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Very upset with my Gynecologist and his staff

By September 1, 2009 - 12:52pm
 
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My husband and I have never had previous sexual encounters and we've been married 20 years.
In June 30, 2009 I had my annual Pap and HPV test (first time for this), 2 weeks later a nurse called me on the phone and said your Pap was normal but you have an STD called HPV. Of course I explained this could not be possible and wanted a re-test. The nurse went on to say it was probably one of your husbands prior relationships. Which she had NO business saying, because my husband and I have always been there soley for each other, and there were no priors or in betweens. She really ticked the H E ** out of us. Both my husband and I went to the Gynecologist and explained our marital background and the no previous partner history, prior or during our marriage. On July 23 I was re-tested and I came out HPV negative. When I asked my Dr. if it could have been a false positive he said, "No, you had the virus but probably passed it." I was floored at his answer. He made me feel worse. I wanted to feel good knowing that it was negative instead he added to to my angst. I asked him don't labs make mistakes, he said it's very unlikely. I tried to get a third HPV test from another Dr. and she refused. Only adding to my distress. I am being forced to wait 6 months!. I told the second Dr. I have not seen any evidence that a person can have HPV and then 23 days later not have it. She said I will not test you now because of some OBGYN guidelines for testing. But that's not fair to me. What a horrible thing to put a person through, when I need to put the issue to rest. It's really affected my well being.

Is there anything else I can do or anyone that will do a third HPV test to get a difinitive ruling?

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EmpowHER Guest
Anonymous

Milda, I know exactly how you feel. I just dealt with this issue today with my daughter. I know most physicians do not believe a 22 year old would save herself for marriage, but my daughter did. She was married in September, and three weeks later went to have pap smear. Unknowingly, she was tested for HPV and all other kinds of venereal diseases, without consent, and ran up a huge bill at the office. No insurance card yet, so had to pay up front. Received a call a few days later that she had normal pap smear, but HPV high risk positive. She was totally floored. She says there is no way she got this in three weeks, especially having used condoms also. We met with the FNP, who acted the same way, no big deal, you will prob test negative next time. We were furious. They are now testing the same fluid again, which is going to produce the same results, because it could be cross contaminated with another specimen. I have worked in a pathology department for 20 years, and know there are false positives and false negatives in all types of diagnoses. It's just so sad how they make a person feel. I feel the HPV test is a gray area, that even the medical community cannot explain results. I think they dont know for sure all the ways it can be contracted. I have researched this to death in the last week, and its unreal what you find. There is a 6% false positive result in HPV DNA testing. I think that's pretty high statistics. A virgin does not want to hear she has HPV when she knows in her heart that is no way. And they brush it off as if its nothing to be concerned with. When it then shows up negative, they brush it off as you got rid of the cells. You tell me how the cells disappear after like you said twenty three days. That is just the way to explain the false positives, I think. How do they know ? I also read somewhere that when performing a HPV DNA, if a specimen is processed that has very high levels of positive HPV, the next following specimens could also test positive due to the chemiluminescent emission (light without heat) the first specimen puts off. I am not sure how all that relates, but seems possible to me. The FNP was incorrect about the guidelines for when a person should have HPV testing also. She said 26 and under. I argued with her that guidelines were if you were over 30, but she disagreed. I looked online, and I was right. I also asked her if the second one came back negative, are they going to amend the first report, and she said probably not, they would just issue a second report. I said Oh No, they wont, they have to amend the first because it is in her permanent record and it is incorrect. That's because it is being tested off the same fluid. If it was a different fluid, they would not amend the first, of course. Bad thing for my daughter is feeling that she has to try to explain to an office how there is no way possible, after being so proud of saving herself for marriage. I asked if there had been any activity at all, and she said no way, none at all, because she felt any type of activity would mean you were not pure. I believe her 100%, because I KNOW my daughter. She would not mind in the least telling me if there had been any activity, because we have that kind or relationship. I just feel so sorry for her, and for you, for having to go through this. It's horrible what it can cause. I think it is unnecessary to even do the HPV test. Why know you have it, if it is going to go away anyway. Continue giving pap smear screenings, and if they are positive, then give the HPV test to see what strains they are. Just my opinion.

