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National Cervical Cancer Coalition


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PostPosted: Wed May 13, 2009 2:52 pm 

Joined: Wed May 13, 2009 2:02 pm
Posts: 12
I went in some my annual check up about 2.5 weeks ago. The nurse called me with the results last Wednesday. It turns out my pap came back abnormal, and I tested positive for HPV. I wasn't even aware that they were testing me for HPV, but being 31 yrs old, I guess it's pretty normal. She went on to explain some things, and told me that I needed a colposcopy and possible a biopsy. Of course I was in a little shock, so it was hard for me to retain any of the information. My concern about the results is what brought me to this forum. (Google is my friend!) It really helped (and scared) me to read about the experiences of others. Anyway, I scheduled my colposcopy during this phone call with the nurse.

It's been a stressful week from getting that phone call until today...the day of the colposcopy. When I was taken into the exam room, the nurse explained the procedure again. It was then that I confirmed an actual HPV test was also done. From reading this forum, I understood that there were 100+ strains of HPV...low risk (GW) and high risk. She told me I had high risk.

The colposcopy itself wasn't terrible. After reading about others' experiences, I was expecting the worst. The part that hurt the most was the speculum, and the pressure from the Monsel's solution being applied. Fortunately, I didn't feel a thing during the biopsy. My PA said it might feel like a pinch, so I kept waiting for it, but I felt nothing. I believe 3 samples were taken, so I'll be awaiting those results. The cramping started right after the biopsy. And as someone that NEVER gets cramps, it was a little unbearable. That's when the tears came. It wasn't necessarily because of the cramps, but a combination of that and all the stress I've been feeling lately.

My PA gave me a pamphlet on the LEEP procedure, and explained it a little bit to me. I have a feeling this will be my next step, and I can't say that I'm looking forward to it, but she says it's not as bad as the colposcopy/biopsy. We'll see. It'll be stressful no matter what. I also got a copy of my pap/HPV results today...

Diagnosis: Epithelial Cell Abnormality. High-Grade Squamous Intraepithelial Lesion (HGSIL); Severe Dysplasia is present.

HPV Results: HPV, high risk: Positive.

I noticed that it also said this high risk HPV test detects 13 high risk types. Does this HPV test only test for high risk? If not, is there any way to find out what strain(s) I have? Or does it mean that I have those 13 strains? If I understood correctly, severe dysplasia is CIN III, right?

Sorry this post was soooo long!! But thanks for listening and for giving me an outlet to talk about what I've been going thru. I've only talked to a couple of friends about this, so it's nice to know I have a place to go.


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 Post subject:
PostPosted: Thu May 14, 2009 8:16 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi Shorty,

Thanks for posting and it's really great that you shared your experience. No doubt many readers will benefit from your comments that offer such good, personal insight into many of the procedures those on these boards have had, or will have soon. I appreciate you for posting!

Quote:
I noticed that it also said this high risk HPV test detects 13 high risk types. Does this HPV test only test for high risk? If not, is there any way to find out what strain(s) I have? Or does it mean that I have those 13 strains?


A "high risk" HPV test looks for any of those 13 types in a broad, generic sense, and does not isolate and determine exactly which ones a woman might have. So, getting a report that says something like "positive for one or more of the following..." followed by a list of many types is common. It doesn't mean you have all 13 types, and it's a pretty safe bet you don't have that many!

Quote:
If I understood correctly, severe dysplasia is CIN III, right?


Severe dysplasia detected on a Pap is often confirmed as CIN 2 or 3 on a subsequent colpo/biopsy.

Take care and please post as often as you can.

Best,
Fredo

_________________
ASHA Moderator


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 Post subject:
PostPosted: Thu May 14, 2009 11:34 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Hi Shorty,

In Marfh I was diagnosed with CIN III through a colposcopy and had a LEEP a few weeks later. The good news is that the procedure wasn't bad at all. In fact, I definitely had a harder time with the colposcopy. But, the recovery time is a lot longer, so be sure to take it easy if you indeed need to have a LEEP. I took three days off work even though I probably could have gone back to work on the third day. But, it's nice to reward yourself with a little R&R after going through something like this! I didn't feel completely back to normal for at least 2-3 weeks. And I didn't lift anything heavy or work out for two weeks.

The other good news is that the LEEP will usually destroy all of the bad cervical cells and also kick your immune system into attacking the HPV. So, the chances are good that once you get through the LEEP, you won't have to go through any of this again! That is the news I'm waiting to hear when I go back for my first follow up pap in August.

Good luck - keep us posted!


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 Post subject:
PostPosted: Mon May 18, 2009 12:53 pm 

Joined: Wed May 13, 2009 2:02 pm
Posts: 12
Fredo, thanks for answering my questions!

