Archive for the coping with HPV Category

Standstill

Posted in coping with HPV on October 15, 2012 by Confessions of LadyV69

I haven’t written about this topic for awhile, mainly because there really wasn’t much to tell. I’ve decided to do it now as I’m coming upon a dubious anniversary with it.

5 years ago this month (or in November, my memory gets fuzzier every year), I was told I had high risk HPV. I would like to say that it’s made me a stronger person and that I’ve learned a lot from it and all that jazz, but I can’t fake the funk. At least, not today. I have learned things from having it, that is true. However, there are certain things about it that I wish I didn’t have to learn. Frankly, for me at least, it has caused frustration and in some instances shame. Why? Mainly because there is still so much that is unknown about it, which results in  stigma and confusion among the population at large. Among most people, the virus usually clears the system within 2 years. Actually, some doctors don’t think it ever clears your system, that it just goes dormant. This uncertainty over just whether it even goes away completely is just one of things that frustrate me about it. I’ve had it for 5 years. And counting. As I am 43 years old, the vaccine is of no help to me. It is possible that I contracted it in my 20’s and it was dormant until 5 years ago when it was detected in a pap smear. I’ve monitored my diet and exercised to no avail over all this time in an attempt to clear it or get it dormant. I started taking vitamins again over the summer but so far nothing. I’m only taking a multivitamin for now. I’ve seen message boards and blogs with other people with the virus who say they take 25 pills a day, but I’m not personally convinced that all those pills really do anything and it’s possible that the companies making them are getting rich off of people’s suffering. I had my latest pap smear a month ago and you guessed it-the virus is still active. I have to go for like my 10th colposcopy next week because the latest pap smear showed changes in my cells. Whether this will show dysplasia or not I don’t know. According to research, once you’ve had CIN I dysplasia there is a small chance of it recurring, but lately, I’ve taken everything I read about the virus with a grain of salt because I’m not a typical case.

It’s caused me shame because I lost a man I was dating last year because I disclosed it and he ran faster than the Road Runner. Since they can’t test for it in men and it’s so ubiquitous, a couple of friends have suggested that I shouldn’t have said anything. At the time, I thought I did the right thing by letting him know all the facts, but now I’m not so sure. There is the thought among some people that the burden for this virus is unfairly placed on women since the test for it is only available for us. The HPV test hasn’t been developed for men and there’s little interest in having one for them. They have literally no knowledge of it and can pass it on to God knows how many people. Some people feel disclosing it to them serves little purpose as they can’t do anything about it and many people get it sometime over the course of their lives anyway. Supposedly, up to 80% of the population will get it sometime during their lives. That’s how widespread it is. Another thing that’s so frustrating about the virus is that there isn’t anything that can be done to prevent it outside of abstinence as coital sex isn’t the only way a person can get it. Condoms aren’t 100% effective as the virus can live in skin cells in your groin or down at the base of the penis where the condom doesn’t cover.. You can get it through skin to skin contact, oral sex, etc.  I’ve come to believe that the reason the HPV  test isn’t being developed for men is mainly for political and social reasons, rather than biological since sexual activity among men is viewed in a favorable light, particularly among those who have a lot of partners. Sexual activity among women is still viewed in a number of circles in a negative light, regardless of how many partners she has. Developing a test that is only available for women, then scaring the hell out of them when they are told they’ve tested positive and then have them shouldering the burden of informing potential partners and making them out to be pariahs is one of our society’s ways of shaming and punishing women for having sex. I’m not dismissing cervical cancer, by any means. In fact, before the pap test was developed, it was the most common cancer among women. The pap smear is mainly responsible for cervical cancer being only the 9th or 10th most common cancer among women now. I just wish that the test for HPV was expanded to include both men and women, that the stigma surrounding it would ease and that shouldering such a heavy burden for disclosure for a virus that is so ubiquitous isn’t placed on only one sex. I’ve only dated twice over the last three years mainly because of this virus. It’s way easier not to go through the drama of whether or not to disclose and I don’t have to worry about passing it on to others. To take it further, I’m not sure I ever want to date or have sex ever again. Should the high risk strain virus I have ever go dormant with me, I don’t know if I can go through years of anxiety and shame again. As there are at least 100 strains of HPV, there’s no guarantee that I won’t ever get another strain if I become intimate with another person. So by not dating and having sex again, that possibility is removed. And honestly, right now, that sounds pretty good to me. Because for something that is so widespread, I can’t remember feeling more alone. Unless you have walked in the exact same shoes I’m walking right now, you have no clue how I feel. How angry and frustrated I am. How I’ve pretty much given up on intimate relationships because I feel as though I’m damaged goods. How much I feel judged by people because I know there are those who think I deserved this because I wasn’t a “good girl” who should have known better and kept her legs closed. I also know of the racist people out there who think I must have deserved it because “all black women are hos anyway.” Unless you have walked or are walking in my shoes, you can’t understand the emotional scars. You are advised to think positive as it might affect how quickly you clear the virus, but at this point, I call BS on that. I’ve lived with this for 5 fucking years. All the positive thinking I’ve ever done hasn’t affected me ONE iota. So right now, I’m coming to a realization that I will have this for the rest of my natural life. It’s not the worst thing in the world, but it’s not the best either. I’m at a standstill and I hate it here.

