endometriosis Archives - Page 7 of 16

Heal with Friends Podcast #2: Non-Invasive Treatments for Endometriosis

Published on January 7, 2015

2328 views

Endometriosis affects millions of women worldwide, inducing unimaginable pain and suffering. On average, it takes 7-9 years to diagnose. Once diagnosed, the treatment options for this disease are limited, not always effective and sometimes downright dangerous. There are few endometriosis specialists, less than a hundred worldwide, and very little research funding; leaving women and their families to manage this disease on their own.

In our first Heal with Friends podcast on Fearless Parent Radio, I interviewed our very own Dr. Philippa Bridge-Cook, researcher, writer, endometriosis survivor and fierce endometriosis advocate. Dr. Bridge-Cook walked us through the ins and outs of recognizing and diagnosing endometriosis, the latest research, and treatment options.

For this second podcast, we have brought in two remarkably talented women who are using non-invasive treatment protocols to help patients manage the pain and other symptoms of endometriosis, and perhaps even to reduce the disease progression of endometriosis and other inflammatory disease processes. Erin Luyendyk and Dr. Leslie Wakefield. Dr. Bridge-Cook rejoins the conversation as a patient, having utilized the protocols and services of both our guests with success.

Heal with Friends Podcast Guests

Erin Luyendyk, RHN is a Registered Holistic Nutritionist, Nutrition Educator, Raw Chef and founder of Nutritionista, and contributor to Hormones Matter. As an endometriosis survivor herself, Erin has developed a passion and expertise in nutrition for women, using integrative nutrition to help manage endometriosis, polycystic ovarian syndrome and premenstrual syndrome. She consults with private nutrition clients and health professionals internationally. In her latest post for Hormones Matter, Erin writes:

Endometriosis lesions are like little inflammation factories, pumping out inflammatory cytokines like tumor necrosis factor and interleukins that can cause debilitating pain and scar tissue. The foods we eat contain the building blocks with the potential to fuel both inflammatory and anti-inflammatory states. The everyday food choices we make can help shift the balance to calm down the metaphorical fire, whereas eating the wrong foods will tip the scale against us and throw gas onto the flames. Why would we choose to keep eating foods that just make us feel sick, miserable and make an already bad situation even worse?

Dr. Leslie Wakefield MS, PT, CSCS, is a doctor of physical therapy specializing in Women’s Health and Pelvic Rehabilitation. She is the owner of Wellsprings Health, a holistic therapy clinic in Hollywood, Florida, and Director of the Miami Clear Passage clinic. Dr. Wakefield also writes for Hormones Matter. In describing her patients and practice, Dr. Wakefield writes:

As a women’s health physical therapist specializing in pain and scar tissue, I frequently see patients in clinic with intense, often debilitating pain caused by endometriosis. These women have often tried every treatment made available to them: surgery to cut adhesions and remove endometrial growths, hormone treatments, and symptom control (usually in the form of strong pain killers, anti-nausea, anti-depressant, and anti-anxiety medications). Despite these interventions, some patients report continued or even worsening pain. In the worst cases, their quality of life has been disrupted to the point of suicidal thoughts.
How does it get so bad? It has to do with the chronic inflammation that endometriosis causes wherever it resides in the body.
In chronic inflammation such as endometriosis, this scarring process continues, continuously building scars, or adhesions, that are not needed by the body. As these adhesions form they can limit normal mobility of organs and connective tissue, put pressure on pain sensitive structures, and disrupt the function of the tissues they restrict.

The manual therapy employed by Dr. Wakefield and other specialists like her can reduce the adhesions, increase mobility, decrease inflammation and the pain associated with it.

Heal with Friends Podcast Topic

The question we ask in this podcast: “Are there non-invasive treatment possibilities that can help endometriosis patients manage their pain and other symptoms?” Listen in and find out what we learned.

Non-Invasive Treatments For Endometriosis – Episode 56

About Heal with Friends

The Heal with Friends podcast, along with our companion social health site of the same name, Heal with Friends, are about finding health together. It does not matter if you are physician, researcher, parent, or patient, we want to hear from you and learn from your health experiences. When you join the Heal with Friends network, you can share your stories, your ideas, your hard learned and lived wisdom about health and illness. Together we can find solutions to complex health issues.

About Fearless Parent

The Fearless Parent network, is an “innovative online media platform that’s ahead of the pulse for today’s thinking parent.” Like us, they believe in bucking conventional wisdom, in asking the hard questions. Fearless Parent Radio is the ”thinking person’s daily dose of unconventional, evidence-based news about health, wellness, green living, and holistic parenting choices.”

