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Parasites: A Possible Cause of Endometriosis, PCOS, and Other Chronic, Degenerative Illnesses

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Dorothy Garcia

My intention with this post is to help inform the general public about a possible cause of various chronic/degenerative illnesses: parasites. I should begin by saying, I am NOT a medical doctor. Although I have much experience working in the healthcare field as an employee of various naturopathic doctors, chiropractors and holistic practitioners and I am a massage therapist and have extensive training in anatomy and pathology, my training and medical experience with parasites occurred AFTER I was diagnosed with endometriosis and used Lupron.

When I say parasites, I am using this term broadly. I am not just talking about worms. I’m also speaking of arthropods, flukes (flatworms), roundworms, pinworms, hookworms, tapeworms, protozoa, fungi, slime molds, mildews, bacteria, spirochetes, mycoplasmas, nanobacteria, etc. Parasites can range in size from microscopic (nanobacteria) to 30 feet long (tape worms). They each have their own life cycle, method of reproduction and can cause damage to multiple organs. In my case, parasites were responsible for my endometriosis and ill-health.

My Struggle with Endometriosis

Since the age of 15, when I finally hit puberty, I experienced crazy irregular periods. I was bleeding every two weeks. Little did I realize when I started my periods that it would be the launch-pad into a life of routine doctor and hospital visits.  I had various laparoscopic surgeries for ovarian cysts. I have tested almost every birth control on the market (from the pill to the patch).

No matter what pill I took or what surgery was performed, I wasn’t getting better. Instead, as the years passed, I got progressively worse. 

At a young age, I grew accustomed to being sick. I was used to getting my blood drawn and having IV’s inserted (and it usually took 3 pricks to hit a vein because my arms were so “fluffy” from the extra weight I carried). I followed the doctor’s orders, filled my prescriptions, and my parents paid the co-pays thinking they were doing the best of their child.

Everything came to a head in my early twenties, when I was a missionary for my church.  My service was cut short due to the symptoms of endometriosis. At that point, doctors had put me on the OrthoEvra patch. It was yet another failed attempt at using birth control to treat my symptoms. Because I was far from my primary doctor, and no one knew what to do with me, I was sent back home.

My primary doctor prescribed narcotics for the chronic pain and referred me to a gynecologist who was well-versed in endometriosis. His opinion, after many diagnostic procedures, was that the endometriosis had spread so much that the only option I had was to try Lupron as an attempt to save my uterus. If it didn’t work, he would do surgery.

I opted for Lupron.

He also informed me he wanted to prescribe Prozac to help with the side effects that come with Lupron. I was already well versed in the side effects of Prozac, and that wasn’t something I wanted to deal with. I politely declined.

I was told it would be a couple of weeks before the Lupron would be available, due to needing pre-approval from my parents’ insurance (since it cost $500/shot at that time).  Upon leaving the gyno’s office, I started to grow a wild hair… I decided to make a pit stop to the health food store before I went back home. I bought a bottle of herbs for female hormone balance for $6. It was the best decision of my life.

One week after taking the herbs I noticed that the pain was starting to back off.  I was able to ween myself off the pain killers. By the time I was back at the gyno’s office to get my first injection of Lupron, I was already having second thoughts. Why go through with this drug if the herbs are working? I really wish I had listened to my gut in that moment. Once I had my first injection, my life started to turn into my own personal hell.

Hot flashes, pain in my joints, lethargic, constantly hungry, and moody; I was no longer myself. Granted, I wasn’t in pain like before, but the pain was gone when I started the herbs. I couldn’t say Lupron did anything for the endometriosis pain. All I knew is the effect of the drug was worse than I expected. I felt like I aged overnight, and I didn’t know what to do about it.

After two injections, I made the decision to stop using Lupron.

Fast forward a couple of years later, I eventually got married and became a widow before I celebrated my one year anniversary. I fired my medical doctor, filed a complaint with the FDA about Lupron and decided to pave my own path to healing. I was done with playing chem-lab with my body. If a $6 bottle of herbs could make that big of a difference, then what else was out there that I had yet to explore?

Introducing the Practitioner Who Saved My Life

I moved out west to Utah in an attempt to build a new life for myself. Some friends of mine, who also re-located to Utah, informed me about a homeopath that helped them overcome the chronic/degenerative conditions that they experienced. One of them was working for him.  He let me know that he spoke to the practitioner about my situation and wanted me to come to the office right away. The practitioner said my problem was an easy one to fix.