Aggravation

Posted in Cervical cancer screening, coping with HPV on April 9, 2012 by Confessions of LadyV69

Remember this post where I stated that I recently went for a repeat Pap smear? I ended up calling the doctor’s office today to get the results because they hadn’t called me by the end of last week like they said they would. It’s a little annoying that I had to follow up with them in order for them to do their job, but that’s probably a whole other post altogether. Anyhoo, the virus is still active, though the pap was normal, meaning no cell changes were detected in the cervix. So I’m aggravated by that. I also stumbled upon this post the other day where a study was done that indicated that black women take longer to clear HPV. Since I do happen to be black, it would stand to reason that the study was particularly relevant to me. Initially, I wasn’t going to take that study at face value mainly due to the fact that the sample size between the white and black women was fairly small and uneven. Also, researchers at times have manipulated data so that the results can show what they want them to show, not necessarily what they show naturally. Blacks in general have a long history of distrust of the medical establishment, due to performing studies and experiments without our full knowledge or consent (Tuskegee is a prime example) as well as espousing theories that served to perpetuate racism and inequality. However, after thinking about it some more, I became infuriated. Given all the racial stuff that’s been going on of late, I was like, “Wonderful. Yet another indication on how blacks are inferior.” A professor I had in college used to put stuff like this in these terms: “Anything that is deemed positive, blacks have less of it. Anything deemed negative, blacks have more of it.” So yeah, the racists out there can see a study like this and think that it proves that all black women are ‘hos, that we have defective genes or whatever. Never mind that there are plenty of diseases, such as cystic fibrosis, that primarily affect whites and rarely affect blacks at all, but then, anything negative concerning whites are an anomaly and anything negative concerning blacks are considered normative. Given the relatively small sample size, the results could be an anomaly and the article states follow up studies are needed to see if the results are validated. Some people will offer the following arguments for the possible explanations for the measured effect:
– the effect is due to the type of HPV most common in that population, not in how black people respond to HPV
– the students measured were not typical of the general population
– the effect is correlated more with economic status than race

Be that as it may, I still feel a little uneasy about it, but until more research is done, we won’t know if there really are racial differences in reference to the virus since it may affect treatment strategies down the road. They can’t come soon enough to help me.

Guess the joke’s on me

Posted in Cervical cancer screening, coping with HPV, Racial/ethnic stereotyping on April 1, 2012 by Confessions of LadyV69

I went for my repeat pap smear the other day, in reference to the HPV. I won’t know the results until the end of this week, but as I have a particularly stubborn strain that’s one of the hardest to clear, I won’t be surprised to hear that the virus is still active four and a half years later. As I stated in an earlier post, since HPV really isn’t discussed that much, there’s a lot of stigma surrounding it. I’m sure a number of people think that I deserve it because let’s face it, “everybody knows black women are all ‘hos anyway.” See, there’s that qualifying word again- all. Which is infuriating because I’m being painted with the exact same brush as all other black women which only serves to diminish my uniqueness. Because I’m extremely sensitive and hyperaware about stereotypes of late as well as the fact that I’m royally pissed off, my attitude right now is fuck it. Many of you that are bothering to read this wouldn’t know me from a hole in the wall. There’s absolutely nothing I can tell you about me that can possibly dissuade you if you harbor that sentiment. So I know that it’s possible that you could give two shits if I tell you that I wasn’t promiscuous at all and that I could count the amount of sexual partners I’ve ever had in my life on two hands with a toe thrown in. Or that it’s likely that I had the virus for many years but it was inactive until four and a half years ago and that there’s no way for me to trace exactly who gave it to me. I take sex fairly seriously and I rarely engage in it unless I feel some sort of emotional connection with the person and if I feel the relationship is serious. Never mind that up to 80% of the population gets the virus at one time or another which includes plenty of white people. No. Because I happen to be black, I must be inherently hypersexual. Only white person are sexually pure. People are really starting to make me violently ill with their damn stereotypes. And the stigma surrounding STI’s and STD’s can be damaging because it can cause people to avoid treatment for fear of proving some damn ignoramuses right. Which can lead to infertility for some infections and diseases and if taken to the extreme, can lead to an early and needless death in the case of HPV.

