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.

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.

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.

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.

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!

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.

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....

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.

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.

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!

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??

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 :)

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.

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.

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 :)

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! :)

Hi Lagirl, thanks for your messages. I have read many of yours and others' posts and they are so helpful. This has not been the best news but I am learning all I can.

I seem to have run into the opposite type of doctors as you so far, mine have been too conservative in management, I think.

Do you know how large and what shape lesions typically are? I think mine is 6-7mm, (I measured the diameter of a q-tip head, I really hope he means the small q-tips people stick in their ears, and not the HUGE q-tip pap swabs in the gyn's office). This assuming he saw all the bad stuff because again, the entire process only took a few seconds (???). Indeed, according to his description, I'm surprised the pap picked it up at all.

Is it possible, during colpo/biopsy, to "contaminate" other areas previously unaffected by the HPV? Say inadvertent transfer of bad cells from affected area(s) of the TZ to the previously-unaffected ECC, during the ECC curettage?

Have any doctors mentioned what happens to the TZ after cryo? I've read on the obgyn forum that it tends to "disappear way up the ECC," which I am having trouble picturing. So after cryo, you could end up with an inverted cervix? (a mushroom with the canal on bottom and TZ on top, instead of the normal inverted mushroom with the canal on top of the TZ) making it very difficult for the TZ to be visualized if it persists later?

I cannot believe I know so much about something I never thought I'd need to know anything about...:(

Thanks again ladies.

Do you know how large and what shape lesions typically are? I think mine is 6-7mm, (I measured the diameter of a q-tip head, I really hope he means the small q-tips people stick in their ears, and not the HUGE q-tip pap swabs in the gyn's office). This assuming he saw all the bad stuff because again, the entire process only took a few seconds (???). Indeed, according to his description, I'm surprised the pap picked it up at all.

Is it possible, during colpo/biopsy, to "contaminate" other areas previously unaffected by the HPV? Say inadvertent transfer of bad cells from affected area(s) of the TZ to the previously-unaffected ECC, during the ECC curettage?

Have any doctors mentioned what happens to the TZ after cryo? I've read on the obgyn forum that it tends to "disappear way up the ECC," which I am having trouble picturing. So after cryo, you could end up with an inverted cervix? (a mushroom with the canal on bottom and TZ on top, instead of the normal inverted mushroom with the canal on top of the TZ) making it very difficult for the TZ to be visualized if it persists later?


Lesions vary in size with the individual. My first abnormal pap came back (LGSIL) CIN I. They did a biopsy on three spots. First one at 7:00 o'clock measured 0.3 x 0.3 x 0.2cm, second one at 1:00 o'clock measured 0.3 x 0.3 x 0.2cm and the third one ECS 0.6 x 0.6 x 0.1cm. The path report came back chronic cervicitis and squamous metaplasia at 7:00, high grade squamous intraepithelial lesion (CINII-III) at 1:00, and fragments of benign endocervical tissue for the ECS. Then when they did LEEP there were six sections noted on the path, again in various measurements. One area came back as CIN III, three as CIN I, and two as benign. Knowing of the discrepancies I encountered, if faced with the need for treatment in the future I would opt to wait if the biopsy came back as CIN I. (I would not want cryro) and LEEP or cone for any grade higher. I have heard most women give birth successfully after LEEP. Risks are there, but overall I think most women go on without any problems after their first LEEP.

As far as cross contamination, I would like to believe they have a system for sterilizing the tools to avoid all possibilities of this happening.

As for the TZ zone after cryro I have heard the same thing. That is one of the reasons I would not opt for it, another being my past experiences has shown me the importance of having a tissue sample to send to pathology in order to get an accurate diagnosis. I do have scar tissue from my LEEP which had an effect on my transformation zone, however, my doctor was able to dilate my cervix to get around that problem. The good out weighs the bad.

Wishing you good luck on your results, hopefully yours will regress the way LAgirls has!! I am rooting for you guys!

Hi girls!

