January 2014

Endometriosis in Canada

Published on January 24, 2014

4418 views

At 13 years old, the pain was sudden and intense; unlike anything I had ever experienced before. Bleeding followed three days after the onset of pain. The ripping pain through my abdomen left me shaking, grey, vomiting and fainting on a predictable basis. Every month it was the same story, crumpled into an incapacitated heap on the bathroom floor. Over the counter pain medications offered no benefit. I also developed a weak resistance to infection with suspiciously cyclical flare ups of throat infections, severe fatigue and viral illnesses. I knew something was very wrong from the start, although the medical establishment did not believe me.

Doctor after doctor dismissed my symptoms. “This is normal. Get used to it.” “You’re too sensitive.” “It can’t possibly be that bad, you are being over dramatic.” “You have penis envy.” “You are a hypochondriac; it’s all in your head.” Futile doctor visit after futile doctor visit, I was caught in an unrelenting cycle of illness on a monthly basis. I missed a great deal of high school due to illness and this unrelenting pain with seemingly no explanation.

Following high school graduation I moved to a major city to pursue my education. I was very fortunate to find a new family doctor who did take my symptoms seriously and referred me to one of the country’s leading experts of the highly suspected disease. Several months later, after laparoscopic excision with biopsy the diagnosis was certain: endometriosis. I was 20 years old.

After my surgery I did improve for a while. With continuous birth control pills and copious NSAIDs I was semi-functional; however it got to the point where I knew another surgery was imminent. I had my second laparoscopy with a different doctor in Calgary AB eighteen months following my first surgery. Immediately after surgery I developed a new severe stabbing pain in the lower right quadrant that never went away. I later found out this doctor had lied to me and had actually performed a laparoscopic fulguration of endometriosis rather than the consented to excision procedure despite my very clear wishes that anything other than excision was not to be performed under any circumstances. This doctor continued to lie to me the remainder of time I was under her care. This kind of patient treatment and the complete disregard for patient consent is deemed to be perfectly acceptable and ethical by the Peter Lougheed Hospital and Alberta Health Services.

During this time as my pain was relentless I started learning everything I possibly could about diet and alternative treatments. Although my vegetarian diet has always been quite healthy I found that certain foods absolutely triggered pain and inflammation. As sick as I have been, certain foods make my symptoms a thousand times worse. Dietary therapy and acupuncture were absolutely critical in my functioning in daily life for the next several years (as they continue to be) and inspired me to pursue an education and career in nutrition. I personally and professionally believe an integrative approach to endometriosis (expert excision surgery, dietary therapy, pelvic floor physical therapy, acupuncture etc) is essential in the optimal treatment of endometriosis.

In the summer of 2008 I suddenly became very sick with fever, nausea and a sudden mysterious painful lump in my abdomen. It was deep in the muscle just to the right of my navel and felt like a burning marble embedded in my tissue. Upon seeking medical care, I was sent directly to the emergency room at Vancouver General Hospital for urgent testing. After an eventful evening in the ER, they ruled out appendicitis and other emergent conditions and sent me home for the night to return for more testing the following day. My ultrasound could have been a scene from the pregnant man episode from Grey’s Anatomy. After my initial scan, doctor after doctor came in, followed by residents and students “just to take a look.” It turned out I had what was believed to be (and later confirmed) an extremely rare abdominal wall endometrioma.

Several months later I had a repeat laparoscopy and mini laparotomy to remove the abdominal wall endometrioma with my initial surgeon. I improved for a little while, although my stabbing lower right quadrant pain that started after my second surgery persisted relentlessly. About a year and a half following this surgery I suddenly developed severe nausea and fevers again, along with other inflammatory symptoms that always seem to accompany my endo. Around this time I also developed stomach ulcers and gastritis from years of taking NSAID medications daily like TicTacs and now can no longer use these medications. After a couple of years of my worsening symptoms not being taken seriously by numerous specialists across the city with no treatment offers other than hormones (which I am not interested in due to their serious side effects and questionable efficacy) and various stomach medications I decided to look elsewhere for effective treatment to completely excise all of the endo once and for all.

I consulted with three global endometriosis excision specialists, all based in the United States. All of whom opined that my endometriosis had not been completed excised and diagnosed additional problems that had been missed completely by my leading Canadian specialists. Despite my worsening symptoms, recurrence of the abdominal wall endometrioma and new symptoms suggestive of sciatic endometriosis the doctors here and Health Insurance BC refuse to admit that my rare and complicated case requires a level of expertise that exceeds the present capacities of the Canadian medical system. They would rather pay considerably more to continue ineffective care here than cover likely curative surgery in the United States. My case has remained ignored by the BC Ministry of Health despite having caught the attention of the Vancouver Sun in February 2013. It doesn’t make sense on any level: fiscally, medically or ethically and begs the question does ego matter more than patient care in the province of British Columbia and in Canada as a whole?

I am still locked in a battle with Health Insurance BC and my doctors trying to advocate for the level of expertise I know I need. Trying to decide if I should just have yet another palliative laparoscopic excision in Canada and submit to a lifetime of pain, suffering and surgery or take my fight to the next level so they will hopefully finally realize that covering optimal care is in the best interest of all involved – myself, physicians, politicians and the tax payers. So for now I stick with green juice. As much as I want to believe that the future for other women and girls with endometriosis in Canada is going to be better than it has been for me I remain unconvinced. The politics and attitudes lag far behind the science. This is why it is so important for empowered and educated patients and health professionals to speak up and make our voices heard. Without our united voices nothing will ever change.

Living with Endometriosis: A Story of Struggle and Hope

by Kelsey Chin

Published on January 23, 2014

4141 views

I have been living with endometriosis for roughly 16 years. Like many women, it took a long time for me to get a diagnosis. In fact, it took 14 years to get a surgical diagnosis, 7 years after my first complex cyst was seen during an emergency room visit. I spent years enduring agonizing period pain, chronic pelvic pain, nausea, fatigue, bowel problems, and ovarian cysts. Even after my surgical diagnosis, I had to fight to get the effective treatment and diagnostic care that I deserved. The following video gives you just a snapshot of one year of my life living with endometriosis; a year that I will never forget; a year that will haunt me for years to come.