I guess the joke’s on me because I usually like to believe the best in people and give them the benefit of the doubt, but lately, I haven’t been able to do that. Right now, I’ve been doubting that people are being sincere when they smile and chat with me at the water cooler or on the grocery store line, because, let’s face it, I’m not naive enough to think that people don’t harbor stereotypes about me, whether its about my hair or my gender or my skin color. In fact, I’m not naive enough to think that nobody harbors stereotypes about somebody, because, hey, we need some kind of way to group all the vast information we receive about the world around us. I won’t lie and say that I haven’t harbored any stereotypes about certain groups of people but I usually check myself and I know enough about the world to know that not everyone fits them all the time. A number of other people out there don’t do the same, however. So, I wonder if the relaxed woman at the bar wonders if I’m vegan or if I don’t bathe. Then I wonder if the white person in front of me at the supermarket checkout line thinks I’m some typical loud and bossy black woman, or if I have 7 kids with 7 different men and receiving welfare. All of this is maddening because in general, we don’t fucking talk to each other. Not about things that really matter anyway, such as racism and misogyny. Sure, if you’re black, you might have no qualms about discussing racism with other blacks or if you’re woman, you might have no qualms about discussing sexism with other women. But we often don’t discuss these things with people who are different from ourselves and therein, is the heart of the issue because these stereotypes only get perpetuated and sometimes, they blow up as in the Martin case. Until we actually speak to each other, we’ll never solve any of the real problems.

Random stuff

Posted in coping with HPV, life, Natural hair care with tags , , , on January 6, 2012 by Confessions of LadyV69

Happy new year! This is basically going to be a fairly short post as I just wanted to assure people that I was still among the land of living.

As far as that flexirod set I did on New Year’s, it was a total fail, so no pictures. As I was putting the rods in, I couldn’t get most of the pieces to roll in a spiral pattern for some reason. Most of my hair got rolled around and around in the same spot on the rod. And even with a hooded dryer, the set took forever to dry. Over TWO hours! Um, yeah. So it’s not something I’ll try again very soon. The next night, I did a three strand twistout and then on Tuesday, I did a wash and go using Shea Moisture’s Curling Souffle and diffused my hair as it was just 20 degrees out that day. I’m not sure how I feel about the stuff yet. It’s probably marketed as a cheaper alternative to KCCC, but it’s thicker and stickier than KCCC and it doesn’t elongate my curls as KCCC does either. It does define them nicely though and I’m on day four hair, something that doesn’t happen often when I do wash and goes. I did use Giovanni’s Direct Leave In underneath and that was not the business, as the Curling Souffle interacted with it my hair turned white. I had to scrunch my hair to get the white out. Next time, I’ll have to use a lighter leave in with the stuff. No pictures yet, as I didn’t think to take any. When I try the Curling Souffle again, I’ll be sure to take them.

I also went back to the gym this week and I am sore. Anytime you don’t maintain an exercise regimen for any length of time, you lose whatever muscle tone and cardio strength you gained and it can take a couple of weeks to get back to the level you were at before. I weighed myself this morning expecting to be totally displeased with the scale, but I’m actually only one pound heavier than the highest recommended weight for my height. I only gained two pounds, given all the crap I ate over the holidays. It could have been worse.

Later lovies!

 

Sloth

Posted in coping with HPV, Holidays, HPV on December 22, 2011 by Confessions of LadyV69

So it’s been a week since I last set foot inside the gym. And I’ve been eating unhealthy food on and off just about all month. According to everything I’ve seen about dealing with an STI, the best ways to clear one are eating well, exercising and possibly taking supplements. What happens during the holidays, when parties involving your friends, family and people from your office disrupt your diet and exercise schedule? Frankly, I don’t like the advice that you should fill up your plate with as many vegetables as you can find while only taking small bites of meat, starch or dessert. Often, the most fattening, decadent or most favorite comfort foods are only available during the holidays. Ignoring these foods just makes me feel more deprived and I’m more likely to binge on them and overeat. And taking just one bite of food from any one of those categories frankly does nothing for me. So what I usually do is get a reasonable portion of the food or dessert and chow down without guilt. Also, the advice to go for a walk before or after the party isn’t always practical. The weather is often not that great this time of year. Or you may be bogged down with the gifts you need to get and all the decorating, cooking and cleaning you need to get done, so fitting in a few minutes of exercise can be impossible.

