Anal Pap pos for HPV and abnormality

Hello friends,

I'm new to this forum. I just got a call yesterday from my OB/GYN with test results from my annual. My vaginal pap was normal/clear. My anal pap was positive for HPV and abnormal cells.

Some personal history....
I'm a healthy 39 year old mom of 3 and 1 year old girls.
I had an abnormal pap at 22 which resulted in cryosurgery after colposcopy...not sure what type of HPV I had, but I remember the doctor saying it was likely HPV and that I had early displasia. I've had clean paps since then.

I've had external vulvar and vaginal warts treated once, maybe ten years ago, with acid. No other visible problems since then.

I had anal sex once about 8 years ago with a boyfriend...later I saw something suspicious on his penis which he told me was a wart after having it treated (we were breaking up by then).

So, fast forward to today. After hearing Farrah Fawcett's story a couple months ago I started getting concerned. I had no idea anal hpv even existed (and I'm an educated person with a doctorate!). There is so much ignorance surrounding this subject. As soon as I mentioned my concerns and history to my OB, she kindly thanked me for being honest and forthcoming and said we should do the anal pap. Sure enough, I've got the anal hpv...and some abnormal cells to boot.

Anyway, I've just been studying these boards for the last hour and learning so much from jamie, moon, bb, dragonfly and others...

I'm fortunate to live right outside NYC, so I think the medical professionals are more conscious and aware of this issue. My OB is setting me up with a Gynecological Oncologist who specializes in this area...I hope to see him for my anoscopy and a real "diagnosis" within the next month.

I would appreciate any advice or support, but in general just wanted to introduce myself. I'll be a new regular on the boards....at least for a while!

Smiles and best wishes to all.

By momof4_1985
Posted August 18, 2009 at 2:53 am
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Hi akamai70, thank you for sharing your story. I really hope that everything works out for you. I'm sorry to hear all that you have gone through, and what you are going through right now as well. I will keep you in my thoughts and prayers :-)

You came to the right place for support and advice. We are all here for you! Good luck and God bless!

Truly,
Lynn

By inspireme318
Posted August 19, 2009 at 11:07 am
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Hello akamai70,
I am new to the site as well, and also have had similar experiences. I too have had HPV of the Vulva and had 2 surgerys for it, the first was done with the acid, and the second 3 months later was cut.
It has been 5 years and thank goodness it has not come back. I never had an anal exam by my OBGYN !!
I guess I better get moving as well huh?
Does anyone know of the side effects of Anal HPV?

akamai70 you are not alone.
I will pray for you too:)

By jamiegirl
Posted August 19, 2009 at 11:16 am
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inspireme- there are no side effects of anal hpv per say - they would be from problems caused by the hpv. I have anal hpv. It was diagnosed by a doc in NYC who specializes in anal paps and hpv testing. I did not have any effects from the hpv, I just figured I had it since I last had anal sex about 6 yrs ago. But, you can get it without having anal sex too. My pap and high resolution anoscopy were both negative, thank goodness. I just hope they remain that way...

By sufferinginsilence
Posted August 26, 2009 at 12:54 am
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I too am new to the site and have been reading/researching for hours now (really should be asleep!). I appreciate everyones stories, and feel a little better knowing that other people understand what I'm going through. I have been crying everyday, feeling so alone and full of shame ever since my gynocologist spotted some anal warts while I was in her office for a checkup last week. I absolutely lost it right there in the exam room. This isn't supposed to happen to ME!? I have been in a monogomous relationship for over 2 years, but I guess that doesn't matter anymore. HPV is a scary thing. I knew that it could lead to cervical cancer, but had no idea it could also lead to anal cancer! My doctor said that what I have (just based on her exam, no bloodwork) is considered "low-risk" HPV, but it sounds like from some of the comments above that anal cancer is related to HPV. Am I right? I have never had anal sex, but my doctor explained that the nerve endings in your vagina are the same nerve endings in your anus and that's why you can still get warts in and around your anus even w/o having had anal sex. I am freaking out!! I have to go see a colorectal specialist next Monday and I'm very scared. I have a feeling the warts extend up into my rectum. I'm afraid to imagine what the treatment is going to entail, and now am scared about anal cancer as well. Can anyone put my mind at ease??

By akis17
Posted August 26, 2009 at 1:12 am
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Hello new friend i was reading your discussion and was wondering what cryosurgery was. i am 21 and recently had an abnormal pap and it turnd out to be hvp i go for my colop on the 31st and i was just wondering what the cryosurgery was im new to the whole hpv discussion board as well welcome!