Now, I’m sure you can imagine what I thought when I heard someone say endometriosis was “easy to fix”. I didn’t believe it. I wasn’t sure what I was in for, but I figured I had nothing left to lose.

During my visit with him, we didn’t really talk much about endometriosis. Instead he educated me on parasites. He informed me that what I was experiencing was actually the result of parasites invading the uterus and endometrial lining of the uterus. I learned how parasites don’t just live in the digestive tract, they can live anywhere in the body. There are parasites that have their preferred organ to dwell in (like liver flukes – the name says it all). They can inhabit the pancreas, the brain, the lungs, the heart and even the body cavity.

It is very easy to become a host; too easy. The tragic thing about parasites is that they go on living, completely undetected, slowly killing their host by leaving them chronically nutrient deficient, suppressing their immune system, burrowing holes in their organs and slowly eating them alive. The worst of it, the medical community has turned a blind eye to this epidemic and traditional diagnostic exams (stool samples and blood samples) aren’t sufficient enough to detect them.

My new practitioner explained how the uterus is a perfect place for parasites because it is a hollow space, isolated from the digestive tract (thus, it can’t be touched by typical parasite cleanses). He posed the question to me, “Now the cells of the endometrial lining of the uterus are specifically designed for that part of the uterus, and nowhere else in the body.  How do you think those cells got outside of the uterus?  How did that webbing appear from out of nowhere?  Does the body decide it’s going to magically displace cells to wherever the heck it wants to? And if you think about it, why are dogs and cats recommended to get de-wormed on a regular basis to help them stay healthy? Dogs have to take heart worm pills every month. Why do we think we are immune to parasites?”  When he posed that question, I began thinking about my childhood.

When I was a kid, I used to play with stray cats that lived in my yard.  We also had a dog that lived outside. I remember when I finished playing with them, I never washed my hands (I lived in the country so hygiene wasn’t really enforced in my home).  It made sense as to why I would get parasites “down there” because if I had parasite eggs on my hands (from playing with the animals) and I used the bathroom, then the eggs could easily have made their way from my hands to the toilet tissue, to my girl space. Or if I used a tampon without washing my hands beforehand… well, you get the picture.  It started to make sense.

At the close of my session with him, I was thankful that fate brought me to his office.  I felt completely enlightened on my condition.  I felt relief that there was someone out there that had an explanation as to what was going on inside my body.  I spent the last of my moving money on my bill at his office (this covered his office fee and remedies). I didn’t regret it one bit.

Recovery from Endometriosis and Uterine Parasites

The protocol he used was very simple. First he used muscle testing (Applied Kinesiology) to check to see what kinds of pathogens were keeping my body sick (for example: parasites, bacteria, fungi, molds, mildews, yeasts, etc.) and recommend herbs and homeopathy to kill it off. Then he would check for weaknesses in various body systems and organs and recommended herbs and homeopathy to make them stronger. The idea behind this is that once you get rid of what is suppressing the immune system, then the body’s natural defense mechanisms kick in and the body is better capable of absorbing nutrients from food.  When the body is getting the proper nutrition needed, and no longer robbed by the parasites, then the body can start repairing the damage that was done.

The way I knew this was working was from what came out of me when I went to the bathroom. Granted, he did warn me that I might not see much because typically the worms get broken down during the digestion process. I did see some residuals of worms in my stools. They looked like little orange sticks that resembled skinny shredded carrots.  I saw a bunch of black granules that resembled sand.  I also saw white pieces that resembled sesame seeds and rice.

Six months of working with him I felt like a new person. I felt a huge shift in my body and my being. The cramping and pain had stopped.  I had more energy and stamina. I wasn’t feeling down and depressive.  I was hopeful for the future. And now seven years later, I am a health and fitness coach, massage therapist, remarried, a mom of two kids (without any hormone therapy) and living a life that I once dreamed of while lying on the couch, watching Sex In The City high on narcotics. Back then, I didn’t even think something like this was possible.

When I speak with other women, currently enduring the pains of endometriosis, and tell them I’m now symptom free and no longer on medications, they look at me like I’m crazy.  I know that I’m probably the first and only person to pass through their life making such a claim.  When I speak with other medical doctors about my experience, they are quick to brush it off because I worked with a “quack” (because homeopathy is considered hog-wash, even though it’s existed for hundreds of years and is still widely used in Europe).  My new primary doctor (who was also my OB when I was pregnant with my kids) saw the endometriosis battle scars on my uterus when he performed the C-Section for my babies.  He too refuses to delve into how I recovered from endometriosis.