How does this affect HPV and the likelihood that it goes dormant? I haven’t seen anything that answers this question definitively, though from what I’ve seen, there is some implication that if you let up on your diet and exercise regimen, the virus may be more likely to remain active. Honestly, by this time of year, I’m bored with counting calories and going to the gym. I want to enjoy myself and take a break. Reconnecting with loved ones I don’t often see and allowing myself to indulge in my favorite comfort foods take precedence over my health, even though I’m told that those things shouldn’t. After four years of living with HPV and counting, I’m starting to believe that a couple of weeks of junk food and lack of exercise won’t affect my likelihood of getting it dormant one way or the other. Even before I was diagnosed with it, I usually took a break the last couple of weeks in December and eased up on my diet and exercise. It usually results in weight gain of a few pounds, but once I started back on my regimen after the holidays, the pounds came off within a few weeks. No reason why that won’t happen this time. But there’s more at stake where my health is concerned besides weight gain. The thing is, there are many days where HPV doesn’t even cross my mind. It doesn’t define me. I’m still the same person I was before the diagnosis and I’ve conducted my life the same way. Worrying about it would make it hard for me to get on with my life when I still have a lot of things to experience. Somehow, things seem different this year because I’ve made it public and a part of me feels like I should be the poster child for treating it aggressively by doing all the “right things”and I’m letting people down when I don’t. At the moment, I don’t feel like being perfect. I don’t feel like being vigilant over it. Right now, I don’t want to deal with it at all. I want a break. I want to enjoy myself. I want this time to recharge before I’m ready to get back to the grind because the constant vigilance frankly makes me feel resentful of those who don’t have this infection. I don’t think I’m asking a lot.

Are they crazy?

Posted in Cervical cancer screening, coping with HPV, HPV with tags , , , , , , , on November 1, 2011 by Confessions of LadyV69

I came across something today that made me furious. There’s a movement among some experts to change the current cervical cancer screening recommendations. Right now, it’s recommended that screening begin at age 21 once a year. If you have normal pap smears three years in a row, you can move to being screened once every three years. They also state that women under 30 not be tested for HPV, since it’s assumed that most women in their 20’s have the virus and that for many of them, it will go dormant within 2 years. Women who test positive for HPV over 30 years old (like yours truly) are thought to have persistent infections and are to be monitored closely. Supposedly, this was to reduce the number of women who were being treated unnecessarily for a condition which regresses in a lot of cases. However, some experts are now proposing to change the screening recommendations to where women over age 21 years only get pap smears once every three years, regardless of prior screening results. They also recommend against screening for the HPV virus for women over 30 unless warranted. Again, this is supposed to reduce the number of unnecessary tests and invasive procedures that women undergo if there’s an issue. They also claim the change is needed because cervical cancer isn’t that common these days due to widespread screening and it often isn’t detected unless the woman has gone more than 5 years without being screened.  Personally, I think the proposed changes are BS and it’s being done more in the interest in saving money than in saving people’s lives. In a lot of articles on the internets, it’s stated that cervical cancer doesn’t progress very quickly, so waiting three years between screenings should do no harm. There are some women who’d disagree-those who went from moderate or severe dysplasia to a cervical cancer diagnosis within a one or two year span. Waiting three years between screenings could literally mean the difference between life and death for me. Also, conventional pap smears alone don’t tell you if you have the HPV virus. They just detect abnormalities in your cervix. And the test gives false readings around 30% of the time. The HPV test is crucial to see exactly what the abnormality is. It’s also more accurate than the conventional pap test. It also gives false readings only around 5% of the time. I’d hate to think how I would fare if the more accurate HPV test is never given to me. I’d also hate to think about the possible increases in cervical cancer rates or deaths that might result if these recommendations become standard practice. Each human life is precious and each deserves to live a life free from cancer – ESPECIALLY WHEN IT IS PREVENTABLE! That is the point these people in some ivory tower making these dangerous recommendations miss. Unlike some other forms of cancer, cervical cancer is preventable and early detection plays the greatest role in ensuring less and less women each year contract it. While the hope is the vaccine will be another form of prevention, it still is in it’s early years and quite controversial. Early detection on the other hand is provable and something we now know prevents the development of cervical cancer if proper care is given.