October 15, 2010 - 10:31pm
(reply to Anonymous)

Testing for HPV helps prevent cancer, and not just cervical cancer. It is an important screening tool. That's why they test. If they didn't test and your daughter had a cancer that might have been caught, you would be far more upset than you are right now. The HPV test is an important screening tool. HPV does not "just go away anyway." Some people clear it, some do not. Some develop throat cancers and other disease.

I know you are upset, and they definitely should have discussed what testing they were doing, but a screening test that could help save your daughter's life is an important one to have. You can be a virgin with HPV. It's so nearly ubiquitous that it is not something to feel stigmatized about. I'm just hopeful she stays healthy.

Thank you for sharing your feelings.

October 16, 2010 - 6:49am
EmpowHER Guest
Anonymous (reply to Cary Cook BSN RN)

Funny thing was, daughter immediately had another Pap smear and HPV test run immediately at second physician's office, and both were negative. After results were given to first office, the physician refunded all charges. I feel there was either mislabeling of specimen, or contamination of specimen. Just thankful she elected a second opinion.

February 16, 2013 - 10:07pm
(reply to Cary Cook BSN RN)

I may be naive, but how do 2 virgins acquire HPV. Opperating under the thought that the 2 were virgins and they were only together sexually with each other?

October 18, 2010 - 7:54am
EmpowHER Guest
Anonymous

Katy, I feel so badly for what happened to you. I feel your frustration and pain. I don't understand how people are so quick to assume that tests are full proof and heaven forbid that there is the slightest possibility that a test can go wrong. Well, no one believes you the patient. Doctors look at you like your making to much of a thing with HPV and they try to rationalize it as that it's such a commong thing that it's no BIG deal. I agree with you completely. I think it's a huge deal, when you are told you've got an STD, and I think it's such an insult when these Doctors treat you as a series of test numbers and not as a human being. I can understand your feelings of depression, because I too have battled it and now struggle with doubts. But I hold on to my beliefs and vows and know that an unfortunate error was made by my doctor. To bad Doctors don't know how to say they made a mistake so we are not left with so many unanswered questions. Best of luck to you...God Bless you.

September 13, 2009 - 3:32pm

I understand your response to the health care providers totally. I was in a similar scenerio. I had cryosurgery for abnormal cells and was only told this happened because I had sex. I had been married 20 years at the time. I was confused. Sex with multiple partners was never mentioned. Years later I found out about HPV. I had never had sex with anyone except my husband. This is almost unheard of today as sex is taken so lightly. I do not take sex lightly. My husband and I had been together since I was 15 and he was 16. So telling me I got this from having sex (and I knew I had never cheated) meant my husband had been unfaithful. The health care providers that I was in contact with were cold and unfeeling. They took my options away from me 20 years ago. I just found out recently that I probably had HPV. No explanations as the doctor has her hand on the door on the way out to go onto the next patient. Double bookings keep them very busy. So...I have been married for forty years now and am very depressed. This is due to my husband and my "health care" providers. I feel they took my life away from me. I'm referring to doctors and my husband. Today very few understand what it means to devote your life to a marriage because divorce is too easy today. This gneration doesn't get it.

September 12, 2009 - 8:17am
EmpowHER Guest
Anonymous

I can empathize with your situation. Errors in tests and results reporting happen often so questioning your physician in such a case is smart. When it comes to issues like these, I think doctors get hardened to denials because everybody says they didn't do anything untoward (its kind of like cops getting hardened to people saying they are innocent). It's not right but its what happens. Bravo for standing up for you and your husband.

September 2, 2009 - 4:14pm
(reply to Anonymous)

Thank you, thank you, thank you! I so appreciate these very supportive words.
I really have been taken aback with the diagnosis I was given and really did feel hurt by the outright sterile manner I received. I had been with this Dr. for years, but after this, no more. I am changing ASAP. Thanks again for your support. I really appreciate it.

September 2, 2009 - 6:04pm

I am sorry that you are feeling so frustrated and wanting more answers.

To answer your last question first: your OB/GYN is right that there are testing guidelines, and I am not sure what help a third HPV test would provide? If your 2nd test was negative, you can assume your third test would be as well. HPV works in this way: your body suppresses the virus and is no longer "found" on a test.

