Abnormal Pap, Mild displaysia, some HPV, lsil

• By mutchy
• Posted September 28, 2009 at 3:12 pm
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Yes it's true...HPV can lie dormant for years and show up later on. I also had two successful pregnancies and then had an abnormal pap like 25 years ago and they did cryosurgery and then just this past spring I had another abnormal one and had to have a LEEP instead of the colposopy due to scar tissue from the cryosurgery. I had it done and it all came back fine. I have to go back in October for a repeat pap and I am hoping that it comes back normal so then I only have to go back to once a year. HPV is very common and does not always result in anything serious such as cancer so try not to worry to much...although I know that is easier said than done.

Keep us posted and good luck to you.

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• By l0vej0y
• Posted September 28, 2009 at 5:11 pm
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thanks for the support mutchy.. I will keep you posted.

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• By Lilly71
• Posted October 1, 2009 at 5:01 am
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Hello,

I am new to this forum. I have been told that HPV can lie dormant and show up (activate) after many years. I guess this is also what happend to me. My story is similar to yours and as follows:

I have had regular normal pap smears since forever with a 1-2 year interval. I am 38 and have been in same relationship for 15 years. This March 2009 I had my first abnormal smear ASCUS and a HPV test on same sample showing I was HPV negative.

I was advised to relax and that I was in low risk of ever having another abnormal smear. To be on safe side they advised me to have a follow up smear after six months. I just had this done mid Sep 2009 and it showed I had moderate to severe abnormal changes i.e. HSIL of some degree.

Now I was referred to a COL. Here the GYN took new sample. I am now waiting for the results in 14 days or so. I was told that I most likely, almost certainly will have to have a LEEP or conisation regardless of the results to make sure that there is not an undetectable leison higher up. If so this would disappear after a leep or conisation.

I am trying to be positive but I am scared. I also do not trust anything anymore. Therefore I have decided to go ahead with the conisation regardless to hopefuly get piece of mind.

Since once been told I was in the clear with a ASCUS and negative HPV in the spring I do not trust a screening test (whatever kind) anymore. They now tell me that my HPV was most likely not detectable back then because it was either dormant and just waking up or because I had cleared the virus and the leison was to follow. What is the use of HPV testing if we can not trust it. I was now told the false negative rate on a HPV in connection with a ASCUS or mild abnormality LSIL is around 4-5% I would have appreciate to have this information back then. Had I know this fact I would have made a follow up smear and HPV after 3 months or gone for a COL immediately back then.

My thoughts are therefore, that if they see something get it removed to make sure you do not have to worry again, especially if you have had the children you wished for. I am not hesitating and know I will do and have the procedure done. If there is the slightest I will even have a HYSTErectomy. Better safe than sorry.

Take care and please do let us know how it goes.

Lilly

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• By l0vej0y
• Posted October 1, 2009 at 9:38 am
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thank Lilly71, I'm sorry to hear all that you've had to go through, that must be hard. I do have the children I want and right now, my concern is to get healthy so I can enjoy my time here with them. God has blessed me and I can't complain.. so I'll let you know how it goes and I'll keep you in my prayers also.