You can see more info on these recommendations here and comment on them. The more people that voice their objection, the more likely these ivory tower so-called experts will back off. My life may well depend on them backing off. Look what happened when Bank of America proposed a $5 fee just for using your debit card. People were so outraged that they backed off. Let’s tell them that women’s lives are valuable and that we deserve the best care possible.

Sorting

Posted in coping with HPV with tags , , , , , , , on September 29, 2011 by Confessions of LadyV69

Just wanted to discuss something that I’m just beginning to realize. So three days ago, I got the results from the colposcopy I had early last week in reference to the HPV. It was sort of good news. I don’t have any dysplasia, or precancerous, abnormal cells. That’s been the case for over a year. For about two years before that, I had mild dysplasia. According to the research I’ve been doing, the recommended course of treatment is to really do nothing, since mild dysplasia tends to clear about 70% of the time within 2 years. I’ve cleared the dysplasia but I haven’t cleared the virus completely. According to what I’ve been able to ascertain, the virus itself could go into a dormant state at any time. With the strain of the virus that I have, I’m being told on various STD sites online that I should consider myself lucky. Other people have had moderate dysplasia progress into cervical cancer within a year. It’s still very frustrating because I’m still testing positive for HPV even though I don’t have dysplasia. I’m not completely out of the woods in reference to the dysplasia either. There’s no guarantee that it won’t return in the future and come back in a more severe form. I’m working on accepting the fact that I’ll have to be monitored closely for possibly the rest of my life.

The saddest thing is that a lot of the stuff I just posted aren’t things that my doctor told me. I had to find a lot of this stuff out through the Internet. Many doctors are rushed and cram a lot patients into their offices every day, so they can’t take the time to thoroughly explain things to you. The end result is that you’re clueless because you really don’t know what kinds of questions to ask, so the quality of care you get is fairly haphazard. Having been in the managed care industry for 11 years, I can tell you that the main reason why this happens is because the government and commercial health plans are cutting reimbursement to doctors, so they have to make up that revenue by cramming more and more patients into their day, meaning they spend less and less time with you. You may wonder why you’re paying more for your health plan if the doctors aren’t getting more money. Well that’s primarily because the increase isn’t necessarily going to the doctors or to improve your care, but to line the pockets of senior executives. All this to benefit the avarice of a few.

Also, let’s face it, the medical establishment is racist and sexist. Generally, diseases that affect mainly women and people of color don’t get nearly the same amount of funding for research as diseases that primarily affect white men, since women and people of color are marginalized in our society. And for diseases that are common across all racial and ethnic groups and both sexes, sometimes symptoms that are common in one race and/or gender will be different among another race/gender. For example, most of the studies in the past concerning heart attacks were done on white men and the most common symptom is the feeling of your chest being grabbed. However, women who have heart attacks don’t have the same symptoms as men do. Women often report nausea and tingling during a heart attack, when men usually report that feeling that their chest is being hammered. As a result, heart attacks in women are more likely to be missed and women are more likely to die from them. Shocking, isn’t it? I have second hand experience with this because this happened to the mother of a supervisor at my last job. It was thought that her nausea was food poisoning but she died minutes after reaching the ER. The autopsy showed she had a heart attack. This needless death might have been prevented if doctors and the public in general were more educated about these differences. Furthermore, partly due to marginalization of a number of groups and partly due to the fact that we’re a litigious society, doctors either won’t prescribe all the tests and treatment that someone needs believing that the person will be noncompliant anyway or they’ll go overboard and send people for tests and treatments that are unnecessary in order to cover their behinds. The marginalization issue and the overuse of litigation are issues that obviously go beyond the medical establishment. This isn’t to say that the way that I’ve been treated for the HPV is lacking. From what I’ve been able to ascertain from the Internet, my doctor has been doing all of the standard things. I’ve seen stories where some people’s doctors suggest hysterectomies for severe dysplasia, when it isn’t even considered an invasive cancer, but pre-cancer. My main complaint is that I’m not able to communicate with the doctor about the condition in the way I’d like to, bu I know why I’m not able to. My past denial about the matter prevented me from reaching out and advocating for my health and I’m starting to realize that I can’t afford to keep sticking my head in the sand. I need to take greater responsibility for advocating for my health as nobody else is about to do that. I’m lucky in that my condition has never gotten to the point where it was severe but if it did, it’s possible that I might have agreed to treatments that weren’t in my best interests because I felt helpless and hopeless. The information that’s out there is actually a little overwhelming but it’s one of my best defenses against the virus. It’s best to advocate for yourself and find out as much information as you can about any illness, not just major ones like cancer, so you can make decisions that you’re most comfortable with. I wish it hadn’t taken me four years to reach that conclusion.