cervical cancer

Save the Pap Smear! A DES Daughter’s Perspective on Cervical Cancer and the HPV Vaccine

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DES daughters have unique credentials and knowledge regarding cervical cancer. We have become cervical cancer “experts” based on our own shared experiences and through our knowledge of DES research. We also have the advantage of acquiring this knowledge about cervical cancer before HPV was even detected; and before HPV tests and HPV vaccines were developed.

We know that there are two main types of cervical cancer: the slow-developing squamous-cell cancer (squamous carcinoma); and the much more aggressive glandular-cell cancer (adenocarcinoma). We know because we are at higher risk of both types.

In retrospect the DES story is a result of serendipity, a confluence of very specific and unique circumstances. DES emerged as a public health crisis in 1971 when it was discovered that DES daughters were at risk of an aggressive, glandular cancer of the cervix/vagina because of their in utero exposure to DES.

In a strange way it was actually fortunate that the ‘DES cancer’, clear cell adenocarcinoma of the cervix/vagina, was so unexpected and so shocking that it was noticed by clinicians, i.e. a rare virulent cancer previously only seen in post-menopausal women was suddenly being diagnosed in young women and girls.

It was also fortuitous that these cancer cases were located in a very specific geographical region- a particular hospital, the Vincent Memorial Hospital, in Boston. The original and most influential promoters of DES as a pregnancy maintenance treatment were The Smiths of Boston: Dr George VS Smith, Head of the Gynecology Department at Harvard University Medical School from 1942 to 1967; and his wife Dr Olive Watkins Smith, a biochemist. The ‘DES Cancer’ was originally known as ‘The Boston Cancer’

In retrospect, it was also fortunate that the use of DES during pregnancy was always controversial and that clinical trials were undertaken in the early 1950s. In fact one to the earliest large-scale, prospective, double-blind, randomised clinic trials (RCT) reported in the medical literature was conducted on DES and involved 2,000 women.

As a result of these circumstances – the sentinel finding of the ‘DES Cancer’; and the existence of research cohorts that could be reassembled – there has been follow-up in the USA into the long-term adverse outcomes of DES exposure. The cohorts of these original RCTs were reassembled providing a strong research tool – DES mothers could be compared to mothers in the control group; DES daughters with the control group daughters; DES sons compared to the control group sons.

The DES Cancer: A Decades-Long Side Effect

The ‘DES Cancer’ finding sent shock waves through the medical science community. Up until this time, based on the Thalidomide tragedy, it was believed that any adverse outcomes to a drug would be evident soon after the exposure, as in “birth defects”. With DES and clear cell adenocarcinoma of the cervix/vagina, the adverse outcome was expressed decades after the exposure.

It was found that the timing of the DES exposure was critical; and, using mice, researchers were able to examine more precisely the effect of timing and dose. The mouse is a valid model as the differentiation stages of the reproductive tract is similar and comparable to that of a human. By correlating both dose and time of exposure, researchers were able to replicate in mice the adverse health outcomes found in the human DES population. A 1981 landmark publication, Developmental Effects of DES in Pregnancy edited by Arthur L. Herbst and Howard A. Bern, brought together leading experimental researchers and expert DES clinicians.

DES - Herbst, Berne study

And this collaboration continued. The DES experience was central to the development of the scientific endocrine disruption paradigm. DES is the primary model for environmental endocrine disruptors.

From Lessons learned from perinatal exposure to diethylstilbestrol

“The synthetic estrogen diethylstilbestrol (DES) is well documented to be a perinatal carcinogen in both humans and experimental animals. Exposure to DES during critical periods of differentiation permanently alters the programming of estrogen target tissues resulting in benign and malignant abnormalities in the reproductive tract later in life.

Using the perinatal DES-exposed rodent model, cellular and molecular mechanisms have been identified that play a role in these carcinogenic effects. Although DES is a potent estrogenic chemical, effects of low doses of the compound are being used to predict health risks of weaker environmental estrogens. Therefore, it is of particular interest that developmental exposure to very low doses of DES has been found to adversely affect fertility and to increase tumor incidence in murine reprodu ctive tract tissues. These adverse effects are seen at environmentally relevant estrogen dose levels.

New studies from our lab verify that DES effects are not unique; when numerous environmental chemicals with weak estrogenic activity are tested in the experimental neonatal mouse model, developmental exposure results in an increased incidence of benign and malignant tumors including uterine leiomyomas and adenocarcinomas that are similar to those shown following DES exposure.

Finally, growing evidence in experimental animals suggests that some adverse effects can be passed on to subsequent generations, although the mechanisms involved in these trans-generational events remain unknown.

Although the complete spectrum of risks to DES-exposed humans are uncertain at this time, the scientific community continues to learn more about cellular and molecular mechanisms by which perinatal carcinogenesis occurs.

These advances in knowledge of both genetic and epigenetic mechanisms will be significant in ultimately predicting risks to other environmental estrogens and understanding more about the role of estrogens in normal and abnormal development.”

From another study looking at the role of endocrine disrupting compounds and developmental timing on female reproductive disorders:

“The ability of synthetic chemicals to alter reproductive function and health in females has been demonstrated clearly by the consequences of diethylstilbestrol (DES) use by pregnant women…. The daughters of women given treatment with DES were shown to have rare cervicovaginal cancers. Since the initial 1971 publication linking treatment of women with DES and genital tract cancers in offspring, other abnormalities have been observed as the daughters have aged, including decreased fertility and increased rates of ectopic pregnancy, increased breast cancer, and early menopause. Many of these disorders have been replicated in laboratory animals treated developmentally with DES. The lessons learned from 40 years of DES research are that the female fetus is susceptible to environmentally induced reproductive abnormalities, that gonadal organogenesis is sensitive to synthetic hormones during a critical fetal exposure window, that reproductive diseases may not appear until decades after exposures, and that many female reproductive disorders may co-occur.

Other synthetic chemicals used in commerce are known to mimic hormones and have been shown previously to contribute to disease onset. These chemicals are called endocrine-disrupting compounds (EDCs). Endocrine-disrupting compounds are either natural or synthetic exogenous compounds that interfere with the physiology of normal endocrine-regulated events such as reproduction and growth. Although there are many hormonal pathways through which EDCs can act (e.g., agonists or antagonists of steroidal and thyroid hormones), many of the reported EDC effects in wildlife and humans are caused through alteration of estrogen (E) signaling. This is because E signaling is evolutionarily conserved among animals and is crucial for proper ontogeny and function of multiple female reproductive organs

The purpose of this article is to establish the state of the science linking EDC exposures to female reproductive health outcomes. After introducing several topics crucial to understanding the etiology of female reproductive disorders, we present an overview of ovarian, uterine, and breast development, as well as how exposure to EDCs may contribute to some of the most prevalent reproductive disorders in these organs and to pubertal timing. Emphasis is placed on the period of development that currently is known to be most susceptible to disruption and harm by exposure to EDCs. To conclude, we present both specific research needs and several general initiatives needed to improve women’s reproductive health.”

DES Mothers and Breast Cancer

Another example of serendipity concerns the discovery that DES mothers have a higher incidence of breast cancer because of their DES exposure. When the ‘DES Cancer’ was discovered, DES Follow-up clinics were established for DES daughters to attend for the recommended special examination. The nurse in charge of one of these clinics, on chatting to the DES daughters before they had their examination, was struck by the number of daughters who were upset that their mothers had been diagnosed and/or died from breast cancer. This anecdotal observation led to research being carried out and the 1984 publication Breast cancer in mothers given diethylstilbestrol in pregnancy.

The findings were that DES mothers were 40 to 50% more likely than the control group to develop breast cancer. The authors noted a trend that the DES mothers developed the cancer at an earlier age; and that they developed a more aggressive form of the disease with a higher mortality rate.

This finding was further confirmed with animal modelling. Of course it has been known for decades that DES caused mammary cancer in experimental animals. As pointed out by Pat Cody in DES Voices: From Anger to Action (2008),  animal studies dating from the 1930s showed that oestrogen administered to animals – cats; guinea  pigs; monkeys; rabbits; and especially in what came to be the favoured mammals, mice and rats – showed reproductive tract malformations and cancer.

