Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Cervical Dysplasia w/ No HPV?

0 Recommendations

Has anyone heard of having cervical dysplasia without HPV? I seem to be in this situation and confused as its been told to me that cervical dysplsia is caused by HPV 95% of the time. What about the other 5% of the cases? What else besides HPV is the cause for cervical dysplasia? Does anyone know? Please help, thanks.

23 replies

kaitlin, hpv is the causative agent of cervical cancer 99.7% of the time....that other .3% is for rare cervical cancers. most cervical cancers are squamous or adenocarcinoma cervical cancers, and they are caused by hpv.

and, if you're experiencing cervical dysplasia, then it's most likely caused by hpv. if you have HGSIL (moderate or severe dysplasia), then you'll know that it's caused by hpv for sure. is the hpv test negative? it could be that the hpv infection has cleared and the dysplasia is in the process of regression. that would be great. or, it could also be that you have an hpv strain that is not included in the hpv testing.

as you probably know, hpv is very common....most women (and men), at least 80%, will have an active hpv infection by the time they're 50 years old. if you have had sex, then the chances are that you've been exposed to hpv. and, you can get the virus without vaginal intercourse....intimate sexual contact, skin to skin, can also result in hpv transmission.

hope that helps!

Flowershoplady: Correct me if I'm wrong but I thought the HPV virus died upon contact with the air. If that's true, isn't it sort of misleading to tell people that skin-to-skin contact can spread HPV? I'm not being smart-alecky because I've read so many of your posts and I know you're very knowledable about this subject. I really want this question cleared up once and for all to prevent misunderstanding. (Mine included...lol) Thanks! M

I'm not familiar with the hp virus dying upon contact with the air. I'm not even sure what that means. The virus is in/on the skin. Air doesn't do anything to the virus. Think of a penis....it can be right out there (so to speak), exposed to air, and the virus is on the genitalia skin. A good example of skin to skin contact could mean the penis rubbing or touching the vagina without intercourse. And if you read the great posting by corellin about 'reinfection' (just search on the word reinfection), then you'll see that men often spread it from one area of their genitals to another by touching/handling themselves. Hope that helps!

Thank you, Flowershoplady for your reply. Well, I have mild dysplasia CIN1. The Dr decided to do a biopsy after I had abnormal bleeding & have been complaining to her about pain after intercourse & post-coital bleeding for the past 2+ yrs. I will be getting the HPV test results soon & will know more. But I can tell you that my husband & I married young & we are each other's only partners. We were each others first. So its really concerning how I can get HPV if neither one of us has been with anyone else. I'm really confused about it.

Hi Kaitlin- In rare instances, some women who have not had sex have been diagnosed with HPV. That's because HPV is passed "skin to skin" and intimate touching can spread HPV (although this isn't the most common way for it to spread). It's also possible to have lower grades of CIN without HPV. So it will be interesting to see the results of your test. Could abnormal bleeding be caused by endometriosis? Sometimes a woman can develop endometriosis in the cervix and vagina -- unusual places and maybe sex could set off the bleeding. That can be diagnosed by biopsies. Also, could you be reacting to your type of birth control? Just some thoughts....

Thanks Corellin for your input. Well I got the results & HPV test result was negative & also pap was normal. But I'm still having the post-coital bleed as well as pain. They did ultrasounds on me which are normal & also an ECC was normal & biospy which showed the mild dysplasia. So I will take the info you gave into consideration & shall continue to search what may be wrong w/ me. I really appreciate all of your help. Its nice to see how you ladies are trying to help each other. I wish the best for you & hope that you will have a very healthy future ahead. I've searched on google for some natural ways to help cure cervical dysplasia. Some interesting info I found below.

http://pap101.com/

http://www.naturalcures-guide.com/natural-cures-for-cervical-dysplasia/

http://www.herbs2000.com/disorders/cervical_dysp.htm

Are we all just walking around with HPV naturally growing within us? Are we born with it? How does a cervical polyp become cancerous? Why was I told that no HPV was indicated? With only two out of 100 viruses being known to cause cervical cancer...doesn't that mean that the odds are great that soooo many woman would come in contact with these 2 high risk strains? If cervical cancer takes so long to develope then why are so many younger women now being diagnosed with it? If all cervical cancers are HPV related then why test for HPV when diagnosed...wouldn't HPV just be a given? Can one be exposed to HPV when young and then it lay dormant for years only to resurface later in life? How can you never have had an abnormal PAP and then within a years' time have a cervical polyp that turns cancerous?