Living with Endometriosis: a story of struggle and hope

Thanks to a highly skilled excision specialist, I have been given a second chance at a functional life. However, the journey to healing is not yet complete. To read my full story, including my struggle for a diagnosis, two surgeries, infertility, and how I lived through my recent miscarriage, visit:

Bloggers Unite for #EndoMarch2014: Week 2 – What the Endo March Means to Me

Kelsey is an Early Childhood Educator, patient advocate, and blogger from the Boston area. She chronicles her journey using sewing as a positive outlet while living with chronic pain and Stage IV Endometriosis. Unofficially diagnosed at 22, Kelsey has spent seven years learning about her disease, and has recently become active in Endometriosis research and advocacy.She recently founded Endo Sisters Healing Together, a support group for New England-based women with endometriosis. To read more, visit her blog at www.silverrosewing.blogspot.com

Endometriosis and Being a Trans Person: Beyond Gendered Reproductive Health

by Luke Fox

Published on January 22, 2014

15194 views

Endometriosis is often a very misunderstood, and under diagnosed disease affecting a significant population of women. It is typically classified as a gynaecological condition affecting the organs of the female reproductive system, or pelvic region. There are, of course, manifestations of the disease that can appear in other areas of the body, and do not have to correlate with the pelvic region, though endometriosis is most commonly referred to as a female disease. There is a significant body of research exploring women with endometriosis, and their lived experiences, as well as how to treat women with endo, from a medical perspective. But what happens if the person with endometriosis is not a woman?

There are documented cases of cis men (cis meaning someone who identifies with the sex they were assigned at birth) who present with endometriosis of the prostate that is typically discovered when their body is introduced to estrogenic effects. I am sure there are also other ways and forms endo can manifest itself in the male sexed body, but the research at this point in time is simply not extensive enough for me to comment as fully as I would like to about the number of cis men affected by the disease.

Outside of the binary world of cis men and cis women affected by endometriosis, there is a population of trans men (and trans women) who face living with endometriosis everyday whose experience with the disease goes un-researched, and essentially erased from the endometriosis community as a whole. (Trans meaning someone whose gender identity does not match the sex they were assigned at birth).

I do not wish to take away from the experiences of women with this disease who do suffer a great deal in gaining access to proper medical treatment, and support systems, however, I believe it to be equally important to expose the reality of what it means to navigate a gendered disease when one does not belong to such a binary system.

I have been living with and navigating endometriosis for thirteen years. It took eleven years, and two surgeries before I received a diagnosis. If one were to look at my endo journey, this would not seem out of the ordinary, except that I am not a woman. I am a trans person navigating this highly gendered condition.

It is difficult to approach this topic in a community that has historically expressed a very female-centric ideology, leaving very little room to create a non-gendered and more inclusive approach to a disease that affects bodies alone. I cannot speak for all trans men, as each and every single person, regardless of gender identity, is going to have a unique experience with endometriosis. This does not mean that there cannot be overlap in symptoms, or experiences across any gender with the disease.

My overall experience, of gaining a diagnosis is not very dissimilar to that of most woman identified persons who go through endless test, and re-test, who are asked invasive questions, and forced options of pregnancy, hysterectomy, or intensely potent pharmaceuticals. Where my experience varies is in how each of these processes has affected my navigation and decision making with endometriosis. One of the largest difficulties I have encountered is, in gaining access to treatments based on my specific needs and wants for my own body. During my diagnostic phase, I hid from my practitioners my trans identity because I was afraid of not being able to gain access to appropriate care or treatment. As it was, I was already having difficulty navigating questions posed around sexual activity, as my experiences have not correlated with the simplistic set of questions around penetration from having a cis male partner.

In every single exam or ultrasound appointment I endured long conversations around my potentially being sexually abused, because I was so uncomfortable with receiving pelvic exams and transvaginal ultrasounds that I would fight back tears as the medical professionals forced their instruments upon my body. Every physical exam was an invasion that I knew needed to happen, but did not belong to my body.

In the past, I had been offered a hysterectomy, simply because doctors thought that would be an easier solution to relieving my pain. I have received questions from a lot of people I know as to why I don’t just go with this option if I am trans anyway. The simple truth is that I want to be able to maintain my fertility, just as anyone else who would like the possibility of children in the future. Being a trans person does not mean that I do not want kids, or that my desire for children is somehow less important.

Now that my practitioners are aware of my gender identity, and I am navigating new levels of difficulty in my disease, I am facing a new set of challenges and barriers to access. All of a sudden, a simple change in my identity on their chart has them questioning the legitimacy of my requests. What was previously an open invitation to receive a hysterectomy is now being scrutinized as something that I am potentially abusing the medical system for as part of my gender identity, and not my long struggle with endometriosis, and the physical, mental, and emotional anguish I have experienced as a result. My decisions around which pharmaceuticals I wish to use, if any, has been met with great debate, and I have had practitioners state to me directly that they do not wish to include on my referrals that I am trans, as they fear it will affect my treatment outcomes.

In a lot of ways I am extremely lucky to be able to work with the practitioners who are currently supporting me in my health, though it was a large struggle to find appropriate practitioners. While I hid my identity for a large portion of my struggle in receiving a diagnosis, not everyone is quite so lucky to fly below the radar in receiving initial treatment. There is a documentary about a trans man with ovarian cancer, called ‘Southern Comfort’ which documents well, the very real struggle of some men to accessing treatment in a specifically female identified space, such as a gynaecological office, or ultrasound clinic.

Gaining support has been an extremely important and significant portion of my ability to live with and navigate endo. Although I know that I am welcome at my local support group, I often feel very isolated in my experiences. A large body of the endometriosis community likes to refer to each other as ladies, girls, or endosisters, which to someone such as myself is highly exclusionary. I know that I am in the minority of people with endometriosis who do not identify with these terms, but this does not mean that I am not worth including, or that my experience with the disease is not important.

I think it can be problematic to attach a gender to any disease, as gender is so complexly related to social constructions and systems of oppression, power, and control. Diseases do not know the boundaries of social constructions. Just as endometriosis was once thought of as a white, career woman’s disease, we know very well that endometriosis does not discriminate among class, or racial structures, and I cannot see how gender is any different.

Many people who do not fit within the confines of a set definition can become easily isolated, marginalized, stigmatized, and discriminated against. In a community of people who all suffer a great deal from a very debilitating condition, it is disheartening to learn that one can be further marginalized within this group, as someone who is ‘othered’, oftentimes in very unintentional ways.