It blows my mind every time.

Why Is This Being Ignored?  Information about Parasites for Doctors and Holistic Practitioners

The reason why parasites aren’t considered in conventional medicine is because most people in the academic/medical field consider parasites to be a third world problem. Parasites are not solely a third world problem. We live in an age where there are no borders and boundaries. We can travel from one end of the earth to the other in a matter of a few hours. We can experience other cultures and ways of life as long as we hold a passport.  Because of this, certain pathologies that were isolated in one region of the world are now easily spread to other areas. Wildlife that was native to one part of the world can suddenly end up in your back yard, disrupting the ecosystem, due to someone smuggling it onto a plane. Even our produce and meats are imported from other countries. Just because something may be a problem in one part of the world doesn’t mean we are immune to it here in the US. Just because one species of animal may be a common host, doesn’t mean we aren’t a possible carrier for it as well (especially if the host animal is part of our diet). So despite our insistence to the contrary, parasites are a problem; one likely causing a myriad of chronic health problems (including Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, etc.).

Another reason most physicians don’t consider parasites is because, most of the diagnostic exams available are grossly inadequate for parasite testing.  Stool samples are the main diagnostic exam for parasites. If there are parasites in the stools it’s still not an accurate representation of what’s going on inside the rest of the body. Nevertheless, stool samples are a good start, but they are not commonly used in primary care.

If you are a naturopathic doctor, it would be of great benefit to you and your patients to consider adding some form of testing for parasites to your protocol; especially when dealing with patients who struggle with chronic/degenerative illnesses and who are not benefiting from diet and lifestyle changes or conventional medications. If you are a practitioner that wants documentable proof (especially for insurance billing), then prescribe a stool test for your patients to check for parasites. There are various labs that do detailed exams for parasites. You can find them on Google, but here are some labs that offer parasite testing:

  • Great Smokies Diagnostic Labs:  1-800-522-4762
  • Diagnos-Techs:  1-800-878-3787
  • Doctor’s Data:  1-800-323-2784
  • Parasitology Center:  1-480-767-2522

Please note, I have no association with these labs. These are provided for informational purposes only. Even though stool samples are considered the gold standard for parasite testing, a better way to test for parasites might be muscle testing. This is the method that was used by the doctor who helped me overcome the parasites that were wreaking havoc on my health.  Muscle testing isn’t as widely accepted in the medical field, but that didn’t concern me.

Muscle testing (aka: Kinesiology) is a tool that taps into the innate wisdom of the body and, when used properly, allows the body to “tell” you what is wrong with it.  I have had this used several times in my life using various healing modalities that I learned in massage school. I was always pleasantly surprised how accurately those I worked with were able to get to the cause of a problem just by asking very specific questions and allowing the body to respond accordingly. Unfortunately, it is not something that medical insurance will cover, nor a means to get diagnoses for the proper ICD codes for insurance reimbursement.  All I know is it was the means to get me to where I am today, and I am forever thankful to the practitioner who was wise enough to learn how to use it properly and put into practice what he preached.

For Those Suffering from Endometriosis, Infertility, PCOS, Chronic Fatigue Syndrome, Fibromyalgia, IBS and Other Similar Illnesses: Get Tested for Parasites

If you are one who earnestly desires healing in your life, then you must be the one to seek it out for yourself. You cannot wait for someone else to hand it to you on a silver platter.  It’s a complicated process, but as you can read here it’s not always as complicated as it may seem. The answers are usually much simpler than we imagine.

Do your research. Try new things. If you’re already miserable with how things are now, then it’ll be of great benefit to you to change it up.

Just don’t make the mistake of self-diagnosis. Granted, the herbs helped me very much before I received the Lupron injection, but they weren’t the answer to the problem. They were a band aid.  I needed the help of a professional who had experience dealing with this problem to help unravel the tangled web that was my body. Don’t be afraid of bringing up the possibility of parasites to your doctor and ask for testing. If your doctor doesn’t believe you, then find another doctor, preferably a naturopathic/holistic doctor.

You were born to live and enjoy your life. Live it by design, not by default.  Don’t let some microscopic organism/illness/diagnosis rob you of that joy!