By Bymyside247
Posted August 26, 2009 at 1:20 am
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Sufferinginsilence: Well, your OB is right; the type of HPV that causes warts is the "low risk" type. I also want to tell you that I can sympathize with your feelings of sheer fear. I have been there. At bed time I would lie awake for hours imagining the worst; imagining leaving my 6 beautiful children and my husband behind. I would become so consumed in my fear that I would begin to shake and get sick. Guess what, all that fear did me absolutley no good. It wasted precious time with those who I am most afraid to leave behind. In the end I am trying to realize that life is going to be what life is. There are certain things that we have no control over. My heart breaks when I see people so afraid because I have been there, (prayerfully I will not allow myself to get there again) I know how desperate the feeling is. I am so sorry that you are going through this time.

In ending, it sounds like you are being very proactive :o) Make sure that you are getting copied of EVERYTHING!!! If you haven't already, call and get copies of your pap and any other procedures you've had concerning this.

Everything is going to be okay :o) I know the physical appearance of the warts may be disturbing to you, they are low risk concerning cancer though. If you are a lady of faith don't forget to bring this to God and discuss your fears with him.

Will you keep in touch and let us know how you are? My best wishes to you :o)

By mobilis
Posted August 26, 2009 at 4:34 am
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Bear in mind that it's not necessary to have anal sex to get anal HPV. The anus can be brushed by the scrotum during vaginal sex and since HPV is transmitted "skin to skin" this is sufficient. Dissociating anal HPV from anal sex would go a long way towards de-stigmatising it.

By akamai70
Posted August 26, 2009 at 7:36 am
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As always I'm grateful for the depth of sharing I find on this site. Thanks to all for your honesty and support. We all feel alone, but there are so many of us out there suffering in silence....

Suffering in silence I'm knew to this, but I too have learned that the "visible" warts are considered low risk. Of course you must still get an anal pap and anal hpv test. My anal pap, though it didn't tell the strain, did tell me I had a high risk strain. The more knowledgeable among us may know whether all the anal paps show high vs. low risk strains??? (I don't know how many anal paps are available.) You are NOT alone!! Don't blame yourself. Who knows when this happened or how you got it, so don't stress out about it. I'm so sorry you're going through it alone.

Inspireme I'm so glad you're vulvar warts haven't come back...I'm going in soon for a vaginal/vulval colpo to be checked again. I'm nervous because I haven't had that area thoroughly examined since I was treated for almost invisible vulvar warts almost ten years ago....

Akis I was so young when I had the cryo that I have very little memory of it!! The worst part was the biopsy...I do remember feeling some pain and ample discharge after that. Neither of the experiences were fun, but they weren't unbearable. Now that I've birthed a child I've experienced real pain!! ;-) Don't worry too much about this....you're being proactive and careful. Just keep on top of your doctors and keep learning--we are the only advocates we have and we must research everything...don't just trust something because a doctor or nurse practitioner tells you it's so. Get a second opinion and ask people here!! We're all learning from one another and helping each other through this.

Mobilis is right...there are MANY woman who have anal hpv and have never had anal sex. Anyone who's ever had "regular" sex with a man knows they rub their penises all over down there anyway. It's not like they are consciously avoiding the anal area and only making contact with the vagina. So any part of the penis or scrotum could rub up against the perineum/anus. I for one wish people were not judged for any consensual sexual activity but that's not the world we live in, unfortunately. It's not my personal cup of tea but I did have anal sex with one boyfriend eight years ago. My colorectal specialist thinks it's highly unlikely that I got it that way since I had the high risk hpv back in 1992, but who knows?? However, I certainly think it's a risky (and for myself low-reward) behavior and would not have chosen to do it knowing what I know now...

Bymyside once again thanks for your warm and loving words. You really know how to make us all feel a little more calm and centered. You are so right--living in fear is not the answer. What's done is done, and now we have to work to keep ourselves as healthy and happy as we can.

Thanks to ALL for sharing!!

akamai

By mp327
Posted August 26, 2009 at 8:06 am
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sufferinginsilence--

I just had to respond to your post. No--you do not have to have had anal sex to get anal cancer. I was dx'd with it in June 2008 and have never had anal sex and have been in a monogamous relationship for 38 years. Yes, it's true that most anal cancers (at least 90 to 95%) are HPV related. I am glad you are seeing a colorectal specialist on Monday to have an exam and I wish you the very best.