Tune in, join the conversation, and follow us for monthly shows on topics that matter to you.

The High Cost of Endometriosis

by Philippa Bridge-Cook, PhD

Published on January 5, 2015

3479 views

Those who suffer from endometriosis are well aware of the personal burden and cost of this terrible disease. The cost to society, both in direct healthcare costs as well as the cost of loss productivity of those who suffer from the disease, is less well known. A recently published study addresses this cost, and the results highlight a discouraging disparity in the cost of the disease versus the investment in understanding and curing it.

The economic cost of endometriosis is staggering. The World Endometriosis Research Foundation (WERF) has conducted and published a prospective study of the direct and indirect costs associated with endometriosis in women over 10 different countries. Direct costs were mostly health care costs, and indirect costs were costs associated with loss of productivity. This study found that the average cost per year, per woman, was 11,497 USD. In the U.S., using the incidence of endometriosis of 10 percent of reproductive age women, this amounts to 85 billion dollars per year. Of this amount, approximately two-thirds is associated with lost productivity, and one-third is due to direct health care costs. The economic burden of the direct health care costs from endometriosis were similar to other chronic diseases such as diabetes, Crohn’s disease, and rheumatoid arthritis.

This study also showed that the health-related quality of life in women with endometriosis was decreased. Severe and chronic pain was the most pronounced complaint, and endometriosis had a profound impact across all areas of life—education, work, and social well-being. A separate study by WERF showed that the average loss of productivity due to endometriosis was 11 hours per person, per week. Mental well-being is also seriously impacted. One study has found that 87 percent of endometriosis patients have depressive symptoms (severe in 33 percent), and 88 percent have anxiety.

Dr. Stephen Kennedy, a Professor of Reproductive Medicine, and a founding board member of the WERF, summed up the impact of endometriosis with this statement:

“Endometriosis affects women during the prime years of their lives, a time when they should be finishing an education, starting and maintaining a career, building relationships and perhaps have a family. For these women to have their productivity affected, their quality of life compromised and their chances for starting a family reduced, is something society can no longer afford to ignore. It is time we see serious investment in preventing this debilitating condition in the next generation of women.”

However, society is ignoring it. On every front that we could be making progress against the ravages of this disease, we have made little progress over the last 50 years. We have not improved the length of time it takes to diagnose endometriosis—the average diagnostic delay remains an unacceptable seven to nine years. We have not made significant improvements in being able to diagnose endometriosis non-invasively either by improving imaging techniques, or by developing a non-invasive diagnostic test, such as a blood test. At a time when the molecular diagnostics industry has seen a huge explosion in techniques that could be applied to creating a diagnostic test for endometriosis, we still have no molecular diagnostic test, nor is there one on the horizon.

We have not made much improvement in providing endometriosis patients with effective treatments either. Many physicians are poorly educated about endometriosis and still rely on treatments that are based on outdated ideas about how endometriosis develops, and therefore are not effective, such as Lupron or the birth control pill. And most physicians who offer surgery as a treatment perform cautery or ablation, a method of surgery that is known to give temporary relief at best, or create additional complications without adequately treating the disease, at worst.

Excision surgery is recognized to treat endometriosis lesions more effectively than cautery or ablation surgery, and yet fewer than 100 surgeons in the U.S. are practicing expert excision surgery, a number far to small to serve the over 7.5 million women estimated to have endometriosis in the U.S. Endometriosis patients recognize that integrative treatment plans that often include surgery, sometimes medication, and additional approaches such as physical therapy, nutrition, and stress reduction, provide the best relief from endometriosis symptoms and symptoms from other associated diseases and comorbidities. And yet most doctors treating endometriosis patients do not use an integrative approach.

This lack of effective treatment has been highlighted in two recent studies by the WERF. In the study looking at the costs associated with endometriosis, higher costs were associated with increasing severity of disease, increased pain, infertility, and most surprisingly, the number of years since diagnosis. This suggests that even once diagnosed, lack of effective treatment is causing the costs, both in health care costs and loss of productivity, to increase, the longer a person has the disease. In addition, the WERF studies have shown that even after treatment for endometriosis at a tertiary care center (health care from specialists at a large hospital), 60 percent of women continued to have chronic pain.