Brie-- I'm so glad that you are researching and reading all that you possibly can on how HPV and dysplasia works. I don't know about you, but I'm NOT a science-inclined person and I"m in grad school for literature, so my brain is not well trained in grasping scientific terminology-- SO it was a challenge for me to be able to understand some of those medical journals that explained the workings of HPV and dysplasia! But keep on reading and researching-- that is the best thing you can do!

Regarding lesion sizes, I really don't know about that. Like Cin said, every woman is different and will have different types of dysplastic lesions. Sometimes they are little lesions on a corner of the cervix, sometimes they are larger ones all over the surface of the cervix, sometimes there is just one spot that needs to be removed. For LEEPs, CIN II is a more shallow LEEP and CIN III is a more aggressive, deeper LEEP. This makes sense as CIN II is only about half to 2/3 of the lining of the cervix and CIN III is from 2/3 to all the lining of the cervix.

Since CIN I is only a minimal level of the lining (1/3) this usually regresses on its own. You really must relax and give your body time to fight this off-- of course, you can help your body by being healthy, etc., but remember that stress also wreaks havoc on the body! You may think your doctors are being conservative in their treatment recommendation, but I think they are doing what most doctors do with a patient in your situation. My best friend's mom said that she's seen OVERTREATMENT and that is horrible! She said she had a new patient whose old doctor gave her a LEEP for her CIN I!!

I think you're right about the cyro-- I, too, have heard from various doctors about cryo pusing the t-zone up higher (haha sorry i don't know the scientific terminology) making it harder to detect abnormal cells if they are to pop up in the future. Plus, it has a high recurrence rate so that's bad, too. I would never opt for cryo and would do a LEEP over cryo any day. Plus, cryo is only effective for milder dysplasias so it doesn't make sense to do it for more severe dysplasias.

Having said that, I completely know what you're going through. When I found out about my CIN last May, I buckled under the stress (plus being a full time student and a teaching assistant, etc) and had a whole day of "melt down", hahaha. I went to my parents' home and just did nothing all day and cried. Looking back, I think that mini melt down was good for me, BUT it is not good to wallow in it for TOO long. :) I think as more time passes, you'll handle it better and be able to cope with it fine. It is very very stressful initially but once it settles in you'll be fine. :)

I think this means my lesion was pretty big then, if it was the size of a q-tip head.

I was leaning towards cryo. His demeanor indicated he felt this was a better approach initially, but he made no mention of the TZ disappearing up the ECC.

So Cyn, you actually had more lesions than what the colpo showed? That's my big fear right now, that he wasn't able to visualize everything. And sometimes, lesions can even be benign? Meaning completely unaffected by HPV? What is "ECS?"

If it's still there next time, but "just" one spot (same spot), can I just cryo that one spot or does it invert the ENTIRE cervix? Or, can I have a lopsided shallow leep, targeted just at the 1:00 lesion? I hate the thought of removing perfectly good cervical tissue.

I know you guys think I am ok if it comes back CIN1, but I really do know how long I have had this (12 months) and he says if it's not gone in a year it's probably going to stick around, plus, I can't change my lifestyle too much, I've already done everything right (except have unprotected sex!) so it's not as if I can stop smoking and wait for my lesions to regress from that. :( That is why he is willing to treat in March if it's still there (in fact, he is willing to treat now if I want, but warns me I may be in the same situation 6 months from now, due to recurrence. He kept emphasizing this implying it happens a lot). And there have been way more than enough gals on this board who progressed from nothing to CIS in a year or two for my comfort. Of course, I don't want to have parts of my cervix removed unnecessarily, I do want babies in the near future, as well as all my body parts, but the thought of having this inside me is awful.

I am dying to try the suppositories and can't find an ND within 200 miles of me. :( I want to order Beta-Mannan suppositories (basically: aloe vera and vitamin E), but man does that website ever look sketchy...

Thanks again gals, for your input and support.

