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Old 04-10-2007, 04:38 PM   #1
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JustMe29 HB User
Diagnosed Today and Scared

Hi everyone - I am a 31 year old female, and had my first abnormal pap test 2 weeks ago. I got a letter from my doctor explaining that I had ASCUS and she would further test my sample for HPV. She just called me today and said I am HPV Positive for high risk (the cervical cell changing kind, and NOT the genital warts kind)

I am scared, but the past week I read a lot on the internet and did a lot of research to "arm" myself with knowledge. I am scheduled for a colposcopy next week. She said she'll probably do the biopsy. My doctor also told me that 99% of her patients with a pap result of ASCUS that are also Positive HPV only have mild cervical changes. She said that if the cervical changes are moderate to severe, then my pap result would have been more alarming then just ASCUS.

I also asked her about my never having an abnormal pap before and asked if I contracted the HPV in the past year since last year's pap was normal. She said there is no way to tell how long I've had HPV or from whom I contracted this.

She did tell me that if the cervical changes are mild, it may resolve itself within 1-2 years and I may have normal paps again. I asked her does that mean it's totally gone, and she replied that it is unknown if it's gone completely, or if it is just dormant. She did say that HPV is just so common and most people have been exposed to it at some point.


Her plan is that if cervical changes are only mild, to keep a watchful eye and another pap in 4-6 months, rather than jumping right into other procedures such as LEEP. Any thoughts on this?

Thanks for much for reading...I feel better knowing you all are here to help and talk about this - it makes me feel not so "alone."

 
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Old 04-10-2007, 05:13 PM   #2
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torigirl HB User
Re: Diagnosed Today and Scared

Hi JustMe29. I too, have just been recently diagnosed as well. I have always done my yearly pap tests with normal results and this time around I too was told I have HPV ( the same kind as you) along with severe dysplasia, possible CIS. I had my copolscopy yesterday (which is a piece of cake) and will have to wait a couple of weeks for any results. Because of what my doctor saw during my copolscopy, I am already scheduled for surgery, which has me freaked out too! How can a pap smear be normal and then something like this pop up? Driving me crazy...

I posted just yesterday and have gotten some responses, so I'm sure you will here from others who have been where you are right now. After reading much on the internet (probably too much) I've found talking to others who are experiencing the same thing, is a much better way to find things out than the "worse case" scenarios you are reading on the internet. I hope your copolscopy goes smoothly and I'll keep you in my thoughts and prayers...

Tori

 
Old 04-10-2007, 05:25 PM   #3
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JustMe29 HB User
Re: Diagnosed Today and Scared

Hi Tori,

Thanks for responding - Thanks for your kind words of encouragement and I pray that your surgery goes well. What type of surgery are you having, if you don't mind me asking? Also - you said your pap was a normal result...how did you find out about the HPV ? And your doctor was able to tell the cervical changes were severe just by colposcopy exam?

This is what I've been wondering - if my doctor will be able to tell me what she sees, and how it looks AT the colpo appt, or will I have to wait in agony for some kind of answer until biopsy results are back.

It's worth noting here - my doctor (and probably many others) does not test for HPV UNLESS there is an abnormal PAP result. I think everyone should get HPV tested regardless of PAP result, seeing that it's so common.

Again, thanks for the reply - I feel some sort of "bond" with others going thru this with me...I'm praying for you.

 
Old 04-10-2007, 05:58 PM   #4
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DiamondLight HB User
Re: Diagnosed Today and Scared

JustMe29: She seems to be following proper protocol. Mild results are watched, because they most often do resolve on their own. One website claims that some researchers believe CIN1 (mild dysplasia) should be put in a separate category, because "there is speculation that this type of dysplasia may be triggered by less oncogenic strains of HPV." Hopefully, that's true, but it's difficult to know what to think. Finding answers isn't easy, *sigh*.

JustMe29 & Tori: The best advice I can give (besides never missing paps) is to wait for any biopsy results. I've heard of some colposcopies looking worse than a biopsy revealed and I've experienced one looking better than it was in reality. In fact, my doctor thought the normal biopsy would remove all the cells. It didn't work that way, because I ended up with two leep and a cone to remove the bad areas. The second leep was done instead of the hysterectomy he wanted to do. So, you really never know by a colposcopy alone. Good luck to both of you!

 
Old 04-10-2007, 06:28 PM   #5
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torigirl HB User
Re: Diagnosed Today and Scared

JustMe29-I am having a cold knife cone biopsy and an endocervical curettage. Basically, trying to get out all of what was seen during my copolscopy. Apparantly, there was a high grade lesion that was seen when my doctor looked through the magnifying instument used in this procedure. (During the procedure they apply a vinegar solution that makes any abnormal or affected areas stand out so they can look at them more closely during the copolscopy.) My understanding is that the lesion (affected area) has affected my cervix deeper into the layers of the cervix than something less mild. That is why my doctor scheduled me for the surgery before finding out any biopsy results. No matter what, this has got to come out. ( I learned of the severe dysplasia by reading my pap smear results before my copolscopy) It's only been a day since all of this has happened and I guess I'm still kinda spinning about it. I certainly didn't expect all this. I've been so weepy since...wondering how this could have all come about when I don't have any of the "risk factors" that can contribute to having this high risk HPV strain and CIS/severe dysplasia. These next 2 weeks are going to drag by....Thanks for the prayers...I appreciate it! I'll be sending good vibes your way too!

DiamondLight: I know that the biopsy results are going to tell us what is going on for sure....it's just the waiting...and my mind getting the best of me that is the toughest...thanks for your words of encouragement.