Inclusivity and barrier free access to support and information will benefit everyone who faces endometriosis in any facet of their life. Exclusionary actions create a weaker community, and can also lead to overlooking important aspects of disease-based research.

It is my hope, in moving forward with endometriosis awareness that all people affected by the disease have representation, and are not excluded by invisible lines.

Update

It has been just over four years since I wrote my very first piece about being trans and living with endometriosis. Since then there has been an increase in public awareness about trans people. Conversations about trans inclusion have been taking place across North America, and within Canada there are now federal protections for gender identity and gender expression. So what’s changed, and how is my care now since these changes have taken place?

Navigating Endometriosis from a Trans Perspective 2018

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Periods from Hell

by Stacey Miller

Published on January 21, 2014

6540 views

Even from the beginning, my periods have been a little off. My first period was light but it lasted two weeks. Some years later I had bouts of nausea and vomiting on the first day of my period. I was eighteen then and I thought God was punishing me for losing my virginity, until I realized that perhaps God had better things to worry about.

Period during Pregnancy

My period even made an appearance when I was pregnant. At about nine or ten weeks into the pregnancy, I started to bleed at work. It was darker like at the end of a period. I panicked, as any woman would. I thought I was having a miscarriage. The emergency room could not tell me any different. I was put on bed rest until it stopped. It went on for two weeks and then stopped just as mysteriously as it began. My son was born about six months later after an emergency cesarean. Two years later, my daughter was born also by cesarean. Perhaps those two c-sections and the tubal ligation are what caused a nightmare that lasted more than a decade.

Tubal Ligation and Heavy Periods

Soon after my tubes were tied, I began to have heavy periods. They would last over a week. I would seem to have to change tampons every hour and a half. When I went to my Ob/Gyn, he put me on birth control pills to snap my hormones back in line. It worked for a while. I took them for about three or four months and then stopped. My periods returned to normal length and flow for a short span of time. Then, it would start again and I would begin the hormone roller-coaster again. Every time I went on birth control, I had to take it longer for it to work. I became frustrated with the fact that my tubes were tied but I was still taking (and paying) for birth control pills. After six or seven years, my body had become immune to the pills. They no longer worked. Worse than the heavy periods was the increasing pain.

Heavy Periods plus Searing Pain

My lower back pain stayed with me since the birth of my children, but it got worse as the years went on. I also developed ovarian cysts and other lower pelvic pain. I had moved and was seeing a new Ob/Gyn. This one seemed to make it a race to see how quickly she could get me out of her office. She didn’t listen to my family history when I told her that every woman in my family had a hysterectomy due to fibroid or endometriosis. She would send me for ultrasounds and other tests that always came back inconclusive. But she never attempted to find out why I was in so much pain or why I had to use two tampons just to be vertical. Her answer was Depo-Provera. It was a shot to stop my ovulation, and therefore, my period. Perfect answer, she said. My periods stopped. My weight shot up forty pounds. After two shots, I decided I would never take any hormones again. So a year later my period came back worse than ever. I lay on the bed for four days straight with back pain that made me want to punch a nun in the face. The bleeding would be bad to normal, but it was the pain that was the unbearable.

Fighting to Be Taken Seriously

I changed doctors again. This time, I went in prepared. I did my research. I knew that if it was a fibroid tumor, the scan would have picked it up. I also knew that many of the suspected conditions could go undetected on such scans. In fact, that was the problem. Endometriosis and adenomyosis can go with symptoms and no real answers for years. As I read the lists on the internet, I recognized signs that I did not even think were linked to my period. Perhaps my back pain had nothing to do with strained muscles. Perhaps my UTI symptoms that seemed to appear around the time of my period had more to do with my period than ill timing.

With a list of symptoms and searing pain to remind me exactly where my backbone was, I walked into the office. I was not going to be bullied or pushed out of the office. She sent me for the same tests: ultrasound and transvaginal ultrasound. The back pain following the exam almost made me pass out. This was not normal, I said to myself. One of the nurses called to try to refer me back to my primary physician. I told her that this pain came with my period and left when it left. This was not a primary physician issue. It was a gynecological issue. She scheduled another appointment and I saw another doctor that was too quick to push me out. “The tests were normal, so I don’t know why you are here. I thought they called you.” She ‘there there’d’ me and handed me a brochure while she encouraged me to think about getting the inside of my uterus singed or taking something to throw me into menopause. As I walked into the office for my next appointment, I overheard one of the nurses comment, “yeah, her ultrasound was fine. I don’t know what she’s complaining about.” That was it. The doctor came in like nothing was wrong so I flipped my bitch switch and let it go. “I know this is new for you but this is old for me. I am tired of going on and off hormones. Every time I go off them, it is worse. I don’t want to do ablation because 40% of women end up needing hysterectomies anyway. I don’t want to chemically force myself into menopause. I do not want to stick a band aid on this. There is something wrong. And while I may not know exactly which bleeding problem it is, I know that ablation is not a definitive answer for any of them. I’ve had my babies. It’s time to solve the problem and stop throwing a pill at it.” She gave in and set up the referral for a surgeon.

Flipping the Bitch Switch

Truth is that I am not sure exactly what it is that I have. On January 24th, I go in for surgery. It was not a quick decision by any means. It came after almost fifteen years of increasing pain and problems. It came when I decided that I was not going to shut up and fill a prescription. So please, if you are out there and still struggling with pain and periods that seem like they are in competition with Niagara Falls, find your own bitch switch and let it go. Because despite what the medical community would rather have us believe, a person can make it all the way through med school and still be a moron. You know your body better than anyone. Take care of it.

Misunderstanding and Misdiagnosis: Journey Towards Endometriosis Diagnosis

by RC

Published on January 21, 2014

3242 views

Try this experiment: Google the words ‘endometriosis’ and ‘misunderstood’ and see how many results you get. Care to make an educated guess of how many you would find? 300? 3,000? Try 62,600! For those who don’t have any experience with endo this number might be shocking. But we who have suffered through the long and arduous journey of trying to find a diagnosis, 62,600 is not as staggering as it sounds.