DES was synthesised in 1938 by a team of scientists in England, headed by Sir Charles Dodds. Later in 1938 Dodds reported that orally active oestrogen, including DES, interrupted early pregnancies in rabbits and rats. In 1938, a French researcher reported that male mice treated with DES developed breast cancer.[Lacassagne A (1938) Apparition d’adenocarcinoma mammaires chez des souris males traitees par une substance oestrogene synthetic. Comptes Rendus Biol. (Paris) 129.]

As explained in Barbara Seaman’s highly recommended book The Greatest Experiment Ever Performed on Women: Exploding the Estrogen Myth (2003), Dodds was aware of what a powerful and potentially carcinogenic drug he had synthesised. In the months following the discovery Dodds became increasingly concerned about the carcinogenicity of the newly synthesised drug. In his laboratory he noticed that men on his staff who handled the stilboestrol powder were growing breasts, suggesting to him stilboestrol might cause breast cancer in men. He suggested that animal studies be carried out looking at the carcinogenicity of stilboestrol in male rodents. In 1940 a paper was published showing that stilboestrol caused mammary cancers in both male and female mice.

DES: Not One but Two Cervical Cancers

That DES daughters also had a higher incidence of squamous-cell abnormalities (when compared to the control group) was recognised quite early on. At the same time it was reported that DES daughters suffered much higher rates of cervical stenosis following minor procedures.

In the early years many of us purchased medical dictionaries and headed off to medical libraries to look at source material. DES Action has always strived to make information contained in medical journal articles accessible to our members. We have a long history of sharing information, reviewing journal articles and explaining terminology, thus empowering members to make informed decisions about their health care. The issue of how to treat dysplasia was featured in our newsletter DESPATCH a number of times. For example, DESPATCH No. 9 November 1982, looked at dysplasia treatment options and cervical stenosis, and explained the terminology.

DESPATCH No.9 p.1

I think our introduction to this edition of DESPATCH is worth repeating:

“The actual changes that DES exposure causes are quite complex. As a result of this, a DES daughter not only has to cope with the actual screening examination, but with an entirely new language.

This issue of DESPATCH is rather dry and technical: We concentrate on defining terms and de-mystifying the jargon. However, it is important that you are not intimidated by the jargon. Remember a true expert will not hide behind jargon but will be able to explain things simply and clearly. So, if you don’t understand what the doctor is saying, say so and ask that it be explained again….and again!”

It was hypothesised that the DES-related structural changes in both the cervix and uterus may be associated with connective tissue alterations that predispose to abnormal healing and increased propensity to cervical stenosis. Therefore the recommended management of DES daughters with these squamous-cell abnormalities was monitoring with minimal intervention. Those of us who knew we were DES exposed, and were attending DES follow-up screening clinics, were in the privileged position of having expert monitoring without intervention.  And that is why many DES daughters have personal experience of even high-grade squamous-cell abnormalities resolving over time without any treatment.

That’s not to say it was easy, particularly in the early years. Often we were being called back for 3 monthly checks. But as time passed, and we experienced that the abnormalities ‘matured’ or resolved, we became more relaxed about squamous-cell abnormalities.

We used to joke that discussing cervix status seemed to be almost a defining feature of our group –  nowhere else you could comfortably talk about the state of your cervix.

As I said we were in a privileged position of having expert screening with clinicians who explained and discussed issues. Over the years I’ve had three occasions when the clinician noted that “according to the textbook” he should probably do a biopsy but, as he was confident it would resolve, he would leave it. As I knew he was an expert, and that he was referring to squamous-cell abnormalities, I was happy to go along with this suggestion.

Of course lurking in the background was the knowledge that we have a life-long risk of the ‘DES Cancer’, clear cell adenocarcinoma of the cervix/vagina.  Initially we were screened every 6 months, but then it went to annual checkups.

DES Daughters and the HPV Vaccine

So when there was news of a ‘cervical cancer vaccine’ being developed, we naturally were very interested and read up on it. However, the more we read, the less sense it made. When we realised it was for squamous-cell cervical cancer, the unanimous opinion was “Why bother?!’  It wasn’t even a cervical cancer vaccine, but a HPV vaccine (or, to be pedantic, a ‘HPV strains 16 and 18’ vaccine).

Why would you bother having a part-HPV vaccine when we knew through experience that even high-grade squamous-cell abnormalities usually resolved spontaneously without any intervention?

The vaccine was designed to prevent the very abnormalities that empirical evidence of the National Cervical Screening Program (NCSP) showed would resolve anyway – crazy. We looked on in bemusement at the HPV hysteria that erupted in 2006. It was an extraordinary example of manipulating the media for commercial gain when the drug manufacturer orchestrated the listing of Gardasil on the Pharmaceutical Benefits Scheme and the National Immunisaton Program.

This battle to list the HPV vaccines, and how commercial pressure and political opportunism threatened the independence of Australia’s healthcare system, is discussed in Healthcare’s Sticking Point.

It was a classic textbook example of disease mongering: Take a common, essentially benign condition (HPV infection) and it suddenly and only becomes “serious” or “life-threatening” when Big Pharma has a product to sell (i.e. HPV vaccine).

It was disgraceful that public health money was diverted into the HPV industry. In terms of women’s health, it would have been more productively spent on education programs and publicity campaigns on the value of Pap smears, in order to raise the participation rate of the NCSP; or on research into a screening test for ovarian cancer.

All we could do was shake our heads in bewilderment: If the government wanted to waste billions of dollars on a school-based vaccine program of unproven value, so be it. At least there was the safety net of the NCSP and women having regular Pap smears.

And now that is under threat. The proposed changes to the NCSP, due to be implemented on 1 December 2017, is that HPV testing has been fast-tracked to become the primary cervical screening tool; that the commencement age be raised to 25 years; and the screening interval be extended to 5-yearly.

This is a public health crisis in the making. There are two type of cervical cancer and the proposed policy is focused on just one. It is modeled exclusively on squamous cancer and ignores empirical evidence from the NCSP that glandular cancer now represents approximately 30% of cervical cancers diagnosed in Australia today.

This will put the lives of women, particularly young women, at risk.

As there appears to be a push worldwide to introduce this screening regimen (HPV testing as the primary cervical screening tool; commencement age 25 years or later; and 5-yearly screening intervals) potentially millions of women are at risk. It could be a medical and public health disaster on a scale never before seen.

If the DES experience teaches us anything, it is to remain vigilant about the efficacy and safety (both short-term and long-term) of pharmaceutical products, and this includes vaccines. It involves understanding the different types of cervical cancer; understanding the various risk factors, including HPV and endocrine disruptors; and being informed about the benefits and limitations of the screening tests, such as the Pap smear and the HPV test.

Stay with us, as we cover each of these topics over the next few weeks.

DES Daughters, Sons, and Grandchildren – Share Your Story

If you are the daughter, son or grandchild of a woman given DES during pregnancy, please share your story with us.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on May 1, 2017.

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The HPV Test Versus the Pap Smear: What Women Need to Know

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In a previous article, I wrote about how, as a DES daughter, I felt I had a distinct advantage of gaining my understanding of cervical cancer and cervical screening programs before the human papillomavirus (HPV) was even detected; and before HPV tests and HPV vaccines were developed and marketed. I think I would have struggled to understand the issues involved in screening for cervical cancer if trying to do so just in the last decade. With all the media hype, controversy, and general confusion that abounds in this area of women’s health, gynecological care has become increasingly difficult to navigate.

In Australia where I live, on  1 December 2017 radical and sweeping changes are about to be made to the National Cervical Screening Program (NCSP) that will impact women’s health significantly. I should note, although I focus on the changes made being made to the NCSP in Australia, other countries have considered or have introduced similar programs. These programs affect how and when cervical cancer screenings take place and, more importantly, whether and which types of cancer will be detected.

Cervical Cancer Screening in Australia

Introduced in 1991, the current NCSP offers routine biennial Pap smear screening for all women aged 18-69 years. Commencement age is 18 years, or two years after beginning sexual activity (or ‘sexual debut’, as it is quaintly termed), whichever is the later. The program has had great success. As a result of its introduction, both the incidence and mortality of cervical cancer has halved to one of the lowest in the world.

