HPV what's my next step?

[Mebane_Girl]

Hello,

     I have edited this and am reposting it in hope that I get some replies. I don't know if it was just over looked at the time of posting or maybe it was too long! But I would really like some help, any information!!!

     I am fifty years old have been diagnosed with high risk HPV. Searching different stuff I am more confused than ever before. I was hoping to get a better understanding on my options on how I should proceed. My pap smear late last year came back abnormal. The doctor recommended a colposcopy and biopsy. High Risk HPV was the diagnoses and he recommended that I have a LEEP. So in early February I had this done? After I went to see him he described the situation like this, the scale they use is numbered (1-5) and five being cancer. He said I had a number three and that was considered moderate. He also said that the sample that was sent out had abnormal cells that went to the edge of where he had cut tip of the cervix off. So he wasn’t sure if he got it all, he recommended a hysterectomy. I was also still having a lot of bleeding and discomfort at the time and the doctor said that was normal? At the time I was in the process of moving to North Carolina and was very confused as to what to do. He said that either way I would need to find a doctor here in NC or return to Massachusetts to have the procedure done.
    
     After nearly two months of my LEEP, now in North Carolina I made an appointment with a new gynecologist doctor. I just stopped bleeding and having pain and discomfort she said the same thing, that I should have a hysterectomy. When I asked about other procedures, the laser, freezing or even doing a LEEP again, the doctor said, well you could take the "more conservative" approach?? But by having the hysterectomy you cannot get cervical cancer. Then I questioned her about all that I had read. About the percentage of HPV clearing on its own or the percentage that actual progress to cancer and all of the other options, short of a hysterectomy. She said for me to think about it and she would schedule another pap smear for early August which would be six months after the LEEP procedure. When I got home from the visit I was having discomfort again and went to the bathroom, I was bleeding again! It persisted almost a week and did not help me with the feelings about the appointment.
     So here I am it is early July and still I have not been reassured as to what to think or do! I had been having discomfort again after having some intense intercourse early this week. I am not that sure about the hysterectomy also, I question the extreme of this procedure at such an early point, without trying other options first? But again I do not want this to progress to cancer either! I do not know anyone here or even what is available for HPV resources in the Burlington, NC area. Please, any words that you could give would be of an immense help.

My original post was on July 8th and labeled "Next step HPV"

Thank you,

[Mebane_Girl]

WOW!!!!  Thank you girl!!!

I didn't even know that term, but I will be looking for a gynecologist/oncologist now that is for sure thank you again.

Still any locals out there with any information for this area of NC would be a breat help to me. Thanks to all for reading and I will keep posting updates!

Thanks Again All....

[Hollyv]

The pain and bleeding can be dependant on how much tissue he removed during the LEEP. However it is unusual to have pain (it should be more like cramping) or spotting for longer than a few weeks, after 1 week it should be reported to the physician. And there are physicians that do this procedure better than others just like all of medicine. I can't suggest who you would see in NC but I would suggest that you look for a large teaching hospital such as Duke, Chapel Hill or Wake Forrest and find a gynecologist/oncologist.Who should see a gyn-onc?? Anyone that is told that they may have to have surgery for what could possibly be gyn cancer. If your appt is with an Ob/Gyn in August you may want to cancel it if you can get another appt with a Gyn/Onc. You may need a referral depending on your insurance but most family physicians will do this. An Gyn/Onc is expert in this area and can assess you and answer all your questions.
Good Luck

[Mebane_Girl]

     Thanks for answering Hollyv, I do appreciate you answering me and I will definitely get my report once I go in for my pap and provide that information here.

     The thing I wanted to make clear was about the discomfort and bleeding. This had nothing to do with the doctor’s opinion for a hysterectomy. When I went to see the doctor after the LEEP he said I needed to have the hysterectomy. It was after that that I told him I was still bleeding and having discomfort, which was from the procedure. He said that was normal at the time. That is what I was question because originally when I had the procedure he said I should have no bleeding or discomfort? That’s what I was questioning as to having it after the LEEP.

    Also my bigger question to everyone has to do with local information or help groups. Living in the Burlington, NC area and being new to the area I don’t know of anyone to turn to here. I was hoping to learn if there is any support group in the area.

     Again, I thank you for your help and I hope to hear from others that have gone through this and what they have done. A big THANK YOU for everyone!!!!!!

[Hollyv]

You could search for a third opinion if you are not comfortable with the first two. Your second Dr. is correct, you should not have a repeat Pap for at least 6 months. Four months would be too soon. You are 50 and are either perimenopausal or may be entering menopause when changes are happening and this sometimes makes your Pap and your biopsies more difficult to assess. Your first Dr. it appears was not sure if he removed all the abnormal cells (the term that they would use would be the margins (edge) were clear). This would be the result you would want but it appears he was not sure. You also want to make sure there are no glandular cells involved as this may place you at higher risk. If this Pap (in August) is abnormal then you could have a repeat colpsocopy, where they could look again and also biopsy to see what level the abnormal cells are—this would be the conservative approach. You should get a copy of your actual records so you can see what the reports were; what the Pap result was, what the Dr.saw when he did the colposcopy and what the biopsy (pathology) report was. This may help you to make your decision. It sounds like your biopsy may have been CIN II which would be cervical intraepithiel neoplasia (CIN) and CIN levels are I, II and III and I’m guessing since he said moderate you are CIN II which is a moderate level of precancer. It sounds as if they are not really doing a great job of explaining to you or maybe you did not totally understand because it can be overwhelming. HPV can clear, but it clears more often in younger women. However, I am sure that they are recommending that you have a hysterectomy because you are having symptoms—pain and bleeding. The pain and bleeding are not normal. I understand that you may not want a hysterectomy but the Dr.’s are not only looking at your results but they are looking at you having symptoms. I’m sure they are looking at doing this due to your age and your symptoms. While a hysterectomy may sound extreme to you, you have symptoms and are at an age when this may be the best approach. Most women do well after they have a hysterectomy and return to having a normal life without pain or bleeding. Understanding your results and your options may help you to make an informed decision.