OFG, I appreciate you sharing your experience with me. I hope you get your good news in August! :)

So I just got a call from my PA about 30 min ago. The biopsy confirmed the results of the pap...high-grade/severe dysplasia. She consulted with some other doctors there, and they agreed that I should go ahead and have the LEEP procedure. I think she also said someone else from the office will be contacting my insurance company to make sure everything will be covered. Hopefully, there won't be any issues there. I might have insurance, but I have yet to meet my deductible, so it's still coming out of my pocket. After becoming recently unemployed, it's going to be tough. Anyway, I should be hearing back from the doctor's office this week to schedule the LEEP. Until then, I guess I will go back to stressing out and being emotionally drained.

I know several people recommended taking some Ibuprofen before the colposcopy, but would this be recommended before the LEEP too?


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 Post subject:
PostPosted: Mon May 18, 2009 1:45 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
The nice thing about the LEEP is that it is done under a general anesthetic so as soon as you get past the initial pinch of the injection, you shouldn't feel a thing. It does get a little uncomfortable having the speculum in for that long and the doctor needs to be able to get a good view so it is opened up wider than normal. Also, just be aware that with the injection of the general usually comes a wave of adrenaline that can make your body shake. But it only lasted somewhere around 30 seconds for me. I knew about it beforehand but I can imagine it would totally freak someone out who didn't know it was coming.

Also, I was sooooooo nervous about this procedure that I could hardly eat/sleep. So, the doctor prescribed a combo anti-anxiety medication and pain pill for me to take just before the procedure. It made everything such a breeze. And since I was so relaxed, it made the speculum issue easier and it made it easier on my doctor to perform the procedure as well.


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 Post subject:
PostPosted: Tue May 19, 2009 9:55 am 

Joined: Wed May 13, 2009 2:02 pm
Posts: 12
OFG,

Thanks for the warning about the adrenaline. I'd be one of the people freaking out about it! I definitely understand the nervousness. I've been feeling nauseous ever since I got the results yesterday.

So I called the Dr's office today to get the pathology results faxed to me. I just feel better knowing exactly what it says, even if I don't understand most of it. Anyway, just wanted to share...

Part A: CX BX
Part B: ECC BX

A: Cervix, Biopsy:
- High Grade Dysplasia, Moderate to Severe (CIN II-III), Involving Squamous Surface Epithelium.
- HPV Cytopathic Effect is observed in lesser Dysplasia.
- Acute and Chronic Cervicitis.
B: Endocervix, Biopsy:
- Fragments of Benign Endocervical Glands, Acute inflammatory debris and mucus.


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 Post subject:
PostPosted: Wed May 20, 2009 11:51 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
From what I can understand, those results seem pretty normal (well, normal for a CIN III diagnosis). What is really good is that your ECC came out clean. My ECC showed fragments like yours which just basically means that some fragments from the biopsies polluted the ECC a little. An ECC is worrisome when they find abnormal glandular cells up there, which they didn't on you or me and that is really good! I have heard that problems with the glandular cells are much more difficult to monitor and solve than problems with the normal cervical cells. So, let's both be thankful that we don't have to deal with that! Let me know when/if your LEEP gets scheduled.......hang in there!!!

Also, I just noticed an error in my last post. I meant to say that the LEEP is done under a local anesthetic, not a general (not usually anyway). Due to my level of nervousness, my doctor did offer to do the LEEP for me under a general, but 1. it would have to be done in a hospital and 2. my insurance probably wouldn't have covered that level of anesthetic. In the end, I was really glad that I toughed it out with a local since it turned out to be a relatively easy procedure.


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 Post subject:
PostPosted: Wed May 27, 2009 6:36 am 

Joined: Wed May 13, 2009 2:02 pm
Posts: 12
LEEP is scheduled for June 5. Hopefully, I won't worry myself sick over the next week and a half.


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 Post subject:
PostPosted: Wed May 27, 2009 10:37 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Well, as much as I would like to tell you to just relax and try not to think about it, I know how horribly impossible that is. I think I can say though that it won't be as bad as you're imagining it and you will get through it just fine. If I can do it, anyone can :) Please post after the LEEP and let us know how it went!


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 Post subject:
PostPosted: Fri Jun 05, 2009 2:16 pm 

Joined: Wed May 13, 2009 2:02 pm
Posts: 12
I had the LEEP this morning. The nurse asked if it would be okay if there was a PA student in the room with me. I didn't have a problem with it, and she definitely helped me feel more comfortable. She offered her hand, if I needed it. The nurse let me hear what kinda noise would be coming from the machine, and she explained what was going to be done.

