on this topic. Sure you actually hear about it now, but its still not to the level it needs to be in order to prevent & lower the numbers of those affected. I have learned from my experiences now, one HAS to be proactive in their own health. I now get copies of EVERYTHING I get done, read everything for myself, and get answers if something doesn't make sense or add up. It seems the answer to most things is watchful waiting, and a lot of it is guess work. Its scary. I had no idea how bad things were in the medical field, until I got a forceful push into it. People need to be the priority, and right now, it seems like our fates rest more in the hands of the almighty buck than in those of a caring medical team.

THANKFULLY, I have recently found a new OBGYN who seems to be very caring & knowledgeable. A breath of fresh air, but unfortunately she is few & far between. I just hope in time the vaccine will help prevent women from having to go through this in the future.

 
Old 11-16-2007, 07:08 AM   #9
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

Hi Cyn, I'm so glad to hear you met someone in that short time between your LEEP and now. It has only been a year and a half, right? Women like you and Timber give me some hope, even though dating is the last thing on my mind right now, I feel so dirty and ashamed.

Ok, regarding HSV, does your husband have 1 or 2? I did a LOT, A LOT, of research on HSV as it was (stupidly) my primary concern (when HPV should've been!) and depending on how long he has had HSV you may not even have gotten it from him. Over a year, and the transmission rate drops sharply (I assume you haven't been using protection, which is very effective although not perfect against HSV). Have you looked at Terri Warren RN's site? (I'd link you but I think we are forbidden to do that.) If I remember right, the male-to-female transmission rate of HSV is 10% (that is 10 out of 100 women will get HSV from her partner if they abstain during outbreaks and have regular sex several times a week). Those odds are pretty good. So, don't assume you have it already, esp. since you haven't been with your husband many years. Anyway, you are probably very up to speed on this.

Is it really true that most women with hrHPV do not show cervical changes or if they do they may clear it before they know? Or is that just something they say as consolation? It doesn't work, because I now know there are PLENTY of women suffering through this.

Well, I was wondering about Gardasil and its effect on hrHPV clearance in the long term. Of course we don't know that yet, but, say your hrHPV goes into a state of dormancy then crops up 5 years later. By then the vaccine has fully kicked in, will it help? Or will getting it now, while your body is trying to fight the HPV, do more harm by "overburdening" the immune system? It's so confusing.

Good luck with the cyst resolution!

 
Old 11-16-2007, 09:16 AM   #10
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

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??

Last edited by CynwithCIN; 11-16-2007 at 09:42 AM.

 
Old 11-17-2007, 01:38 AM   #11
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

Hi ladies,

Brie, don't feel dirty or ashamed! I know that's kind of a natural initial response, but I think what helped me mentally "cope" with HPV is knowing that everyone around you probably has it. And that it's really IMPOSSIBLE to avoid unless you never have sex. The stigma of having HPV will pass soon, but try not to dwell on it too much. It does NOT equate you to being a loose, "promiscuous" woman. On the contrary-- most people and friends I know who have it have been in only long-term, monogamous relationships. But I'm neither implying that being sexually "promiscuous" or sexually active with various people means that person deserves ANY type of disease. The whole stigma thing is ludicrous! Anyway-- I'm sure you get what i mean! Just don't try and beat yourself up over it-- it is WAY more common than you think!!!

As far as the HPV vaccine goes, it doesn't hurt to get it if you already have a strain of it. I got the vaccine last year and it may have helped with my dysplasia regression-- who knows? My best friend's mother is a gynecologist and she's told me that recent research has pointed to a correlation between HPV vaccine and dysplasia regression of women who already had HPV before the vaccine.

ALSO, the vaccine will protect you from strains you may not have. And assuming you'll have sex again with different people, you can protect yourself from the strains of HPV they can possibly give you. I definitely think that it's a good idea even if you have HPV anyway and various gynecologists have told me this, too.

Regarding HPV popping up later in life on an abnormal pap-- I think, unfortunately, we will always have to think about this. HPV can be dormant for years and then be active due to stress, lowered immune system etc. It just means you have to be on top of pap smears and keep as healthy as possible. It is a very treatable and manageable problem-- it really only causes mental aggravation more than physical aggravation (in the dysplasia stages, I mean).