“Cervical cancer incidence for women of all ages remains at an historical low of 7 new cases per 100,000 women, and deaths are also low, historically and by international standards, at 2 deaths per 100,000 women.” Source: Australian Institute of Health and Welfare

Now this is all under threat and the NCSP as we know it is about to be decimated. Rather than focus on cervical cancer detection, and thus, prevention, with biennial Pap smears, the new program will rely primarily on HPV vaccination and triage HPV testing. The Renewed NCSP will offer a “cervical screening test” to women only at 5-yearly intervals, and only beginning at age 25 years.

Moreover, this “cervical screening test” will not be the Pap smear. Women will only have a Pap smear if they test positive to HPV. Not only is HPV testing being introduced for the first time as a public health  screening strategy; it is being fast-tracked to become the PRIMARY screening tool.  This means a Pap smear will only be subsidized by the Government under the Medical Benefits Schedule (MBS) if you first test positive to HPV.

This is a huge and, I would suggest, risky change to the cervical cancer screening program. The Renewed NSCP is based on predictive statistical and economic modelling  around the HPV vaccine and triage HPV testing.

There is little regard for the empirical evidence and lessons learned from the 70+ years since the Pap smear test was developed; the  50+ years of organized cervical screening in Australia; and the 26 years of empirical evidence and reporting from the world-acclaimed NCSP. All this accumulated evidence and wisdom is seemingly being ignored, and this worries me. As a DES daughter I believe it is crucial that we remember and learn from past experiences.

Understanding the Reproductive Tract and Cancer

The aim of population cervical cancer screening programs directed specifically at asymptomatic women is to reduce the incidence of invasive cervical cancer. In order to understand why relying on the HPV vaccine and triage HPV testing to prevent incipient cervical cancer is problematic, it is important to understand the types of cervical cancer. Bear with me, this information is a bit technical and complicated, but it is critically important for women to understand the differences to enable educated choices about reproductive health.

Two Types of Cervical Cancer

Cervical cancer affects the cells of the uterine cervix, which is the lower part (or ‘neck’) of the uterus where it joins the inner end of the vagina. It is where the Mullerian-derived glandular tissue from the upper genital tract meets the squamous tissue of the lower or outer genital tract.

 Anatomy of the Cervix and Nearby Organs

Anatomy of the cervix

 

Source: National Cancer Institute<NCI Visuals Online>Illustrated by Don Bliss

Cancers of the upper genital tract (e.g. of the ovaries, Fallopian tubes and endometrium) are glandular cell cancers. Cancer of the cervix can be either squamous or glandular.

The Cells of the Cervix

Cells of the cervix

 

Source: National Cancer Institute<NCI Visuals Online>Illustrated by Don Bliss

There are two types of cervical cells – squamous and glandular. The Pap smear takes sample cells from the transformation zone of the cervix where the squamous cells and glandular cells meet. This is where most cervical abnormalities and cancer are detected as the cells are undergoing constant change. The sample cells are then examined under a microscope for any abnormal (dysplastic) change. Any abnormalities (both squamous and glandular) are then classified and graded by the cytologist.

Squamous Cell Abnormalities and Cancer

Any abnormal changes to cervical squamous cells typically have a long lead time before cancer, with several preliminary stages before invasive cancer. It is not an inevitable linear progression, as the vast majority of low-grade squamous abnormalities resolve without treatment. Even many high grade abnormalities may regress; if not, they can be treated by a range of procedures.

The terminology has changed over the years, but all the following terms refer to squamous-cell abnormalities: mild, moderate and severe dysplasia; squamous carcinoma in situ (SCIS);  HPV effect, HPV wart effect; cervical intraepithelial neoplasia (CIN); CIN1, CIN2, CIN3; squamous intraepithelial lesion (SIL); LSIL and HSIL.

It is critically important to realize that HPV infection relates ONLY to squamous cell abnormalities.

“The papilloma viruses are attracted to and are able to live only in certain cells called squamous epithelial cells. These cells are found on the surface of the skin and on moist surfaces (called mucosal surfaces).”
Source: American Cancer Society

Glandular Cell Abnormalities and Cancer

Like the glandular cancers of the upper genital tract, cervical glandular cancer is more aggressive and has a shorter lead time. There are two precursors to (invasive) adenocarcinoma: atypical glandular cells and adenocarcinoma in situ (AIS). In practice there is no ‘low grade’ glandular-cell abnormality, as any atypical change is referred for immediate colposcopic investigation. Cervical adenocarcinoma is a relatively new phenomenon, with AIS being first described in 1953.

The Success of the Pap Smear and Cervical Screening Programs

The Pap Smear

The Pap smear is named after Dr. George Papanicolaou  who developed the test in  1943 . A sample of cells is collected from the transformation zone of the cervix. With the conventional Pap smear, the cells  are smeared onto a glass slide, stained and examined under a microscope for any abnormalities. Liquid Based Cytology (LBC) is a newer technology that involves a different method of preparing cervical samples for examination. The cells are placed in a vial containing preservative liquid. The sample is then sent to the laboratory for processing to remove obscuring material  before being placed on a slide.

Any cell abnormalities (both squamous and glandular) detected on cytology are then classified and graded, as discussed above. Hence, the Pap smear detects the early precursors of both types of cervical cancer.

The Pap smear became widely accepted as a very effective screening test for cervical cancer: In countries that had programs, morbidity and mortality from invasive squamous cell cancer was considerably reduced.

It can be seen in the following diagram that in Australia the incidence of squamous-cell cancer was more than halved between the years 1982-2002.

Declining cervical cancer rates Australia

Source:  Australian Institute of Health and Welfare

Of the cervical cancers diagnosed in 2012, 69.3% were squamous cell cancer. Figure 4.3 shows that for the last 15 years, the relative incidence between squamous and glandular cancer has remained more or less constant at around 70% and 30%, respectively.

The empirical data from the NCSP shows consistently that the biggest risk factor for cervical cancer is not having regular biennial Pap smears. Of Victorian women diagnosed with cervical cancer, 40% had never been screened, and a further 35% were “lapsed screeners” (that is, they hadn’t had a Pap test in the 2.5 years prior to their cancer diagnosis).

Whereas routine Pap screening programs dramatically reduced invasive squamous cancer in Western nations; without proper infrastructure and resources, the rates of cervical cancer in developing nations remain high. That the global burden of cervical cancer is greatest in developing countries is shown in Figure 1, Cervical Cancer: A Preventable Death.

HPV and HPV Testing

HPVs are a group of more than 150 related viruses. Each HPV virus in the group is given a number, which is called an HPV type or strain. The papillomavirus viruses are attracted to and are able to live only in certain cells called squamous epithelial cells. These cells are found on the surface of the skin, and on moist surfaces (called mucosal surfaces). Of the more than 150 known strains, about 75% HPV types are called cutaneous because they cause warts on the skin. The other 25% of the HPV types are mucosal types of HPV, and genital HPV types are in this group.

Types of HPV

Source: American Cancer Society

Genital HPV is a very common sexually transmitted infection (STI). It is spread mainly through intimate direct skin-to-skin contact. It’s not spread in blood or other bodily fluids. Genital HPVs are classified as “low risk”: HPV types that tend to cause warts not cancer; or “high risk”: oncogenic HPV types that have the potential to cause cancer.

Like any virus, genital HPV continually evolves and mutates. In Australia of the 40 known genital HPV strains, 15 are considered oncogenic, with HPV types 16, 18 and 45 being the most prevalent.

Infection with one or more of the 40 HPV types is very common. HPV is such a prevalent STI that it could be considered a normal part of being sexually active. Most people will have HPV at some time in their lives and never know it. It is asymptomatic. You may only become aware of HPV is you have an abnormal Pap smear result or if genital warts appear.

Although HPV infection is very common, in most people it clears up naturally in about 8-14 months. In a small number of women, the HPV stays in the cells of the cervix. When the infection is persistent, not cleared readily, there is an increased risk of developing squamous CIN abnormalities.

The HPV Test

In contrast to the Pap smear, the HPV test is not a test for cancer.  Cells are collected from the cervix  as with a Pap smear but then in the laboratory undergo HPV genotyping to see if one or more oncogenic HPV types are present.

The proposed primary triage HPV test in the Renewed NCSP involves partial HPV genotyping. According to the Medical Services Advisory Committee (MSAC), the authority overseeing the Renewed NCSP,  the HPV test must have HPV genotyping capacity to identify HPV 16, 18, and possibly 45.