References for Educational and Research Purposes

If you know of scientific studies connecting parasites to chronic illness, especially endometriosis, please add to the list.

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Women in Pain: Problems and Mistreatment

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Philippa Bridge-Cook

Chronic pain in North America is a major problem for men and women alike, affecting about one-third of adults. Many people of both genders do not receive adequate treatment for their pain. This causes great personal suffering, as well as high costs to the economy through direct health care costs and loss of work productivity for those in pain. However, women with pain face additional problems that suggests there is a systematic bias in the way healthcare is delivered to women. Diseases that affect mostly women are generally poorly understood and understudied, and although women report pain that is more frequent, more severe, and of longer duration than men, in general women’s pain is treated much less aggressively.

Women are at higher risk of developing a chronic pain condition than men. For example, women have triple the risk of autoimmune diseases, which are often associated with chronic pain, compared to men. Women also suffer from certain painful diseases that are rare in men, such as endometriosis and vulvodynia. Endometriosis alone affects one in ten women, and women who have endometriosis often have other painful diseases as well, such as interstitial cystitis/painful bladder syndrome.

However, research into causes and treatments for these diseases that disproportionately affect women is sadly lacking. A report written by the Campaign to End Chronic Pain in Women looked at six conditions common in women that are routinely misdiagnosed and ineffectively treated: endometriosis, vulvodynia, chronic fatigue syndrome, fibromyalgia, interstitial cystitis/painful bladder syndrome, and temporomandibular (TMJ) disorders. Examining funding to these six conditions by the National Institutes of Health (NIH) revealed that on average, the NIH spends $1.33 per affected patient on research into these conditions, compared to $186 per patient for Parkinsons’s disease, or $53 per patient for diabetes.

However, one need not look at diseases that are underfunded, poorly understood, and lacking effective treatments to find evidence of a gender bias in medicine. One of the best examples of gender bias is, surprisingly, in coronary heart disease. When presenting to emergency rooms or hospitalized for a heart attack, multiple studies have shown that men receive faster access to diagnostic tests and treatments, and men are more likely to receive advanced procedures and better care (for example,see here, here, here and here), and these disparities have not changed over time.

Although heart disease can present differently in men and women, atypical presentation in women does not account for all of the difference in delayed or lack of access to tests and treatments. In one study of doctors evaluating hypothetical patients— male patients and female patients presenting with typical heart attack symptoms and identical risk factors– the doctors did not make different recommendations for the male and female patients. However, when stress was included as a risk factor, only 15 percent of doctors diagnosed heart disease in the women, compared to 56 percent for the men. This study suggests that doctors are much more likely to write symptoms off as psychological when the patient is a woman. And women are medicated as if their pain is emotional instead of physical: for example, after coronary artery bypass graft surgery, women are less likely than men to receive opioid pain medication, and more likely to receive sedatives instead.

Many studies have shown that female gender is a major risk factor for the undertreatment of pain, across many different types of pain. After abdominal surgery and appendectomies, women receive less pain medication than men, even though many studies have shown that women are more likely to report higher levels of pain than men. For cancer pain, and pain caused by HIV, women are significantly more likely to be undertreated for pain. Even paramedics are more likely to give opioid analgesics to men suffering from pain pre-hospital admission than to women. In general, doctors and other medical professionals are more likely to view women’s pain as caused by emotional factors even in the presence of positive test results, and are more likely to administer tranquilizers, antidepressants, and non-opioid analgesics to treat women’s pain.

Women face obstacles to getting appropriate care for many different diseases, at every step of the process. Women’s diseases tend to be underfunded, underresearched, and poorly understood, so getting a diagnosis is difficult, especially when there is the additional obstacle of health care providers tending to assume that women’s symptoms are psychosomatic. Once diagnosed, women do not receive the same level of care for their diseases that men do. And if women can be shortchanged on care for cardiac conditions, which tend to be taken seriously in our society, well researched, and have evidence-based guidelines to guide treatment, imagine how poorly women may be treated for diseases like endometriosis, for which myths about causes and effective treatment abound, and their pain cannot be measured with any objective tests.

Until medical care for women’s diseases moves from the 1950s into the present day, the only solution for women is to be extremely persistent. Women need to seek out the few care providers who understand their disease and are up to date on the latest, albeit sparse, research, and they need to be persistent about having their symptoms acknowledged and treated by their care providers. And in general, we need to keep pushing for better awareness of these problems, and funding for research so that women can receive the medical care they deserve.