Hi again brie,

I'm a procrastinating mood lately, as you can tell by my frequent posts. :)

Honestly, while I think it's great that you're doing all this research, I do also think that you're getting yourself a bit too worked up over your situation. I know this because I was in your shoes exactly only 5 months ago! I think a bit of relaxation and stress relief is definitely in order for you, otherwise you WILL drive yourself mad. CIN I is NOT a big problem in the grand scheme of cervical cancer and many, many women get it in their lives. You should take comfort in this fact and in the fact that it is SO mild that doctor's don't suggest treating it at all! The body fights back and is doing its best right now with your body in making your dysplasia regress. If my body could fight off mild-moderate dysplasia WITH endocervical gland duct involvement, then you should be confident that your body is working overtime, too.

I'm not sure what good knowing the size, shape, etc of your lesion will do you. I think mine (back in June) was a large, evenly spread out lesion over the surface of my cervix. I don't know how it's changed but last month the doctor still saw white areas to be biopsied. Obviously, as my biopsies came back normal, these benign white spots were due to something else (I will be getting a copy of my medical records soon to let me know what the biopsies said, exactly). The previous benign biopsies showed inflammation and condyloma -- both benign and neither pre-cancerous. So you can still have "lesions" on your cervix but they're not always pre-cancerous.


Also, you may not know how long your CIN I has been in your body, but the most important thing is that it hasn't progressed. Keeping a watchful eye on it is the only thing you can do right now. One doctor told me she had a patient who did the waiting and watching treatment with her CIN I for over two years! And yes, it finally regressed. I think you really just have to assess what's important for you. If you're patient and really want to keep your repro organs intact, then try waiting and watching. If the anxiety is driving you mad, then maybe you should opt for some surgical treatment (tho most docs will advise against LEEPs for CIN I). It ultimately comes down to what you feel comfortable and happy with.

I just want you to know that you truly don't have much to worry about. You MUST give your body the time to fight it off. It won't go away overnight. It may not even be gone by your next checkup. But there is a strong chance it will regress and you just need to be patient.

Also, if you're interested in a naturopathic doctor, perhaps you can make the trip for an initial consult and they can put you on a treatment plan. Your doc can ship you the vitamins and suppositories so you don't have to go pick them up at their office. I would NOT suggest you do anything on your own-- it is important you seek a medical expert's advice first before starting a treatment plan on your own. I would never advise doing the suppositories without seeing a naturpathic physician first. Read Dr. Tori Hudson's "Treating and Preventing Cervical Dysplasia" online-- it is a very informative and encouraging article.

Take care and good luck! Remember to stop stressing-- CIN I is common and goes away quite often. :)

Hi Lagirl, I know, I can't help overthinking this though, since I have so other problems that are "extremely rare and don't happen to women in their 20s with no family history" (still, I'm proof it can) I just think the wort...I guess my caution is coming off as hyperanxiety. Sorry!

That's great news about the watch and wait, and finally regression--so she had CIN1 (not "just" ASCUS) that took 2 years to regress? My gyn-onco didn't specifically say they NEVER regress after year 1, but that's how he came off.

So, I guess large lesions do not mean it is more than CIN1, and small lesions do not mean it is CIN1 or ASCUS, it just depends on the pathology. I will wait for the path report to come back. I hope he is right and it is not more than CIN1 because he will definitely treat right away and I am just not sure about a leep right now.

On the other hand, if I still have CIN1 in March I'll pursue "drastic" measures (some doctors still don't even leep for CIN1). Part of the reason I want to know the shape/size is to track regression or progresion. If it's half the size or less in March (but still there), I just might give it 3 more months.

Is the ECC safe? I know the pap is supposed to take cells from both ecto and endocervix, to check for AGUS. I hope I can be sure that the ECC curettage is definitive.

Is AGUS also an HPV problem, or is it an endometrial problem? I know it is much more serious than ASCUS and colpo'd stat.

I think I will look into traveling a few hours to see an ND after exams, I just have so much going on right now and can't get away. Going to a doctor's appointment is so time-consuming!!

Thanks, and sorry for all these questions, I'm just glad there are woman here to help me with this.

Sorry moderator, I didn't know you couldn't share websites.

Hi again!

I have exams coming up so I'm constantly looking for ways to procrastinate. Also, I think it's so important to come back and help inform other women who've gone through what I have. I agree with you and think that these boards are so important! I think these boards are partly what kept me sane these past 5 months.