HPV and Primary Cause Theory

In countries that don’t have Pap smear screening programs, the burden of invasive squamous cancer is great. The precursor CIN abnormalities cannot be detected and hence can progress to invasive cancer. HPV testing provided the tool to look at HPV genotype distribution in invasive and pre-invasive cancer in developing countries. Significant geographic differences in HPV type prevalence  were found in different regions worldwide.

During the 1990s hundreds of studies, both large and very small, were undertaken in countries that didn’t have Pap smear screening programs. Meta-analysis of these studies led to the premise that HPV is the primary cause of squamous cancer: Infection with a persistent oncogenic HPV type is the necessary first step before any precursor CINs can develop. This premise that HPV is the primary cause of squamous cell cancer is shown diagrammatically in Figure 1  Natural history of HPV infection and cervical cancer on page 13 of the Medical Services Advisory Committee (2014)  MSAC Outcomes – Application No. 1276 report.

In developing countries without Pap smear screening programs, a primary triage HPV testing strategy makes sense.

“In populations where cytology programmes are either not in place or are not efficient, HPV testing should now be considered and evaluated as an alternative test for primary screening.” Source: Bosch et al (2002)

Women who test positive to oncogenic HPV types can then be prioritised to access the limited health care resources available.

This strategy does not make sense, however, in countries with routine Pap smear and gynecological care; and where 30% of the cervical cancers diagnosed are glandular-cell cancers.

If HPV Tests Do Not Detect Cancer, Why Are We Replacing the Pap Smear?

This is a very good question.

An even better question is: Why would you have a Pap smear and not find out the result?

As of 1 December, Australian women will be offered a “cervical screening test”. They will have a LBC Pap smear, where the cervical cells are placed in a vial containing preservative liquid. Instead of being  sent to a cytology lab to be screened for cell abnormalities, the vial will be hijacked to a lab for partial HPV genotyping. If it tests positive to HPV 16, 18, or (possibly) 45, the same specimen of cells will then be reanalysed using reflex cytology to see if any squamous or glandular cell abnormalities are present.

How bizarre is that? How very Kafkaesque.

Let’s take a deep breath and heed some wisdom from the recent past. According to the NCSP webpage (2009):

Should I have a special test for HPV?

There is an HPV  test available which can identify strains of HPV. This is not a test for cancer…

Because most HPV infections usually resolve naturally, and there is not cure, there is little reason to have  an HPV test…

While a Pap smear cannot identify which type of HPV is present, regular Pap smear will make sure any changes that occur are identified early and managed effectively.

The Bottom Line on Pap Smears Versus HPV Testing

The Pap smear is a screening tool that detects CIN abnormalities and adenocarcinoma in situ (AIS), the precursor to adenocarcinoma.

While HPV is the primary cause of squamous cancer; evidence from the NCSP consistently and conclusively shows that the biggest risk factor for cervical cancer is not having regular biennial Pap smears.

Bottom line, the Pap smear detects abnormal cervical cells, both squamous and glandular, and is a long established, very successful screening test for cervical cancer. The HPV test screens for a STI. As a woman, I would argue for a regular Pap smear.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was originally published on June 27, 2017. 

Unspoken Dangers of LEEP Procedures

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Dyscariosis and the Threat of Cervical Cancer

I was 33. I was in love, although more realistically heartbroken and pining.  This wasn’t unusual for me, I was never very good at choosing a partner, I was fiery and volatile in my lifestyle, and had gone through a series of painful and passionate relationships in my late 20s and early thirties. My addiction to love was always to my detriment. When I fell, I fell hard, and always with the wrong ones. But yet somehow despite the pain, in this wild messy state, I thrived. It drove me forward. It was part of me. I was addicted to life and love.

I saw myself growing old, laughing. I loved to dance, to flirt, to draw and create characters in my mind and in my work. I used to cry, laugh and make jokes. I was employed in a creative job and was passionate and truly alive.

In August 2010, after a routine cervical smear. I was informed that I had a small cellular change in my cervix, known as mild dyscariosis, threatening cancer if left untreated. I was told that I would have to undergo a minor procedure to remove these cells.  The procedure was called a Loop Electrosurgical Excision Procedure, or LEEP. It is also known as LETZ in the US, and is similar to a Cone Biopsy.

No Nerve Endings in the Cervix?

I was slightly worried, but reassured by my doctor that there was nothing to even consider as a side effect with the LEEP procedure. There was no risk at all, she said, as (which you may also have been told), there are apparently ‘NO’ nerve endings in the cervix.

I was surprised and dubious at this statement, having not only experienced pretty much all my pleasure and emotional pain from precisely that region, but also been used to very intense cervical contractions, both though orgasm, and the dull aches of menstruation.

I went online, and even more surprising found nothing to explain this part of the body neurologically, at all.

Nervously I agreed to the procedure and endured it without complaint.

Post LEEP Nerve Damage

On returning home however, things soon began to feel very different. After a few days, possibly a week, I was suddenly struck with a dark, eerie hollow emptiness. I knew I had been cut into, and was therefore injured, and so put it down the possible fragility of healing. But it wasn’t long before I shared my first sexual contact, and then things then became very real.

Where once there had been a rush of blood and sensation, there was nothing. No electricity, warmth or change in my body.  I was even more shocked, however when the orgasm I was expecting, had virtually vanished into thin air. Like the muscle had literally been cut out of my body. I felt hollow inside.

As the horror set in silently, as I suddenly faced the realization that this wasn’t just a fragility, or a healing problem, something I could run away from and escape. This was very serious. A deep and disturbing deadness inside, that as I explored further seemed to become emptier and more upsetting.

I tried to fantasize, to escape. I asked myself, who I could bring to mind for comfort. Something that would previously always entertain and distract me from a discomforting moment of loneliness or boredom, and would easily generate a feeling of hope and love and a rush of desire. But nothing happened.

Damage to Those Nerves Affects Everything

A black hole had appeared in my mind, shrouding the imagery I craved, my past memories and lovers, had vanished and lost all meaning. I literally wasn’t able to visualize or feel. I went to bed, and the room suddenly felt more real, solitary and isolating than it had ever done before. Even loneliness, and the painful ache for another had completely gone.

It felt that in my womb, something had been cut. As though a strong elastic band that held me together in my middle, that resonated and warmed me, and joined my mind and body with the sparks and excitement of life, had been severed.

My creativity soon also turned to a dismissal grey around me, I could see it, but wasn’t able to respond. I couldn’t feel expressions, connections, vibrations or meanings.  As if life itself became fake and tacky, like I was watching a play or performance. I was looking at the actors but could see the ropes being pulled backstage, just waiting for the end of the show. My world had lost its meaning and its colour.

As I seemed no different on the outside, I managed to I hide this for a while at work, but my job was creative, and I knew it would not be long before I would have to leave. Previously I had always felt like I was waiting for my big moment, the next big thing, anticipation that one day my magical hidden talents would be discovered, that I had something amazing to give the world. But now all that was gone. I felt tired, old, and like my cells couldn’t grow or re-generate.

Post – LEEP Side Effects Ignored

I returned to my doctor straight away. But was told to wait. After six months I returned again and persuaded them I wanted a gynecology referral. This however also did not provide any explanation or acknowledgement of the changes in sexual or sensory function I had complained about.

This became the beginning of the nightmare cycle of denial, rejection, and disbelief, which made me realize there was something very wrong in the system that needed addressing.

I went back, time after time, in the hope that there might be some kind of seed of understanding or explanation or support, but I was left searching on my own for many years that pushed me into a deep despair.

I felt like it was neither accepted, talked about, nor considered a medical issue. There was no interest or understanding.

A Culture of Silence in Women’s Sexual Health

There is a culture of silence about women’s sexual health that has shocked me. There are many I have spoken to who have found it so hard to understand why any of this matters, or are too embarrassed, or think that this it is just about the act of having sex, but it isn’t.

The womb, and the vagina-brain connection is a sensory organ, a barometer for so many of our emotions and sensations. From fear, to passion, love, excitement, trust, feeling, hearing music, and of course drive, attraction and sex. If it is damaged, the effects span throughout your whole life and can affect your entire sense of perception.

My Symptoms Are Not Unique

I eventually discovered that the symptoms I was experiencing were not unique to me, and were not, as I had begun to accept, a form of madness that needed desperately to be concealed.

They were not only real, but well documented, and not uncommon in women who have undergone total hysterectomy. The removal of not only the womb but the cervix as well.

