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Old 03-17-2004, 02:35 PM   #1
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Keri76 HB User
First pap after leep

Well I got a letter from my doctor today saying my pap came back normal THANK GOD!!! I was so worried it wasnt going too. I've been popping vitamins like crazy ever sence. I guess I gotta keep going back for more every 3 months for the next year. Wonder what the chances of it coming back are? I remember my doctor telling me I had the HPV virus but he never even gave me a test for it. Even if it is the main cause for it how can they just assume thats how you got it. Doesn't make any sence to me.

 
Old 03-17-2004, 04:16 PM   #2
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csoar2004 HB User
Re: First pap after leep

Quote:
Originally Posted by Keri76
Well I got a letter from my doctor today saying my pap came back normal THANK GOD!!! I was so worried it wasnt going too. I've been popping vitamins like crazy ever sence. I guess I gotta keep going back for more every 3 months for the next year. Wonder what the chances of it coming back are? I remember my doctor telling me I had the HPV virus but he never even gave me a test for it. Even if it is the main cause for it how can they just assume thats how you got it. Doesn't make any sence to me.
Congratulations on your normal pap result!!
HPV cellular changes can show up on your pap smear. That's probably how he knew. Because HPV is a virus for which there is currently no cure, it will be very important for you ALWAYS get your pap smear on schedule. HPV has been shown to cause abnormal pap results and is closely associated with cervical cancer. No, that doesn't mean you HAVE cervical cancer or even that you will GET cervical cancer. It simply means you are at greater risk for it due to HPV.
(ya, I know it sucks. I have it, too.)
On the plus side, since my colposcopy and subsequent treatment 12 years ago, I've never had another abnormal pap. But I don't ever miss getting a pap, either.
If you want to know more exactly what your risk is, the next time you go for a pap, ask your doc to do the digene DNA test for HPV. There's dozens of strains of HPV but only about 6 are the real baddies. It might be useful for you to know which one you have.

best wishes,

charli
highest wt: 233
203/146/146 on Fat Flush for life and feeling

 
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Old 03-17-2004, 08:23 PM   #3
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Lilyenne HB User
Re: First pap after leep

Congratulations on your clear pap. I'm extremely jealous - I had my LEEP cone for CIS a month ago so I still have 3+ months until my first post LEEP pap. It sucks that we will always have the fact that this could come back in the back of our minds. I know I'll be a nervous wreck waiting for that first pap - I'm already tired of not knowing if my CIS is gone. I'm especially worried that I will still have CIS because my lesion had endocervical gland involvement and I had HPV for at least 8 years before I had any symptoms.

I think that if you are younger than 30 and your LEEP margins were clear, you have a very small chance of a reoccurance of dyplasia in the near future. It doesn't appear that they know what happens with the HPV, some people think you will shed it, others believe it goes dormant and can either stay that way or reactivate. It seems like the people that have reoccurances of dysplasia have it happen after a long period of time (10+ years). I think that Dr's tell people that LEEP is curative in 95% of the cases. However, I don't think that they have done long term studies of reoccurance (everything I've read has been following up for less than 5 years).

Good luck with those paps every three months and keep up with the vitamins.

 
Old 03-18-2004, 10:34 AM   #4
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preshy7 HB User
Re: First pap after leep

it can come back- i had a cone in sept 02 and i just had cryo done 3 weeks ago. I just wanted to correct Lillyenne becasue, if you DO indeed have recurrence, it is most common in the 2 years post your procedure. I think if you make past 2 years, it is a good chance it might not come back. Its scary but not the worst thing in the world.

 
Old 03-19-2004, 09:10 PM   #5
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Susannah HB User
Re: First pap after leep

My gyn told me there was something like an 80% chance (or 85%, can't remember which for sure) that I would never have any problems with an abnormal pap again. So, that made me feel good. I've had 2 follow-ups, one at 3 months, when I had a normal pap and also a normal colposcopy (we were trying to get pregnant, I wanted to make good and sure that dysplasia was gone), and one at nine months just a few weeks ago, and that pap was also normal. Also, with this last pap I had her run the HPV test along with the pap, because it is possible to have the virus active without having abnormal cells yet, and it was also negative for any HPV. I'm very happy about it, and I'm now pregnant, too!