Yes, the doctor said the woman had CIN for over 2 years and it didn't get worse, and then it finally regressed. Every woman and body is different, but the healthier you are, the more chances you have of your HPV being suppressed.

You know what would be an interesting question to ask docs? What would happen if you had CIN I for years? I mean, technically CIN I that doesn't progress is not harmful to your health. So what if someone has CIN I for years? What if it doesn't regress? I think a patient in that situation could actually watch and wait for years and years and not have any treatment done, right? Although this would not be ideal, but CIN I that doesn't progress is not dangerous to one's health, I assume?

I have also heard that some women get ASCUS paps regularly without developing any dysplasia. While this may be inconvenient, having ASCUS paps can be some women's form of a "normal" pap, if that makes any sense.

I'm not sure what an AGUS pap result means. An ECC is a good way of finding out if any dysplasia is up in the canal-- if there is, then a cone biopsy is in order (which takes out much more tissue than a LEEP).

Try not to worry until you know definitively what's going on with you. I was really happy with my choice in pursuing an NP's treatment despite several doctors' menacing "your dysplasia will get worse if you wait 5 month" -- which is BULL because most dysplasia takes up to 10 years to develop into invasive cancer, if it even progresses at all. Yes, there are some women that went from CIN to CIS within a year, but that is quite RARE. That is NOT the norm and you must remember that! Even if that were to happen to you, CIS is still easily treated with LEEPs.

You know what may help? Write out a list of your worries and the ways of coping/dealing with the worst-case scenario possibilities. For example, if you write down "severe dysplasia" as a worry, then the coping mechanism would be "LEEP with high success rate." If you write down fertility probs as a worry, then a coping mechanism would be "only 1-2% of women experience problems post-LEEP." I did this and it really did help me in a mental sense. :) Take care and let me know if you have other questions!

Lagirl, you have a great attitude.

Boy, do I ever know what you mean about procrastination. This CIN really threw me for a loop--I went in for BV, I was even going to skip my pap this year(!) bad girl. I'm also in graduate school, wrapping up this semester, but I can't concentrate due to all this. :(

I will ask the gyn-onco what happens if you wait & see with CIN1 indefinitely. My guess is he doesn't allow this because after a year, the chances of clearance/regression drop so low (indeed, he acted as if it was zero). But you are right: as long as it stays mild, it is not technically harmful.

How long did you bleed after colpo/biopsy? (I had 2 tiny biopsies taken, of the same lesion.) I had NO bleeding the first day, just minimal brown discharge (from the Monsel's) and went to the gym hours later (not the best idea, in retrospect, but it went so smoothly for me I forgot I even had it done). The second day, I thought I'd started my period as the bleeding was bright red and heavier. Now I'm on day 3, and I still have fresh red bleeding and cramping (not just Monsel's discharge). I notice it's particularly bad when I strain for #2 (sorry, TMI)...otherwise it is just typical spotting.

I feel fine otherwise. I called them yesterday, they said it was definitely not from the colpo, asked me if I was on BCP (I'm not), then told me to go to my regular gyn...which I am loathe to do, as I "cheated" on him by seeing the gyn-onco!

Different sites say different things for post-colpo/biopsy bleeding: some say 2 days, some say up to a week...running into Thanksgiving weekend, I don't want to call unnecessarily and piss them off. Maybe I will keep a very close watch on my temperature. If he thought the lesion was mild then it should not be responsible for all this bleeding, right? I had painful intercourse a few months ago, but never experienced post-coital bleeding.

I guess I am more concerned about the bleeding, (ironically) due to the ease of my colpo/biopsy, and the fact it is picking up instead of slowing down.

And, since I found out about the bad pap, I've obviously had NO intercourse! Lol, not hard!

I'm still thinking about Gardasil.

Is there anything you would like me to ask the gyn-onco at my next appointment (March)? If it's bad news, I'll speak to him well before then, but obviously I am hoping this is not the case!

Thanks again for all your ideas! I promise if things work out for me, I will do as you have.

I think this means my lesion was pretty big then, if it was the size of a q-tip head.

I was leaning towards cryo. His demeanor indicated he felt this was a better approach initially, but he made no mention of the TZ disappearing up the ECC.

