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  • Please help - confused and scared!

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    Old 06-17-2009, 09:30 AM   #1
    00Jen00
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    Please help - confused and scared!

    I had my first abnormal pap 6 months ago - LGSIL - and my gyno shrugged it off and said "don't worry." Had another abnormal pap, and then a colpo and biopsy 4 months later...still don't understand what's going on, and I'm crying and upset all the time Please please please, can anyone help me understand my results??

    My biopsy results - "chronic inflammation, no CIN" on the sample taken from the outside of my cervix, where the gyno visually noted faint mosaicism. The ECC was "mostly unremarkable, with a small amount of CIN1" I am HPV positive, although I couldn't get my gyno to tell me what strain(s) (I had to beg for her even to do the test).

    What does this mean? The gyno said maybe the ECC was contaminated with cells from the outside of the cervix...but she really isn't good at explaining. I am going to get a second Dr.s opinion, but what would you do/what have you done with CIN1? Do I have to have surgery? I can't find accurate statistics, and the doctor told me a bunch of conflicting information. I'm 23, btw.

     
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    Old 06-17-2009, 10:06 AM   #2
    LilyL21
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    Re: Please help - confused and scared!

    I'm sorry you don't like your doctor. That's by far the most distressing part of your post . . . as for your actual diagnosis, I don't think you have any reason to worry.

    CIN 1 (which is also known as mild dysplasia) is no cause for worry. CIN 1 is usually left untreated because it goes away on it's own for the vast majority of women. Especially in someone your age, most doctors would not even think of treating CIN 1. You should just have follow up exams every 3 months or so until the dysplasia goes away.

    As for your doctor, the HPV test they usually run tests for high risk (cancer causing) strains only. The result is simply positive of negative. So it's possible your doctor has no more idea of what strain you have than you do! She is right that the ECC could be contaminated from cells on the outside of the cervix, but I suspect she is also not concerned because, as I said above, she wouldn't treat you for CIN 1 anyway.

    Also, I suggest getting a copy of your medical records and reading them yourself. Then possibly find a new doctor to do your follow ups with.

    Good luck!

     
    Old 06-17-2009, 11:32 AM   #3
    00Jen00
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    Re: Please help - confused and scared!

    Lily, thanks soooo much for the reply. I've been confused because many info sites say CIN1 usually isn't treated, at least not right away...but my gyno launches into talking about doing a cone biopsy - doesn't that seem extreme? But I don't want to not do the best thing for my health just because I'm scared out of my wits to do something like that.

    I definitely need to see another doctor...but since everything I've read says CIN1 isn't an emergency, I'm taking a few weeks to try and find some calm...bursting into tears probably isn't the best introduction to a new gyno.

    What statistics do you have for it going away in a "vast majority"? My gyno cited that 1/3 would regress, 1/3 stay the same, and 1/3 get worse. Most stats that I've seen on the internet and in books indicate that about 60% will regress, while less than 5% will progress towards worse dysplasia or cancer. Don't know what to believe. I function alot better with absolutes I hate how confusing this is, and all the contradictory info out there.

     
    Old 06-17-2009, 11:41 AM   #4
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    Re: Please help - confused and scared!

    You're welcome!

    This is from memory, but I believe it's 70% of CIN 1 goes away within 2 years. Your stats definitely sound closer to anything I've heard than what your doctor said.

    Maybe your doctor prepared your for the cone biopsy because that's the *possible* treatment for CIN, but that's a small possibility.

    Only a small percentage of CIN 1 progresses, but that's why you would want to be followed closely. IF it does progress, you want it treated when it's CIN 2 or CIN 3, and not when it's cancer. And it usually takes years to go from CIN to cancer, so your doctor should be able to catch anything before it's cancer.

    This is definitely not an emergency, but I'd recommended asking your friends now if they know a good gyno! Getting an appointment can sometimes take a few weeks, especially with doctors who are liked by their patients! So I'd call them now, and ask to be seen in a few weeks.

    Last edited by LilyL21; 06-17-2009 at 12:27 PM.

     
    Old 06-17-2009, 01:01 PM   #5
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    Re: Please help - confused and scared!

    Hi,

    Lily has given you some great information. The only things I want to add are these.

    Because of your age, there is a very high chance that the CIN will regress. Women under 30 have a much higher chance of this than women over 30.