Me: married at 20, divorced at 23...did not have sex again until I was 40...not even a date...I concentrated on raising my sons...had one pregnancy/had twins...was on birth control for a total of maybe 3 years out of my 46 years on this planet...did not drink while raising my sons and have never smoked...I met a man and we were monogamous for 5 years....he was my first after almost 20 years celebacy and he was my last...He was the first man I dated after raising my sons and he is the last...I have always been very healthy, maybe 2 UTI's in my whole life and seasonal allergies...I was diagnosed Dec.'08 with a cervical polyp that was cancerous deemed adenocarcinoma...I had a second opinion...same as the first...had robotic hysterectomy in Feb.'09 and here I am...so what did I experience? Should I play the lottery with these kind of odds?

waltzwithme, you ask many questions, and i'll try to respond.....

no, we're not born with hpv....it's a virus that is transmitted via intimate skin to skin contact. was the polyp and tissue that was removed further analyzed for hpv, or are you relying upon the digene hpv test?

as for how adenocarcinoma cervical cancer occurs....hpv is the causative agent, and then it's a bit of a mystery as to why some people don't fight off the infection and then it develops into dysplasia and cancer. lowered immune system comes into play, but we know that some women seem to be otherwise healthy and yet still get cancer.

and, there's not just 2 hpv strains that cause cervical cancer....there are 13 (or 14 or 15....depending upon how the strains are being categorized).

there's an hpv test to determine if the hpv infection is active. you can be exposed to hpv and then clear it....and then test negative. most women will clear their hpv infections without even knowing they have the virus. and, it's the hpv test along with the hpv test that are the best indicator of cervical health. you evidently had false negative pap smears - there's a relatively high rate of false negatives. that's why the hpv test is so important.

i hope that helps answer some/most of your questions!

My doctor told me the other day that she has seen cases in her country where nuns & young girls who are virgins to have cervical cancer. These are ladies who never had sex or sexual contact with a man. How do they get cervical cancer? I wonder if there may be a chance that some cervical cancers or dysplasia may be caused by other than HPV also? I've read about "Xenoestrogens" that mimic false estrogenic activity in our body & increase our estrogen levels & that increases our risk for cervical cancer. Xenoestrogens can be found all over in our environment according to what I've read on the web. Does anyone know more about this?

Your links you listed are spot on, there are great remedies to treat your Dysplasia. Dr Jane Semple ND, has been treating dysplasia naturally with great success over the past 15 years, you can pick up her book. It has some great ideas for supplements, vitamins and nutrition. Her findings were also used to create Papillex, which combines her recommended treatments into one capsule. Her book also demystefies HPV and helps explain in lamens terms what's happening to your body, what you need to change. Like for example stopping birth control and smoking.

L.

kaitlin, not sure where this doctor is getting this info....there's been quite a few studies on nuns because of their lifestyle and how it impacts health (some of it is quite fascinating), and, in fact, they don't get cervical cancer if they havent had sexual contact. i suppose there may be some nuns who had sex prior to becoming a nun. bottomline, hpv is sexually transmitted...or, more specifically, transmitted via intimate sexual skin to skin contact.....and hpv is the cause of 99.7% of cervical cancers.....with that exception being rare cervical cancers.

I was told the same thing when I was diagnosed, but it turned out they were wrong, I did have HPV, only it was hiding in areas that were not easily reached during the biopsy and Pap. However, they did find it when they did my LEEP.