So Cyn, you actually had more lesions than what the colpo showed? That's my big fear right now, that he wasn't able to visualize everything. And sometimes, lesions can even be benign? Meaning completely unaffected by HPV? What is "ECS?"

If it's still there next time, but "just" one spot (same spot), can I just cryo that one spot or does it invert the ENTIRE cervix? Or, can I have a lopsided shallow leep, targeted just at the 1:00 lesion? I hate the thought of removing perfectly good cervical tissue.

I know you guys think I am ok if it comes back CIN1, but I really do know how long I have had this (12 months) and he says if it's not gone in a year it's probably going to stick around, plus, I can't change my lifestyle too much, I've already done everything right (except have unprotected sex!) so it's not as if I can stop smoking and wait for my lesions to regress from that. :( That is why he is willing to treat in March if it's still there (in fact, he is willing to treat now if I want, but warns me I may be in the same situation 6 months from now, due to recurrence. He kept emphasizing this implying it happens a lot). And there have been way more than enough gals on this board who progressed from nothing to CIS in a year or two for my comfort. Of course, I don't want to have parts of my cervix removed unnecessarily, I do want babies in the near future, as well as all my body parts, but the thought of having this inside me is awful.

I am dying to try the suppositories and can't find an ND within 200 miles of me. :( I want to order Beta-Mannan suppositories (basically: aloe vera and vitamin E), but man does that website ever look sketchy...

Thanks again gals, for your input and support.


I see your stradegy as far as comparing lesion size...clever! The transformation zone is a risk with both LEEP & Cryro. I have personal experience with this now after LEEP, my last few paps came back with endocervical transformation component zone not present or scant. First doctor over looked it, my current doctor took action thankfully & dilated. Based on my personal experience, cryro is not something I would ever do. I think its of extreme importance to have a tissue sample to examine in order to be sure of a diagnosis. For CIN I I would take LAgirls natural approach along with close watch. Pray it regressed, and LEEP if it advanced. I would insist the close watch involved colposcopy however, I would not let my fate rest on the pap alone. I would also want HPV testing to see if an active infection is present. High risk typing is all I am concerned about. Narrowing it down to the exact type won't change protocol, so its of no use really other than just to know for ones own records.

My LEEP specimen was dissected into six sections for pathology. A. center B. bottom C. top D. Left edge E. 2nd pass and F. ECS (Endocervical sampling) Path report confirmed A1.CIN III not involving inked histologic margin A2.CIN I involving histologic margin B. CIN I involving histologic margin C. CIN I involving internal (proximal) histologic margin D. CIN I involving histologic margin E.Benign endocervical tissue and cervical stroma negative for intraepithelial lesion and F.Fragments of benign endocervical tissue. (lesions can be benign, often caused by a different strain of HPV for instance 6 & 11 or low risk) I have never heard of partial LEEPS or cryro, not to say its not possible though. I would venture to say its not favorable however. I hear ya on losing perfectly good tissue. Better safe than sorry though right?

I have heard positive things on beta-mennan, lol, does look shady though. Its hard to say what your body will do in the course of six months. You may be lucky as LAgirl has, or it may go on to a more advanced grade. I took vitamins regularly, ate very very healthy, and worked out like mad before my fist abnormal pap. I was still diagnosed with HGSIL despite my efforts poured into my health. You just never know what is going to happen, HPV is unpredictable, so all you can do is be as informed as you possibly can, make decisions accordingly, & be extra diligent about your health & paps. I hope you come to a decision you are comfortable with. Stress is a major factor for all of us. CIN is now a part of your life, its been over two years, and here I am...still with unanswered questions & forced to wait & see. What ever you decide, my best wishes to you for clean paps in the future.

For the inbetween appointments & wait time, we at least have this board to vent on :)

Hey Cyn,

Happy Thanksgiving! (and to all the other ladies here)

Well, my little theory about how many lesions there are may not work because I'm having trouble picturing the relevant anatomy and surgery. Is a leep a straight (horizontal) slice of cervix no matter where the lesion is? Therefore you could not just (lopsidedly) leep out the affected area(s)?