There are also false-positives and false-negatives in tests, so you are also correct. I've provided some more information below:

Facts about HPV Test:
- With any test, you are right: there are going to be false-positives and false-negatives. False-positives when detecting the actual strains of virus (HPV) are rare (compared to the HPV test falsely detecting abnormal cells in the cervix -that are actually normal, as this type of false-positive is more common)
- You can certainly be tested positive for HPV during one test, then receive a negative result at your next test. The "low-risk" strains of HPV actually do go away on their own and/or becomes inactive (and the virus in your body may have been on its way out for a while, which is why the 23 days later can make sense).

Facts about HPV:
- HPV transmission can happen without sexual intercourse, and occurs with any kind of skin-to-skin sexual contact with someone who has HPV. According to the National Cancer Institute, "nonsexual transmission of HPVs is rare".
- It is usually not possible to know when a person got HPV or who gave it to them. HPV may be found right away or not until many years later.

What do you think of this additional information?

May I ask you a few more questions about your emotional response to your results and the outrage toward the health care providers?
1. If you are happily married to this man for 20 years, does it really matter what he did or didn't do before you were married? Why is this affecting your well-being, if you were re-tested and negative for HPV? The majority (80%) of all sexually active individuals have HPV, and I'm not understanding how it has been taken to this level of word usage: "horrible thing to do to a person" and "affecting my well-being" and "need to put issue to rest". When reading these word choices and underlying emotion, compared to your actual test results, I am not seeing the connection.
2. If your test is one of the rare false-positives, I hope you are not taking out your frustrations (and fear) on your health care providers and lab technicians. I did not see that they did anything "wrong" or "offensive" but provide you with information and results, and sounds like you put the emotion into through your assumption that they suggested you or your husband had other sexual encounters; they were providing you with facts, and then you filled in the blanks on your own.

I hope to hear back from you, and am happy to hear that you received great test results and hope you continue having a happy marriage for the next 20 years!

September 1, 2009 - 2:39pm
(reply to Alison Beaver)

Thanks for your response. I see that by your opening statement their is an assumption of having HPV, but how is that possible when the circumstances don't add up to the diagnosis? This has been the nagging question. I have done lots of research on this since my OBGYN's office gave me the first test results. I've contacted the CDC and they gave me great information, but their were gaps and I still had questions. And I hoped to hear from someone that would understand my POV.

When I had the second test done my Doctor still operated under the assumption that I had HPV, and never said, your first test could have been a false positive. To comment on your opening statement, a third test for me, would re-assure me that the first test was incorrect. Especially when my Doctor was insensitive after I got a second test of negative and then getting the remark from my Doctor that I probably had the virus. My doctor explained that I could only get it thru skin to skin sexual contact but even after knowing my husband and I for many many years he still made the comment that I still had the virus. That's why I'm so ticked off. I'm also ticked off that his staff had such poor PR and that they would actually make assumptions as to why I have HPV rather than allowing for the possibility that the test could have been wrong, which is why I got the second test to begin with. But even after getting the second test I was still not re-assured, because there are small percentages of people that acquire HPV without sexual contact.

And yes I do find it rather distressing, because knowing my life and sexual history as well as my husbands, the findings of a positive HPV test is distressing. I don't know anyone that takes the news of having an STD likely. So the one question that comes to mind is either there is some other way that HPV is transmitted or they need to stop calling it definitavely an STD. That's why I wanted the third test. I kept getting the attitude that I had the Virus, thus implying that I or my husband were unfaithful. Or that we had prior relationships. What I was saying was being ignored by my provider and I don't take that very likely. And I don't know anyone in their right mind that would not be hopping mad at this attitude and treatment.

My feelings are my own, but if the shoe were on the other foot, I'm certain anyone would want answers.
I don't internalize what's not actually there and both my husband and I were both floored by my Doctor and his staff . I thank you for your opinion, but I don't appreciate the statment :they were providing you with facts, and then you filled in the blanks on your own, I was not treated in an appropriate way, and I would appreciate not having my concern being taken so lightly.

September 2, 2009 - 8:28am
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