Despite these major shortcomings in diagnosis and treatment, and the high burden of endometriosis both economically to society, and on a personal level, to those who suffer with it, there is very little research being undertaken on endometriosis. At clinicaltrials.gov, where all clinical trials must be registered, there are 11922 clinical trials registered for diabetes, 1894 for rheumatoid arthritis, and 798 for Crohn’s disease, three diseases that have similar direct health care costs to endometriosis. However, for endometriosis, there are only 206 clinical trials registered. Basic research is obviously lacking as well, given that the mechanisms underlying the development of endometriosis are very poorly understood.

And in terms of the major shortfall in the number of specialists who can provide excision surgery and integrative care, this is not likely to be rectified soon either. There is little incentive for new physicians to train in this area, because reimbursement from insurance companies is not adequate for the complex surgeries and overall care that endometriosis patients need. In countries with state-run health care, the situation with reimbursement and access to specialists is is even worse.

Why isn’t endometriosis a priority for anybody except those who suffer from it? How many more billions of dollars are we going to waste because women suffering with endometriosis are hampered from leading productive lives, before we start investing money where it can make a difference—in improving diagnosis and patient care for endometriosis?

Hypersensitivity to pain, my ass!

by Chandler Marrs, PhD

Published on October 10, 2014

2245 views

A multitude of reports have emerged in recent years denoting the over use of pain killers and other medications. With narcotic pain killers, in particular, data suggest a four-fold increase in opioid use since 1999, and over 100,000 deaths by opioid overdose during same time period. The data also indicate a close correspondence between the increase in prescriptions for pain killers and pharma sponsored marketing, ‘research’ and policy changes that have inculcated medical agency guidelines over the last decade.

For women, this is a particularly troubling trend, as other research indicates we are the primary targets of narcotic prescribing; women take 50% more pain killers than men. We also take 36% more medications than men in general. Speculation about why women take more pain killers than men, often involves psychosocial characteristics including a reduced sensitivity to pain, a predisposition to pain causing diseases, and a predilection to report the pain to one’s physician. Women seek out medical treatment at a much higher rate than men.

What often fails to get mentioned is that:

Pain medications don’t work as well in women because as we’ve reported before few females, rodents or otherwise, are used in the development of these medications.
Even when female animals or women are used in drug development research, cycling hormones are not analyzed as factors in the effectiveness of the medication.
For the myriad of pain related disorders affecting women, many lack evidence-based diagnostic criteria (less than 30% of Ob/Gyn practice guidelines are based on actual evidence) and frequently physicians and the lack of effective diagnostic criteria hastens many to presume an underlying psychosocial or mental health issue.

I personally think the psychosocial arguments that women are more sensitive to pain than men are nonsense. Rather, I think there is a lot more inherent to our physiology that makes pain related conditions not only more likely, but more difficult to treat.

Consider for example, the menstrual cycle and childbirth. These amazingly complex, biochemically radical, pain-inducing, often life-altering experiences are just a ‘normal’ part of female existence. I dare any man to experience the exponential and repeated cyclic change in biochemistry, akin to a repeated drug addiction and withdrawal pattern, that is the female menstrual cycle. The myth of female hypersensitivity to pain, based largely upon the ineffectiveness of pain or medications that were never designed for her changing biochemistry, is just that, a myth. And though I do admit, some humans are more sensitive to pain than others, the contrived experimental methods that designate women as hyper-sensitive do great damage to our understanding of women’s health and the differing pharmacokinetics across the menstrual cycle, pregnancy, postpartum or menopause.

And then of course, there is endometrial sloughing, necessitating a cramping mechanism to propel the tissue outward or the grandmother of all pain experience, childbirth where women deliver 8lb humans through a cavity opening that expands only to 10 centimeters, often times choosing to not utilize pain medications. These ‘normal’ events of a woman’s life are not indicative of a ‘hypersensitivity to pain’.

No, I don’t buy this mumbo jumbo that women are somehow more sensitive to pain than men. If anything, most women have a higher tolerance to everyday pain than most men. But there is a rationale to perpetuating this myth; it limits innovation in women’s health.

Why innovate when a company can make billions prescribing the same old medications at higher and higher dosages, to more and more people? Why address the needs of half the population, when one can blanket the market with drugs for the entire population? And to that point, why develop more accurate diagnostic criteria or more effective medications for conditions that only effect a small subset of the total population; especially when medications developed over 50 years ago can be used? If these medications are addictive, have side effects that necessitate other medications and are extremely difficult to withdraw from, well then, those are just added bonuses. It’s a wonderful business model, albeit a little less than ethical.