Ugh! I had no idea the leep could invert the cervix too, same as cryo. Do you know if this is the norm or the exception? The implication in the literature suggests it happens with cryo but not the other methods?

The reason I wanted to get it typed more specifically is because certain hr strains are much worse than others--in the US, 16 and 18 are the worst. They are also the most common, and the least likely to be cleared, as well as the most likely to progress to cancer. :(

The other strains (some 30s, some 50s) are also hr but not nearly as virulent and cancer-causing as 16 & 18. And by cancer-causing, I mean 16 & 18 account for the vast majority of cervical and other cancers (the ones that are HPV-related): vaginal, vulval, anal, oral/pharyngeal, etc. I think that is why some labs term the non-low risk strains "intermediate or high risk" (because a few strains are clearly worse than the rest).

My gyn-onco said you can't generally be typed for SPECIFIC strains, just the group it falls into (low, intermediate, or high). He said you would have to go to a special research lab that does this typing. I know this testing DOES exist, but he may be right that you'd have to go to an HPV research center and request it. He says it doesn't matter which hr strain(s) you have if you know it's in that category, but I beg to differ, as a woman I know I'd personally feel a LOT better if I didn't have 16 or 18. Not that I'd automatically be in the clear from not having either one, but these 2 strains cause most true cancers (not "just" dysplasias).

Thanks for including your path reports. Did you have different grades within the same lesion? This waiting is no fun :( and all the while I'm afraid he might have missed other lesion(s) because the colpo was so fast.

Cyn, you cannot think that CIN is now part of your life, after a successful leep, and (several?) clean paps, you must believe that you've beaten this for good, whether it's clearance, or "still there" but doing no harm.

Have you ever used suppositories? I am embarrassed to say I have no idea where to insert them (that is, how far up). I rarely use tampons because I am paranoid about TSS. Lagirl, do you know anything about these suppositories and TSS?

Thanks.

Hi!

Yeah I wish they could specifically type the strain of HPV we have. I guess it's too costly for the insurance companies and ultimately I guess there's no true benefit knowing which kind you have, especially since HPV works differently in every person. Meaning, even if you had the more virulent kind of high risk HPV (16 or 18), it may not affect you the same way as it would affect the next woman.

Regarding the suppositories, I really would encourage that you seek a doctor's advice before using them (a naturopathic one). You're supposed to insert them all the way up against your cervix because they act as a type of natural cryosurgery -- they encourage the abnormal cells to slough and shed, but without the risks of a real cryosurgery. They get kind of annoying to use for 3 months, but in retrospect, DEFINITELY worth it -- and by annoying, I mean they can be slightly irritating but eventually your body gets used to it. There really can't be any risk of TSS because the suppositories melt from your body heat, plus the ingredients are all organic and natural, no chemical crap-- you're supposed to wear them at night so they don't leak out when you're walking around. So yeah, wearing pantyliners everyday for 3 months is also a must. But trust me, I would do this all over again if I had to! I am worried that my dysplasia will come back but I won't hesitate to do the whole regimen and suppository route again.

Speaking of having natural ingredients, my doctor also suggested I switch to all-natural, organic tampons that you find at health food stores (Whole foods or Trader Joe's). I never knew this, but regular tampons have a lot of synthetic materials and other chemicals (ESPECIALLY the ones that are deodorized) that are bad for your body, which is part of the TSS problem.

Hope this helps! I know the waiting is the WORST part of all of this, but you'll make it through it, whatever you decide to do. Take care :)

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!

Hi lagirl, I may see a naturopath over Christmas for the suppositories, assuming I can find a reputable one who has some knowledge of cervical dysplasia! I so wish I lived in a bigger city, there's no one within a 200 mile radius from me according to the naturopath website! Long shot, but is there an online site or phone number to call to check their credentials and reputation?

So, it is true that one can't be tested for the specific strain(s) of HPV, just the class it falls under? My second opinion gyn said you could, the gyn-onco said you can't, so I don't know which one to believe. I know they certainly have the capability to, but perhaps those are special labs for studies/publications only.