It definitely wasn't as bad as the colposcopy/biopsy. The speculum was very uncomfortable again. The lidocaine/epinephrine injection wasn't horrible. Seeing the size of the needle kinda freaked me out, but it just felt like a little pressure. The adrenaline wasn't too bad either. My heart raced for about a 1-2 minutes, and I also felt pressure in my ears (similar to the feeling when flying). The doctor waited until everything calmed down before beginning the procedure. She was great about explaining everything step by step. When she was cutting away the tissue (3 total), the only thing I felt was a tiny bit of pressure...same thing with the cauterizing. Of course, that could have all been in my head. During the procedure, the doctor also mentioned seeing a cyst (nabothian?), which she removed. Is that anything I should be worried about? The nurse made it seem like it wasn't a big deal.

Overall, it was a good experience. Not pleasant, but it was tolerable. If I can help it, I'd rather not go through that again though! The one thing that I wasn't expecting were the size of the tissues. I shouldn't have looked, but I was curious. My PA (that usually does my annual paps) even came into the room after the procedure to make sure I was okay. I wasn't expecting that, so it was a nice surprise. Now I just have to wait to get the results back, and I will have a followup in 4 weeks.


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 Post subject:
PostPosted: Fri Jun 05, 2009 5:15 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Awesome! I'm glad it went as well as it could. It's always such a relief to get these things over with. Then comes the waiting for the results...........which causes more anxiety as well. I don't have much knowledge regarding cervical cycsts but if your doctor isn't worried, then there probably isn't much to be worried about. I wonder if it is something that they really wouldn't bother removing normally but since she was in there anyway, she thought it was best to go ahead and take it out.

I had three areas removed as well. I didn't look at them though and am glad - a few people have mentioned how big the pieces are. Yuck!

Well, be sure to take it easy. Although you might feel totally back to normal within a day or two, really try and take it easy. It is especially important not to lift heavy things and to try to limit exercising. I had discharge for the first week and then beeding for the second week, but everyone's experience is different. Feel free to ask any questions about your recovery and be sure to keep us posted on your results!


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 Post subject: Re:
PostPosted: Sun Jun 07, 2009 1:05 pm 

Joined: Wed Jul 23, 2008 12:13 pm
Posts: 15
shorty wrote:
I had the LEEP this morning. The nurse asked if it would be okay if there was a PA student in the room with me. I didn't have a problem with it, and she definitely helped me feel more comfortable.


Your experience sounds a lot better than mine -- when I had a LEEP, the local anesthetic injection was pretty painful. There was also a "beginning nurse" (very young looking) in the room, and as I lay on the table getting the anesthetic applied, she actually flinched. I was too nervous to say anything, but it made me pretty angry. I wanted to say, "You better control your face, I'm the uncomfortable one here!" :x

Anyway, congratulations on making it through. You'll feel better once the results come back, but most likely, they will have gotten everything. Mentally, I felt more "clean" after the LEEP, as if the procedure convinced my mind that all the abnormal cells were taken care of and my cervix was normal again. The emotional strain was pretty much alleviated.


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 Post subject:
PostPosted: Sun Jun 07, 2009 5:32 pm 

Joined: Wed May 13, 2009 2:02 pm
Posts: 12
am, thanks for sharing your experience with me. I'm sorry to hear that your injection was more painful. That was pretty unprofessional of the "beginning nurse" to flinch like that. The PA student in the room with me was good about controlling her facial expressions. Everytime I made a face, she or the nurse always made sure to ask if I was okay.

Just out of curiosity, how was your recovery? It's day 2 for me, and I still feel a little crappy. I've had no appetite since the LEEP. I've also been feeling a little nauseous, and I'm still crampy...and also feeling bloated. I've had no discharge and no bleeding so far, but I'm sure it's coming!


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 Post subject:
PostPosted: Wed Jul 01, 2009 11:28 pm 

Joined: Thu May 29, 2008 10:01 pm
Posts: 89
Shorty, how are you doing? Did you get the results back from your LEEP yet? Just checking in........


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PostPosted: Tue Jun 22, 2010 2:15 pm 

Joined: Wed May 13, 2009 2:02 pm
Posts: 12
I apologize for resurrecting such an old thread, but it's been just over a year since my LEEP. Btw, oldfashiongirl, sorry for never updating with the results.

Anyway, margins came back clear. I had my followup, and 2 paps (normal) since the LEEP. My most recent was last week. Results came back normal, but the Dr said it showed HPV...which wasn't the case with the 1st post-LEEP pap. She didn't seem TOO concerned, but she does want me to come in for colposcopy in a few weeks. Hopefully, this time, I won't be too stressed about it.


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