For me, misunderstanding has been a huge part of my life with endo. Although my symptoms began at age fifteen, I was not diagnosed with endo until I was twenty six. Instead, I was misdiagnosed with chronic fatigue syndrome, migraines, bladder infections, urinary tract infections, epiploic appendigitis, kidney stones, pelvic separation syndrome, interstitial cystitis, polycistic ovaries, degenerative disks, a hernia, and the very worst, hypochondria.

Common Misdiagnoses

As I have come to understand over the years, my experience of misunderstanding and misdiagnosis is not one of a kind. In fact, according to the Endometriosis Foundation of America, most women with endometriosis have pain and present symptoms up to a full decade before being diagnosed. While symptoms have been documented as beginning in girls as early as twelve years of age, the average age of diagnosis is twenty-seven. Additionally, the National Endometriosis Society claims around two million women worldwide have undiagnosed endometriosis.

Like myself, women with endometriosis have been misdiagnosed as having a host of different diseases including interstitial cystitis and polycistic ovaries. Abdominal and bowel endometriosis is often mislabeled as inflammatory bowel syndrome (IBS) while pelvic endometriosis is confused with pelvic inflammatory disease (PID) or pelvic congestion.

Misdiagnosing Endometriosis as a Psychological Disease

Every instance in which a woman is misdiagnosed as having a different medical illness is a potential tragedy, especially because pushing off a diagnosis can place a women in greater danger of losing her fertility. Being misunderstood and called a hypochondriac, or being told that our symptoms are solely psychologically based is undeniably traumatic. Historically, the idea of blaming the patient for her symptoms has been described by Indian doctors as early as 800 BC. Doctors believed that endometriosis was a psychological issue that could be cured by a positive attitude. According to the Endometriosis Association, 70 percent of women diagnosed with endometriosis were initially told there was no physical cause for their pain, and in 1995 an average of 50 percent of women with pelvic pain were found to have no organic basis for it.

On a personal level, I was told that my physical pain was due to anxiety and depression caused by a past traumatic incident that I had yet to achieve closure on. I was placed on a low dose of tricyclics and instructed to “learn to relax”. The sad part is, both myself and my family accepted this diagnoses as truth and delayed focusing on receiving a genuine diagnosis for many months.

Why is Endometriosis Misdiagnosed?

In a qualitative interview-based study done by Karen Ballard et. al, five main reasons for misdiagnosis or delays in diagnosis were identified.

Unlucky, not ill: Many girls and women who initially experience symptoms assume that they are just unlucky to have painful periods but have no real illness.This assumption leads them to hold back on asking for help or speaking to a doctor for fear that the will just be seen as weak. This incorrect belief is often confirmed by family members who also suffer.
Symptoms normalized: When women finally do gather the strength to ask for help from their doctors, they are often told their symptoms are a normal part of being a women and do not need to be checked out.
Hormones delay diagnosis: Aside from telling women that their symptoms are normal, some doctors prescribe hormones to their patients. This causes an unfortunate situation, as the hormones suppress the symptoms and cause women to believe their symptoms have improved. Women then neglect to get themselves checked out, which causes a delay in diagnosis.
Inadequate diagnostic methods: Recently, it has come to light that the best way to diagnose endometriosis is through laparosopic surgery. Unfortunately, doctors who are uneducated about this are still using other diagnostic methods, such a trasvaginal sonograms. While sonograms can identify endometriomas, they cannot diagnose endometriosis. Utilizing inadequate diagnostic methods can cause a very large delay in diagnosis, or even worse, an incorrect one.
Vague symptoms: Endometriosis manifests in a variety of symptoms. Those symptoms, such as pain, fatigue, bowel and bladder difficulties, and pain during sex are also symptoms of other diseases. Pelvic inflammatory disease, pelvic congestion, irritable bowel syndrome, and interstitial cystitis are a few of the many diseases that have some of the same symptoms as endometriosis. Due to this, endometriosis is often misdiagnosed as one of these other diseases.

How do we prevent misdiagnosis and delayed diagnosis in the future?

Self-education: It is our jobs as strong, independent women to fortify ourselves with knowledge and information about our bodies, minds, and health. The more we know about ourselves, the less likely it is for us to be convinced that we are something that we’re not.
Spread the word: Do you suffer from endometriosis? Have you stocked your brain with all there is to know about it? Let the world know! Share your experiences, knowledge and information with other women who don’t know much about the subject. The more girls and women know about endometriosis, the better their chances of receiving a correct diagnosis.
Inform the medical community: It may come as a surprise to know that not all doctors and nurses are experts at every medical malady. Too often, when it comes to endometriosis, they have a superficial grasp of what it entails. This is due to misinformation coming from the internet, media, and even medical books. We need to take it upon ourselves to inform the medical community what we are really dealing with when we say we have endometriosis.

It’s Up to Us

While endometriosis misdiagnosis and delayed diagnosis are problems that are much more common than they should be, there are ways that we can help ourselves, and others, prevent them from happening. As long as we continue to stand up for ourselves and advocate for the rights of all women and girls with endometriosis, we are on the right track. United together, there is nothing that we endo-sisters cannot overcome in the future.

About the author. Rachel Cohen is technically a special education teacher, specializing in working with children who have autism; or at least she was until endometriosis took over her life. Now she writes, blogs and tweets about endo while taking care of her miraculous two children that she has with her equally miraculous husband; not to brag or anything. Rachel is currently gathering stories from women with endo from around the world to put together into a book. You can share your story with her, or read her blog at Endo from the Heart.

The Pharma Funded Promotion of HPV Vaccines

by Judy Wilyman, MSc

Published on January 16, 2014

3984 views

Promotional campaigns for HPV vaccines have informed women that infections from HPV-16 and -18 are the cause of most cervical cancer. However, in 2006/7 when HPV vaccination programs were implemented globally, the scientific community knew that most women do not develop cervical cancer or warts after any type of HPV infection – including HPV-16/-18. HPV infections from all sub-types are found in high frequency among women with normal cervices and cervical cancer is a rare outcome from these infections. This demonstrates that HPV infection of any sub-type (including HPV-16 and -18) is not predictive of cancer; particularly as ninety percent of HPV infections have no clinical consequences at all. It has been known for decades that environmental and lifestyle co-factors are also necessary for HPV infections to progress to cervical cancer. This is why 83% of cervical cancer occurs in the developing countries.

Does the HPV Vaccine Prevent Cervical Cancer?

