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HPV

Phoebesnow
Posts: 447
Joined: Apr 2011

I am wondering if anyone else has had a similar experience.

I remember having a virus in my twenties with these symptoms. A yeast infection, horribly painful hemorrhoids and an extremely high fever and a urinary tract infection. The pain was so unbearable, I rushed to the doctor and he treated each symptom individuAlly. The hemorrhoids did not go away quickly. This was 1980, I don't about how aware they were of hpv at that time, as I have no memory of being tested for that then. I have been tested since and it has been negative, but I have been told there is no real conclusive test for hpv? Later on I developed cervical dysplasiA and was treated with cryosurgery . I have had other abnormal paps over the years but no treatment was necessary. I feel this is all related. I am wondering if anyone else has had an experience like this?

pjs62
Posts: 95
Joined: Sep 2011

You actually made me remember....back in 1985 or so I was also treated for cervical dysplasia with the 'freezing' treatment of that time. My paps were mostly normal after that. A few yrs later I was hospitalized with a horrible urinary tract infection. But I was never tested for HPV or anything similar. I was mostly healthy until 2010 when I was diagnosed with anal cancer. So finding out this cancer is from a virus I'm starting to think maybe it is related somehow.

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

Over the years, I had perhaps a total of three abnormal paps. One was many years ago in my 20's, when I was told it was an "infection," for which I was given a vaginal cream. The next time I was in my early 40's, when no treatment was given, only a repeat pap done a few months later. The last time was in 2005, with only a repeat. Each time, the test was repeated after a certain waiting time and the repeat tests came back normal all 3 times. I know for a fact that the initial one in 2005 came back as ASCUS (atypical squamous cells of unknown significance). I have always been very diligent about getting a yearly pap and had one in December 2007, about 6 months before my cancer was diagnosed in June 2008. The 2007 pap was negative. Since my diagnosis and treatment, I insist on HPV testing along with my pap every year, although my gynecologist normally just tests for HPV every other year. Each time, the HPV test has come back negative since treatment.

Angela_K
Posts: 370
Joined: Jan 2011

I was told by the head of ob/gyn at S&W that HPV testing is not reliable? This was about the time of my diagnosis so I was very overwhelmed at the time but I remember us discussing whether or not I should be tested. I had been 3 or 4 years prior and tests were negative. But it seems that years ago, probably 15 or so, my ob/gyn at the time told me I tested positive. ???

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

I think the problem with HPV testing is due to the fact that one can carry the virus but if tested when it is inactive, the test will come back negative.

Phoebesnow
Posts: 447
Joined: Apr 2011

My thoughts are that hpv does have symptoms and they are not being recognized. The milder forms have warts so that is an obvious symptom. The gardasil inoculation does not protect against the strain of hpv that some of us have or had. I think u r correct about the dormancy mp327. I am certain this is where my cancer came from. I would really like to come up with symptoms for hpv to warn people especially young people. I am wondering why my doc never advised me about the potential for other cancers once u have the cervical dysplasia. Look up hpv on wiki, a lot of interesting info there.

Swish_27's picture
Swish_27
Posts: 1
Joined: Feb 2014

Hello,

I am new to this site and was going through forums when I stumbled upon yours. I don't even know if I'm asking this in the right place. I was diagnosed with cervical dysplasia several years ago. HPV positive and underwent cryotherapy.  I, like you had, suffer from painful hemmerhoids, among other concerning symptoms. I feel like since I am HPV positive it's not irrational to think that what went on with my cervix is related to what is going on with bowels. I had a colonoscopy completed which confirmed internal hemmerhoids. In researching more information I found that HPV related rectal cancer is often confused as internal hemmerhoids. I was wondering if anyone with a similar medical history can shed light on any particular symptoms? Doctors seem to keep dismissing me because I'm young, but I'm trying to be proactive because something doesn't feel right. I don't understand why I feel like I'm being scrutinized for wanting biopsies? I feel like I can't get any answers and it's making me very worrisome. Thank you for any responses.

 

Phoebesnow
Posts: 447
Joined: Apr 2011

A feeling of wetness, itchiness, crawly feelings in the anal area years prior to dx.

 

A feeling of never being empty

 

Pressure

 

Towards the end

 

Blood on tissue after wiping

 

Tucking my tumor in, in the bath! (thought it was the hemmoroid they kept telling me about)

 

Hair loss

 

Weight loss

 

Narrow stools

 

Fatigue

 

I never had any pain.  I knew something was wrong, pressured my doctor for 3 years.  Kept telling me it was hemmoroids.  I had hemmoroids before, so I knew it wasn't.   Crazy that I believed her.  Maybe I wanted to believe.  

 

I was dxed during routine colonoscopy. The trick is to pull it out slow, because often it is missed.  