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• By corellin
• Posted October 1, 2009 at 10:43 am
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Hi Lilly71 -- I think if you've been in a stable relationship, then it's less likely a lesion is "incident" which means an early expression of an HPV infection and likely to clear on its own and more likely it could be a more serious lesion. But, I wouldn't rush to get a procedure if testing doesn't confirm the need. (I realize it all depends on our level of risk tolerance and each person needs to make that decision for themself and I can understand the benefits of getting a procedure earlier, rather than later, to try to resolove a situation more definitively and also sooner.) But these procedures are not without side effects (although those are different for each person and may be more or less severe -- and sometimes may be completely minor, depending on how much tissue is removed and your own body's reaction to the procedure). I had HPV16 and CIN that spread to four quadrants. As a result I had a "top hat" LEEP which took two swipes at the cervix and removed a lot of tissue. I've been very upset at the long-term after effects of the procedure. I have significant loss of cervical mucus, narrowing of the cervix, a shortened cervix, loss of contractions during orgasm. For about a year, I had a coffee ground type discharge or sludgy black discharge during my period. Sometimes my cervix feels "heavy." I can also feel little pock-mark areas where I've had various biopsies. Most recently I tested positive again for high risk HPV (although had a normal pap). This turned out to be a "false positive" in that it was HPV67 (I found out from a University of Washington type-specific test) which is usually not a big deal and has since cleared. But before I knew the type, I went to my GYN in a panic and she did an ECC and a bunch of biopsies on any spot that looked at all suspicous. Lo and behold, what came back was "tubal metaplasia" in the cervical canal and endometriosis in the cervix and vagina as well as "reactive focal changes." After that I did a bunch of reading and discovered LEEPs and Cones cause trauma to the cervix which can then lead to endometriosis. I haven't found this in many places because I don't think it's on the radar for clinicians or researchers and maybe it's not common, although one study said it was. So now I feel the procedure has led to a state of chronic inflammation in my cervix/vagina and perhaps set me up for future problems? Again, though, I really have no way of knowing whether these were related to the LEEP and it's very possible others don't have these side effects. Plus, you weigh the risk of not treating against the potential side effects for the treatment -- and each person has their own process for figuring that out depending on their personal values. Given my diagnosis and HPV16 result, I don't think I could have made a different decision. I wish I had known whether this HPV was due to a recent exposure or something older, because if recent, I would have given it a little more time. I also wondered if the repeat paps every three months spread the HPV to all those quadrants. There's so much uncertainty with HPV, lesions, diagnostics and treatment that there's really no way to know what's the perfect course to take.

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• By Lilly71
• Posted October 1, 2009 at 1:45 pm
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Hi Correlin

You scare me there saying it is more likely to be a serious lesion than not. I have been in same relationship for 15 years and always had normal smears. If serious lesion developing since then, I am in big trouble, no ?
I was thinking my HPV was lying dormant for 10+ years and something made it come about and reactivate?

Is it really more likely I am about to discover a serious lesion and how will this explain my HPV negative - borderline this spring and several negative smear during so many years. I had smears on 1-2 years interval since very young.

I just do not know what to expect anymore.

Sincerely
Lilly

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• By corellin
• Posted October 1, 2009 at 4:23 pm
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Hi Lilly71 -- I'm sorry. I didn't mean to scare you. I just mean I think LSIL is less likely to resolve in someone who's older and has had HPV for a while (unlike someone of any age who just got HPV and the LSIL is an early expression of the infection, which, in that case, is more likely to clear when the HPV infection clears). If you've had HPV for 15 years, then I think it's likely the LSIL is telling you that your body hasn't cleared the infection, and it might take a procedure to get rid of it. I didn't mean you should worry -- just perhaps take it more seriously than LSIL in a person with a new infection. And, I don't think you should worry because if it does take a procedure to rid you of the active HPV infection, then you're likely to be just fine after that. And, these are really my opinions and not supported by anything I've specifically read -- so take it for what's it's worth!! -- (possibily, not much!)

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• By corellin
• Posted October 1, 2009 at 4:28 pm
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PS -- And, oh, Lily71 -- if you're testing HPV negative, then that is even less worrisome, but more of a reason to follow up with colposcopy/biopsy to find out what's really going on. Sorry, I'm forgetting the particulars!

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• By kelbel09
• Posted October 1, 2009 at 7:54 pm
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Hello to everyone I am knew so I thought I would join in-- here is what I understand from everything that I have gone through HPV does not go away I keep hearing people mention when u clear the infection--- You dont clear the infection think of it like herpes u never get rid of it --like herpes it lays dormant and then sometimes its active. I know this b/c I started having abnormal paps in 06 with that pap was told I had HPV had a colpo repeat pap in 07 same result repeat pap in 08 same result repeat pap 6 months later ( this past feb 08) clear no HPV repeat pap again in july 08 guess what abnormal and HPV pos again go figure huh and this time I wasnt ASGUS I was SIL- displysia so since I am expectantly expecting I have to wait until the baby is bron before we do a repeat colpo this will make #4 in 3 yrs so much fun ( for the record I have been with my hubby for 10 yrs) prob got HPV in my teens never showeed up until now

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• By l0vej0y
• Posted October 6, 2009 at 3:57 pm
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I got the results back today from my biopsy.. they said something about chronic inflamation - benign and they are going to freeze the cells. I'm not sure what this all means but I'm looking forward to getting as much information as possible when I speak to my doctor in 2 weeks.

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