The promotional campaigns for HPV vaccines have been designed and funded by the pharmaceutical companies. This vaccine has not been demonstrated to prevent cervical cancer. It was trialled against a surrogate for cervical cancer – pre-cursor lesions (grade 2/3) in 15-26 year old women – and these lesions are not predictive of cancer later in life. More than 95% of high-grade lesions (CIN 3) in young women (15-26 years) regress without treatment. In addition, the phase 3 clinical trials that tested the vaccine against pre-cursor lesions were conducted from 2003 to 2007 and were not complete when the HPV vaccine was licensed by the US Food and Drug Administration in June 2006. The vaccine was fast tracked for approval by the FDA due to industry lobbying and Merck ensured that Gardasil® was not just approved for high-risk groups. The FDA approved the vaccine for universal use in all women even though it was known that many co-factors, that were not prevalent in developed countries (Australia, USA and UK), were essential for HPV infections to progress to cervical cancer. The time frame from application to approval of the HPV vaccine by the FDA was only 6 months and 3 weeks later the CDC recommended the vaccine for use in all women.

Yet the phase 3 clinical trials to determine the safety and efficacy of this vaccine against cervical cancer were not completed until 2007. In the US, the 1986 National Childhood Vaccine Injury Act removes liability from vaccine manufacturers for all design faults and negligence relating to their vaccines [1]. The US government has a no-fault compensation program that is tax-payer funded. This program removes all liability from the vaccine manufacturers and there is no onus to demonstrate that their products are safe and effective before they are implemented in the population. However, only Americans can seek compensation from the US government program. People who are harmed by HPV vaccines in other countries, such as Australia, receive no compensation from their governments.

Lobbying for HPV Vaccine Approval

Merck & Co is the manufacturer of the Gardasil® vaccine and when the medical director, Dr. Richard Haupt, was questioned about the speed with which the HPV vaccine was brought to the market he replied ‘Our hope and belief is that this is a remarkable vaccine that will have a huge impact on women’ [2]. ‘Hope’ and ‘belief’ are not the same as scientific evidence.

Politicians were lobbied and invited to receptions urging them to legislate against a ‘global killer’ [2]. Abramson, the chairman of the committee of the CDC that recommended the vaccine for all girls aged 11 or 12, stated ‘there was incredible pressure from industry and politics’ to approve this vaccine [2]. Diane Harper, a scientist involved in the development of the vaccine, agreed ‘Merck lobbied every opinion leader, women’s group, medical society, politicians and went directly to the people – it created a sense of panic that says you have to have this vaccine now’ [2]. In the US pharmaceutical companies are allowed to advertise directly to the public and the campaigns for HPV vaccines were very aggressive.

Educating Physicians about the HPV Vaccine

It was important for Merck to promote the vaccine through trusted sources and this was done by securing government reimbursement and mandates to promote the vaccine to all women, not just high-risk populations [3]. This enabled Merck to fund the professional medical associations (PMA’s) to promote the vaccine. The pharmaceutical companies supplied the medical associations with a Speaker Lecture Kit. This included ready-made presentations and letters to promote Gardasil® as a preventative for cervical cancer, even though the data was incomplete. The commercials for Gardasil® stated in small print ‘the duration of protection has not been established’ [2]. Much of the promotional material did not address the complexity of the issues surrounding the vaccine and did not provide balanced advice regarding the risks and benefits of the vaccine [3]. It was also presented in a way that obscured the involvement of pharmaceutical companies.

Doctors and nurses were recruited for an ‘Educate the Educators’ program created by the pharmaceutical companies to train health professionals to promote the vaccine. The PMA’s maintained a registry of educators and participants lectured to thousands of healthcare professionals. Hundreds of doctors were paid $4,500 per 50 minute lecture to present the information supplied by the pharmaceutical companies at Merck sponsored conferences [3]. They were also paid to attend advisory board meetings to discuss the vaccine [2]. In addition, there has also been an increase in cervical cancer awareness for patient groups financed with the help of Merck and GlaxosmithKline: often the financial support is indirect so patients are unaware that ‘expert’ advice has been paid for by the vaccine makers [2].

One of the Speaker Kit medical slides stated ‘Cervical cancer screening is described as secondary prevention identifying a precursor lesion; the HPV vaccine is primary prevention that would eliminate the cause of cervical cancer’ (Speaker Lecture Kit slide 13 in Rothman and Rothman 2009). This information is dishonest because it does not inform women that HPV alone is not sufficient to cause cervical cancer and also that there are 13+ other cancer causing strains of HPV that are not covered by the vaccine. Hence, the vaccine will not eliminate the cause of cervical cancer.

Whilst the slides acknowledged the uneven distribution of cervical cancer rates globally they did not draw attention to the risk factors that make cervical cancer a higher risk for women in developing countries. This knowledge is critical to women in determining the necessity for using this vaccine. The education campaigns emphasized the worldwide incidence of this disease whilst leaving out the risk factors for the disease and precautions about the risks of vaccines. Merck also funded the American College Health Association (ACHA) Vaccine Toolkit for clinicians [3]. This included talking points, sample e-mail messages to students and parents and sample press releases and public service announcements. At no time has the public been informed that the information they received on this vaccine was designed by pharmaceutical companies.

Protecting Population Health

The pharmaceutically funded promotional campaigns for HPV vaccines have maximized the threat of HPV infections and minimised the environmental and lifestyle co-factors that are necessary for the development of cervical cancer. The public places its trust in medical associations to provide non-biased science to health professionals for the promotion of medical products to the community. Clearly this trust has been breached in the case of HPV vaccines. At a minimum the public is entitled to be informed openly about relationships with industry and precise funding arrangements in order that they can weigh up the credibility of the information. This was an intentional deception as the pharmaceutical companies sought to present their information through trusted sources and the PMA’s condoned it.

Population health cannot be protected if there is no accountability for the health information that is supplied to doctors from industry funded research and presented to the community in the mainstream media.

About the author: Judy Wilyman MSc (Population Health), PhD Candidate University of Wollongong. More facts about HPV infections and the development of cervical cancer have been published in the Infectious Agents and Cancer Journal and can be accessed here: HPV vaccination programs have not been shown to be cost-effective in countries with comprehensive Pap screening and surgery.