 

If you feel something is wrong,  keep at it .

 

They tried to make me feel like I was crazy.  My lat appt b4 discovery, my dr said to me "why are you here again?". And referred me tO physchiactrics.

 

I hope it is nothing and just te hemmies.

 

Sorry for typos, system does not work well with I pad.

Marynb
Posts: 1134
Joined: Aug 2012

I don't know whether I had/have hpv or not. I assume that I must have since my ex. husband was a serial cheater, so I am sure I was exposed to hpv. I was also misdiagnosed for years as having a hemmorhoid, even though I suspected it wasn't. By the time I was diagnosed, I was in severe pain and getting in and out of a chair was difficult. I also felt sick and very fatigued. I developed chronic diarreah, which is what finally got me to change doctors, thank God. I knew something was terribly wrong and I quit my job, thinking it was stress related. I couldn't be too far away from a toilet. I felt so much better after treatment, that the treatment seemed minor to me. The burns were nothing compared to the pain I had felt before treatment.

I was tested for hpv post treatment, but was negative. The doctor said the tests were pretty useless. Not sure whether that is true. I am also not sure whether I still carry the virus in my body? I would really like to know.

sandysp's picture
sandysp
Posts: 752
Joined: May 2011

Mary, 

Everything you describe here, and you describe it well sounds just like I felt.

I too think that we likely experience symptoms from hpv that can just feel like "the malaise" as my doctor used to call it. I never have tested positive either but with cervical cancer that cost me a uterus at 25 years old (I also had been married to a serial cheater) and then T2N1 anal cancer at 64 I believe it is one malicious crazy virus. 

Thank God both these cancers kill you slowly and not at all if caught in time and protocol is strictly followed. My pap smears back in the day were supposedly "normal" and my doctors  blew off my complaints about spotting, being horribly smelly down there, etc. until finally a pap came back a IV out of IV when I was young. Earlier detection and I may have been able to keep my uterus. 

This time around I was partly to blame. I kept going to Chiropractors and Accupuncturists for pain and fatigue and blamed it on my job also and grieving which I still think gives me some body aches certain times of the year. I had not gone to a gynecologist in 7 years but I had received a colonoscopy within a time period where it could have been diagnosed perhaps early but the GI had never see anal cancer before until mine. Oddly though, he diagnosed another case right after. I wonder if it was just that he missed the ones he could have caught early.

Anyway, like you, I felt a lot better and had hope after my diagnosis. Before my diagnosis, it was all downhill and life was just about a lot of pain. I couldn't imagine how people could sit down in chairs with abandon. I had to be so careful and I was bringing pillows with me everywhere. I would practice singing and not be able to stand throughout rehearsals but sit on a chair piled with pillows. All the light was leaving my eyes.

I feel bright again, but I have not gone back to my stressful sales job. Thank God we were not in debt and my husband draws a pension. We are getting by.

Good luck to you and God bless. Somehow it's comforting to hear another story so similar to my own.

Fondly,

Sandy

Phoebesnow
Posts: 447
Joined: Apr 2011

It is better to start a new thread and then people can reply to your question. MIT is easyjist click,on new topic .

 

TraceyUSA
Posts: 132
Joined: May 2013

I did not have any of your early symptoms (yeast infection, hemorrhoids, fever or UTI).  I did have cervical dysplasia in the late 90's which was treated with LEEPs and eventually a conization.  It took 6 - 12 months before a got a normal PAP but all have been normal since.  I'm not sure if I was tested for HPV at that time but I do know that around that time is when the virus started to be recognized as a cause of cervical cancer.  My anal tumor was tested for HPV and came back positive. 

It is my understanding that most people's bodies rid themselves of this virus but some do not and it attaches to their DNA.  So, if it's true that it's attaches to DNA, why are the tests not accurate?  Personally, I don't think the doctors know much about this virus or seem concerned about it. 

caholz33
Posts: 19
Joined: Oct 2013

Have any of your oncologists told you that the tumor itself can be tested for HPV origin, and actually must be, since as you guys observed the person may or may not still be testing positive at any given time.  I was told that my tumor would be frozen for, I can't remember, at least a year if not more, and that the test could be ordered at any time while they still had it in Pathology storage.  I discussed with rad onc ordering the test but her recommendation was not to bother since it didn't affect treatment in any way, and didn't affect survival chances significantly.  Meaning it does affect survival chances a little ... in that HPV sourced carcinomas usually respond better to the standard treatment.  This is what she told me, for what it's worth. 

sephie's picture
sephie
Posts: 521
Joined: Apr 2009

get an anoscope done.... or proctosigmoidoscopy.....colonoscopies miss anal cancer most of time......mine was missed over year.....sephie

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