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Should I Have a Hysterectomy for Endometriosis?

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Philippa Bridge-Cook

Every woman dealing with endometriosis has faced this question at some point in her journey. It may be a question she has asked herself, as she navigates treatment options, perhaps having tried many treatments that have not worked. Perhaps her doctor has stated it as the only possible next step. Or, friends and family members have suggested it, thinking that it is a cure for endometriosis. Sometimes, endometriosis patients feel pressured by those around them to consent to this surgery. And sometimes endometriosis patients are so desperate to find a solution to the never-ending pain that they just want “everything out” and to not have to deal with it anymore.

Does Hysterectomy Cure Endometriosis?

If you are considering a hysterectomy to manage endometriosis pain and symptoms, the first question that needs to be asked is how effective is a hysterectomy in curing endometriosis? There have been some studies published that address this question. The rate of symptom recurrence varies quite a bit depending on the study—from 19 to 62 percent, when at least some ovarian tissue was conserved. One major reason for persistent pain after hysterectomy for endometriosis is incomplete removal of endometriosis lesions at the time of hysterectomy, and thus, the reason for the variability between the studies likely reflects, at least in part, the differences in surgical skill at completely excising all endometriosis lesions.

What about Removing the Ovaries?

When both ovaries and both Fallopian tubes are also removed at the time of hysterectomy (bilateral salpingo-oophorectomy, or BSO), the risk of symptom recurrence is lower, but still present, at 8 to 10 percent. Again, complete removal of endometriosis lesions at the time of hysterectomy improves post-operative outcomes.

Many endometriosis patients who have had hysterectomies and bilateral oophorectomies for endometriosis are reluctant to take hormone replacement therapy (HRT) for fear of stimulating any endometriosis tissue that may have been left behind. This question has not been addressed comprehensively with published studies. The risks of HRT related endometriosis growth depend somewhat on whether any endometriosis tissue was left behind at the time of hysterectomy. The risks of HRT in general, however, cannot be dismissed. Studies have shown a higher incidence of certain cancers, gallbladder disease and cardiovascular events. Despite these risks, medical consensus suggests the benefits of HRT outweigh the risks. The disparity between the research and consensus means each woman should weigh the risks and benefits carefully.

Complications Associated with Hysterectomy and Oophorectomy

What are the risks and potential long term complications of hysterectomy, or hysterectomy plus bilateral oophorectomy? A large study of almost 30,000 nurses undergoing hysterectomy for benign (non-cancerous) diseases showed that hysterectomy plus BSO is associated with an increased risk of death from all causes, increased risk of fatal and non-fatal heart disease, and increased risk of lung cancer. Hysterectomy can cause pelvic floor dysfunction, and can negatively impact bladder function: the risks of urinary incontinence and vaginal prolapse increase significantly post-hysterectomy, although these complications usually do not develop until 10 to 20 years later.

Hysterectomy plus BSO causes surgical menopause, which causes an abrupt cessation of hormones, compared to the gradual process of natural menopause. This can result in more severe menopausal symptoms, such as hot flashes, vaginal dryness and irritation, and decreased sex drive or other problems with sexual function. In addition, the beneficial effects of the small amounts of hormones that continue to be produced post-menopause from the ovaries are gone in women who have undergone BSO. Removal of the ovaries can be devastating for some women, as observed by the personal stories shared on Hormones Matter.

Hysterectomy with or without BSO is associated with increased risk of heart disease and osteoporosis. The risk of both of these diseases increases after natural menopause, and therefore the reason the risk may increase in even in women who keep one or both ovaries at the time of hysterectomy may be partially because hysterectomy itself is associated with earlier menopause– on average by 3.7 years, when both ovaries are conserved, and by 4.4 years with unilateral oophorectomy. BSO and unilateral oophorectomy are also associated with an increased risk of Parkinson’s disease, cognitive impairment/dementia, and depression and anxiety. New research suggest the loss of hormones post oophorectomy, estradiol in particular, is detrimental to mitochondrial functioning. Mitochondrial injury is believed to be the mechanism by which post menopausal, surgically menopausal and chemically menopausal (Lupron and Lupron-like drugs) women develop a high rate of cardiovascular and neurological disease.