References

Habakus LK and Holland M (Ed), 2011, Vaccine Epidemic: how corporate greed, biased science and coercive government threaten our human rights, our health and our children. Center for Personal Rights.
Rosenthal E, 2008, The Evidence Gap: Drug Makers Push Leads to Cancer Rise, The New York Times, August 20, accessed 21.12.09
Rothman SM and Rothman DJ, 2009, Marketing HPV Vaccine: Implications for Adolescent Health and Medical Professionalism, Journal of the American Medical Association, Vol 302, (7) p. 781 – 785.

Participate in HPV Vaccine Research

Hormones Matter^TM 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.

Hormones Matter^TM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones Matter^TM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

To support Hormones Matter and our research projects – Crowdfund Us.

The Gardasil Experience in Denmark: One Family’s Story

by Charlotte Nielsen

Published on January 13, 2014

7246 views

In Denmark, the childhood immunization program has included the HPV-vaccination since 2009. The first injection is given with the third and last “MFR”, (Measles, mumps, rubella). Gardasil is offered for free for girls aged 12. As a “follow up”, young girls have been offered the vaccination for free as well. The plan in Denmark is to expand the standard program by including girls aged 15-18. Many Danish women and even some young boys have received the vaccination by co-payment.

According to Danish health care authorities they received 468 reports about 1022 possible side effects to Gardasil during the period 2009-2012. At that point, 53 cases were classified as “serious” out of which 24 were classified “possible” and 29 “less possible”.

From the period of January 1, 2009 through August 1, 2013, 1,392,101 vaccine doses of Gardasil were sold in Denmark. Since Gardasil comes in a three dose schedule, approximately 460,000 young Danish girls in Denmark may have had the HPV vaccine. During this period was reported 41 suspected serious adverse effects considered as “possible” due to Gardasil.

The latest report from September 26. 2013 describes an increasing number of reported side effects – 281 reports including 1528 side effects, 80 classified “serious”, 17 “possible”, 29 “less possible” and the last 34 not possible to assess primarily due to missing a diagnosis or too little information.

Most reported side effects were syncope or dizziness, headache and general malaise eventually accompanied by “unspecific symptoms”.

The diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) has been seen in 4 cases (plus one former case). POTS is suspected to be a new possible side effect to Gardasil by the Danish health authorities, and therefore, the 5 cases were reported to EMA – European Medicine Agency – for further investigation. Unofficially, we have at least 10 cases of POTS as side effect to Gardasil in Denmark now. The next official Gardasil side effect-report will be released to the public late January 2014.

Our Story of Gardasil Injury

Denmark has a population of 5.5 million people. We live in a democracy – our present government consists of three parties ranging from the socialist party, the social democrats to the social liberal party. In Denmark we pay high taxes (normally about 42-50%, top taxes 70%). We have a free health care service to help in any case – or at least we believed so…

About a year ago life changed in our family. Our youngest daughter Sara got her first vaccination by Gardasil in late January 2013.

A few days later she began feeling ill continuously for weeks and after four weeks she had a very high fever and pain in her throat. A few days after that, small red spots appeared on her body. No specific infection could be proved by blood test. She was generally unwell for weeks with a low fever and was on and off school.

Sara had her second vaccination by Gardasil late March 2013. Two days after she fainted in the bathroom. During the following days she felt she could faint again and was feeling very dizzy, she had strong pains in her leg muscles and arms, along with sensory disturbances such as tingling/burning sensations under the feet and in the hands. She was exhausted (could hardly go for a very short walk). Abdominal pains appeared often after a meal. A strong and constant headache developed. She had problems with regulation of temperature. Night sweats. She felt too warm or too cold during the daytime. More symptoms appeared later on.

Sara went to school a few days a week and only a few lessons.

During the last four months she has been at home socially isolated, extremely limited in her daily activities and just recently begun home teaching, two lessons a week. (The law permits 8 lessons at home in the case of long term illness).

Sara has been through an incredible and almost unbearable number of symptoms and exacerbations in recent months.

Before Gardasil, Sara was a healthy 12-year-old girl singing in a choir at the local church, playing the piano and dancing standard-Latin twice a week. Now, in addition to constant headache and muscle pain, dizziness and nausea she has:

Low appetite, difficulties in feeling hunger or satiety, suddenly put on weight during a few weeks and then losing weight.
Muscle power decreased in general. Can only walk 1.3 km slowly and in pain.
Abdominal pains, temperature regulation out of balance (too hot//too cold/night sweats). Sensory disturbances: Tingling, burning, numbness and sleeping limbs. Arms burning/cool inside.
Symptoms from skin, teeth and joints.
Fatigue and very low energy. Even a shower is exhausting.
Problems falling asleep because of pains.
Concentration difficulties, memory problems. Problems finding the words, hard to read (eyes are easily getting tired).

Many of Sara´s symptoms have improved over time, but still most of these side effects are to some degree present.

Diagnosing Post Gardasil Illness

At the beginning we had Sara´s ears and eyes examined by specialists but neither sinusitis or any visual problems or anything else to explain the constant headache were found. Sara was examined at children’s ward at a University Hospital with no results at all. All lab tests, CT and MR-scans were normal. Only “positive result” was low D-vitamin (a relatively normal condition in Denmark). By a general practitioner Sara had tests (via the Danish Serum Institute) for synaptic encephalitis, cerebral vasculitis and neuropathy – all negative. A chiropractic neurologist found her symptoms based in the autonomic nervous system. His exercises (functional therapy) could not change the headache or take away the dizziness – his conclusion was therefore it must be a toxic reaction due to Gardasil.

The children´s ward did not pay much interest in such results. We were met by arrogance and a skeptical attitude both within hospital and general health care system just as many other patients described similar experience on their way through the health system.

In August 2013 we went to a Swiss outpatient clinic that we had heard about accidentally. We stayed two weeks at Paracelsus (www.Paracelsus.ch), Lustmühle, Switzerland. A holistic treatment in a bio-medical Clinic situated in the Swiss Alps.

All treatment is natural if possible, but patients have to prescribe and accept traditional medication, if necessary. Sara got all sorts of treatments at the clinic and back at home supplements, homeopathic medication, nutritive diet; plus sub cutaneous injections of Mistletoe. The diagnosis from Paracelsus is:

Severe toxic reaction after 2nd Gardasil immunization March 26th 2013 initiating fibromyalgia syndrome with acquired mitochondropathy.