    Secondly, I suggest that when you go to the doctor's appointment that you go with a written list of questions. Leave room to write answers. This helps you and the doctor. My doctor likes to look at my list before we work on the questions. A lot of times she can cluster questions/answers.

    Have you gotten the Gardasil vaccine? I'm just curious.

     
    Old 06-18-2009, 07:10 AM   #6
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    Re: Please help - confused and scared!

    Yes, I've had two rounds of Gardasil, due for my third. But I guess if I picked this up before I got the shots, then it won't make any difference

    That's a good idea about the list, definitely going to do that.

    Why do you think my doc was being so aggressive pushing treatment when it sounds like CIN1 is likely to go away on its own? Is it because the ECC showed abnormal cells? It sounds like abnormal ECC is more risky, since the extent of the damage is impossible to see. But I don't think my gyno was convinced that the few abnormal cells were actually from the canal. Are different doctors just more inclined to treat than watch-and-wait?

    Is there anything I can do, if I get a second opinion and choose to just observe it without treatment for the next 6 months, to help my immune system fight off the HPV? I noticed that Lily mentioned some sort of mushroom in a different post...and I've read that Echinacea and Goldenseal are anti-viral herbs. And vitamins - would taking extra supplements of specific vitamins help? I'm already on a multi. I'm not looking for a magic bullet here, but if I can do something that I know won't harm me and might improve my chances...I'll give it a try.

    Thanks guys, hearing info from real people is really helping me feel a little less crummy about the situation

     
    Old 06-20-2009, 10:59 AM   #7
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    Re: Please help - confused and scared!

    So what type of follow up is your doctor recommending anyway?

    CIN 1 is not always very concerning in your age group, but the fact that it was found on ECC is. Your doctor should never assume that ECC result was caused by cells that migrated. Perhaps you should take another posters advice and asks friends and their mothers what doctor they go to and if they like their doctor. Get all of your pap and colpo results and get a second opinion. Perhaps even a 2nd colpo or at least a second ECC.

    It would not be unusual for your doctor to recommend a repeat colpo/ECC or even a repeat Pap/HPV with ECC in a year.

    On several occasions I have seen women your age or younger have similar results, yet have a CKC and the results were moderate or severe dysplasia.

     
    Old 06-21-2009, 07:32 AM   #8
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    Re: Please help - confused and scared!

    I already mentioned that my gyno was very unhelpful, although she started talking about doing a cone biopsy before explaining ANY of what was going on. But from what I've read, that's very rare for CIN1 and seems extreme. I think right now, my gyno is ready to pawn me off on someone else and won't answer my questions, just tells me to get a second opinion. I guess I'm annoying, but I'm sure I'm not her first clueless patient trying to understand it. I feel like she wants me to just give up and let them slice me up without understanding what's going on

    Since it's summer, I haven't been able to talk to the insurance office about going "out of service" despite numerous calls, and I've been calling to talk to my gyno for a recommendation every day and she's always "out" or "busy" and doesn't return my calls. Argh. So frustrating. Hopefully I'll get to see someone else soon.

     
    Old 06-21-2009, 08:29 AM   #9
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    Re: Please help - confused and scared!

    I already mentioned that my gyno was very unhelpful, although she started talking about doing a cone biopsy before explaining ANY of what was going on. But from what I've read, that's very rare for CIN1 and seems extreme. I think right now, my gyno is ready to pawn me off on someone else and won't answer my questions, just tells me to get a second opinion. I guess I'm annoying, but I'm sure I'm not her first clueless patient trying to understand it. I feel like she wants me to just give up and let them slice me up without understanding what's going on

    Since it's summer, I haven't been able to talk to the insurance office about going "out of service" despite numerous calls, and I've been calling to talk to my gyno for a recommendation every day and she's always "out" or "busy" and doesn't return my calls. Argh. So frustrating. Hopefully I'll get to see someone else soon.

     
    Old 06-21-2009, 10:29 AM   #10
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    Re: Please help - confused and scared!

    Quote:
    Originally Posted by 00Jen00 View Post
    I've been calling to talk to my gyno for a recommendation every day and she's always "out" or "busy" and doesn't return my calls. Argh. So frustrating. Hopefully I'll get to see someone else soon.
    Maybe you don't need a recommendation from her. On my insurance, I don't need a recommendation from my doctor; I can seek my own. You might check with your insurance provider.

    Good luck!

     
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