Although no doctor had at any stage revealed this to me.

I chilled further when I learned that practitioners now commonly avoid the cervix in order to preserve a woman’s health, sanity, and sexuality.

It seemed unbelievable that they could they be still cutting away at it, seemingly at random in other operations. Young women. Potentially being completely shut down. Without any warning of the statistics, or what is at stake.

How was it they were not making the obvious connection and trying to keep us safe and intact too?

Since this happened, the shame of having lost that sacred sense of feminine, seemed to lurk around every social interaction.

I could no longer get excited about the prospect of a social event, in my neutered state I was no longer a player in the game, or felt of value to anyone.

I felt unarmed, vulnerable and an outsider.

I could no longer command, or desire attention through that unspoken physical energy. An instinctive movement of my hips, or a raised head or glance through a crowd was a lost language. Direct eye contact confused me. I no longer could read or translate these bodies.

Having always known instinctively, and successfully, how to use my body to communicate and to express and perform, meant I now had become terrified of bumping into old friends or having to explain anything.

I felt like I had been hit round the head and had forgotten who I was. For a long time the shame of this affected my entire existence. Something that I have learned every day to try and fight with all the strength I have.

Recovery Post LEEP

At times I think I am getting better, tolerating my body in a new way, and thinking that I have created this whole thing in my mind. But then at other times I am floored again upon realizing it is real.

I am not sure of the facts about neurological re-growth or brain plasticity to heal. But I know this is a good start for a positive outlook. Or perhaps just after such a long time the hope that I will eventually just get used to living in a different mind and body. Learning new ways to live, feel, and accept what I have.

We Are Not Alone

It was such a relief to learn I was not alone out there. I finally found others, and medical practitioners who were also as passionate about this subject as me.

I found within some medical papers online, the names of neurologists specializing in the field of sexual health, and in my search I soon became a point of contact for their work.

This has become the beginning of the collaborative effort to bring this out of the shadows, and into a period of new research, progress and change.

The science behind this could take many years, however this collaboration is making steps that could protect many women from surgical damage in the future.

The threat of cervical cancer is something that must not ever be ignored. We all need to know the facts, but there are less invasive treatments. We need to be given a choice and made aware of the risks.

I have decided to write about my experience in the hope that, whatever the true neurological explanation, our experiences as women will eventually be taken seriously by the medical industry.

We need more women to support us, and we want to help bring this from online to the real world where these issues can be addressed.

More Information about LEEP Side Effects

For more information about problems with LEEP, Cone Biopsy, TVT/Transvaginal Mesh, Labiaplasty or a similar vaginal or pelvic surgery, I found the physicians and researchers at San Diego Sexual Medicine to be very helpful, in particular Dr. Irwin Goldstein.

Web and Reading Resources that Provided Solace and Support

Hormones Matter

HERS Foundation

Books

Vagina, by Naomi Wolf

The Science of Orgasm, by Barry R Komisaruk, Carlos Beyer-Flores, Beverley Whipple

The Brain that Changes Itself, by Norman Doidge

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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What About the Pap Smear?

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In 2008, the New York Times noted that pharmaceutical companies made a forceful push to get Gardasil to the public, even though critics were wary that the long-term outcome was unknown. It only took Gardasil six months to be approved after submitting their application to the FDA. The Center for Disease Control recommended the product shortly after, even though it can take years for most vaccines to be accepted.

Adverse effects from the HPV vaccine are already being reported, but other impacts may be less obvious, such as a false notion that the vaccine prevents cervical cancer.

Forgotten Pap Smear

Amid mounting skepticism over the safety and effectiveness of the HPV vaccine, our attention seems to have been drawn away from the cervical cancer prevention method of yore – The Papanicolaou smear, or, as you may refer to it as, the Pap smear.

A British cervical cancer specialist, Angela Ruffle, stated in the New York Times that she was against any fast adoption of Gardasil in England. She was not just wary of adverse side effects from the vaccine, but also concerned about a false sense of confidence that could deter women from getting regular Pap smears, which are still necessary to detect strains of HPV that Gardasil does not vaccinate against. Mrs. Ruffle cautioned that “if we do this quickly and badly, we can cause more deaths.”

Even the lead developer of Gardasil, Diane Harper, underlined the importance of the Pap smear:

“The best way to prevent cervical cancer is with routine Pap screening starting at age 21 years. Vaccination cannot prevent as many cervical cancers as can Pap screening… Gardasil is associated with GBS [Guillian-Barre Syndrome] that has resulted in deaths. Pap screening using a speculum and taking cells from the cervix is not a procedure that results in death.”

What the Cell?

When my legs are in stirrups for my pap smear, I’m usually concentrating more heavily on pushing my tailbone down, as opposed to what the procedure actually entails. As it turns out, your nurse practitioner, or doctor, is actually scraping at your cervix to collect a sample of cells.

Yes, they’re scraping at your cervix, but it sure beats Guillian-Barre Syndrome.

The doctor then places the cell sample into a container that will be sent off to the laboratory for inspection. Any abnormalities detected in the cell samples allow doctors to take preventative measures against cervical cancer.

Promoting Fewer Pap Smears

Pap smear views have shifted, though, and in June, the US Preventive Services Task Force (USPSTF) made changes to their 2003 recommendations, calling for less frequent pap tests. Women should now begin Pap testing at the age of 21, with no more than one Pap smear every three years; whereas women were previously urged to begin Pap screening within a few years of becoming sexually active, and obtain a Pap test at least every three years, though more frequent screening was recommended.

The USPSTF changed its Pap Smear recommendations for the same reason it recommended fewer mammograms: The false positive results led to invasive, painful, and costly biopsies that were unnecessary. False positives findings from Pap smears could also result in future pregnancy risks.

HPV is common, but most healthy men and women are capable of eliminating the infection on their own, so detection of HPV does not necessarily lead to cervical cancer. For this reason, the USPSTF recommends against regular HPV screening for women younger than 30 years of age. And if you are 30, you can put off your Pap screening for 5 years if you combine the Pap test with HPV testing.

HPV Testing – The End for Pap Smears?

There is now a Hybrid Capture II High-Risk HPV DNA test that analyzes DNA from your cervix to detect high-risk HPV. A study supported by the Bill and Melinda Gates Foundation found that HPV DNA testing significantly reduced advanced cervical cancer, as well as deaths from cervical cancer.

The low-cost HPV DNA test will have a major impact in developing countries, where cervical cancer results in over 250,000 deaths a year, but the Pap Smear has already reduced the number of deaths caused by cervical cancer to 4,000 per year.

The Pap smear, however, may very well be run out of town now that HPV DNA testing is included in the Affordable Care Act, offering women over 30 HPV testing every three years. Of course, it’s hard to say, since this HPV DNA test only detects 13 types of HPV; and while the types of HPV tested for are high-risk, cancer-causing strains, there are at least 100 different strains of HPV, which means at least 87 strains will not be detected.

Regardless of whether or not Pap screening will be replaced with the HPV DNA testing, it’s important to note that regular screening is necessary to detect and prevent cervical cancer; the HPV vaccine alone does not prevent cervical cancer.

This article was published originally on Hormones Matter in July 2012.

A Long and Complicated History Topped by Levaquin: Please Help

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Here is my story from the beginning. Well, not my beginning, but the beginning of what seems to be a downward spiral health wise. Please help us figure this out.

Two Pregnancies and Cervical Cancer

In 1998 at the age of 22, I became pregnant with my first born son. A normal pregnancy and natural delivery. Upon my six week check up after delivery, they found abnormalities in my pap smear. With further investigation, I was diagnosed with cervical cancer. The doctor said it was as if the wallpaper was cancer but the sheet rock and wood was not affected. I had a LEEP procedure that removed the damaged area with a good portion of my cervix. I was advised that if I wanted more children, I should do so within the next two years, because any further complications would mean a hysterectomy.

In 2000, I became pregnant and delivered my second child, a daughter. The pregnancy was a little more complicated. They feared my cervix would not hold well enough to get her to full term. During the pregnancy, I was diagnosed with hypothyroidism, likely due to autoimmune dysfunction. As a child, I developed vitiligo, an autoimmune disorder of the skin.

