HPV - Getting Worse....

I'm so baffled, scared, concerned and very overwhelmed!!! I've had high risk HPV for 13 years.  Sometimes my PAP's are good sometimes they aren't. It's like a roller coaster.  I've stopped having sex, I don't smoke, barely drink, exercise, take L-Lysine and Vitamin D, along with  a lot of other vitamins. My last 3 paps came back normal, this last one just came back abnormal, so my gyn wanted to do a coposcopy. I went in, and was very nervous and very tensed. It was very hard for him to see much, but he said from what he did see he didn't see any changeds, however he wants to send me to a oncologist/gyn. The last time my pap came back bad it was a low cell change, then the 3 came back good, and this last one not only came back bad it came back with a high cell change.  Mind you I have had a complete hysterectomy in 2005. So what is being papped is my vagina. I've read up on vaginal cancer, and though I'm at risk (due to my HPV) it is very rare to get. That does not make me feel any better though. Back in March I did have some vaginal bleeding, itching, and pain when I urinated, not a burning feeling of pain, more like my abdomin (abdomen) was in pain (sort of like a UTI feeling) it lasted about a week and never came back. I (although I should know better) assumed it was maybe vaginitis cause I had just started working out more days and would sweat and then wait til evening to shower....anyway...looking up vaginal cancer symptoms I do see that vaginal bleeding can be a symptom, but would it just happen, last a short time and then go away and not come back since? Since my regular gyn wants to send me to a specialist for the first time in about 5 years I'm so so scared that I have vaginal cancer. Can anyone...anyone at all give me some answers or some hope? Just to relax a bit. I dont have an appointment yet on when I go to the specialist, but I need to hear something besides what everyone is telling me...."Just wait and see what the specialist says" It's hard cause a lot of people just don't understand. Please and Thank you so very much.

[Covina]

Oh boy...I guess this no one has anything good to say about this...Should I post it to a doctor? Is it THAT bad??

[Covina]

bump

[Covina]

bumping this up again....Can anyone answer please??

[Hollyv]

I think the reason that no one is posting is that no one knows what to say. Not that you are going to have a bad outcome, there is just not enough information. Some women just go back and forth with Paps that are abnormal or hard to read. Some of this is even lab error when a tech bumps up the abnormal reading because they are not sure. I’m not sure why you had the hysterectomy, if it was for cancer then you may be at higher risk, if it was for bleeding, mild cell changes or other reasons then you are at lower risk. Actually the consensus is, if you did not have cancer there is really no reason for a pap if you had a complete hysterectomy. I’m not sure what your Dr. was looking at with the colposcopy (because you don’t have a cervix) and did he do any vaginal biopsies? It appears he did not see changes. Also the lab needs to know the Pap comes from the vagina and not the cervix because they could confuse some of the cells. Your Gyn may be passing you off because he/she is unsure and does not want to make a mistake. If you are older some of your changes can be totally normal (you didn’t give an age). I know you don’t want to hear it but you need to just relax until you see the OB/onc. They are the specialist and are very good at what they do—better than normal OB/gyn’s. Just look at it this way, you are doing everything to be safe, don’t look at it as a bad thing but look at it as a good thing and hopefully that will put your mind to rest. And on the really remote chance they found something, you had 3 past normal Paps so it would be very early stages and very easy to remove. My thought is they won’t find anything but your GYN wants to make sure because OB/Gyn’s are paying really high malpractice and they want to stay safe.

Hope this helps…Good Luck…

[Covina]

Holly, you made me cry with your words...not bad tears...just tears that you answered me. THANK YOU from the bottome of my heart. I'm 47 years old, I had a hysterectomy due to bleeding at the age of 37....they pap my vagina cause I do not have a cervix, and this is where they see the change, I've had biopsies in the past all came back fine, just that when he said ob/onc you know that fear just went right throuh my body. But reading what you wrote believe it or not has calmed me. When no one was answering I was digging my grave...so THANK YOU!

[Covina]

I posted your name wrong on my reply....

[Hollyv]

The guidelines are if you had a total hysterectomy and it was not cancer, you do not need Pap’s. Especially you would not need annual Pap’s, maybe a vaginal pap every three years if you are really nervous. It is possible your latest one may have been a good idea, since you had bleeding but the bleeding that you had cleared up quickly so it is hard to tell why you had it—it could have been a simple infection. At your age, your cells go through some changes and can atrophy (normal degeneration), so that may be normal for you and your age but the tech doing your pap is not so sure and may bump up your abnormal level. Many menopausal women get abnormal Pap’s that don’t mean anything, just an extra check with a Pap in 6 months to a year. And you went into menopause early when you had your hysterectomy. It is really unusual for your GYN to do a colposcopy to just view the vagina (but Dr.’s get paid for this!) especially since you did not have cancer in the past. I’m also not sure why you say you have had HPV for 13 years. Are they testing you for HPV? This would also be unusual. If you had cervical HPV, which they only started testing for less than 10 years ago it would be gone once you had the hysterectomy with the removal of your cervix. Your Pap’s that keep giving you inconsistent results could also be the lab your Dr. sends the tests to—some labs are better than others. You might want to ask for a copy of all your past results. You also may be being over tested and the more they test, they are apt to find something that may need to be looked at but as far as your health goes it means nothing that is the reason they changed the Pap testing guidelines in 2009 to every three years. Under the same guidelines it is recommended that women with a total hysterectomy do not need Pap’s.

For peace of mind a follow up with an OB/onc is a good idea. I would be very surprised if they found anything.

Hope you can relax a bit now...
All the best!