Despite the obvious marketing excess, we as consumers bear as much responsibility for the increase in narcotic prescriptions as does the pharmaceutical industry. We are letting this happen. Let’s face it, it is much easier to take a pill to make the pain go away (or eat a pint of ice cream to alleviate stress) than go after the root problem. It is difficult to address root causes. It is especially difficult if one is suffering from a medical condition that is chronic, pain-inducing, poorly understood, not easily diagnosed, and for which there are no effective medications. Women disproportionately suffer from these types of conditions – think fibromyalgia, endometriosis or even migraines. We also make 80% of all family medical decisions. So ladies, we need to stand up and begin educating ourselves and our families about health and disease. We must demand more research and we will probably have to lead it ourselves.

Every 8 Minutes a Young Adult is Diagnosed with Cancer

by Stacey A.

Published on June 24, 2014

2120 views

Over 70,000 young adults (YA) receive a world-altering diagnosis of cancer each year. I have. To put this into clearer perspective, that is one person, 15-39 years of age, diagnosed with the deadly disease, every 8 minutes.

I am one of them.

It is estimated that two out of three YA cancer patients will experience at least one major health complication as a result of their condition or life-saving treatment.

I am one of them.

Approximately, 1 out of 3 of them also undergoes further potentially-fatal complications due to their illness or therapy.

I am one of them.

They face a unique set of challenges (different from those of their younger child, and older adult, counterparts), ranging from increased risks for psychological and social issues, to distinct physical and financial concerns. I have. This is my 8 minutes, and how I became a statistic not just once, but twice. This is my cancer story.

Stage 3 Colon Cancer

I became a statistic when I was diagnosed with advanced, stage-3, colon cancer, in my twenties. I should have been out enjoying the warm, sunny spring day with friends, but, instead, I was at a doctor’s visit, getting nearly the worst medical test results possible. I should’ve been thinking about how to spend summer break, and looking forward to the season ahead, but, instead, I was feeling small, cold, and alone while stuck in an exam room. I should have been anticipating my future, and planning for the next phase of my life, but, instead, I was frozen in time and place at the office check-out window…trying to figure out how to tell everyone the bad news.

Cancer and Infertility

I quickly became infertile from medically-induced early menopause as a result of radiation treatment, and underwent brain fog from chemotherapy, back then. I am now undergoing recurrence of my primary tumor in my thirties, owing in no small part to being denied access to continued healthcare and regular follow-ups (after my original therapy), due to a preexisting condition (read my story of trying to get a diagnosis and treatment without insurance). And, I currently expect to live with the disease and its side-effects as a chronic illness for the rest of my life, however long or short my time may ultimately turn out to be. This means living with fatigue, low hemoglobin, iron-deficiency anemia, and sexual dysfunction, among other problems. It also puts me at increased risk for infection, digestive trouble, bone and joint pain, surgery for colostomy bag or hysterectomy, cancerous spread to lymph nodes, and secondary malignancies of the lungs, GI tract, or female organs, plus other worries.

Cancer and Long Term Health

The long-term and permanent damage done to my immune and endocrine system has proved to hold further consequences for me, as well. I am still tens of thousands of dollars in debt from my original prognosis, and debts have only continued to mount, since I first began to show symptoms of my cancer returning (which took an unnecessarily long time to confirm because of the healthcare bureaucracy of the time). It is a true challenge, trying to return to the workforce ~ not only because of my health status, but also because of my bi-weekly medical schedules; 3 – 5 days of labs, treatments, shots, other doctor appointments, and recovery periods in-between, every other week. Likewise, it is very difficult to remain positive and hopeful, when you’re often depressed and anxiety-ridden about how to pay for rent, bills, and groceries, on extremely limited resources. It’s equally tough to relax and try to relieve stress by enjoying even a short time out (although it may well be what you actually need the most), when you feel guilty about the extra expense. You may already be leaving your loved ones with financial burdens that they won’t necessarily know how to handle any better, especially without you, after all. And, it’s NEVER ever easy to be judged harshly by those who don’t understand the regular, ongoing pain, fear, loss, and uncertainty, which you go through and deal with on a daily basis. That was my 8 minutes, and how I became a statistic not just once, but twice ~ and, this is why hormones and hormones research matter to me.

Pain After Endometriosis Excision Surgery

by Philippa Bridge-Cook, PhD

Published on June 11, 2014

15937 views

When an endometriosis patient takes the step of having laparoscopic excision surgery to treat their endometriosis, they have often already been through a long journey with many failed treatments. This journey often includes treatments such as multiple rounds of different types of birth control pills, stronger hormonal medications designed to suppress menstrual cycles (such as Lupron or other GnRH agonsists), multiple cauterization or ablation laparoscopic surgeries, and various different complementary alternative medicine approaches.