Tori

 
Old 04-10-2007, 06:55 PM   #6
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JustMe29 HB User
Re: Diagnosed Today and Scared

Hey again - thanks for the info - I'm glad you're scheduled for surgery to get rid of this stuff...wow...I know how you are feeling - the whole spinning thing - I have been pouring over this computer and the message boards, trying to make sense...the letter I got from my doctor first advising of the ASCUS - I re-read it about 50 times - and I keep re-reading the same websites over and over to see if there is any DIFFERENT info - btw, I'm not OCD, just scared...LOL.

My first thoughts of this (aside from worry about my health) was that, oh my goodness, my life is over, my dating life is over, no one will want me now (I'm single, btw) - I just cannot believe how common this is...I have a girlfriend who had cervical dysplasia when she was 17 and first sexually active...back then we had never heard of HPV, and she ended up having the cells frozen, but looking back, I'm guessing it was HPV (doctors said is WAS an STD)

I know this is very very common and 75% of people have been exposed, but I guess the whole stigma of it being "sexually transmitted" is what I hate. I'm trying to deal with it.

Thanks again for your reply - and thanks Diamond also!! :-)

Saying my prayers for all of us tonight........

 
Old 04-10-2007, 06:57 PM   #7
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Re: Diagnosed Today and Scared

Tori - one more thing - please post your results and how you're doing if you're feeling up to it...we're in this together!

 
Old 04-10-2007, 07:45 PM   #8
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DiamondLight HB User
Re: Diagnosed Today and Scared

JustMe29: Actually, from the reading I've done on HPV, it's skin to skin contact...and there's not always a sexual explanation. I tend to believe that, I think they have more to learn about how this works. I haven't been tested, but it's assumed I have it.

Tori: I wish I had some advice on calming nerves. I think I'm more nervous now than in the past...but I'm doing much more reading (didn't fully 'get it' until recently) and I've also missed a couple paps. I think the waiting for tests and results is the hardest part...time goes so very slow. *Try* to think positive thoughts and know that you will get through this. (You too, JustMe!)

Thoughts & Prayers...

 
Old 04-10-2007, 09:11 PM   #9
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torigirl HB User
Re: Diagnosed Today and Scared

We can all wait in agony together LOL!!...let's make sure we post and keep in contact...peace ladies...and my thoughts, prayers and good wishes are with you...

Tori

 
Old 04-10-2007, 10:49 PM   #10
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RouxWoman HB User
Re: Diagnosed Today and Scared

Well it seems many of us are rowing in the same boat.

I had my COLO and the results came back negative. Nothing there after having an abnormal pap which showed HGSIL/CINll.

I have had not test for HPV but this doctor said with that result I more than likely have it! WHAT?

Now they are asking me to take LEEP on Friday just to make sure nothing is there.

My question (after going all over the internet for answers) is if the colo showed nothing then why do a LEEP? in other words what will they be doing a LEEP on?

I am reluctant because I am having surgery in a few weeks. I want 100% whe I have the surgery (hioe replacement) Also, I do not want to smell inthe operating room. Most of the women have reported bleeding/spotting for over two weeks and sometimes longer with a foul smell! This really bothers me, and I dont see why I had to have this LEEP now and not wait until after my surgery.

Makes me think they are not telling the entire story. Even when they werre doing the Colo the doctor said he could not see anything there even after putting on the vinegar solution. I just don't get it!

Good luck to everyone

 
Old 04-11-2007, 12:21 AM   #11
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DiamondLight HB User
Re: Diagnosed Today and Scared

RouxWoman: I wonder if they want to make sure there isn't anything going on out of easy sight/reach? I know my doctor didn't seem too alarmed, until after my cone biopsy treatment and results. It must not have seemed too bad until then, because he thought he might even get everything on the colposcopy/biopsy. I would call them and see what they say...hopefully, they'll be open and honest. I know some only tell you what they must...I hate that. Good luck to you too! (ETA: I don't want to worry you, I hope I'm not. I just would hate for something to be missed and if they think they are missing something, I'd have the leep.)

Last edited by DiamondLight; 04-11-2007 at 12:25 AM.

 
Old 04-11-2007, 06:26 AM   #12
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torigirl HB User
Re: Diagnosed Today and Scared

Rouxwoman...great news on the results! I'm thinking the same as DiamondLight. If the initial pap showed abnormal, maybe they just want to "make sure"... at least your doctor is being thorough. If you still don't feel comfortable with the procedure, then you can always get a 2nd opinion to ease your mind. Good luck and keep us up to date. I'll add you to my daily prayers and I'll be sending good vibes your way! Tori

 
Old 04-11-2007, 04:09 PM   #13
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JustMe29 HB User
Re: Diagnosed Today and Scared

Rouxwoman - I agree with Tori - it's best to be on the safe side...we have to trust our doctors, or who can we trust? I work in the health profession, and I've always said that a doctor is only as good as the information we give them...so lets all be sure to always give all info to our docs so they can diagnose and treat accordingly...hope you ladies had a good day today! It's Wednesday - nearing the weekend, thank goodness!

 
Old 04-16-2007, 09:11 PM   #14
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JustMe29 HB User
Re: Diagnosed Today and Scared

Torigirl - any results yet ?

I have my colpo & biopsy tomorrow (today) Tuesday - I'm up late worrying about it - not to mention the 60 mph winds in VA are keeping me up. I hope it doesn't hurt - I said my prayers tonight that I would make it through whatever comes to me. I will post on how it went...

 
Old 04-17-2007, 12:31 AM   #15
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DiamondLight HB User
Re: Diagnosed Today and Scared

JustMe29: I hope you're able to get some rest, I know it's not easy. My thoughts and prayers will be with you today.

I got my results back, "normal". So, after having CIN3 w/glandular involvement in 2001 (two leeps and a cone for treatment), I'm still doing fine. I was worried, because I didn't have the hysterectomy he said I needed and missed two years of paps. I hope you'll have good news too!!!

 
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