The birth of my daughter was natural, although she came four weeks early. The doctors were still investigating my thyroid condition and eventually determined that I had a big goiter and thyroid nodules. The endocrinologist said that the nodules were too small to biopsy, and though he could not say positively that they were benign, he thought that they were. I was instructed to just continue with my thyroid replacement hormones.

Endometriosis and Partial Oophorectomy

In 2004, I experienced terrible pain in my pelvic area. All testing came back normal and the doctors originally dismissed my pain. It got so bad that I could not even sit down without terrible pain. The doctor took me in on a emergency basis and an internal ultrasound showed a mass in my pelvic region. My local doctors believed it to be cancer, as it showed all of the characteristics of malignancy. I was sent five hours away to a cancer specialist. They performed an open surgery to explore the area and remove the mass. Pathology showed it to be benign, so they removed my left ovary and tube. I was diagnosed with endometriosis.

Autoimmune Disease

In 2005, I became very ill. It started with what they believed to be an infection. Later, I was diagnosed with mononucleosis. I was told that my Epstein Barr numbers were through the roof. I literally could not get out of bed. My body hurt so bad that moving, other than to get to the bathroom, pretty much did me in for the day. I was placed on a medical leave at work. Blood testing revealed high levels of antinuclear antibody (ANA) in my blood. My local doctor thought that I may have Lupus. I was referred to a rheumatologist who diagnosed me with Fibromyalgia and Chronic Fatigue Syndrome. After six months, I returned to work.

Hysterectomy and Complications

In 2006, after years of suffering with terrible periods and a few more abnormalities on my pap smear, my OB decided it was time for a complete hysterectomy. My first night in the hospital seemed to be smooth, but in the morning things took a change. I was on a morphine pump for pain, and though I had no pain from my pelvic region, I was having pain in my chest and my left arm. The nurse said my oxygen level was extremely low. The next thing I remember was doctors running in everywhere. I was rushed to CT and then to ICU where I spent the next few days. To this day, I do not know what happened. I got the doctor’s reports. They concluded that it was either a pulmonary embolism or a coronary event. Although, at discharge the doctor told me he thought it was anxiety.

Thyroidectomy, Lung Mass and Fatty Liver

During this time and through following the thyroid diagnosis I always felt awful. No energy, extreme fatigue and weight gain of in total 70 pounds.

In 2007, I developed an illness in my stomach and bowels. The first diagnosis was gallstones. I had surgery to remove the stones. They kept me in the hospital overnight because of the incident the last time I had surgery. I had an endoscopy a few days prior to surgery, and they found I had ulcers and tested positive for H pylori. I got C diff from the hospital and had to deal with that on top of everything else. A colonoscopy revealed that I had ulcerative colitis.

In 2010, my goiter was growing to the point that swallowing and sometimes speaking became an issue. My endocrinologist felt that those symptoms, coupled with the nodules, meant it was time to remove the thyroid. I had a thyroidectomy that year with no complications other than severe fatigue and a struggle to get my levels right.

In 2011, a minor fall left me with a torn meniscus and knee surgery, really not important, I know.

In 2012, I was diagnosed with mono again and the symptoms of pain in my abdomen called for a CT. In receiving the results, I was told I had a 7mm nodule in my right lung and a fatty liver. My liver levels had been high for a few years. I was sent to a pulmonary doctor at the Lahey clinic in Massachusetts. He said that because of my young age and the fact that I had never smoked it was likely not cancer, but that we needed to recheck in six months. My six month checkup revealed another nodule and I returned to Lahey clinic for another consultation. He again said that it did not have some of the characteristics of malignancy and because it was small our best bet was to rescan in another six months.

The Current Nightmare – Enter Levaquin

So this brings me to my current nightmare, one that has continued for seven months. It began on Easter Sunday. I had been sick with what I believed to be pneumonia as my husband had just had it, and I seem to get whatever is going around. We visited the local Emergency rooms and I was diagnosed with pneumonia. They gave me a pill to take while in the ER room. I asked what it was, as my husband was given a Z pack. She told me Levaquin and I took it without question, as it meant nothing to me at the time. We waited for the discharge paperwork and left with a few different pills and and a prescription to continue Levaquin for 10 days.

By the time we reached our house, 20 minutes away, I was itching all over. Hives began to form and my face and ears were starting to swell. I went to a different ER that was 5 minutes away. The rushed me in and administered IV prednisone and Benadryl. I was put on oxygen. After about an hour, symptoms started to slow and I was released. As the reaction was going on, I felt like I was crazy. I think, or at least thought at the time, that it was from the itching. By the time we left the hospital, all I could think about was breathing.

I felt that if I did not concentrate on my breathing I would forget to breathe.

My discharge instructions were to continue with oral prednisone for 3 days and take Benadryl every 4 hours for the next 24 hours. Monday, I slept all day. That evening, I decided I could not take anymore Benadryl. When I came out of what felt like a drug induced coma, I was scared, very frightened actually.

I could barely speak and I did not want my husband to leave me.

I am a very independent person and me feeling like I needed him was not usual. I was very different and it alarmed my husband. He felt it was the prednisone and would not let me take anymore. I finally begged that he let me take another Benadryl to sleep, as I was scared and hating the way I was feeling and functioning. My head hurt so bad that I felt like it may explode.

Tuesday this continued and I could not get off the couch or speak clearly.

Wednesday we returned to the ER. I underwent a CT scan which came out normal and the ER doc felt it was migraines. He dismissed the fact that it could be the Levaquin, as it was only one pill. I was treated with migraine medicine and released.

At first I felt a little better, but some of the symptoms would not go away. I had a limp with pain and weakness on the right side of my body. My neck and shoulders hurt so bad that I could not lay down. The headache seemed unending. I laid around feeling not myself for days.

I recognized my kids but could not come up with their names. I started calling objects by different names, wrappers for socks, and looper for bra, talker for phone.

By Monday my husband brought me to the walk-in clinic, as my doctor was away and the ER had proved to not be of much help. We shared all of the pain and symptoms.

The doctor concluded that it was anxiety and gave me Tramadol for the pain.

The next day my husband brought me to my primary care physician and she was mortified by my condition. She sent us straight to the ER and said she would call them to let them know I was coming and my condition. I was still in terrible pain my head mainly and my right side. I was sent for an MRI that came back normal and underwent a lumbar puncture. It took the radiologist four tries to get the spinal tap and then she forgot to get the pressure.

I was admitted to the hospital for further testing. I had a magnetic resonance angiogram (MRA) and numerous blood tests. I had debilitating pain that left me feeling like I literally may die. I could not stand the light, the nurses had to hang blankets from the windows. The littlest noise hurt me horribly. My husband stayed by my side, as I was still nervous to have him leave me.

I was released a few days later with a slew of different migraine medicines and an appointment to see the neurologist.

The neurologist and her staff were not my favorite from the get go. The nurse asked if something was wrong with me, as I could barely speak and continued to grunt in pain. She changed my medicines and sent me for an EEG that same day. She called a few days later.

I was having seizures in my left temporal lobe.

She prescribed Keppra and left it at that with no follow up appointment or anything. She did mail me a paper about epilepsy. The Keppra did not work well for me. I became very nasty and most of my words were very colorful.

After two weeks, we went back to that neurologist and she was gradually going to reduce the Keppra and start me on Lamictal. The next week I went to see another neurologist that was four hours away.

She said that I had status epilepticus and sent me right to the ER for an infusion of Dilantin.

The next day I returned to be almost myself. I was talking better and acting more like myself.

This sickness has also changed my personality. I say silly things and giggle after everything I say, most of which is inappropriate. I act very childlike or like someone who has mental retardation.

After two days, I slipped back into my previous state. This continued for months the medicine was too low, requiring me to take more than twice the recommended amount, then too high. After two more EEGs both showing slowed brain waves on my left temporal lobe, I was sent to a big hospital to have a long term EEG. There they found the same slowing/episodes that happened 8 to 15 times a day.

I was taken off the Dilantin and started to become myself again. I lost over 20 pounds in month without trying. I was getting around and helping around the house. I was regaining interest in some of my previous hobbies and wanting to rejoin society. This continued for a little over a month. Then, I started feeling bad again.

My cognition remained improved, but my body and my head felt as they did in the beginning of this nightmare. One evening, at my nieces birthday party, I started having pains in my head.

My hearing became very acute. Everything was magnified in sound and my vision again became very blurred.

We left immediately, and by the time we were home, I could barely speak.

