New here - HPV positive (low and high risk) - Human Papillomavirus (HPV) Message Board

blahblah · 04-08-2008, 07:33 PM

Hi -

I'm new here and freaked out that I am HPV positive - not to mention high risk. I am 42, never had any kids and have had very few partners in my lifetime.

I've had normal paps throughout my entire life and I had a normal pap in January 2007, a normal pap in June 2007, and then an abnormal pap (ASCUS) - meaning abnormal squamous cells of unknown origin (if you talk to enough women just about everyone has had an abnormal pap at one time in their life). She told me to return in 6 months for another PAP - which I did, 2 weeks ago.

Now it has come back the same ASCUS, AND I am now HPV positive - both high and low risk. From what I understand lowrisk can cause things like warts on the cervix but the high risk can (if not caught early enough) cause cervical cancer. So I need the dreaded coloposcopy.
For a few various reasons - I am not thrilled with my gyno.

She never really acts like she knows who I am. Maybe because I never had a baby so she would see me more frequently, she forgets who people are. But I've been going to her for over 3 years now, we live in the same town and I've been through a few pretty serious/traumatic things while under her care.
When I first started seeing her I thought I would be having a baby - and was happy that she would agree to give me a c-section when that day came. Just before my honeymoon (I was almost 39) I had my first baseline mammogram which came back with a small nodule on it - so I did not try to get pregnant on my honeymoon until we knew what the nodule was. When I returned for biopsy at a breast specialist - it was gone.

Fast forward 7 months - and my marriage was over due to some very serious, emotional issues and I quickly learned he was an endstage alcoholic with the man I married. I needed someone to talk to and called her office but she would not prescribe anything to help me through the stage etc.
I continued with my annuals and she knew what I had been through - and then i decided I wanted breast augmentation, she totally suppported me 100%. I had that surgery and when I returned - it was for a checkup because for the first time in my life I had unprotected sex in a relationship that did not last long and I was terrified. She ran tests for everything under the sun and we repeated them 6 months later. (But we all know HPV can take months or years to develop - I actually did not know that then.)

Anyway 6 months ago I had the abnormal pap and I returned 2 weeks ago. She asked me WHY I was there - i said because YOU asked me to return, she looks at my chart and is like 'oh yeah'. She proceeds to tell me for like the 4th visit in a row that she cant' find my cervix, I am 42 years old and no gyno in the last 22 years has EVER said that to me! She always says 'oh dont do this to me - i cant find your cervix!) She proceeds to tell me all about her extremely expensive trip with her 2 kids and hubby to Maui - and then she looks at my chart and comments that we live in same town - which i have known for 3+ years since we met.

lastly i asked for my pap tests be faxed to me - it was then that I saw all the lab info had my name, address, and phone number wrong. All info that changed when i was divorced in 2005 - but the office never changed it over, they got paid from my medical insurance but never changed it when submitting tests. AND my last name (previous married name) was spelled wrong.
Soooo in this day and age when mixups of this nature happen all the time and are a bad thing, when personal gyno care is somewhat expected or a big plus when you have it and now that I have this issue - well its time for me to change gynos! I will find a new 'regular gyno' but I will also go see someone else - a gynocological oncologist - for the colposcopy because I want someone who does them all the time rather then someone who delivers babies and other routine stuff and colpos. Just feel it is best for my individual situation. This man is one of the best oncologists for gyno cancer in my area and thank heavens he is also in my plan. This way if i need additional procedures - once again i have someone doing it that does it all the time.

I am not too nervous about the colpo itself - more nervous about the results and the possible further tests or procedures. I can't believe they don't sedate women for this stuff - it isn't fair!

All the best to everyone on here.

Shshi · 04-08-2008, 07:53 PM

Hi,

I'm sorry you're having to deal with all of this. I know how very nerve wracking it can all be.

I was going to suggest seeing a new gyn, so I'm glad you're going to a gyn/oncologist for the colpo. Hopefully he or she will be more knowledgeable and better able to handle the situation for you.

The colpo isn't too bad. I've had four or five of them in the last three years. One little trick that my gyn has is to have me cough right at the moment when he takes the biopsy. I've never, ever felt a thing! It works every time. If you decide to do this though, be sure to tell your doctor what you are doing so he or she can be prepared. Also, take a couple of ibuprofen before your appointment.