Most patients who undertake excision surgery after trying many or most of the above, do so on the basis of their own research, since many gynecologists are misinformed about endometriosis treatment, and are not trained to do excision surgery. A recent worldwide consensus paper on the management of endometriosis states that “there is unanimous consensus over the recommendation to excise lesions where possible, especially deep endometriotic lesions, which is felt by most surgeons to give a more thorough removal of disease.” Sadly, there are fewer than 100 surgeons in North America currently practicing expert excision of endometriosis.

Patients come to excision surgery with hope that this treatment will finally bring them relief. And when pain persists or recurs after excision surgery, patients may feel disappointed, hopeless, and confused. However, there are many causes of pelvic pain that are not endometriosis, which can continue to cause pain even after expert excision surgery, and once these other causes are treated, excellent pain relief and relief of other symptoms may be achieved. Although it may be natural after previous surgeries have failed, to assume that endometriosis is still the cause of the pain, if surgery was performed by an expert, it is prudent to rule out other potential causes of pain before assuming that endometriosis continues to be the culprit.

Adhesions After Surgery

Adhesions are a very common occurrence after laparoscopic excision surgery. Adhesions occur in 70 to 90 percent of patients undergoing gynecological surgery. In some cases, adhesions may be present but not cause pain, but adhesions can also cause chronic abdominal or pelvic pain, small bowel obstruction (where the intestines are kinked or twisted, and are partially or completely blocked), female infertility, and more. Adhesions are the primary cause of bowel obstructions and are a common cause of hospital admission for people with a history of abdominal or pelvic surgeries.

Pelvic Floor Dysfunction

Pelvic floor dysfunction is also a common consequence both of endometriosis itself, and of the surgeries used to treat it. The pelvic floor is a group of muscles and other tissues that form a sling from the front to the back of the pelvis. When the muscles are too tight, too relaxed, or a combination of both, it can result in problems with urination or bowel movements, pain with sex, pelvic pain, genital pain, back pain, and/or rectal pain.

Adenomyosis

Adenomyosis is a disease of the uterus, where the inner lining of the uterus (the endometrium) is found within the muscle wall of the uterus. There is no clear association between adenomyosis and endometriosis, but it is possible to have both conditions. Adenomyosis may be underdiagnosed because it is difficult to see using imaging techniques such as ultrasound, and the symptoms overlap with many of other conditions causing pelvic pain.

Interstitial Cystitis

Interstitial cystitis is a disease of the bladder that can cause pelvic pain, bladder pain, urethral and/or vaginal pain, painful sex, urinary frequency and urgency. Some doctors have found a very high association between endometriosis and interstitial cystitis, where many patients have both conditions. This has led to the two diseases being nicknamed “the evil twins.”

Vulvodynia and Pudendal Neuralgia

Endometriosis patients may also be more susceptible to pain syndromes involving nerves in the pelvic area, such as vulvodynia, a condition associated with pain in the opening of the vagina, and pudendal neuralgia, a condition involving pain, burning, and/or numbness in the genital area and rectum. The potential cause and effect relationship between endometriosis and these other conditions is not clear; however, some doctors theorize that chronic inflammation, immune system dysfunction, and neural pathway sensitization may play a role in the development of multiple pelvic pain syndromes.

Not All Pelvic Pain is Endometriosis

Unfortunately, although endometriosis is a painful and often debilitating condition all on its own, in many patients other conditions also contribute to pain and other symptoms. For doctors and patients alike, it can be tempting, once a diagnosis of endometriosis is made, to blame every symptom arising in the pelvic area on endometriosis. However, pain after careful excision surgery can often be caused by one or more of these other pelvic pain conditions, and a correct diagnosis of the underlying cause of the pain is crucial to successful treatment.

From Lupron Victim to Victims’ Advocate

by Lynne Millican, RN, BSN, Paralegal

Published on May 22, 2014

6693 views

After being prescribed Lupron for endometriosis and several IVF attempts during the years 1989 – 1992, I began to experience multiple symptoms and adverse health – virtually all of which were deemed by my physicians as “unrelated to Lupron”. But because there had been such an abrupt change in my health since taking Lupron, I strongly suspected Lupron was responsible, and so started scouring the medical, pharmaceutical, scientific, and government literature for any validating bits of information. Lupron (a.k.a. leuprolide, leuprorelin) is used on women, men, and children for A-Z indications.