My jaw hurt and felt like it could hardly move. My head was aching so bad and my fear had returned.

I have regressed into my previous state and that has continued for two weeks now. I was referred to the neuro-ophthalmologist who said I have pappiledema severe in my right eye and mild to moderate in my left. My neuro thought that I may have a tumor somewhere in my body and my immune system, as a result, was attacking my brain. This is because the testing for paraneoplastic syndrome came back showing positive striational antibodies.

This week I had a PET/CT scan and an third spinal tap. The PET scan showed no abnormalities, although I was given the disc and there is a clear hot spot, at least to my untrained eye, but I guess I need to trust the experts. The spinal fluid was being sent to the Mayo Clinic for testing. For the past weeks, I have had terrible pain in the left half of my face, including my ear, my jaw and near my temple. I know it is not a sinus infection, as I get them regularly and can spot them in an instant. I am not sure if its an infection, but I am inclined to think it is another chapter in this book. I will list some of my symptoms, diagnosis and current medications.

Current Symptoms

  1. Headache, daily
  2. Blurred vision
  3. Magnified hearing
  4. Increased anxiety and fear nothing like before
  5. Right sided weakness
  6. Numbness in tingling in my extremities
  7. Memory impairment
  8. Cognitive deficits
  9. Fatigue
  10. Body Pain
  11. Weight Loss 20 pounds (yay)
  12. Eye pain
  13. Poor judgment
  14. Child like behavior
  15. Clumsiness
  16. Lack of coordination
  17. Lack of focus and inattention
  18. Restlessness
  19. Insomnia

Current Diagnoses

  1. Encephalitis
  2. Temporal Lobe seizures
  3. Status epilepticus
  4. Encephalopathy
  5. Papilledema
  6. Paraneoplastic Syndrome
  7. High Blood Pressure
  8. Acid Reflux
  9. Fibromyalgia
  10. Chronic Fatigue Syndrome / Mono

Current Medications

  1. Synthroid 200 mg
  2. Lamictal 125 mg 2 times daily
  3. Fluoxetine 40 mg
  4. Prtonix 40 mg
  5. Linsopril 10 mg
  6. Vivelle patch (estrogen 100 change twice weekly)

The blood pressure medications and estrogen are new in the last two months.

Please Help

I apologize for the length of this documentation. I want to sincerely thank you for any time and consideration you put into this. I certainly know that it is not your responsibility or obligation. I have two beautiful children and this has taken a severe toll on them. I have gone from a mom who was involved in every aspect of their lives, to a mom who is constantly afraid of causing them shame. In this, I have lost my job and an income, which means paying an incredible price for cobra insurance. I feel like we are up against a wall and running out of possibilities. This is no way for anyone to have to live. I am willing to entertain or try pretty much anything at this point. Thank you again, this means the world to me, just to gain some insight.

With Gratitude and Appreciation.

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Hormones MatterTM is conducting research on the side effects and adverse events associated with a number of common medications. Our fluoroquinolone study (Levaquin, Cipro, Avelox) will come online soon. To sign up for our newsletter and receive weekly updates on the latest research news and research participation opportunities click here.

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Marketing the HPV Vaccines to Prevent Cervical Cancer

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HPV vaccines have been promoted to the public as a ‘vaccine to prevent cervical cancer’ (a non-infectious disease) yet these vaccines have never been demonstrated to prevent any cervical cancer. Six years after the HPV vaccine was implemented globally, Ian Frazer, the Australian inventor of the vaccine, stated ‘HPV vaccines may prevent cervical cancer.’ This is why the health department only refers to this vaccine as an ‘HPV vaccine’. In 2007 when the vaccine was approved for all women in many countries it was also known that there were 15 plus high-risk HPV strains that were associated with causing cervical cancer. Yet the HPV vaccine, Gardasil®, only covered 2 strains that were associated with cervical cancer – HPV 16 and 18 – the other 2 strains in the vaccine were associated with causing genital warts. This means there are 13 other high-risk HPV strains that are not covered in the Gardasil® vaccine and this is why vaccinated women will still require regular Pap screening.

Low Risk for Cancer

Women were also not informed that an infection with HPV is harmless and does not cause disease – cancer or warts – unless other co-factors are also present. These co-factors are not prevalent in developed countries. This is why Ian Frazer stated in 2005 ‘80-90% of cervical cancer occurs in the developing countries’. Not countries like Australia, Europe and the US. These countries have a low risk of cervical cancer. In Australia the death rate to cervical cancer when the vaccine was introduced in 2007 was 1.7 women /100,000. Pap screening combined with surgery is effective (9 out of 10 cancers) in detecting and preventing cervical cancer – and Pap screening will still be needed by vaccinated women. This means that it is not cost-effective for governments to be subsidizing the HPV vaccine when we already have an effective detection and prevention (surgery) in place that is virtually risk free.

HPV is Common

HPV is a common infection in all women. 80% of healthy women will have an HPV infection during their lifetime but this is harmless unless the co-factors are present that are necessary for the development of disease. In a developed country the risk of dying from cervical cancer is 0.25% but in developing countries it is 1.5%. Whilst the pharmaceutically funded marketing campaign informed women of the high incidence of HPV infection (80%) in women it did not inform women that the majority of these women are not at risk of developing cervical cancer or warts. The Australian Government states that the majority of women with an HPV infection are not at risk of cervical cancer.

This means that a drug has been recommended to all women but the majority of these women are not at risk of disease. However, many are now at risk from the side-effects of the vaccine. The government has not reduced the risk of disease with this policy but possibly increased the risk – at great expense. HPV vaccines are the most expensive vaccine on the market – $Au450 – yet the risks and benefits of this vaccine are still undetermined. The clinical trials had not been completed when the vaccine was approved for the market by the FDA in 2006. The safety of this vaccine has never been established.

The HPV vaccine had not been tested using an inert placebo in the unvaccinated group. The Merck funded clinical trial used aluminium adjuvant as the placebo in the unvaccinated group – this is a substance that is linked to causing autoimmune diseases and hypersensitivity. Comparing the vaccinated group to a group that is given aluminium adjuvant does not provide information on the harm this vaccine will cause in healthy people. The most frequent adverse reactions caused by this vaccine are neurological reactions such as seizures, convulsions, paralysis, tics, encephalopathy and thyroiditis. Many deaths have also been linked to the vaccine.

There were 21,265 adverse events reported to the US FDA and CDC alone up to September 2012. Many of these included permanent chronic illness and death. In 2013 the governments of India and Japan are no longer recommending this vaccine to the community.

This vaccine has only been trialled by the manufacturer of the vaccine, Merck, and it was promoted to the public by a campaign that was designed and funded by the manufacturer of the vaccine. In 2006 Merck won the ‘Brand of the Year’ for Gardasil® for creating a market out of thin air for this vaccine.

For the full report published in Infectious Agents and Cancer: HPV vaccination programs have not been shown to be cost-effective in countries with comprehensive Pap screening and surgery. Judy Wilyman’s research is being presented at the University of Wollongong, Faculty of Law, Humanities and the Arts, School of Social Sciences, Media and Communication.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

To take one of our other Real Women. Real Data.TM surveys, click here.

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Wal-Mart to Offer HPV Vaccine

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Now, in addition to low priced groceries and other goods, your local Wal-Mart will offer nurse kiosks ready to inject you or your child with a variety of vaccines. Wal-Mart is joining other stores, like Walgreens and CVS, in offering walk-through health clinics. According to recent reports, Wal-Mart will be the first to offer the controversial HPV vaccines Gardasil and Cervarix.

At Hormones MatterTM, we have written a lot about Gardasil and the HPV vaccine questioning its safety. Gardasil: Miracle or Deadly Vaccine?, Is Gardasil Mandated in Your State?, What About the Pap Smear?. For a very heartbreaking story at the dangerous side effects of this story please read A Ruined Life from Gardasil. HPV is a very common virus that many experts believe the body can fight off by itself; with annual pap smear tests a doctor can easily catch and remove any abnormal cells before they become cancer.