As FSL mentioned, 99.7 percent of all cervical cancer are related to HPV, with the remaining .3 percent being very rare. So much so that I know very few gynos that have seen an non-HPV cervical cancer case. In fact, the experts in infectious disease and the doctors who work with HPV that have spoken at the NCCC conferences are some of the best in the world and they will be the first to tell you that basically, you do have HPV and having non-HPV related cervical cancer or precancer is beyond rare and that your doctor is missing the boat on your diagnosis.

As for nuns and virgins getting HPV, I was told the same thing by the doctor who originally diagnosed me, but in the end, her statement was somewhat misleading, not taking into account how that transmission actually happens. However, my doctor, and Dr. Felix who is an advisor to the NCCC, mentioned thta more than likely they had contracted it orally and then transmitted it by touching themselves vaginally, which is very likely through masturbation. Thus, you can still remain a virgin and contract HPV, as you do nort need to have intercouse for it to develop. Oral sex and heavy petting can also lead to developing HPV and cervical cancer and to me, seem like more plausible answers to the issue.

Anyway, in looking at my medical recrods, my doctor can tell me that I more than likely had two false negative HPV tests, as judging by the areas most affected, it was hiding.

My suggestion would be to ask your doctor to retest you or if you have additional surgery, like a LEEP or Cone, to have the specimen tested for HPV again.

In the same boat, and I too do not have HPV.

Chances are if you were diagnosed with CIN I or CIN II that you did have HPV, but it cleared by surgery time. However, the underlying damage was already done and you have precancer. That is something else that was discussed by Dr. Felix, an NCCC medical advisor, who said this can be quite common.

I am not trying to make either you or Cas9 feel bad, but the probability that you had precancer or cancer without HPV is so VERY rare, if not impossible, as it is that rare. Very few doctor's have ever seen a documented case of non-HPV cancer or precancer.

I would ask to be retested or see another doctor. because it happened to me and because of the false negative, I ended up with cervical cancer after being told that I did not have HPV - emphatically by three separate doctors. I saw a fourth doctor who did better testing and it was found in an area that was probably missed in the original Pap. I was devastated, but relieved the know that it was all removed with my LEEP.

thanks for your posting, pj.

and, bottomline, the statistics show that most women (and women) will have an hpv infection by the time they're 50 years old, so it would be unusual not to have one.

and, we know that hpv is the causative agent for adenocarcinoma cervical cancers as well as squamous cervical cancers.

I had another HPV test done by another Dr. & will find out the results. But, I still don't think I have HPV. My partner & I haven't been with anyone so it seems like I may have something else that's causing my problem. I'm not trying to be ignorant or something but I really feel adamant about the fact that I noe my partner havent been w/ anyone else so this seems impossible. But will see what comes about. Thanks

Please know that just because you haven't been with anyone via traditional intercourse, does not mean that you do not have HPV. There are plenty of women who have contracted HPV without every having intercourse - i can personally name three who got it and two who have never had intercourse because of it after being diagnosed.

Touching someone with an active HPV skin infection through means of masturbation or intimate touching can spread the disease. Also, if you have had oral sex and either you or your partner have done that with more than one person, chances are you contracted HPV orally then spread it vaginally. Doesn't mean you have oral cancer, but it is a leading cause of transmission other than intercourse.

I know it hurts to find out that you have HPV, as none of us what to be the girl/woman who gets it, but chances are that you do have it. I myself was in denial about having it - with the help of the doctor's and labs that reported false negative results to me. I was destroyed when I found out I had it and it took me a very long to to come to terms with it. But after realizing HOW COMMON it is, I decided it wasn't anything to feel shame about.

At this point, I would say be willing to say with 99.9 percent certainty your is caused by HPV. There is a 30 percent false-negative screening rate, thus your retesting sounds like you are on track and being watched carefully. However, I would ask to be re-Pap tested and HPV tested again in 6 months to be sure.

