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Old 10-01-2010, 07:41 PM   #1
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pixiecat1984 HB User
Concerned and confused, and tired of waiting :(

I apologize in advance for the length of the post! I've been browsing the forums for several days now and was hoping some of the fantastic members could help me out as well

First off, some (relevant?) info...I'm almost 26, and have a 4 yr old son. I've been in a monogamous relationship with my fiance for almost two years. I've always been very cautious with my sexual health, although I've had a history of condoms breaking and birth control failing (my dear son is one case. ) I've had poly-cystic ovarian syndrome since I was 15, and have very painful, although short and light, periods, for which I've been on birth control pills every since. My family has a very pervasive history of cancers of all kinds, and is wrought with other illnesses and disorders as well.

I had one pap come back abnormal when I was about 18, but I lost my insurance and never followed up My next pap was when I was pregnant with my son, which came back normal. The one following his birth was also completely normal. My next pap was last year in July (again, no insurance until then) and everything (including the HPV and STD testing I requested) was all fine. That was several months after I met my now fiance.

In June of this year I went in for my annual exam, and almost two months later they called and told me my Pap had been abnormal (the Dr. said the results were ASC-US, but not excluding the possibility of HSIL) and I was HPV positive. She told me to schedule a Colposcopy and biopsy as soon as possible. It took me two months of calling my insurance and arguing back and forth with my doctor's office about insurance coverage to have it scheduled (the front office faculty and referral woman at my office are apparently very incompetent.) So I finally went in for the Colpo and biopsy last Thursday (8 days ago) and she took 5 different biopsy samples. She was very brief, vague, and didn't answer any of my questions with any clarity. I called on Monday to schedule my two-week follow up/results appointment, and was told they already had the results, and it was too bad I had to wait the full 2 weeks for a follow up. They refused to have the Dr tell me any results over the phone or answer any of my questions until then though. Given the problems I've had with that office and my doctor's seeming lack of interest in my issue, I've taken my Aunt's advice and switched to her gyno. The staff there was very friendly and helpful, and told me that the results over the phone were as follows- CIN 1-2 and a negative ECC. They couldn't explain or answer any other questions however, so I'm still stuck waiting until the end of next week to see the doctor for clarification.

I've done research into these terms and I think I understand them well, however, I'm still confused about some other things for which I've received no clear answers. (And of course, if anyone wants to further explain the biopsy results and what they might mean in terms of diagnosis/treatment, I'm all ears, or rather eyes )

First, after that first abnormal Pap at 18-19, I noticed a small, hard bump on my cervix, about the size of a large grain of sand. Every gyno I've seen since then has completely ignored my concerns about it, using my normal pap results as "proof" it is of no concern. However, it has since then increased in size to approximately the tip of my pinky, and is now softer. Even after this abnormal Pap, the Dr. discounted it, and said nothing of it during/after the colpo. Should I just take that this is something unrelated/unimportant?

If I was HPV negative last year (and in previous years) did I contract it since then, or could it just have been missed or dormant since an earlier time?

Were the types of HPV I was tested for JUST specifically the cancer-related strains, or could it have picked up one of the other strains? My fiance very well may have HPV also, but the variety that causes warts (it appears to be genital warts but he is getting conflicting info from doctors.) And if he does, and that is the strain I have, could the "abnormal" cells noted and CIN 1-2 results actually be HPV-related warts? Or is this a completely unrelated issue?

Also, right before I received the abnormal Pap results (but after the actual Pap) my period was several weeks late, I had two positive pregnancy tests, and all the early symptoms of pregnancy (actually very severely.) On the 3rd week after my missed period, the symptoms abated and I bled and cramped more severely than usual, passing a lot of large dark clots. I assumed I miscarried. When I asked my Dr. if that could have been at all related, all she had to say was "You're on birth control pills, I highly doubt you were ever pregnant at all." But "that it was in no way related to anything." On my next period I passed more stringy, old looking tissue than blood as well. Could this in fact be/have been related?

Sorry for all the questions, but I've been getting nowhere, and I'm very frustrated. Given my family history, I hate waiting when it comes to my health and I worry excessively. Thanks in advance for any help!

 
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Old 10-03-2010, 01:33 PM   #2
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pixiecat1984 HB User
Re: Concerned and confused, and tired of waiting :(

Anyone at all?

If I could get even partial answers to just a few of my questions, or even one, I'd feel so much better... Is there anyone whose had a similar situation, in whole or part? I'm just trying to stop stressing and I really have no one else to consult or even talk to at the moment.