I don't use tampons, but I will buy the non-chemical ones you suggested to get the suppositories up there. I have read 88Shadow's posts and she was on a very similar regimen to yours which proved successful for her as well. :)

I've been tossing around the Beta Mannan purchase in my head, even wrote out a check, but mainly due to the sketchiness of the website (and to a lesser extent the lack of positive testimony), for the time being I've decided against it. Aloe vera and vitamin E won't hurt, but the question is whether it's really just aloe vera and vitamin E in those capsules!

How long were you on your regimen (3 or 5 months?), are you continuing at this moment, and if so, for how much longer? Do you have a "maintenance" regimen once you are in the clear?

Girls, I am (hopefully UNDULY) concerned that my gyn-onco wasn't able to visualize all the bad areas. If I only had one small-medium bad area it seems soooo unlikely a pap would've picked it up! Please tell me they know what they are doing and that I am overthinking. I have read too many accounts of women who had the bad pap-clear colpo combo (several times) with scary diagnoses.

Again apologies for all the questions and concerns...I really never thought I'd have to know so much about my cervix and other potential reproductive problems. :( How I wish I could turn back the clock!

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.

Hi Brie!

Ok firstly, don't wish you could turn back the clock. And don't think that you don't ever want to date or have sex again...that's no good for your mental state! It's completely understandable to be put off by sex, etc, when you first get diagnosed-- BUT you must remember that everyone and their mother, LITERALLY, have HPV. The moment genitals come in contact, in any way, there can be transmission of HPV. So unless you planned to devote yourself to the Catholic Church and don a habit for the rest of your life, then chances are you would have come in contact with HPV in your lifetime. I remember going to a good friend's house from college this past summer where she lived in a big house with 5 other girls. Later on that night, my friend tells me that all 7 of us have dealt with HPV to some degree (abnormal paps, dysplasia, etc). That fact floored me and also indicated to me how RAMPANT HPV is! And while sex with different partners can definitely increase your chances of getting HPV, none of these girls (myself included) are into casual sex with many partners. So it's truly hard to avoid!

That's great that you're considering seeing a naturopathic doctor. I think they're great! They're a great mix of both words-- traditional western medicine and homeopathic/naturopathic preventative medicine. And preventative health is essential for those of us with HPV! They should all be trained the same way, but try searching for one that has experience with women's health.

Also, the American Association of Naturopathic Physicians and they will list all the doctors across the country with their credentials. That's how I found my doctor and I loved her! What's also great is that they can help treat any other health ailments you may have. Of course, the more compromised your immune system is, the harder it will be to suppress your HPV, but it's not impossible. I only say this because overall I'm pretty healthy and have no other health isssues, so the health regimen my doctor put me on was geared towards pumping up my immune system and suppressing my HPV.

The suppositories were for 3 months -- you also have to give your body a month break after the routine before you do a re-pap. I haven't been continuing the regimen but I was considering keeping up with the suppositories. I think if my next re-pap in February is still abnormal, I will get back on the suppository regimen for a few months. Repeat colpos and paps are super irritating, but hearing the "normal biopsy" news was one of the greatest moments ever! And so worth the 3 months of gooey suppositories (sorry for the descriptions, but it's true).

Let me know if you do get on the regimen. I have a couple of tips for the suppositories, especially the one you use once a week that is VERY irritating! :( But like I said, worth the discomfort in the end.

The suppository regimen is very successful for mild dyplasias. For moderate and severe dysplasia they do a type of herbal cyrosurgery where they paint your cervix once a week with some type of herbal solution, and then wash it off. Sounds painful and uncomfortable but it has great success, too. Have you read Tori Hudson's article on Preventing and Treating Cervical Dysplasia? It's really informative and encouraging. :)

Take care! Try not to stress and keep eating healthy and exercising. Have a nice weekend!

Thanks for your encouraging words Lagirl. It was easy for me to suddenly abstain and consider lifelong celibacy when I heard the news. The man I have always been so attracted to suddenly could not turn me on for my life. This news was so left-field and shocking. I realize now that I have been foolish and uneducated about STDs. I think I will feel better if my biopsy indicates the same or better as my pap, but I'm pins and needles waiting.