There's new research out that says that the chances of CIN recurrence go down if you and your partner use a condom, also that the occurrence of CIN regression goes up with the use of a condom. Also, the research indicated that the flat penile lesions which can be a result of high-risk HPV in men, the occurrence goes down with the use of condoms, and the rate of regression goes up. These were people who didn't have multiple partners, so it indicates that the virus CAN be passed back and forth, so if your partner is okay with it, you might want to consider using a condom.

 
Old 03-20-2004, 09:30 AM   #6
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Lilyenne HB User
Re: First pap after leep

Congratulations on everything! My husband and I are also thinking about trying to get pregnant if I have a normal pap and HPV test at my 4 month test. Hopefully it will go as well for me as it seems to be going for you.

I read the paper about the condom usage. I told my husband that when we begin having sex again he will be using a condom every time except for those two days before I ovulate. My husband isn't circumsized so condom use might be especially important for us.

The person posting that dysplasia most commonly comes back within the first two years was totally right. I just have it in my mind that dysplasia popping up in the first two years is more of a "they didn't really get rid of it" than "it came back." I'm worried about the dysplasia that comes back years after treatment and normal paps. It doesn't seem to me that any long term studies have been done - no one seems to follow women more than 5 years. Of course, in 10 years my ovaries probably aren't going to work anymore anyways

I'm really glad that you posted your good news. I've really been stuggling with this. I go from good days thinking that I'm probably fine now to days when I'm pretty depressed. Sometimes I kick myself for thinking I could wait so long to try to have children - I'm 32. I'm trying to keep a positive attitude but it was just such a shock to go from normal to CIS in 11 months. It was especially shocking because each diagnosis was worse - LGSIL pap, moderate with focal severe colposcopy (after the Dr. told me the lesion looked mild) to CIS with endocervical glandular involvement on the LEEP cone. The good news is that my endocervical sample was completely normal. Now I think that all of the waiting (especially for the next pap) is the worse part - I'm not sure how I'll survive until early JUly.

 
Old 03-20-2004, 09:53 AM   #7
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Susannah HB User
Re: First pap after leep

What my husband does that sets my mind at ease is he has regular penile exams, and he's had a urethral pap done once. His doctor will see him every 3-4 months, and what he does is a colposcopy with a vinegar wash, of the penis. So, just like our colposcopy, they put vinegar on it then look at it with a magnifying device to see if anything's turned white. Each time they do it, my husband says at least two people take a look, the doc and either a nurse or physician's assisstant. The pap was similar to ours, in that they take a cell sample and a pathologist looks at it, and if they see anything abnormal, they run an HPV test. Everything has been fine through all these check-ups, so we haven't worried about using a condom the whole time trying to conceive. Perhaps you should try to find a urologist in your area who will give your husband HPV checks?

I really haven't decided even though that article came out whether we will go back to using a condom. I really don't like them, and neither does he. I definitely don't want to go on the pill, though, so I'm thinking that maybe we'll use a diaphragm from now on, although I plan on trying to have another kid soon after this one (getting pg again within a year or so, I want to have them both by the time I'm 30, and I'm almost 28 now). After the second kid, dh is going to get a vasectomy (they can do it without an incision now by laser), so we won't need birth control. I just can't see going back to a condom, especially if I continue to have regular paps. But, who knows, I might change my mind. I've gotten a lot less stressed about the whole dysplasia thing in the past year since first getting the abnormal pap, and then eventually the LEEP. Now, I kind of feel like, if something is going to go wrong with my health, this is really one of the less innocuous things, I mean, they've got really good detection methods and really good treatment protocols. Plus, they know enough about it for me to know the things I can do to keep myself healthy. So, I guess I found a brighter side after all.