In addition, our daughter was diagnosed by a physician at a Danish hospital, (not at children’s ward) as having POTS. POTS was reported to health care authorities as a possible side effect to Gardasil. To help the symptoms of POTS we got some advice from the hospital. Chemical medication is an option but only a treatment of symptoms. The basic damage is treated by Paracelsus, Switzerland which provides the best chances to succeed in a cure of the underlying conditions and injuries.

Working with Researchers and Physicians for Post Gardasil Illness

Unfortunately, it is up to every single family/and patient to decide what treatment to choose (and to pay for). We went to Switzerland and we are seeing a slow but promising recovery and progress. We also stay in contact with researchers abroad. We received the advice indirectly from professor Yehuda Shoenfeld, Israel, to use the treatment Lipid Replacement Therapy recommended by Professor Garth Nicolson, USA. We have given our daughter the “NTFactor ATP” powder for about 4 1/2 months now. The Swiss doctor welcomed this dietary supplement.

Yehuda Shoenfeld, Israel, is a professor and head of Zabludowicz Center for Autoimmune Diseases, Sheba Medical Center (Affiliated to Tel-Aviv University) researching in ASIA, Autoimmune/inflammatory Syndrome induced by adjuvants in vaccines. Working together with Lucija Tomljenovic.Tomljenovic and Shoenfeld have described several cases of adverse side effects connected to Gardasil. Sin Hang Lee told from his research that Gardasil is consisting remains of genetic modified DNA from HPV-virus bound to the adjuvant. He investigated 16 samples of HPV-vaccine doses from 9 different countries.

Shaw and Tomljenovic proved a connection Gardasil/autoimmune vasculitis by post mortem investigating brain tissue specimens of two young girls who suffered a sudden death for no clear reasons – except vaccination by Gardasil. The research showed that the blood-brain barrier was penetrated by HPV-16-L1 antigen from Gardasil. This leading to encephalitic conditions might have caused the death of the two young girls and likely in more cases as well.

Gary Null, PhD and Nancy Ashley VMD wrote “Gardasil – A Deadly Vaccine” mentioning several cases of serious illness and death.

They all have found indices showing a clear connection between Gardasil and serious adverse side effects – even leading to deaths.

The more researchers find out about these connections and causals – the closer medical science might get to find a cure.

This has already partly happened – in Germany two physicians have invented a “nosode” medication (small tablets), to antagonize some of the damage that Gardasil is causing. Until now there have been promising results – but this work has of course not been accepted or respected by health authorities either in Germany or Denmark yet.

Understanding the Side-Effects of Gardasil and Parent Activism in Denmark

When our daughter became ill, I began to research using Google to find out about HPV-vaccination and side effects. In Denmark we had very little knowledge in April 2013.

In Denmark we have one organization dealing with questions referring to vaccinations giving advice to support a free choice based on relevant information. The organization named “www.VaccinationsForum.dk” knew at that time only a few Danish young girls with side effects after the HPV vaccination. Together we found more information and researchers around the world.

A family stepped forward with their 14-year old daughter in the Danish newspaper Politiken, April 2013. Other newspapers made articles as well.

We accepted together with our daughter a short TV interview in September 2013 – and more followed.

A series of articles in Danish newspapers were published over the summer 2013 as well as radio, TV news (we have one national TV station “DR” and one private “TV2”, TV2 has local stations as well) – we saw a veritable media and public “wake up” in Denmark.

The number of victims showing up grew as focus was finally on HPV-vaccination and its side effects. Thirty new cases of severe side effects appeared within two months, then it was 50…Patients and their families simply did not know about the possibility of side effects until then.

We participated as a family at a meeting in September 2013 arranged by patients. We let the media cover the meeting. Everyone reported the long and exhausting process of seeking treatment post – Gardasil injury, often with no diagnosis or relevant treatment offered. Almost all of the Gardasil injured experienced deterioration over time. Several “HPV” groups appeared over summer and fall 2013 in Danish at Facebook – by now there are over 250 cases known in Denmark with adverse side effects. One Facebook group is found by the text: “Til kamp for retfærdig oplysning om HPV” (Fighting for a fair information about HPV-vaccine).

The health authorities do not gladly accept the reported cases as causal to Gardasil. But as mentioned in the introduction we have seen a bigger number of reported side effects since August 2013, probably according to the public interest aroused by parents, patients and the media.

Legislative Hearings on Post Gardasil Injury – A Victory for Parent Activism

Since August 2013, Danish politicians were informed by parents and patients and little by little are getting involved.

On November 7, 2013 there was a political “open hearing” within Danish Government´s Health Committee to discuss the HPV-vaccination and its side effects. More than 70 individuals and families sent their case stories to the politicians. It made a strong impression. Many of us even received answers – some very short and warm, some long and cool.

The Minister of Health Care chose to forward the problem to the “Regions” (Denmark is divided into 5 regions). The main tasks of the regions are: hospital services, mental health and health insurance including private practitioners and specialists.

Many case stories were once again sent – this time to the politicians of the Regions – and finally it seems that the side effect problems post Gardasil are being taken seriously.

The heart-breaking thing is that we might get a “council of experts” in Denmark. There has been a political set up “closed hearing” including five-six professors and physicians from Danish hospitals and one general practitioner. We worry that the “experts” will not have any idea what went wrong with Gardasil and the post Gardasil side-effects. They will not know how to find a cure for or treat the serious illnesses that follow the HPV vaccine. Unless health care authorities and “experts” by a small amount of humility are willing to take a look at researchers around the world and open up their traditional medical minds to all kinds of treatments.

The Danish Society for the prevention of Cancer (Kræftens Bekæmpelse) and Danish health authorities have sort of misunderstood the “discussion” making it a question of pro or contra cervical cancer. Added to that, many people have misunderstood what the HPV-vaccination really is – they are convinced it´s a vaccination against cancer – a laudable hope for humanity but not exactly what Gardasil and Cervarix are. Citizens in Denmark are not informed properly. No warnings about serious side effects have been forwarded from health authorities to practitioners to patient and parents. The media have unveiled physicians in double roles cultivating convenient connections qua their “side jobs” as consultants at medical companies producing and selling Gardasil. These physicians are, for example, employed by the Danish health authorities and there lay our concern regarding the ‘expert’ panels.