Hi Kaitlin -- Virgins have definitely been found to have HPV infection -- though it's much more rare than people who have been sexually active. I read a study on Danish soldiers where some of the soldiers who had reported no prior sexual partners were found to have HPV infection as well as some self-reported virgins in a University of Washington study. As PJ mentioned above, that's because HPV can be passed through intimate touching and doesn't actually require sexual intercourse (although sexual intercourse is the most likely route of transmission).

Also, CIN1 or LSIL (mild dysplasia) can be caused by an HPV type that's not one of the 13 that are detected by the HPV test. The test only looks for 13 of the most oncogenic types, but there are other types that also progress to CIN1 that aren't detected by the test -- such as HPV53 or HPV67 or even the low risk HPV's 6 or 11 (to give a few examples). So you could test negative for HPV, but still have an HPV type that's not detected by the test. Also, the HPV could be in a part of the cervix or vagina that was not sampled, and, again, result in a "false negative" test.

There's also the possibility that your low grade lesion was misdiagnosed. I was diagnosed with CIN1 in the cervix 10 months after my LEEP procedure. When the GYN explained to the pathologist that the sample came from the vagina and not the cervix and that it came from a cauterized area where the LEEP had occurred, the pathologist downgraded the result from CIN1 to "reactive atypia" (caused by healing from the procedure, not caused by HPV infection). Why couldn't the pathologist tell the difference between an HPV-related CIN1 lesion that would be a cause for concern in my case from one that was just reactive tissue? However, they can't always tell the difference. So, your mild dysplasia could actually be just inflammation or cervicitis rather than something caused by an HPV infection. By the way, even some HSIL or AIS has turned out to be a misdiagnosis due to endometriosis. So, pathology and cytology (the reading of pap smears and biopsy samples) is not a perfect science and can sometimes steer us in the wrong direction.

I think it's important to keep an open mind and not rule anything out or in, but just to be open to a range of possibilities which, I think, gives you a better chance of figuring out what's going on with your health. If, somewhere along the way, you or your husband had picked up an HPV infection, it's not a reflection on your moral values, but just a reflection on how contagious and prevalent is this particular virus. But there's also the possibility of abnormalities that are not related to HPV and are a result of misdiagnosis or some other thing going on with your tissue.

Corellin, Thank you & yes I will definitely keep an open mind. I agree this is not a reflection of moral values & not an issue of shame or denial either but more of a curiosity issue. Its like you said that I need to keep an open mind that maybe it could be something else also. I don't just want stamp myself & not explore further into the problem. My second pap came out normal & HPV negative. But I'm still not convinced that everything is ok. Even if it came out positive, atleast I would know for sure what is going on. Its not that I'm in denial, but I would like to know more. Maybe its a strand that is not detected like you mentioned. And again not trying to make it a moral or denial issue but I assure you that neither hubby nor I have touched anyone else intimately. That's the truth, I promise. I just want to know if there may be something else going on in my body that could be causing this besides only HPV.

I understand where you're coming from. Given your circumstances and the negative HPV test, it does seem questionable that a slight abnormality picked up temporarily by a pap or even a biopsy is HPV-related. And, if not HPV-related, then what was (is) it? Maybe your doctors have some ideas?

Good luck to you!

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

stopcancernow: CONTACT the National Cancer Institute (NCI) for help and communicate your view. www.cancer.gov/help

stopcancernow: American Cancer Society Cancer Action Network (AS-CAN) www.acscan.org/

stopcancernow: Tips to becoming a better Cancer consumer Advocate: www.cancer.org/docroot/adv/content/ADV_1_1_What_You_Can_Do.asp

stopcancernow: “Never doubt that a small group of thoughtful, committed people can change the world. It is the only thing that ever has!” -Margaret Mead-

stopcancernow: Evidenced-Based Peer-reviewed science. How does it work? Lab example: www.cdc.gov/dls/bestpractices/LabBestPractice.pdf

Group leaders

You