Martha

By mickietucs
Posted August 26, 2009 at 10:36 am
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akamai70 - thanks for sharing your story and pleased your doc didn't brush you off when you expressed your concerns. I wish more docs were like that. I've not gotten very far yet in trying to find someone to possibly do an anal pap. Having HR HPV and also having had anal sex with husband #2 (a few times more than 20 years ago - something I'm not proud of, didn't like at all, and really have never talked about it before - only with you gals I feel I can be more forthcoming), I think I should have one. Can I ask about the procedure - was it very uncomfortable?

Glad you are in the NYC area and have access to more progressive doctors - I send you best wishes - keep us posted on how the anoscopy goes.

By dazednconfused
Posted August 26, 2009 at 2:02 pm
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akamai - you are lucky to have such a progressive doctor. Good for you (and her) for being proactive about ALL these HPV-related procedures and challenges -- not just the more common ones.

How do we all go about finding doctors like this??

Bymyside-- good advice! I am still right smack in the middle of the fear period-- trying to keep a grip on myself while at the same time trying to become well-informed on HPV and all the garbage that goes along with it.

With so many women on this site facing the same issues, and asking the same questions re: HPV type testing, trying to find someone to do an anal pap, etc, the one group that seems out of synch is the doctors. You'd think there's be some sort of (new) basic protocol for screening once a woman has a bad pap or is diagnosed with HPV related changes.... at least more in-depth testing than they offer now.

Good luck, akamai. Hope the news will be more reassuring from here on in.

By akamai70
Posted August 26, 2009 at 7:24 pm
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thanks mickie and dazed for the warm thoughts. mickie, the anal pap is not painful at all. it's a little uncomfortable, as they need to turn the little dacron swab around about 15 or 20 times to get a good sample (i read the protocol somewhere!). then it's over. i definitely think it's worth getting an anal pap...hopefully you can access one where you are!

By sufferinginsilence
Posted September 2, 2009 at 12:45 am
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Well yesterday I finally (after a VERY long 18 day wait) had an appointment with a colon/rectal surgeon about my anal warts and let me tell you it was hands down the most horrible doctor's office visit I've had in my life (and trust me, I've had plenty). I don't even know where to begin. Well, let's begin with the fact that everytime I called the office I got an answering machine, even during business hours. Once I got there I figured out why...the receptionist is ALSO the doctor's nurse! WTF?? And when I arrived she was on a personal cell phone call while the business phone was ringing off the hook and she just ignored it! I should have walked out right then and there, but I was desperate to get some help. I was informed that the doctor was running late so I waited in the lobby with a roomfull of patients (all very much older than me). I was shocked at how very un-private that office was, especially considering the sensitivity of the nature of why patients are there to begin with. The receptionist/nurse left her window open the entire time and talked to patients on the phone freely and loudly about their colonoscopies, etc. Uh...hello...ever heard of HIPPA?? On top of that she also left the door from the lobby into the exam room area wide open too!! Which means all the patients in the waiting area got a free show of me crying as she left me in the exam room for my post-exam consultation with the doctor. I was mortified! Enough about that, on to the incredibly rude, pompous, cold, disrespectful doctor. His name is Todd W. Arends and do NOT go to him (unless you don't mind being treated like a piece of meat). First of all, his preferred method of examining a patient (after harsh enema which is SO not necessary for just an exam I found out later...) is to ask you to drop your pants and underwear to the floor, leave them dangling around your ankles (you know, because you are a piece of meat that has an STD and deserves to be treated as such) and bend over an exam chair, ass up in the air as if putting yourself in a position to be violated in the worst way. I didn't know any better since I haven't been to a doctor for rectal problems before, but I have since found out that it's proper (and respectful if you ask me) to ask the patient to undress fully from the waist down, and lie down on his/her side with a sterile paper blanket covering your exposed areas. Not this doc...he wanted it raw and cold, just f*ckin drop trou and bend over damn't! As you can imagine by this point I was feeling rather uncomfortable, but then once he rammed his instrument up my ass I felt outright violated. I started bawling because of the humiliation and the pain. He didn't show an ounce of compassion. After the exam was over, I tried to ask him questions but every time I did he would cut me off mid-sentence and interrupt so he could talk down to me because apparently my questions were ignorant. So there I sit, tears streaming down my face, full of unanswered questions, afraid and alone and he couldn't care less. I could tell he was rushing through my appt to get to his other patients since he showed up late. I can not even explain to you the amount of emotions that overtook me as I walked out of that office. Fear, pain, humiliation, anger, distress...just to name a few. I was desperate for treatment, but I knew that my procedure would require that I most likely will have to have several return visits to the doctor, and I just couldn't imagine ever having to go through that emotional ordeal again. I am going to call another clinic and get in to see a different doctor, and I'm filing a complaint with our state Board of Registration for the Healing Arts. I only hope I can help prevent others from being treated so inhumanely. That was hands down the lowest point I've reached in my battle with this horrible virus.