 
Old 10-04-2010, 12:16 PM   #3
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Smile Re: Concerned and confused, and tired of waiting :(

You need to make one thing perfectly clear to your doctor: you are the paying customer and you deserve to be treated with respect. Even though you may not be a doctor, you have lived with your body longer than anyone else and your opinion that something is off needs to be respected. Doctors who cannot or will not talk to their patients are a menace. I had repeated pap tests (all perfectly fine) and knew something was wrong, but my doctor poo-pooed my opinion and I let her. When I went in to have an appendectomy, ovarian cancer was found. The oncologist said without treatment I didn't have 30 days to live. Thank God my appendix blew! Since then I don't mind telling the high-and-mighty doctors to talk to me in plain English and without looking down their noses at me. Your life is at stake - if you think something is wrong, make sure SOMEBODY listens to you!! Good luck and may God bless you (and your beautiful son who, like mine, was an unplanned miracle).

Quote:
Originally Posted by pixiecat1984 View Post
I apologize in advance for the length of the post! I've been browsing the forums for several days now and was hoping some of the fantastic members could help me out as well

First off, some (relevant?) info...I'm almost 26, and have a 4 yr old son. I've been in a monogamous relationship with my fiance for almost two years. I've always been very cautious with my sexual health, although I've had a history of condoms breaking and birth control failing (my dear son is one case. ) I've had poly-cystic ovarian syndrome since I was 15, and have very painful, although short and light, periods, for which I've been on birth control pills every since. My family has a very pervasive history of cancers of all kinds, and is wrought with other illnesses and disorders as well.

I had one pap come back abnormal when I was about 18, but I lost my insurance and never followed up My next pap was when I was pregnant with my son, which came back normal. The one following his birth was also completely normal. My next pap was last year in July (again, no insurance until then) and everything (including the HPV and STD testing I requested) was all fine. That was several months after I met my now fiance.

In June of this year I went in for my annual exam, and almost two months later they called and told me my Pap had been abnormal (the Dr. said the results were ASC-US, but not excluding the possibility of HSIL) and I was HPV positive. She told me to schedule a Colposcopy and biopsy as soon as possible. It took me two months of calling my insurance and arguing back and forth with my doctor's office about insurance coverage to have it scheduled (the front office faculty and referral woman at my office are apparently very incompetent.) So I finally went in for the Colpo and biopsy last Thursday (8 days ago) and she took 5 different biopsy samples. She was very brief, vague, and didn't answer any of my questions with any clarity. I called on Monday to schedule my two-week follow up/results appointment, and was told they already had the results, and it was too bad I had to wait the full 2 weeks for a follow up. They refused to have the Dr tell me any results over the phone or answer any of my questions until then though. Given the problems I've had with that office and my doctor's seeming lack of interest in my issue, I've taken my Aunt's advice and switched to her gyno. The staff there was very friendly and helpful, and told me that the results over the phone were as follows- CIN 1-2 and a negative ECC. They couldn't explain or answer any other questions however, so I'm still stuck waiting until the end of next week to see the doctor for clarification.

I've done research into these terms and I think I understand them well, however, I'm still confused about some other things for which I've received no clear answers. (And of course, if anyone wants to further explain the biopsy results and what they might mean in terms of diagnosis/treatment, I'm all ears, or rather eyes )

First, after that first abnormal Pap at 18-19, I noticed a small, hard bump on my cervix, about the size of a large grain of sand. Every gyno I've seen since then has completely ignored my concerns about it, using my normal pap results as "proof" it is of no concern. However, it has since then increased in size to approximately the tip of my pinky, and is now softer. Even after this abnormal Pap, the Dr. discounted it, and said nothing of it during/after the colpo. Should I just take that this is something unrelated/unimportant?

If I was HPV negative last year (and in previous years) did I contract it since then, or could it just have been missed or dormant since an earlier time?

Were the types of HPV I was tested for JUST specifically the cancer-related strains, or could it have picked up one of the other strains? My fiance very well may have HPV also, but the variety that causes warts (it appears to be genital warts but he is getting conflicting info from doctors.) And if he does, and that is the strain I have, could the "abnormal" cells noted and CIN 1-2 results actually be HPV-related warts? Or is this a completely unrelated issue?

Also, right before I received the abnormal Pap results (but after the actual Pap) my period was several weeks late, I had two positive pregnancy tests, and all the early symptoms of pregnancy (actually very severely.) On the 3rd week after my missed period, the symptoms abated and I bled and cramped more severely than usual, passing a lot of large dark clots. I assumed I miscarried. When I asked my Dr. if that could have been at all related, all she had to say was "You're on birth control pills, I highly doubt you were ever pregnant at all." But "that it was in no way related to anything." On my next period I passed more stringy, old looking tissue than blood as well. Could this in fact be/have been related?

Sorry for all the questions, but I've been getting nowhere, and I'm very frustrated. Given my family history, I hate waiting when it comes to my health and I worry excessively. Thanks in advance for any help!

 
Old 10-07-2010, 09:40 PM   #4
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Join Date: Oct 2010
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pixiecat1984 HB User
Angry Re: Concerned and confused, and tired of waiting :(

Thank you for your response PuddleBear, I agree completely. I only wish more doctors (or any of them for that matter!) felt the same way!