The treatment for dysplasia isn't too bad either. I had laser surgery and was sedated for it. I had no pain afterward at all and no bleeding either.

Good luck with everything. Let us know what you find out.

Hugs,

Lisa

blahblah · 04-08-2008, 10:12 PM

[QUOTE=Shashi;3522972]Hi,

I was going to suggest seeing a new gyn, so I'm glad you're going to a gyn/oncologist for the colpo. Hopefully he or she will be more knowledgeable and better able to handle the situation for you.

Thanks - sorry I should go revise my post as it is confusing. I will switch 'regular' gynos for sure - but the man doing my colpo is not a 'regular gyno' - he only treats gynocological related cancer - he is an oncologist = a cancer doctor. I want someone who does these ALL THE TIME - and I know he does. That is why I said seeing him might be 'overkill' because regular gynos do them too - but I just feel better off knowing that he does this all the time, knows what to look for, what should be biopsied etc. Given my age and the sudden onset of the positive high and low risk HPV - i just want to go right to someone who specializes in this kind of thing and luckily he is one of the best in my area and in my insurance plan.

>The colpo isn't too bad. I've had four or five of them in the last three years. One little trick that my gyn has is to have me cough right at the moment when he takes the biopsy. I've never, ever felt a thing! It works every time. <

I've spoken to a number of people, (friends included) who say it is nothing, amazing how many people have had one! I appreciate your reassurance and the extra vote of confidence!! I think they are given too often sometimes as well - I had my mind made up that I would not have one if I was HPV negative again and would wait another 6 months since the incidence of cervical cancer in HPV negative women with a normal pap is SO SO rare, but then it came back positive so I know I must have it done. I do wonder however, if you didn't cough, if you really would feel something? I mean - since you've coughed every time, you don't really know if it works or not right? LOL - goofing with you.

I have read a few people mention they felt a pinch but most say they feel nothing - I don't think there are many nerve endings on the cervix. That said I always feel a weird feeling there when I get a pap so I'm sure I will feel a biopsy! I already know I will ask him if he will apply a local first!

>The treatment for dysplasia isn't too bad either. I had laser surgery and was sedated for it. I had no pain afterward at all and no bleeding either.

What were your test results that required you to have the laser surgery? Were you diagnosed at a certain stage? And what exactly is the term for the laser? I've read about the cryosurgery (freezing of cells) and the loop but not the laser.

Mind me asking how old you were when you had it done and if you have kids? They say having children actually can increase the risk of cervical cancer.
I've never had any and dont plan to but the minimal risk of cervical cancer never would have prevented me from having them if I had decided to have kids.

Thanks very much Lisa - I really appreciate your response!

Shshi · 04-09-2008, 07:39 AM

Hi,

When I was first diagnosed in 2005 with dysplasia at the age of 42, it was moderate and severe (VAIN II/III, since I had a hysterectomy and no longer have a cervix.) My doctor took a wait and see attitude (which I later realized wasn't the usual or recommended course with VAIN III.)

I had a normal Pap in June of 2006, and a follow-up colpo didn't show anything. However, in February 2007 I was diagnosed with carcinoma in situ (cancer which has not yet spread.) I guess the Pap in June of 2006 must have missed something.

I saw a gyn/oncologist and had laser vaporization surgery (the full name of the surgery) in May of 2007. (I couldn't have a LEEP or cone since I don't have a cervix.) So far, all of my follow-up Paps have been normal, but I'm still being monitored for another year.

Oh, and I do have three grown children.

Hugs,

Lisa

blahblah · 04-09-2008, 08:47 AM

Hi Lisa and thanks very much for explaining to me your history and experience! It is incredibly helpful - and you are helping to save others by posting your story.

I have a silly question - how do they do a pap if you do not have a cervix? Does a hysterectomy remove the uterus, ovaries and cervix?

I've already thought about that surgery if it ever came to a point where I needed it - - and wondered if having a hysterectomy can prevent any of these cancers? (Meaning ovarian, uterine and cervical).

Thanks again!