The trend of selling direct-to-consumer vaccines, like that of selling over-the-counter medications is time-saving and logical on the one hand, but is troubling on the other, especially with vaccines and medications that have less than stellar safety profiles. Any product sold direct-to-consumer comes with the false presumption that it is entirely safe. Indeed, we have consumer protection agencies to ensure that this is the case with most products. Consumers often mistakenly assume that over-the-counter medications are safe because there is a consumer protection agency protecting their well-being, otherwise the product would not be on the market. Unlike a toy with a choking hazard or a product batch with a chemical contaminant, where the cause and effect are obvious and easily remedied with recall, the direct side-effects or adverse reactions of medications or vaccines are difficult to recognize and more difficult to prove, even under the most regulated of circumstances. When medications or vaccines are sold over-the-counter, it is nearly impossible.

The over-the-counter vaccines effectively remove any ability for physicians, researchers or patients identify side-effects. Selling over-the-counter vaccines is a boon to the pharmaceutical industry, however. With this single move the industry can sell more vaccines, the vaccines become safe in the eyes of the consumer while the industry removes the ability to prove otherwise, and a brilliant, albeit less than ethical, corporate strategy is pushed on consumers.

What do you think, should vaccines be available at the local pharmacy?

Hormones MatterTM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey. 

Gardasil: Miracle or Deadly Vaccine?

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I normally don’t speak for a larger population because we are all unique individuals; however, I think in this case I can speak for all women. Dread is the only emotion that is drudged up when you get the friendly reminder card in the mail that it’s time for your annual appointment. Stripping down and wearing a stiff hospital gown with your feet up in cold metal stirrups while a doctor sticks a cold, duck-lip looking contraption up your nether regions for a Papanicolaou (pap) test. I don’t think there is a single woman on earth who enjoys this necessary torture, but it is the primary way to detect diseases and/or conditions including cervical cancer.

That is until 2008, when Merck released a vaccine that is advertised to protect against the strands of the Human Papillomavirus (HPV) that cause cervical cancer and genital warts. The shot is being administered to young girls and boys (who can carry the disease, but do not suffer from any health conditions because of it). The shot is administered to girls ages 11-26 years-old and boys age 9-26 years old, but do the pros outweigh the cons? I’ve heard of doctors tell parents, I wouldn’t give this shot to my own child, how can I recommend it to my patients. And I’ve heard doctors say, it’s the greatest vaccine we have that actually protects against cancer.

Let’s look at whether or not prevention outweighs the serious side effects and risks.

HPV

Carolyn Vachani, RN, MSN, AOCN writes that, The Human Papilloma Virus (HPV) is one of the most common sexually transmitted infections (STI) in the world. It is estimated that 5.5 million people worldwide are infected annually. Sexually active individuals have an 80 to 85% chance of being infected at some time in their life.” It’s not just a sexually transmitted infection; the virus invades the epithelial cells (type of skin cell) on other parts of the body including the oral mucosa, esophagus, larynx, trachea, and conjunctiva of the eye. Further more Vachani writes, “Researchers have identified 100 different strains of HPV, 40 of which can infect the anal and genital areas.”

On Merck’s Gardasil website it boasts, “GARDASIL is the only human papillomavirus (HPV) vaccine that helps protect against 4 types of HPV.” So, what about the other 96 strands, 36 of which infect the anal and genital areas?

Like HIV, there is no cure for HPV; but unlike HIV, the body can fight HPV and win 80% of the time. For the 20% whose body cannot fight off HPV there is a risk that cervical cancer can develop. If it is a strand that causes genital warts there are various methods to treat and get rid of the warts until the body is able to fight off the infection on its own.

Cervical Cancer

In spite of the high odds the body can fight off an HPV infection, cervical cancer is the second most common cancer in women worldwide. Forty years ago, cervical cancer was the leading cause of death of women in the US, but thanks to the availability of the pap test that has decreased 75% over the past 50 years. With annual pap tests, precancerous cells can be detected and removed from the cervix rather simply. According to the CDC, in 2008:

  • 12,410      women in the United States were diagnosed with cervical cancer.
  • 4,008      women in the United States died from cervical cancer.

Those numbers are low compared to developing countries. Out of the approximately 500,000 new cases of cervical cancer annually, 83% are in developing countries. The annual death rate of cervical cancer worldwide is approximately 273,000, of which developing countries account for 75% of the deaths.

There are no symptoms of cervical cancer and no way to detect it except a pap test, which isn’t available in most developing countries explaining the higher mortality rates. A vaccine that protects against the most common strands of the virus is better than nothing, right? Well, let’s take a closer look and see what the controversy is all about.

Gardasil

FDA approved Gardasil on June 8, 2006. As Chandler Marrs reported in Why Few Women Trust the FDA, the FDA doesn’t always have the best record in women’s health, making it difficult to believe everything they pass is safe or effective. The vaccine is a series of three shots taken over the course of a year. On the FDA website it states, “Given the large number of doses distributed, it is expected that, by chance alone, serious adverse events and some deaths will be reported in this large population during the time period following vaccinations.”

How many deaths and serious side effects are acceptable for the FDA? Apparently quite few; Natural Society reports, “Between May 2009 and September 2010 alone, Gardasil was linked to 3,589 harmful reactions and 16 deaths. Of the 3,589 adverse reactions, many were debilitating. Permanent disability was the result of 213 cases; 25 resulted in the diagnosis of Guillain-Barre Syndrome; and there were 789 other “serious” reports according to FDA documents.”

What does the FDA have to say? “Concerns have been raised about reports of deaths occurring in individuals after receiving Gardasil. As of December 31, 2008, 32 deaths had been reported to VAERS [Vaccine Adverse Event Reporting System]. There was not a common pattern to the deaths that would suggest they were caused by the vaccine.”

On the website Classaction.org, where you can get legal advice on class action law suits against the makers of Gardasil if you or your child has suffered from side effects, they state, “As of Feb. 14, 2011, the CDC has reported that there have been 51 reports of deaths among females who received the HPV vaccine. A total of 32 of these death reports have been confirmed, meaning that a doctor has reviewed the report and any associated records. There have been two reports of deaths among males who were injected with Gardasil.”

That is just in America where cervical cancer can be detected early with annual pap tests. The vaccine against HPV is given worldwide to girls and boys to prevent spreading of HPV. It is now marketed as prevention against anal cancer even though only 10% of women with HPV will develop cancer and  cancer associated with HPV is only responsible for 1% of all cancer deaths.

Judicial Watch

In 2011, Judicial Watch, a conservative, non-partisan educational foundation that promotes transparency, accountability and integrity in government, politics and the law stepped in. They reported that they, “received new documents from the U.S. Food and Drug Administration (FDA) under the provisions of the Freedom of Information Act (FOIA), detailing reports of adverse reactions to the vaccination for human papillomavirus (HPV), Gardasil. The adverse reaction reports detail 26 new deaths reported between September 1, 2010 and September 15, 2011 as well as incidents of seizures, paralysis, blindness, pancreatitis, speech problems, short term memory loss and Guillain-Barré Syndrome. The documents come from the FDA’s Vaccine Adverse Event Reporting System (VAERS).”

The report also states, “Not only will Gardasil not cure pre-existing HPV, it can also make symptoms worse. Women who already have the virus without knowing it could suffer massive outbreaks of genital warts or abnormal precancerous lesions, both of which require extensive treatment.” The vaccine is suggested for women who test positive for HPV in order to prevent them from contracting the other strands. (The 25 page report can be viewed here.)

Conclusion

Merck’s website advertises “You/your son or daughter could be one less person affected by HPV disease.” It is important to research all the possible side effects and the rate of occurrence, as well as your/your daughter’s ability to have annual pap tests before making this decision. We are all exposed to numerous strands of the HPV virus. Of the 100 strands, 40 are contacted through sex or genital skin contact. Of those 40, Gardasil only protects against the 4 most common strands because adding more strands to the vaccine caused even more severe side effects. In 80% of the cases of genital HPV, the body fights off the infection. With pap tests, doctors can detect cervical cancer before it becomes deadly (as long as women are getting them done annually). As much as we all hate that annual appointment, it may be a better solution to stick our legs in the stirrups for an exam rather than risk the side effects of the Gardasil vaccine. You decide.

Next week, I will look at how Gardasil was approved by the FDA, how states are mandating it for school children, and how states are passing legislation to make it legal for health professionals to administer the shot to minors without parental consent.

Additional Resources

IARC Monographs on Human Papillomavirus Virus and Studies of Cancer in Humans

Is Gardasil mandated in your state? Read more here
How does a Pap Smear Test prevent cervical cancer? Read more here.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.