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Still abnormal PAP Still HPV Positive (2019) - updated 2020
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06-06-2019, 10:31 AM
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HysterSister
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Posts: 528
Hysterectomy: June 3rd, 2013
Ovaries: Kept 1 or both
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Re: Still abnormal PAP Still HPV Positive
Jenn, it's generally just not possible to figure out when you got hpv or how long you've had it. After you are first exposed, your immune system will usually clear the virus within a year or two, but it may re-activate periodically from time to time. That's why so many people have no idea they have hpv - they got it but then cleared it before they ever had an hpv test, and they often go their whole lives unaware that they have it. My first hpv test came after I had been married and monogamous for over twenty years (and we have definitely both been faithful); it could be that I had it when we met, or maybe he did, or based on statistics, the most likely answer is that we both did. It doesn't really matter now.
Long term partners generally share the same strains of hpv, and once you have it, you'll always have it, so you can't be reinfected or ping pong it back and forth. For that reason, the CDC and other health organizations have not recommended that long term partners need to use condoms. That said, you also deserve to make the choices that make you feel most comfortable, and if condom use would help you to feel better then it's a fair request to make.
After my own hysterectomy I didn't feel the need to start using condoms, and so far (six years) my hpv tests have continued to be negative and paps normal. I definitely hear you on feeling vulnerable, though. Such a big surgery is a lot to process emotionally and it took awhile to feel safe in my body again. Some people I know have chosen instead of condoms to use a lube that contains carrageenan, which is supposed to inhibit hpv. One of the most common ones on the market is called Divine 9. I tried it and it was fine but I liked my previous (non-carrageenan) brand better so I eventually went back to that.
Best wishes that you find a solution you can feel peaceful with.
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06-06-2019, 01:19 PM
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HysterSister
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Posts: 15
Hysterectomy: May 15th, 2019
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Still abnormal PAP Still HPV Positive (2019) - updated 2020
I can't thank you enough for the positive feedback and support. I'm going on 4th week of recovery and still gathering my thoughts. I don't see the Dr until the 26th, I will ask a bunch of questions and give an update. I think my nerves are stuck on the cancer risks..breast cancer runs in my family and all that has it, has passed away. As for the females in my family, its just me and my daughters left.
Thanks again, for your time and sharing your personal information.
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09-27-2020, 09:39 PM
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HysterSister
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Posts: 13
Hysterectomy: November 28th, 2018
Surgery Type: DvH
Ovaries: Removed both
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Still abnormal PAP Still HPV Positive (2019) - updated 2020
I don't know where to post this..but I'm baaaack!. Had my radical hysterectomy November 2018.. cervix removed, uterus removed, tubes removed, kept my ovaries...Had my annual exam last week and my PAP came back ABNORMAL again!! I'm scheduled for a colposcopy on Tuesday. I can't imagine where these abnormal cells are coming from..I've been reading about VaIN and it's scary. Anybody sitting in the same pew?
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09-27-2020, 09:45 PM
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HysterSister
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Posts: 13
Hysterectomy: November 28th, 2018
Surgery Type: DvH
Ovaries: Removed both
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Still abnormal PAP Still HPV Positive (2019) - updated 2020
Im sorry if this shows up twice. I think I replied in the wrong place! I had my hysterectomy November 2018. Had my cervix, uterus,and tubes removed. I went in for my annual exam and my PAP came back abnormal AGAIN...what could possibly be abnormal..what cells are left to be abnormal. I have to go have a colposcopy in a couple weeks, but I've been reading about VaIN and it's scary. Anyone else in my pew? Lol
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09-28-2020, 04:21 AM
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HysterSister
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Posts: 25
Hysterectomy: November 30th, 2015
Surgery Type: LAVH
Ovaries: Removed both
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Re: Still abnormal PAP Still HPV Positive
Hi Wendy.. yes I’m going thru this as well. I started this mess in 2008, many procedures, HPV 16 positive. Hysterectomy in 2015. In 2018 I had VAIN3/CIS. They removed it with laser ablation. Now it’s back VAIN3. I can’t have another ablation, I’m too thinned out ..with previous procedures, ablations, menopause, and vaginal atrophy. Right now my Dr and I are discussing 5FU cream Efudex. It scares me.
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09-28-2020, 10:01 AM
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HysterSister
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Posts: 13
Hysterectomy: November 28th, 2018
Surgery Type: DvH
Ovaries: Removed both
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Still abnormal PAP Still HPV Positive (2019) - updated 2020
Yes it's very scary. I have so much cancer in my family and I've just been diagnosed with stage 3 kidney disease. It looks like you're ahead of me with procedures. Can they do radiation? My mom always said don't worry unless there's something to worry about! Waiting for my appointment is the worst. They sent me to a gynocology oncologist last time. Is that who has been treating you? Thank you for your reply. Anybody else?
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09-28-2020, 10:03 AM
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HysterSister
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Posts: 13
Hysterectomy: November 28th, 2018
Surgery Type: DvH
Ovaries: Removed both
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Re: Still abnormal PAP Still HPV Positive (2019) - updated 2020
Yes it's very scary. I have so much cancer in my family and I've just been diagnosed with stage 3 kidney disease. It looks like you're ahead of me with procedures. Can they do radiation? My mom always said don't worry unless there's something to worry about! Waiting for my appointment is the worst. They sent me to a gynocology oncologist last time. Is that who has been treating you? Thank you for your reply. Anybody else?
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10-01-2020, 03:14 PM
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HysterSister
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Posts: 13
Hysterectomy: November 28th, 2018
Surgery Type: DvH
Ovaries: Removed both
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Re: Still abnormal PAP Still HPV Positive (2019) - updated 2020
This website is confusing me. I thought I had already posted this but can't find it anywhere! I'm glad I saved this site because I thought I was all done. But NO. I go to my ob/gyn for my annual check up. I had a radical hysterectomy 11/2018 and had a few complications but got better, When I went back for my annual in 2019 my PAP came back abnormal but I guess that is common, I went back last month 09/20 and the PAP is abnormal again, Positive for HVP 16 and 18. My doctor has ordered another colposcopy. I guess my frustration (other than having HPV from nowhere!) is what is this virus feeding on? I have no cervix, uterus or tubes. My hormone levels are fine. This is TMI but I haven't been with anyone...I've just been diagnosed with stage 3 kidney disease and don't really want to have to deal with this. I'm sure she will say everything is fine and not to worry which I'm not, but what is left to remove? I've read a little about VAIN but not ready to go there yet. She may send me back to the oncologist but who knows. Anyone else have this virus that is only supposed to be on the cervix but don't have a cervix? My spirits are good and I feel just fine. It seems that my social life is spent going to doctors! Thanks
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10-02-2020, 10:41 AM
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HysterSister
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Posts: 528
Hysterectomy: June 3rd, 2013
Ovaries: Kept 1 or both
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Re: Still abnormal PAP Still HPV Positive (2019) - updated 2020
Hi, Wendy. I'm so sorry you're still having to deal with this.
HPV is best known for causing abnormal cell growth on the cervix, but it can cause changes in the cells of the vaginal walls or vulva also, it's just not as common. It's really still a mystery why some people get VAIN and others don't.
Keep us posted on the results of your next colposcopy. I'll be keeping my fingers crossed for you.
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10-05-2020, 08:16 AM
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HysterSister
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Posts: 42
Hysterectomy: August 22nd, 2018
Surgery Type: DvH
Ovaries: Undecided
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Still abnormal PAP Still HPV Positive (2019) - updated 2020
Wendy our stories are so very similar if you ever need to talk I know I do I’ll give u my phone # u can text anytime
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