I had my appointment today with the new doctor to get my official test results, and I'm very disappointed to say that I still have tons of questions with vague, uninformative answers, or none at all! My appt was also supposed to be for a follow-up to my biopsies to see how I'm healing, but since I started my damn period two days ago, he couldn't do any type of exam. I didn't want to reschedule and to wait ever longer for the test results as well.

The only thing I found out for sure is that the results from the colpo/biopsy are CIN 1, borderlining 2. He didn't even bother to mention the ECC (which the nurse had previously told me was supposedly negative on my path report.) I'm so frustrated! Even though I went extremely prepared, as informed as possible, with a typed list of questions, he seemed so rushed and dismissive I got overwhelmed and tongue-tied and ended up mostly just sitting there nodding submissively. In his defense (since my aunt swears he's fantastic) he had been up all night previously delivering several babies and had two more patients currently in labor at the time of my appt... I plan on e-mailing him tomorrow through the office's patient website and seeing if I get any answers that way, perhaps in the next few days when he's more rested and attentive. I dunno, I'm just so tired of feeling like nothing I say is ever taken seriously!

He's recommending cryo for treatment. He told me he's often less aggressive and usually adopts a "wait and see" policy for low level CIN, with repeat follow-up paps and colpos (which he said I could do if so choose) but since I smoke (although I do plan on quitting!) and had so much abnormal tissue, he suggests I seriously consider the cryo, and in his opinion, the sooner the better.

He said that he was "Sure I was healing fine from the biopsies and could resume sex and tampon use, etc." even though he did no internal exam (and didn't offer to reschedule one) which still leaves me hesitant. Is that something that can be skipped, assuming I'm having no signs of infection? He said there was no way of telling or finding out which types of HPV I'm positive for, and it really didn't matter anyway. He said I have a 50% chance of this clearing on it's own, and 50% chance of it coming back at any point, regardless of treatment or any other factors. He had nothing to say about my recent abnormal periods, other than "It's normal for periods to change throughout a woman's life, and he doesn't think it has anything to do with this, or my possible recent miscarriage, if in fact it was one." He said the bump on my cervix is probably just a cyst, but he'd try to "keep it in mind and take a look" during one of future exams. He said I should honestly be more concerned with my fiance's possible genital warts than any of this, and I should never again be intimate with him without a condom (even though I've already had a year+ of exposure??) When I brought up my family's medical history and my otherwise generally poor health, asking only IF it had any bearing on my current situation, he was very quick (and perhaps I was projecting but also rather smug and condescending) to remind me that this is an STD, I am now and forever will be STD POSITIVE, and my family history, my own history, even my own current health, had nothing to do with it... And that was pretty much it.

I'm just so irritated!! I want to cry I've found out more just by browsing this board than from two different doctors and a score of nurses and assistants! But I'm still so confused Can anyone out there please, please, please give me more information on my situation? Any answers or opinions or suggestions on any part of it would be so greatly appreciated.

Last edited by pixiecat1984; 10-08-2010 at 03:23 AM. Reason: punctuation and additional info

 
Old 10-08-2010, 12:52 PM   #5
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Re: Concerned and confused, and tired of waiting :(

pickiecat1984

I will try to respond to your posts without getting my pressure up--which I am surprised yours is not through the roof!!!

In terms of you having two positive pregnancy tests and than an unusual period with heavy cramping and large clots--yes I believe that you did miscarry and to the doctor who said it was not possible because you have been taking the pill--well all I can say is my 14 year old daughter is alive and well and was conceived while I was taking the "birth control pill". That is why the package says 99.9 percent effective. It is that 1/10 percent who just can not follow the rules.
In terms of being rushed by the second doctor--well, the first thing I would do is speak with your aunt who recommended this wonderful health care provider. Inform her of your treatment or lack of treatment this doctor gave you. Request that maybe she may like to accompany you to your next appointment which you can certainly make to get the complete exam and not a shorten version to simply go over your test results. I think this doctor was not expecting to spent as much time with you, which is probably why he really only did a courtesy appointment. That is if you really want to return to this doctor--I personally would seek out yet another health care provider. Is there anyone else who could recommend a gyn to you.
I found mine by asking my primary care doctors nurse who she recommended. I have been seeing this doctor for 25 years now. Do you know any nurses who work at the hospital possibly in the maternity or emergency rooms? These nurses know who is good and who is not--most actually go to these doctors for there own care.

CIN1-I was diagnosed several years ago with CIN 1 and the treatment was pap smear every 4 months for the next year until I received a clean one. It took 4 abnormal paps before I received a clean pap. My doctor told me if the 5th pap was not clear than he would have to treat. (I think my body does not like being threatened because that 5th came back clear) I than had to have a 2 paps six months apart and than I went back to once a year.
With the fact that you got a positive HPV, than maybe you should think of getting the cyro. You could have gotten the HPV from anyone, however, if you know for a fact that your boyfriend may have genital warts, than he needs to be treated.
Do not let doctors treat you like you are second class--start to be aggressive if you are not getting answers to your questions.
Keep me posted as to how you are doing.
__________________
Brenda

 
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