More Signs of Progress from Parent Activism against Gardasil

We have succeeded as parents and as a vaccination organization in Denmark to wake up the media, the public and politicians who are now slightly showing some interest in all the side effects caused by Gardasil, the HPV-vaccine. A small amount of money ($46,000 dollars in 2014) has been politically dedicated to investigate HPV-vaccine side effects, inform patients and health care staff and to find out how to examine the patients properly and identify the relevant diagnoses and treatments for post Gardasil injuries.

The first two young girls have now received official insurance according to their serious and disabling side effects after Gardasil, even though these illnesses were not accepted by Health authorities to be more than “possibly” due to side effects. More cases of patient insurance are following in Denmark. Danish health insurance is not depending on the health authorities.

We must keep on the good work and networking which cannot be controlled by powerful authorities or financial interests. We can even exchange information worldwide. Thanks to everyone who is taking part in this backlash against side effects due to HPV-vaccination.

We matter as parents. Researchers all over the world are participating. The medical industry is, of course, soon coming up with new vaccines trying to cover more HPV-types without using the emergency break. Future victims will come without doubt. We must never hesitate to do whatever we can to prevent this disaster to go on.

Charlotte Nielsen, Denmark

Retired occupational therapist and the mother of three.

Update

As of November 30, 2013 Health Authorities have recognized 16 cases of POTS. The number continues to grow.

Participate in Research

Hormones Matter^TM 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.

Hormones Matter^TM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones Matter^TM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

To support Hormones Matter and our research projects – Crowdfund Us.

Adenomyosis

by Philippa Bridge-Cook, PhD

Published on January 9, 2014

69446 views

Adenomyosis is a common disease of the uterus, yet little is understood about the causes and risk factors, diagnosis is difficult, and there are few effective treatments besides hysterectomy. Adenomyosis can exist on its own, or in conjunction with other pelvic diseases such as endometriosis. The incidence of adenomyosis in the general population is not known, because estimates of incidence have only been done in populations of women undergoing hysterectomy.

Symptoms of adenomyosis may include:

Painful periods
Painful ovulation
Chronic pelvic pain (all month long)
Heavy and/or prolonged menstrual bleeding
Large blood clots
Pain in the thighs

Adenomyosis can sometimes be asymptomatic, and it is not known why some women can get debilitating pain and extremely heavy bleeding from adenomyosis, while others have no symptoms at all.

The medical definition of adenomyosis is when glandular tissue, normally only found in the endometrium ( the inner lining of the uterus), is found in the myometrium (the muscle wall of the uterus). Adenomyosis used to be commonly called endometriosis interna, or endometriosis of the uterus, because of the similarity to endometriosis, which occurs when tissue similar to the endometrium is found in the pelvis or elsewhere in the body.

The cause of adenomyosis is not known. There are some studies that associate c-sections, prior uterine surgeries, and/or miscarriages with a risk of adenomyosis, although other studies have found no associations. One theory is that invasion of cells from the surface endometrium into the deeper muscular layers of the uterus can result in adenomyosis. In addition, developmental origins have been proposed, where tissue laid down in the wrong place during formation of the embryo can result in adenomyosis later in life. This theory may be the most likely to be true, as there is some support for this theory in the development of endometriosis, and endometriosis and adenomyosis often occur together.

Diagnosis of adenomyosis is difficult, because there are no tests that can definitively confirm or rule out a diagnosis. In some cases, adenomyosis can be suspected from ultrasound results or MRI results, but normal ultrasound or MRI results do not rule out the presence of adenomyosis. Adenomyosis can also be suspected from pelvic exams, when the uterus is large or tender. Since the main symptoms of pelvic pain and heavy bleeding can result from many other causes, it is difficult to diagnose adenomyosis based on symptoms. Other conditions causing similar symptoms include endometriosis, fibroids, and hormonal imbalances.

Sometimes adenomyosis symptoms can be managed with medication. Pain relievers such as NSAIDs can be used to treat pain, and in some cases hormonal medications such as the birth control pill or a Mirena IUD can treat the symptoms by stopping periods. Medications to control heavy bleeding are often not used by gynecologists, but they can be effective and prevent the need for a hysterectomy if heavy bleeding is the only symptom. The most effective medication for heavy bleeding is Lysteda (tranexamic acid), but DDAVP (desmopressin) can also be used.

Endometrial ablation is sometimes a suggested treatment for the heavy bleeding caused by adenomyosis, but it can make adenomyosis pain worse. In addition, adenomyosis may confer a greater likelihood of endometrial ablation failure. Doctors will often say that “the ultimate cure” for adenomyosis is a hysterectomy. Although hysterectomy is obviously effective at curing uterine pain and heavy menstrual bleeding, it is a major surgery and sometimes has unwanted effects and complications . If we understood the causes of adenomyosis better, we might be able to develop more specific treatments for the underlying cause or causes, and avoid such extreme surgery.

It is commonly stated on medical websites that adenomyosis goes away after menopause. However, it was often said that endometriosis goes away after menopause, and now it is known that for at least some women, maybe most, it does not. We don’t really know the incidence of endometriosis post-menopause because women who complain of pelvic pain after menopause are usually told that the pain cannot be endometriosis, and are not investigated for endometriosis, even if they have a previous history of it. It may be a similar fallacy to believe that adenomyosis goes away after menopause.

It is also often said that adenomyosis is more common in women over 35. The idea that it is more common in older women may come from the fact that it can only definitively be diagnosed by pathology studies post-hysterectomy. Older women with pelvic pain and/or heavy menstrual bleeding may be more willing to have a hysterectomy to solve the problem than younger women, who may want to keep their uterus for child-bearing. Therefore, adenomyosis ends up getting diagnosed more often in the older age group, but may be just as common in younger women. In fact, adenomyosis is starting to be diagnosed more often in younger women, using better imaging techniques.

There are many unanswered questions about adenomyosis and more research is needed in many areas of this disease. Better methods for diagnosis would be extremely helpful, as at the moment adenomyosis can only be confirmed by hysterectomy. Answers about why some women have such severe symptoms while others have none, what causes adenomyosis in the first place, whether it really can persist after menopause, and more, may help lead to less invasive and more effective treatments for this disease.

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References

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