Over the course of decades I visited nearly every university and medical library in Boston and had read countless studies and articles, accumulating a significant body of adverse information about Lupron’s effects and risks. Ultimately my health deteriorated further, and home-based internet searches replaced trips into libraries. All this information sat on shelves, doing no one any good, until finally in 2008 a friend created the basic website and the Lupron Victims Hub was born.

The Inception and Goals of Lupron Victims Hub

Lupron Victims Hub was founded in 2008 to serve as a central resource for information not otherwise readily found concerning the drug ‘Lupron’. Lupron (a.k.a. leuprolide or leuprorelin) belongs to a class of drugs known as “GnRH analogs/agonists” or the “relins” – i.e., Lupron = leuprorelin; Synarel = nafarelin; Trelstar = triptorelin; Zoladex = goserelin; buserelin; histrelin). Because of personal exposure to the relin, and the large market share that this drug has enjoyed, the website’s focus has been upon Lupron. To a lesser extent, the website also includes risks of other relins, as well as general risks to the relins/GnRH analogs as a whole.

The website exists as a resource for information on the risks and adverse effects of Lupron for consumers, medical professionals, attorneys, academia, and the media. All my research, information, support, and assistance has been provided pro bono. Contact from victims and families frequently centers on their search for doctors and lawyers to help them – but at present time there is no such ‘Post-Lupron doctor/lawyer referral list’. Hopefully the future will contain ‘Post-Lupron clinics’, with ample physicians and various specialties devoted to the diagnosis and care of Lupron victims – but currently, although there is a real nationwide need for such clinics, the thought is but a wishful pipe dream.

Twenty five years ago I felt like a lone voice, no one knew anything about Lupron, and no doctors or lawyers entertained a thought of this drug’s lingering adverse events. Now there are thousands of Lupron victims clamoring for help, lawsuits are in the courts and in the pipeline, and several physicians have gone on record about Lupron’s dangers, Lupron’s hidden data, and the serious permanent adverse effects upon women’s bodies. It would seem that a critical mass is being reached, more media coverage is occurring, and more and more doctors are in earnest trying to understand ‘what the hell happened’ to the health of their formerly vibrant patients.

It took me personally a dozen years of searching post-Lupron to find understanding, caring, and appropriate medical care – a totally unacceptable situation. When doctors and the FDA (see ‘Open Letter to FDA’ ) are uninformed of the drug’s data and risks, they are ill-equipped to understand or accurately assess Lupron’s effects. The atrocious “doctor visit stories” women recount post-Lupron (including my own) are hair-raising and nothing short of nightmare scenarios. Compassionate, diligent, and proper attention and care of these patients is urgently needed, yet negligently absent.

What We’ve Learned about Lupron

Information pooled on ‘Lupron Victims Hub’ should clearly identify that ‘Houston (and elsewhere) … “we have a problem”’. As for goals, I hope that my website will facilitate long-overdue acknowledgement of this public health crisis, and that those entrusted with our health and safety will initiate an investigation into Lupron’s long term adverse effects, remove the drug from the market, and establish appropriate medico-legal advocacy for these Lupron victims. And any order will do.

Participate in Research

Hormones Matter is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data. 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 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 – Buy an Unsubscription.

Endometriosis Awareness: Speak Out

by Erika Myers-Khan

Published on March 13, 2014

3738 views

I didn’t know that there was a name for it. Like so many others I thought that what I went through was so uniquely me. Like the kid who hides a birthmark or scar, why would I put my unique condition on display? The doctors didn’t have a name for it; they made me believe that I was weak and that my pain was not serious. I didn’t know that I had relatives living with it, and I certainly didn’t know that 10% of all women suffered from it.

After eight years I was no longer able to hide what was happening to me. My pain and fatigue left me with one “normal” week out of four. My thoughts of a post-graduate program in advertising were replaced by the anticipation of a precious hour of pain relief to do the simplest tasks, after lying quietly on my right side for the required thirty minutes. It was not until then that someone mentioned endometriosis.

Common symptoms of endometriosis such as increasingly painful menstrual cycles, chronic pelvic pain, cycles of constipation and diarrhea, nausea and vomiting, painful bowel movements, back and leg pain during menstruation and constant fatigue, were all complaints that I had mentioned to a doctor at one time or another. How was it possible that physician after physician had turned me away without answers? More importantly, how did a strong woman like me let eight years go by without standing up for myself?