I searched & searched to NO avail for Tori Hudson's article (I'd seen it mentioned in your other posts), but I finally found her line of herbs/vitamins--Vitanica. There's vitamin A, green tea, and "Vag-Pak." Is this what you used? I am looking into an appointment with an ob-gyn holistic DO in NYC (expensive and time-consuming as it is) for guidance. I used the Naturopathic website and they did not list anyone with experience in HPV dysplasias within 4/5 hours drive for me.

Ladies, if you have familiarity with these products, please chip in:

* Veregen (a recently-approved FDA green tea ointment for warts--the insert says NOT for intravaginal use, but I plan to ask my gyn-onco for an off-label use, if this doesn't clear before my next appointment).

* I3C/DIM--I know 88Shadow used this, anyone else? Lagirl? I'm currently taking 200mg.

Thanks again everyone!

Hi Brie,

Actually there is a little more to this story. I may as well share so others are aware of the incompetence that can accompany those employed in the medical profession. I got tested through Kaiser for HPV in January of 2006, and the lady that called me actually told me I had types 16 & 18. I asked her if this was common to have more than one type and she said yes. At the time, I was not knowledgable enough on the subject to doubt or question this. After I got married I went onto my husband's insurance. So, in early 2007 I requested copies of ALL my medical records to forward to my new doctors. It was at this time I learned the value of getting copies of everything immediately after a procedure is performed, and reviewing it for yourself so you can ask questions if something seems out of place. Anyways, I noticed on the lab from Kaiser it noted Positive for Human Papilloma Virus High/intermediate risk group types 16/18/31/33/35/39/45/51/52/56/58/59/68. *Please consider counseling and testing this patient for HIV. That was it. By this time I had done far more research and knew 16 & 18 were linked to cervical cancers, but I did not see anywhere in my records specifically what type or type(s) I had from Kaiser. I noticed my new doctor had written on my physical exam sheet + HPV 16,18. So I figured either they were seeing something I wasn't in my records, like they knew how to read it, or they make note of these types due to its significance and the lady that called me from Kaiser back in 2006 gave me inaccurate info. I discussed this issue with my doctor during my last visit, and it turns out it was the latter. They don't do specific typing since protocol would remain the same, and for the reasons previously mentioned I am kinda glad they are equally diligent about the other types of HPV...at least until more research is performed.

The dilation was for a repap. It was a VERY easy procedure, and felt just like a normal pap really. She used a little plastic dilator, quick & simple. The results for that pap came back normal, and the transformation component zone was present this time!! :) I have not had another colposcopy since my follow appointment to check on my cervix just after I had LEEP. I have read posts on here where women post LEEP get colposcopy directed paps, but I was never offered this. I have yet to understand why it would not be protocol for all women with known history of CIN & who have tested positive for HPV to get colposcopies along with paps for the first few years post treatment. I know I would rest much easier, the false negative rate for paps makes me a tad skeptical. I can only assume its an issue of money, which is just sad.

I am going to keep close watch for news on the vaccine. I have heard recently there may be blood clot issues from it. I think its hard to beat natures cure personally. Antioxidents pack a mighty punch! I also feel that everyone is different, and some people are naturally going to be more vunerable to certain viruses than others. Staying healthy & on top of paps seems like a good plan of attack to me :)

Thanks Cyn, for sharing. I will get a copy of everything as you said. I'm wondering now if my last year's pap actually showed koilocytosis or something even though the card they sent me said "normal." As you say, the false negative rate for paps is worringly high.

What is a colposcopy-directed pap? Is it a pap on suspicious revealed during colpo, in lieu of a biopsy? I'm with you--I think for those of us who test positive for hrHPV, a colpo AND a pap are both in order at the same time. The colpo is so quick and easy, as you said it's probably just a matter of money. I think that if you asked your doctor to perform both during your annuals, that would cover you.

The results from your last pap is such great news. Also, I'm so glad to hear your TZ is ok! Do you get to return to annual screening now?

Do you think the vitamins/antioxidants regimen you were/are on made a difference? I'm so hopeful that mine will.

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:

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.

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.

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...