Keep your head up and you will make it through! Haha sorry this is like the 3rd post to you today but I've been reading your different questions and responding to them in different posts. I hope I've covered the main ones! Take care and DON'T STRESS! I promise you will be ok

 
Old 11-17-2007, 01:46 PM   #12
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Re: Help--7 years of normal paps, suddenly CIN 1/HR HPV

Thanks very much, the only thing helping me right now is that I know fine educated ladies like you, Cyn, Timber, etc. have also run into bad luck and it shouldn't be reflective of my behavior or poor judgment. I am still trying to get over the shock and shame. I am pretty sure who I got it from, but because of the uncertainty over dormancy, incubation, etc...I don't KNOW-know. It's down to 2, and that's really eating at me.

Cyn, I can only hope something like that happens to me! I am so happy you were able to find a best friend and partner. I know EXACTLY what you mean about how being married takes the stigma/etc. down a few notches...part of my worry is how single I am, and how no one will want me, and all that.

Do you gals suggest getting typed? I think I would go into a permanent state of shock if I came up bearing more than one type (which is so, so likely) so maybe it would do more harm than good. I mean, I do not have warts, and high risk is high risk no matter how you look at it, right? I only want to be typed to see if the vaccine is worth getting, like if I already have 3 of the 4 strains, what's the point...sex is the LAST thing on my mind right now.

Much appreciated gals. Cyn, Timber, I hope your leeps got rid of your HPV FOREVER. And lagirl, thanks for posting your regimen and success. It does make me feel better. I would not have known about the supplements on my own.

Last edited by BE 123; 11-17-2007 at 01:46 PM.

 
Old 11-19-2007, 02:30 PM   #13
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BE 123 HB User
Update on my situation, and questions?

In case anyone is lurking or interested, here is the information my gyn-onco gave me today. I hope it also helps others.

I have seen 2 other doctors about my HRHPV + CIN1 from my October 2007 pap. The first (regular ob-gyn) said repeat pap in 6 months, the second ob-gyn said biopsy in 2 weeks. This guy was more conservative (perhaps because, being a gyn-onco, he has firsthand experience of what can go wrong) and colpo'd me right away, taking 2 biopsies of a single "q-tip-sized" lesion at 1 o'clock. I asked him to remove all of it with biopsy but that didn't happen.

First, how big are most dysplasia lesions? And, are most lesions circles with clear borders, or are they "spread out?" It seems for most women they are "spots" or circles, but on the leep pamphlet he gave me, it's a "pool" of dysplasia all around the T-zone.

I still do not understand if he is right about there only being 1 lesion of small or medium size, why he could not do a more "invasive" biopsy and snip out all the bad cells he could see? (Particularly since today's biopsy was not painful.) Does anyone know?

I am confused as to what actually happened, because the colpo/biopsy was no more uncomfortable than a routine pap. For me, the biopsy pinches are less uncomfortable than the swabbing. He also swabbed the ECC, even though he didn't think there was ECC involvement. He said he only saw one lesion, and he thinks it is mild or no more than moderate (but I have to wait 1 week for the definitive path report) so if he is right, then I guess the pap I got in October was a pretty good swab. However, the solution that makes the lesions turn white was only on for a split-second before he biopsied, so can I trust that it highlighted all bad areas? And I have very minimal bleeding from the colpo, but I am discharging some weird brown ground coffee? (sorry, TMI)

He quotes a 20% error rate for Paps; some women who have dysplasia on paps have negative colpos, and vice versa. He then said if dysplasia is definitely present, then HPV is absolutely the cause of it, 100% of the time. He was adamant about this. (Please note, this probably doesn't apply to ASCUS results as well, only true dysplasias.) I have read of women whose dysplasia occurred before they screened positive for HPV (they eventually seroconverted to positive), so I guess he is correct?

I asked on this board about regression and clearance rates for hrHPV past the 1 year mark, since I could not find any good studies that address this. He said that, clinically-speaking, the chances of natural regression or clearance past 1 year are drastically reduced, and that most regression or clearance happens within 6 months (this is again supported by the (rather scant) literature I've been able to find, I guess this is why they do not follow past 1 year). Again this is my worry because I know exactly how long I've had this (12 months this December) and still it's here.

Unfortunately, he didn't seem to have much faith in surgical procedures, and kept dwelling on the fact there is a recurrence rate for all of them. His attitude towards leep, etc. seemed to imply this happened more often than not (???). I couldn't get much out of him. He also brought up the possibility of difficulty getting pregnant after leep, because it can remove mucus glands making you potentially less fertile. He brought that up without my asking, and seemed to think that was more risky in terms of pregnancy than a preterm labor.