Things to Consider before Hysterectomy

Before a hysterectomy is considered as a treatment for recurrent pain or other endometriosis symptoms, other potential causes of pelvic pain should be considered. Pain can be from recurrent, or more likely, persistent, endometriosis, but there are many other conditions and diseases that can cause pelvic pain, such as adhesions, pelvic floor dysfunction, adenomyosis, interstitial cystitis, and nerve pain. Of these, adenomyosis is the only condition that will improve with a hysterectomy, and for some of the other conditions, a hysterectomy may cause worsening of the problems. It is a good idea to discuss all the potential causes of pelvic pain with a doctor or a team of doctors familiar with all these conditions to try to ascertain whether hysterectomy is the best potential treatment for your medical condition.

Many patients have a combination of causes contributing to their pelvic pain and other symptoms, so it can be very complicated to weigh the potential benefits against the risks. In addition, it is my opinion that given the risks and long-term complications of hysterectomy, the first line surgical treatment for endometriosis should be laparoscopic excision of all endometriosis lesions, with conservation of all reproductive organs if possible.

As someone who interacts with many endometriosis patients in my work with The Endometriosis Network Canada, patients on both sides of the hysterectomy question have told me that they feel judged for the decisions they are making or have made. I don’t believe that anyone should be judged for making the best decision they can make, taking into account their own personal situation and, preferences. However, I do want everyone making this decision to be fully armed with accurate information, so that they can make the best decision possible in what is usually a very complicated situation.

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When Should Teens Go to the Gynecologist?

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When should girls start going to the gynecologist? The general consensus from the medical community and public health education is that a girl need not see a gynecologist until she becomes sexually active..I disagree.

Reproductive Care Should Begin with the First Period

Consider this; the average age of menarche in the United States is a little above 12 years of age. The average age a woman loses her virginity in the United States is 17. Based on what is taught in health class, that leaves 5 years of no reproductive care for the average American female. Although the average teenager may not need annual visits to the gynecologist, reproductive care should not be ignored. This means pediatricians must be better informed about gynecological care.

Just because a young girl is not sexually active does not mean her reproductive system does not exist. Amenorrhea, dysmenorrhea, endometriosis, polycystic ovarian syndrome and menorrhagia are all terms (or concepts) that young girls of reproductive age should be familiar with; and yet a majority of girls of reproductive age would not be able to identify any of these terms.

Abnormal Periods are a Sign of Trouble

Young girls should be taught that abnormal periods, painful periods (dysmenorrhea), an absence of periods (amenorrhea), or extremely heavy periods (menorrhagia) are not normal and should be evaluated by a doctor. In many cases, finding the causes of abnormalities in menstruation early on, could prevent further complications down the road.

Most women who have uterine or menstrual abnormalities do not get a diagnosis or proper treatment until they discover they cannot conceive. That is because by the time these women go to the gynecologist for the first time they have been lead to believe that abnormal is their normal.

My Story

When I was twelve I was getting my period every other week and I was told that was normal and that every girls’ period takes some time to regulate – which is true.  However, it wasn’t true for me. I had endometriosis and uterine didelphys (two uteri) which required surgery, but because I was young, it was two and a half years before my painful periods were taken seriously. This is an all-too-common experience. Many women report suffering for decades.

In the case where a young girl’s menstrual problems are impacting her daily life – isn’t it better to be safe, rather than sorry? Read my full health story here.

The Need for Pediatric Gynecologists

Pediatricians and family doctors alike need to sit down with their female patients and have a detailed discussion about menstruation. No one should assume that health education in secondary schools is adequate to teach a young girl to stand up for her own reproductive care. The stigma of being too young (or not yet sexually active) to go see the gynecologist should be disregarded. Regardless of age, if any other part of the body wasn’t working one would go to the doctor to get it looked at; the same should go for the reproductive system.

How old were you at your first gynecologist appointment? When did your menstrual problems begin?

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A Life Journey to Wellness – With Chronic Pain and Fatigue

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Robyn Myers

Today much is made of being healthy, of the importance of health and wellness. I have always been “healthy” – I still am technically, even with my chronic pain and fatigue conditions. But through the years I have come to think of health as my Doctor does, as things like a healthy lifestyle with good food and regular exercise, a healthy weight, good blood pressure, normal lab work. I have those things. When I think of “wellness” I think more of my “well being” instead of whether or not I am feeling good at the moment – because for the past 15 years I have had pain and fatigue and other symptoms every single day. In fact, I haven’t had a day without joint pain since my second Lupron shot back in 2001 – but more on that below.

