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Old 10-09-2012, 07:24 AM   #1
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When is enough enough?

Back on the boards again and you can guess why. Pap smear came back with AGUS so off to get colpo/ECC again.

I've been stewing over it since I got the news yesterday and am trying to figure out when enough is enough. Some history:

Jan '09 - CIN III / HPV+
Feb '09 - Colpo/ECC results : AIS
Mar '09 - LEEP - AIS, clear margins

changed Drs. Say a gyn/onc who recommended a hyst and saw a new ob/gyn who wanted to treat conservatively since I had a series of paps that were clear (with HPV test being negative).

April '11 - AGUS / HPV+
April '11 - Colpo/ECC : Nothing found
May '11 - Endometrial biopsy : nothing found

Had paps like clockwork every 3 months. The first one after the April one showed HPV+ and has remained that way.

Oct '12 - AGUS

I am going over in my mind when conservation of my sanity over rules the conservation of body parts. I'm 37, do not have or want children. I am thinking it was a mistake on my part to walk away from the idea of the hyst in '09, but this is getting terribly stressful. Every time a pap comes back, it turns out to be "what now?".

Has anyone had to ever make this decision? When does it to turn enough is enough as far as the cycle? How long did you let it go before you put your foot down and trusted yourself instead of the Drs in taking your own treatment into your hands?

 
Old 10-10-2012, 08:39 AM   #2
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Re: When is enough enough?

Oh I would be done. I mean something is up why is it over and over again...this is what I worry about and not only that he told me I could wait a year to do another pap that seems nuts...I told him 6 months...I am done with having kids and same age as you. If I get another AGC I will prob push for taking it all out. Keep us posted!

Karrie

 
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Old 10-10-2012, 05:28 PM   #3
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Re: When is enough enough?

Colpo and ECC done.

Cervical polyp and surrounding area removed and sent for biopsy.

The cytology on the pap report read "atypical endo-cervical, favor neoplasia"

I think when I get the biopsy reports back, it won't matter either way for me. I'm taking all my information and history and going to the gyn/onc I went to in '09. While my Dr is a wonderful lady she doesn't seem that tuned into my "history" and is treating each new finding as a stand alone incident. That disturbs me, greatly.

I think I need a new set of eyes from the medical profession to look at my records overall.

 
Old 10-10-2012, 05:40 PM   #4
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Re: When is enough enough?

oh ya for sure... that would irritate me too. I sort of feel like this guy isn't taking things very seriously either.. I still have heard nothing either and I emailed him this morning.

It sounds like your def heading down the road of no choice but to remove everything. I hope you will be at peace with that and if/when they do things are contained. I think these types of things all depend on the doc and what they believe which is unfortunate.

 
Old 10-11-2012, 05:30 AM   #5
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Re: When is enough enough?

Woke up this morning with such severe cramps it is ridiculous. I know it is that time of the month and the cramps have been getting worse over the last year, but this is the first time I feel like I can't move and I feel like crying.

 
Old 10-11-2012, 07:15 AM   #6
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Re: When is enough enough?

Oh no sorry to hear that....I hope you find sonera relief and it doesn't last too long!

 
Old 10-24-2012, 02:42 PM   #7
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Re: When is enough enough?

And survey says (wait for it)....

After a pap of AGC-FN ....

ECC: inconclusive for glandular dysplasia, microglandular hyperplasia

biopsy: inconclusive for glandular dyplasia, low grade squamous (mild dysplasia / CIN with koilocytic atypia)

Pathologist recommendation : re-biopsy of endocervical mucosa recommended to exclude recurrent lesion

Would you like to know what I ended up with? Recommendation to take my folic acid (which I've been doing religiously) and a "see you in six months"...

I am so livid at my Dr right now I can't stand it. I looked up my pathology results from the ECC and biopsy last year and it says the SAME thing "inconclusive for glandular dysplasia". When I asked about it, nothing was said except "its only minor, we'll see you in 6 months". I also asked about what the results mean since I know I am still HPV+ high-risk (my body isn't clearing it) and they said the SAME thing.

I am waiting for a call back from a gyn/onc. When I get the date for the appt, I'm going to sign the release form to send all my records to that office.

I am more upset at the lackadaisical attitude of the office I switches to AFTER I was treated for AIS. I'm at wits end.

 
Old 10-31-2012, 02:56 PM   #8
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Re: When is enough enough?

I think a change is a good plan....sounds very frustrating and something has to be going on!

 
Old 10-31-2012, 03:24 PM   #9
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Re: When is enough enough?

Say gyn/onc today.

CKC (cold-knife cone) biopsy is scheduled for the 29th. Since its the holidays getting on the calendar is tough! It's a ckc + D&C to try and determine if there is any type of invasiveness going on.