For a disease that affects so many, cripples entire families, and prevents some from starting their own families, our society is surprisingly quiet about endometriosis. Many physicians still believe that endometriosis only affects the reproductive organs and that those symptoms can be swept away with pregnancy.

If I had known then what I know now, I would not have accepted being called weak. If I had known that there was a disease called endometriosis that could cause most, if not all of my symptoms, I would have kept looking for a doctor who believed me. If I had known that there was an entire vocabulary enabling me to get through to my doctor, I would have asked more questions. If I had known that the diagnosis of a disease with no cure would bring me validation and relief, I would have given all of the gritty details of what I was going through to every single person that I came into contact with.

Those of us who have traveled the long, dusty road to diagnosis that says “proceed at your own risk”, are responsible for making that road as smooth as possible for those who come after us. There are a handful of pioneers who have tirelessly shouted “en-do-met-ri-o-sis” from the rooftops so that so many of us could find our way to specialists and accurate information on our disease. As long as we neither know what causes nor cures endometriosis, this work will never be done. In the meantime, it is our responsibility to teach our children that endometriosis exists, and to tell our friends that our disease affects more of our lives than we sometimes let on. It is also crucial to build an understanding of endometriosis in the workplace, by holding an open dialogue about how endo affects us on the job, while discussing mutually beneficial strategies for moving forward with employers.

Who hides a birthmark these days? It is what makes us unique. Who hides a scar anymore? It tells the story of where you have been and what you have done. Why hide the havoc that your endometriosis causes in your life? It shows what a strong person you are, and could lead someone else to a diagnosis.

I have been called a strong woman many times in my life; rarely have I believed it. Once as a child I stood up for myself, and then to my dismay, burst into tears. I felt so much shame because of showing what I perceived to be weakness. My grandfather followed me to where I was sitting and said “hmmph, little bulldozer, you can get through anything”. It was then that I understood: strength is not the absence of weakness, but instead the courage to show vulnerability and speak the truth.

March is Endometriosis Awareness Month. I ask you to open up and tell one person about your endo in detail. Your bravery could save someone many years on the bumpy road to diagnosis, and a lifetime of looking back wondering “what if”.

Address to the Million Woman March for Endometriosis

by Nancy Petersen

Published on March 13, 2014

3526 views

When I was diagnosed with endometriosis in 1969, I had spent 17 years in pain, and had been hospitalized many times, all without a diagnosis. I was subjected to multiple scoldings from medical personnel who claimed that pelvic exams shouldn’t hurt, even as I tried to leave the exam table with the ratcheted speculum still in place. They also dismissed me psychologically by saying “it’s just her period”. Today, 44 years later, instead of prompt diagnosis and prompt treatment, it takes an average of 9 years for women to receive an accurate diagnosis. That’s 9 years of negligence, of severe pelvic pain and psychological dismissal. We have not come very far at all.

Making things worse, some in the medical community are advocating that “minimal” disease does not need any treatment. After all, it’s only minimal disease, right? Well any endometriosis lesion, no matter the size, can cause significant inflammation of the lining of the pelvis (the peritoneum). Try living with a couple of grains of sand in your eye for a lifetime. It causes the same kind of inflammatory response. This approach to endometriosis care is outrageous; the attitude of “there is not enough money to treat all 180,000,000 women worldwide” for their endometriosis verges on misogynistic. Let me tell you, if 180 million men worldwide reported unbearable pain during sex, bowel movements and exercise, and they were offered feminizing hormones, surgical castration or pregnancy as treatment options, it would cause an international emergency and countries would transfer their combined defense budgets in order to find a cure.

The peritoneum is the thin, Saran^™ wrap-like lining of the pelvic cavity and the organs. Its role is primarily protective. If there is blunt abdominal trauma, infection, appendicitis, or leaking organs it reacts swiftly and predictably: the patient experiences bloating, intense abdominal pain, nausea, paleness, restlessness, anxiety (recognize those symptoms do you?). Every medical and nursing student on the planet has been taught to recognize these symptoms and respond quickly. A differential diagnosis must be made promptly and the peritoneal-quality pain treated with pain medication. In women with endometriosis the medical community somehow dismisses the intensity of her pain with the assessment: “oh, it’s just her period”. It is outrageous that patients presenting with peritoneal-quality pain are ignored in both the emergency room, and in private practice, and the patients’ pain is not treated.