He said if I were his daughter or sister, he'd advise against a procedure right now (whether leep, cryo, cone, or laser) and give it 3-6 months, although if I really want it leeped out right away he will follow my wishes. If, in 6 more months, it is still present, he will definitely treat it, (perhaps because I am pretty sure about my timeline of infection). Even assuming my infection was likely from December, he is still running the clock from my bad pap in October because we don't know how long the actual dysplasia has been present. So, Timber, and anyone else interested, the clock runs from the first bad pap you have, instead of when you think you were infected.

He also believes in the dormancy theory and says that dysplasia does not always arise suddenly after exposure. Part of why this is all so hard to sort out. Basically, having HPV is a marker of sexual activity, and nothing else. (well, bad luck too, but that goes without saying no?)

He thinks the vaccine will neither help nor hurt. He regularly talks about the vaccine at conferences.

He did not believe in suppositories and did not offer anything except eat well and de-stress.

So, I am to go back in early March 2008 for a repeat pap & colpo, and hope that the lesion is gone. (At least 3 months, and hopefully closer to 4 must have passed in order for the cervix to heal, otherwise the healing might be misread as bad cells.)

Thanks for reading this, I hope it helps someone, and let me know if you have any questions. Sending you all good thoughts.

Last edited by BE 123; 11-19-2007 at 04:07 PM.

 
Old 11-19-2007, 06:49 PM   #14
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LAgirl81 HB User
Re: Update on my situation, and questions?

Hi there brie,

Your doctor seems to have given you some pretty sound advice. Mind you, I've spoken to about 6-8 different gynecologists and doctors about their opinions and knowledge on HPV, LEEPs, cryos, etc. NONE of them agreed 100% on any one particular thing, except for maybe that HPV is the main culprit in causing cervical cancer. I posted earlier on my trials and tribulations with different gynos. When I was diagnosed with CIN I-II in May, my primary doctor at my University's student health clinic recommended a LEEP, but she referred me to the univ's hospital and women's health clinic. The gynecologist at the university's women's clinic told me that I needed to get the LEEP and ASAP or it would get worse. Extremely frightened at her words, I toyed with the idea of getting the LEEP over and done with. But part of me knew that there was an alternative out there-- AND I didn't want to mess around "down there" as I want to have babies within the next few years or so.

The next doctor I spoke to was my best friend's mom who has been a gyno for 20+ years. She deals with HPV, dysplasia, LEEPs on a daily basis. I showed her my records and IMMEDIATLEY shook her head and said that I did NOT need a LEEP right away and that I could repeat a biopsy/pap in 3-4 months. I trusted this woman as I grew up with her daughter and knew she wouldn't give me any bad advice. So now I had to totally conflicting treatment recommendations from two different gynecologists. I talked to a few other doctors and received similar conflicting recommendations.

Basically, I decided to wait and watch, as you now, and followed a treatment plan from my naturopathic doctor. After having spent hours reading and researching and talking to many doctors so I could learn all I could on dysplasia and HPV and cancer, I felt more confident in my personal choice. I think the most *important thing* for any woman in this situation is to be PRO-ACTIVE about her health. It sounds to me that you are being pro-active and I definitely encourage that. For me, making my informed choice made me feel more in control of my body and my health and made me more confident that I could beat this thing. And I did!!!

I'm not pushing for one treatment plan over the other. YOU must make that choice but the best thing is to feel 100% confident with your decision. Too many patients are ushered into doing something they know absolutely nothing about. I have 2 girlfriends who were urged to get a cryo for their dysplasia *the same day* when they got their results. This meant they didn't have ANY time to research their diagnosis or the surgery itself. One friend didn't even remember what type of dysplasia she had!!!!

So believe me when I say that what you're doing now is the best thing possible. Mild dysplasia has a VERY VERY good chance of regressing to normal. If my mild-moderate dysplasia regressed to normal in 5 months, then there's a good chance yours will! You must be patient and give your body time to heal. If the naturopathic treatment is not an option for you location-wise, the best way to help your body beat this is to be as healthy as possible. The supplements you listed sounded good to me. Just keep it up and you will be fine! Take care

 
Old 11-19-2007, 06:51 PM   #15
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LAgirl81 HB User
Re: Update on my situation, and questions?

p.s. I wouldn't worry about a LEEP until your doctor says for you to get one. For CIN I, this is not recommended. But it is good to know as much as you can about this procedures. Your doc is right in that it can affect your fertility, but from what I've read the problems aren't too common. So try not to worry about that yet!

 
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