But I have had a few pain free hours, and with “skills and pills” (as my Chronic Pain psychologist used to say) I can get my pain and discomfort to fade into the background for a while most days. I have learned that I can feel good about feeling bad – well, or to at least be “okay” with it. I have also applied all my skills as a research scientist (in Ecosystem Ecology) to my own medical condition. This has given me a sense of power and control over the uncontrollable nature of the symptoms caused by my chronic conditions (I have several) – but all were eventually eclipsed  by the diagnosis as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS – also known as ME/CFS/SEID etc…). Whether they are caused by hormonal, mitochondrial, nervous or immune system related problems (probably all of the above), does not really matter in my day-to-day management of my symptoms, since there currently are no treatments. I manage my symptoms by eating healthy, walking and doing yoga for exercise, making sure I get good sleep, and pacing my activity and rest.  I am able to be active at a slower, relaxed pace. I am working hard to be as “healthy” as I can be, treat my symptoms individually, and I try to focus on my wellness and well being. Our bodies are amazing things, and though I have felt for years than mine let me down, I have discovered that in reality it is a complex and amazing thing.  Even with genetic predispositions and chemical assaults, I am trying to support my body so that it has the best chance to heal itself, and I am getting better.

For those who want the details of my predisposing conditions and my healthy journey with endometriosis, Lupron and CFIDS, here is a more or less chronological account:

Pre-disposing Conditions

As a baby I often had allergies with earaches and fevers.  This was considered normal. When it is actually a sign the immune system is kicking into action for things in the environment that “should be” normal. For me they were an allergen.

In elementary school my knees and ankles hurt, and all my joints were “funny” – in that they bent back farther than everyone else’s, which was entertaining on the playground.  The Pediatrician said this was nothing to worry about and these were “just growing pains.” He suggested my parents have me take ice skating lessons to strengthen my ankles. In fact, 35 years later I was diagnosed with benign hypermobile joint syndrome, a condition which causes joint pain, inflammation and other symptoms.

We are Born with Endometriosis

At age 12, with my first menstrual cycle I had horrible cramping pain.  I was told “this is normal for some girls” and given a hot water bottle and told to take Midol®.  I knew this was not “normal” but no one could tell me why I felt this way when my girlfriends did not.  My mom understood and taught me coping skills so that the pain would not stop me from enjoying life.  Each month the pain worsened. I can recall my major life events in my teens and twenties by whether (or not) I was on my period and in terrible pain. By my mid-twenties I had to miss a day of school or work a month to manage the pain. I was prescribed Motrin® and birth control pills to manage my cycles. Over time pre-menstrual symptoms began, so I had pain and discomfort before and during my periods. It felt like I was just recovering from one cycle, and could enjoy  one pain-free week, and then PMS would begin the cycle all over again.  My doctors were sympathetic but really could not do much for me. They offered birth control to help control my cycles.  I started with low-dose pills, which would help for a while, but as pain and heavy bleeding would return they would move to a stronger pill.  In my late 20s a diagnostic laparoscopy confirmed I had endometriosis and fibroid tumors.  It explained all I had been experiencing since age 12.  I felt vindicated that I had been going through was NOT normal. But all they could do was recommend I go off birth control, so that my husband and I could try to have a baby as quickly as possible. I stopped taking birth control, knowing my abdominal pain would get worse, but we hoped to let nature take its course on the timing of a baby.

Odd Mono-like Viruses

During the 1980s, in my 20s, in college as an undergrad and after periods of high stress (such as finals), I had several multi-week episodes of fatigue, sore throat, swollen glands, flu-like symptoms.  I was always tested for Mono (which always came back negative) and was always told I “had a virus.”  I always bounced back from these, and went back to my worsening month-to-month endometriosis symptoms.

Hypothyroid Hormone Crash

I was in Graduate School in the 1990s, in my 30s, and having the time of my life doing research I loved and advancing my career.  However, after the high stress of prepping for and passing my PhD oral exams in 1994 I crashed, as “everyone does,” but this time I didn’t bounce back. I was beyond tired with a new the bone crushing fatigue (I attributed the many other vague symptoms to my endometriosis).  I guessed I might be anemic from my heavy bleeding during my periods, but my blood work showed a high TSH level, indicating, that at age 35, I was hypothyroid.