If caregivers do not have the skill or interest in excising endometriosis, they should at least treat the pain. Endometriosis pain is as intense as appendicitis; I know because I have had both. Or better yet, caregivers could refer the patient to someone who can remove disease effectively. On the endometriosis boards on Facebook, etc. (where thousands of desperate women with endometriosis gather) we have identified less than 100 gynecological surgeons out of 52,000 in the USA who treat disease effectively. And yet most gynecologists believe they can treat this disease effectively. Treating effectively means permanent relief of pain in one or two surgeries. Drugs do not treat endometriosis; they alter a woman’s normal hormonal.

Once, when giving a lecture on “Modern Concepts in Endometriosis” I was confronted during the intermission by two surgeons. These surgeons said surgery was not necessary to treat endometriosis. They claimed they were “curing” their patients with triple dose danazol and then they stormed from the room. After intermission, when I resumed my lecture, the crowd wanted to know what the surgeons had said. I said that the surgeons claimed they were “curing” endometriosis with danazol. I wondered aloud why the surgeons would think that. The nearly 100 women in the room shouted almost in unison, “Because we don’t go back”. So if caregivers are thinking they are helping their patients with medical therapy, perhaps they are not listening closely enough, or their patients are not coming back.

In the 1980s when I was managing the Endometriosis Treatment Program at St. Charles Medical Center in Bend Oregon, we saw patients from around the world. All of these patients had multiple treatment failures, both surgical and medical. Seventy-five percent of the patients had been dismissed as “neurotic”. All of these patients had active, painful endometriosis which was determined by independent, board certified, pathologists. Today, I still hear from woman after woman who has been told to seek psychological help because she doesn’t have any disease. And yet when we get her into the hands of a doctor who performs advanced excision surgery, she has confirmed, active endometriosis and she experiences dramatic, long-lasting relief.

Women with endometriosis live lives of quiet desperation. They have learned to be quiet because most doctors do not believe the quality and severity of their pain. Their support systems often abandon them because doctors find nothing wrong. Yet these women present with peritoneal signs and symptoms. Will the medical community continue to turn a blind eye to these women? Or can the medical community find the necessary compassion for their plight? If the medical community cannot surgically resolve their disease, could they at least consider referring these women to someone who can? Or can we refer these patients to a pain management program? Multiple peer-reviewed studies prove that patients taking narcotic pain medication do not become addicted to their pain medication. They may become dependent, but at least they will be able to get up off the couch, put the heating pad away and resume living their lives. Endometriosis is not a terminal disease, but despair can be terminal, and women with endometriosis experiencing despair have paid the ultimate price. I know of many women with endometriosis who felt there was no other way out; and even one is simply too many.

It is unacceptable to continue to expect women to cope with peritoneal-quality disease on their own, without help, and without relief. We need surgeons who are trained to surgically deal with lower stage disease wherever it is located. We need referral centers for women with complex, deeply-infiltrating disease. Hysterectomies do not cure endometriosis. There are thousands of us that were fooled into believing that a hysterectomy is a cure. The medical community cannot continue to ignore our plight. The medical community is either part of the problem, or part of the solution. There is a significant body of data that shows that excision of endometriosis lesions restores lives. How long will the medical continue to ignore that?

One of my heroes is Sister Kenny, an Australian Nurse who developed physical therapy for the acute effects of polio. Her therapy and hot woolen packs prevented joint fusion and relieved pain. She was soundly trounced worldwide by orthopedic experts caring for polio patients for years. Gradually, there was recognition that she was right. When asked why she thought it took so long for others to see that suffering could be ended with simple changes in care, she responded: “When we speak with the voice of authority, we come to believe we are the authority”. When I read that, I thought, yes, despite evidence to the contrary. Well, there is evidence, plenty of it that skilled excision restores lives.

Finally, Margaret Mead is a hero of mine. She was a cultural anthropologist from the 20th century. She said: “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” Be that small group (180 million worldwide) that changes the world for women with endometriosis. Work with gynecologists everywhere to raise awareness of just how much this disease impacts lives. Let them know just how inadequate many approaches are. Let them know that surgical management of endometriosis is truly effective. This approach gives women back their lives, their sexuality, their education track, their fertility, their love of life. It gets women up off the couch, and allows them to turn off their heating pads. It is time to stop ignoring the destructive impact this disease has on women’s lives, the lives of their families, spouses, significant others. Actually, it’s way past time.

Nancy Petersen R.N. (Retired) — Co-founder of the Endometriosis Treatment Program at St Charles Medical Center in Bend, Oregon

Hormones Matter

Where health, hormones, and a whole bunch of other stuff, make sense.