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Cancer: Cervical & Ovarian Message Board

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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'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.
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 [I]can[/I] 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 [I]adamant [/I]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.

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