By rkh
Posted September 2, 2009 at 1:22 am
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Dear Sufferinginsilence,

After reading about your experience, I am mortified with you. His treatment of you should be expressed via email (do you know if there is an email address with a link "contact us" for his office?) by every woman that has read your experience of torture and degradation. If you send me the email address, I will tell him what I think. No doctor SHOULD EVER get away with this. I'm here if you need to talk or ask questions:) Thank you so much for sharing your story with us. For I have learned alot and I too have serious health issues related to HPV.

By sufferinginsilence
Posted September 2, 2009 at 10:32 am
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Thank you so much rkh for having my back on this. It was a horrific experience especially considering how long I had to wait to get in, and my high hopes for getting relief from my symptoms. I'll send you their web address, but I don't see anyplace on there to "contact us" (no surprise there!). But you are right, they need to know even if they don't care.

By Bymyside247
Posted September 2, 2009 at 12:18 pm
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Sufferinginsilence: Google this doctors name. Once you do, click on all the links that list him and most of those sites have an area where you can rate you doctor or grade your doctor. Do that on EVERY site that you can find his name on. Just make sure it's the doctor who treated you and not one with the same name :o) That would be bad! Make sure that you are doing EVERYTHING that you can to make sure that someone else does not go through this same thing.

You are not "dirty" or worthless because you have the HPV! I am sorry that he caused such strong negative emotions in you; what a jerk! I had something similar happen when I was younger. I had fallen at work & had to go to a worker's comp. doc. Yeah, for whatever reason he needed to do a full pelvic exam. He did a lot of rough checking as well. On top of that, one of his nurses held the door open while she discussed a situation with him; my legs all up in the stirrups. Hmmmmmmm Like you, I cried as well.

You are precious and valuable in the eyes of God. Never let anyone make you feel anything less :o)

By flowershoplady
Posted September 2, 2009 at 3:44 pm
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sufferinginsilence, i am SO sorry that you had this awful experience with a doctor. i hope you're feeling strong enough that you can tell this doctor, perhaps in a letter, how inappropriate his behavior and attitude was, and I've never heard of an exam in the position you describe....and i can only say how sorry i am you went through this. there ARE compassionate doctors, doctors who know how to treat and respect their patients, and i hope you're able to follow up with another doctor who will provide you with the care you deserve. sending gentle hugs....

By sufferinginsilence
Posted September 3, 2009 at 6:45 pm
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Bymyside247, thank you for your advice and your kind words. I am familiar with how those search engines work and had already filled out several online doctor reviews (negative of course) for Dr. Arends (verifying his office address) and let me tell you it felt good. It didn't take away all the pain and shame I felt post-exam, but it did help me feel good knowing that hopefully I can spare even just ONE person from having to go through what I went through. I am sorry you encountered a similar situation with your worker's comp claim/exam. That is just HORRIBLE! I am shocked at the unprofessionalism of certified doctors in this nation. It is sick and disgusting and from now on I will always, and I mean ALWAYS get a verbal referral from a friend, not just my general practitioner. They have hidden agendas too unfortunately, and it's obvious that the reason my gyno recommended the jerk specialist is because they belonged to the same hospital group. I promise you that I will call my gyno and/or his nurse and tell them about my experience so that maybe next time they will reconsider referring their patients to him. Hold me to that, ok??? It's a tough call to make because I tend to be a people pleaser and I don't like to complain, but after reading the responses on here about my experience I now know for sure that I was mistreated by that doctor.
flowershoplady...thank you so very much for caring and taking the time to respond. I appreciate that you let me know that the position that doctor put me in for the exam is unheard of because I was second guessing myself wondering if maybe that is normal and I shouldn't feel so violated. But after confiding in some close friends about my experience they also agreed that bending over a patient with their pants still around their ankles followed up by the insertion of an instrument into their rectum is NOT good practice. I have never felt so violated in all my life, and I feel as if I now have a little taste of what it must feel like to be raped...the pain and shame associated with it was VERY real and I still feel traumatized. I have an appointment to see a specialist that a friend of mine highly recommends. I can't imagine it being any worse, so it can only be better, right?

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