 
Old 03-20-2004, 02:03 PM   #8
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Keri76 HB User
Re: First pap after leep

Hey Girls Thanks For All The Reply's. I Don't Think I Could Talk My Boyfriend Into Using A Condom If I Tried. We've Been Together For 9 Years And Have A 9 Year Old Daughter And A 5 Year Old Son And Have Been On Birth Control Pills For About 4 Years Now. I Try Not To Even Think About Mine Coming About, I'm Just Going To Keep It In The Back Of My Head Until My Next Pap, Haha! Sitting Around Worrying About It Isn't Going To Help. My Doctor Never Told Me Anything About My Margins, I Keep Hearing You Guys Say Something About That. I No Before I Got The Leep Done He Only Thought I Had Mild And After The Leep Was Done He Changed It To Moderate To Severe And That He Was Glad He Did The Leep. He Said He Couldn't Stress The Importance Of Taking Vitamin C To Help Fight It From Coming Back So Thats What I've Been Taking Ever Sence I Had It Done ( I Take Like 2,000 A Day Or More)

 
Old 03-20-2004, 08:50 PM   #9
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Lilyenne HB User
Re: First pap after leep

Yeah, I told my husband today that he needs to go to the urologist. I'd been nagging him but it is nice to hear from someone whose husband actually does it. He is fighting it a bit but I have no intention of messing around with my health (or his for that matter) - it was pretty scary for me, I went from perfectly normal to carcinoma in situ in 11 months. However I figure if my husband is told his only chance to have sex again is to go to the doctor, I'm sure he'll give in. Unfortunately he has actually been quite ill the last few months with other issues- he ended up with two major abdominal surgeries and spent 3 weeks in the hospital the last few months. I can't help but wonder if maybe he just recently gave me HPV because his immune system took such a beating. Of course what probably happened is that I've had it (actually I probably gave it to him) and the stress on me because of his situation just brought it out.

I hate condoms too. My husband doesn't really seem to mind them. I told him that he may always have to use them and we'll just use a turkey baster to try and get pregnant . But I agree with you about the pill - I'm done with hormonal birth control. They just don't know enough about a link between dysplasia and hormones. Right now I think that I'll just stick with condoms.

I'm sure that this will also go to the back of my mind once I start having normal paps. Until then I guess that all I can do is try to eat better, get lots of sleep, keep my stress to a minimum, exercise (which I'm not presently getting) and be good about taking vitamins. Thank you again for the encouraging words.

 
Old 03-20-2004, 08:55 PM   #10
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Lilyenne HB User
Re: First pap after leep

Keri,

You might look into taking a folic acid supplement. There is some evidence, although not conclusive that the link between birth control usage and dysplasia is because hormonal birth control depletes the body of folic acid.

The margins of your LEEP refers to the edges of the piece that they took out. My guess is that your doctor probably would have told you if your margins were not clear, especially because you have moderate to severe dysplasia. My doctor told me that even margins that still contain dysplasia on the LEEP sample aren't all that indicative of reoccurance (generally involved margins are the single biggest predictor of whether you will still have dysplasia at your follow-up appointment). She said this is because the LEEP burns the edges of the tissue so it is possible (and she even said probable) that any dysplasia that was left was burned and destroyed.

It is VERY important that you keep all of your subsequent pap appointments even after the LEEP as dysplasia can come back, especially within the first two years.

 
Old 03-21-2004, 08:58 AM   #11
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Susannah HB User
Re: First pap after leep

I just wanted to tell you that it's probably worth it to actually ask the urologist's office on the phone if they will give your husband a check-up for high-risk HPV because of the fact that you had dysplasia. The first urologist my husband went to refused to do it, don't ask me why. Anyway, we learned to ask before wasting our money on going to another doctor.

Quote:
Originally Posted by Lilyenne
Yeah, I told my husband today that he needs to go to the urologist. I'd been nagging him but it is nice to hear from someone whose husband actually does it.

 
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