It will determine what type of hyst he performs. Since this all started with AIS in '09, that is where it will eventually end up.

 
Old 11-15-2012, 11:18 AM   #10
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Re: When is enough enough?

Hi lovebug,

I just wanted to let you know that I also had a AGC-Favor Neoplasia pap back last December. My colposcopy/biopsy indicated I had Microglandular Hyperplasia and LGSIL. ECC was totally negative. But, because of the "favor neoplasia" qualifier, they told me I had to have a cold-knife cone biopsy, which I did in June. Turns out, everything was totally negative. I have read that Microglandular Hyperplasia can cause confusion with AIS and Adenocarcinoma on pap smears, and although my GYN-ONC believes I had AIS that either spontaneously resolved or was taken off with the biopsy, I'm not totally sold. Are you on birth control pills?

Anyway, the other thing I wanted to tell you was that I have also heard that people who have had cone biopsies can have scar tissue that can be confused with AGUS pap smears, so maybe that's a question to ask the doctor.

This may all be moot if you do not have nor want children (I'm only 29 and definitely want kids), but I would personally want all the information before the doctors removed organs that may or may not truly be problematic.

Good luck!

 
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Old 11-15-2012, 12:29 PM   #11
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Re: When is enough enough?

Sunflower - THANK YOU!!!! It is good to hear about the other end of the spectrum that everything is was negative! When I was diagnosed with AIS in '09 two different pathologists looked at the tissue and had the same conclusion.

I am hoping mine ends up coming back totally negative for anything, but the gyn/onc is really concerned because in his eyes I should have had the cone last year. I had a LEEP in '09 and the Drs never said to me that it could cause different path reports. What really frustrates me is that my gyn called on the morning of my gyn/onc appt and wanted to set up time to do a LEEP because she got the chance to talk to the pathologists and now was "concerned" because of how my results have been. Once again, two different pathologists reviewed the slides from the ECC/biopsy.

More than a bit livid.

I was thinking about not going with the hyst a few years ago when it was first recommended, but... I already have been diagnosed with fibroids that I was told once I stop taking bc will grow. To bad our lady bits cant be traded in for newer models!

 
Old 03-11-2013, 05:14 PM   #12
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Re: When is enough enough?

Quote:
Originally Posted by luvbug412 View Post
Back on the boards again and you can guess why. Pap smear came back with AGUS so off to get colpo/ECC again.

I've been stewing over it since I got the news yesterday and am trying to figure out when enough is enough. Some history:

Jan '09 - CIN III / HPV+
Feb '09 - Colpo/ECC results : AIS
Mar '09 - LEEP - AIS, clear margins

changed Drs. Say a gyn/onc who recommended a hyst and saw a new ob/gyn who wanted to treat conservatively since I had a series of paps that were clear (with HPV test being negative).

April '11 - AGUS / HPV+
April '11 - Colpo/ECC : Nothing found
May '11 - Endometrial biopsy : nothing found

Had paps like clockwork every 3 months. The first one after the April one showed HPV+ and has remained that way.

Oct '12 - AGUS

I am going over in my mind when conservation of my sanity over rules the conservation of body parts. I'm 37, do not have or want children. I am thinking it was a mistake on my part to walk away from the idea of the hyst in '09, but this is getting terribly stressful. Every time a pap comes back, it turns out to be "what now?".

Has anyone had to ever make this decision? When does it to turn enough is enough as far as the cycle? How long did you let it go before you put your foot down and trusted yourself instead of the Drs in taking your own treatment into your hands?
Me too!... awful isnt it.. hugs to you.... Do not have the ability to go private, have to rely on the NHS over here. I really want the lot out now. Had enough, but have to fight now to get this to happen. It took my friend 5 years of fighting to get a hysterectomy due to all of this. I have had too burning off sessions and am still grade III. I want it out now. Good luck to you.x

 
Old 03-11-2013, 05:44 PM   #13
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Re: When is enough enough?

Sorry you ladies are going through all this! I bet it's hard to persevere but for those of you with early stage dysplasia, I've read that it's very treatable and if it progresses into cancer, it usually takes about ten years.

Of course, the thought of cancer is scary but our female parts have functions beyond reproduction and are essential to many aspects of health our entire lives. My gynecologist should have been conservative and removed an ovarian cyst leaving all my organs intact. Instead he removed everything even though the cyst was benign. My life's been in a tailspin ever since.

When the uterus is removed, pelvic integrity is compromised. So I no longer have a waist. My rib cage has fallen causing a big, flabby belly and flat butt look along with back, hip, and rib cage pain. My "nether regions" are dead. Hormonal fallout has been akin to menopause x 100. I don't even look the same because I aged 15 years in a matter of months.

Just wanted to tell you the consequences of my situation of overtreatment. Hope you all can get the dysplasia under control!

 
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