As most do, my doctor prescribed Synthroid® which restored about 80% energy, but my endometriosis was worsening with menstrual migraines and month long pain. One lesson I learned was not to assume that all my symptoms were related to my endometriosis, although the hypothyroidism had almost certainly made my endometriosis and infertility worse. By the end 1997, since I already had secured a good career position, so that when I filed my dissertation my inability to get pregnant and my endometriosis were my primary concerns.

Infertility Treatment Treats Endometriosis

When I was unable to conceive and wanted to get pregnant, I was referred to a Reproductive Endocrinologist. He did extensive testing, followed by extensive surgery to remove numerous marble sized fibroid tumors and patches of endometriosis (treatment that, at least in the 1990s, was not offered to me unless I wanted to have a baby). What followed was three years of infertility (IF) treatments, with  repeated cycles that included my doctor balancing my hormones, then giving me stimulating hormones to grow eggs, followed by interuterine insemination. I knew the IF  process would caused the endometriosis and fibroids to regrow, and two more laparoscopic surgeries were needed to remove them again, as well as scar tissue caused by the previous surgeries, to give me the best chance to conceive. We were not successful, but at least had no regrets for not having tried.

Lupron Treatment

However, I was left with worsening abdominal pain from endometriosis and fibroids stimulated by the fertility drugs, and very difficult choices to make regarding treatment.  I considered hysterectomy but I really wanted to avoid it because of my scar tissue issues, and because I wanted to keep my ovaries. I researched Lupron and knew there were risks.  What I didn’t know was that I had pre-disposing conditions that made it riskier for me and more likely I would have a bad reaction. We were more concerned about scar tissue causing lifelong abdominal pain if I had more surgery. Lupron seemed like the conservative choice to shut down the endometriosis and shrink the fibroids. I was told the treatment would be six monthly Lupron Depot injections. I insisted on, and my doctor agreed to, low dose hormone add-back therapy (estradiol and progesterone, prescribed separately) to minimize side effects.

With my first Lupron depot monthly injection (in Dec 2000), I had the expected mild menopausal side effects. The second injection the following month added severe joint pain in all paired joints to the hot flashes and other symptoms, but in addition, my abdominal pain went down!  I was told that the joint pain should go away after about 6 weeks, but unfortunately, it did not. By the end of Lupron treatment my abdominal pain was reduced by half (and was considered a success) but my Doctor recommended we stop treatment after 5 injections due to the joint pain. I was assured the joint pain should stop with the treatments. In fact, it has never gone away. Eventually, I was referred to a rheumatologist. I reported my negative experience with Lupron to the adverse drug events sections of the FDA.

Post Lupron Joint Pain

My doctor recommended that I take the birth control Depo Provera to try to maintain the “Lupron gains.”  This was mid 2001, and it worked for a while, before the abdominal pain and bleeding slowly returned, and then worsened.  During this time, I still thought the endometriosis, hormones and abdominal pain caused the fatigue, nausea, and unwellness I was experiencing. Between my primary care doctor and my rheumatologist, they were treating my individual symptoms and watching me become more symptomatic. By  2002 my joint and abdominal pain was so bad I was on 8 vicodin a day and high dose ibuprofin.

Chronic Pain Clinic – “Skills and Pills”

I was referred to a chronic pain clinic (CPC) to receive better prescription pain management and cognitive behavioral therapy which helped me to learn coping skills like mindfulness meditation, self-hypnosis, and other skills in order to “feel better about feeling bad.”  Thanks to the “Skills and Pills” of the two year Chronic Pain Clinic program, my pain was now  under better control. I was still working fulltime, but more and more days from home a few days a week now as the fatigue, brain fog, headaches, flu-like symptoms all worsened along with the ab pain.

Minimally Invasive LAVH-BSO

At this point, I am still thinking all the fatigue and other symptoms are primarily from endometriosis pain, and that Lupron triggered the arthtitis due to HMJS. My rheumatologist blamed the Lupron for triggering it all (still does). My primary care doctor, rheumatologist and Pain Doctor all witnessed my decline.  By the Fall of 2003, I was bleeding so badly I sought  a referral for a minimally invasive GYN for an LAVH-BSO. To manage the endo, it was agreed the ovaries had to go. He did a great job. I have only very mild discomfort around my bikini scar – otherwise no further ab pain at all. I went on Vivelle Dot patch immediately. Minimal menopause symptoms at age 44.

Diagnosed with CFIDS

The Joint pain continued and the rest of the ME/CFS symptoms intensified through 2004-2005…I was struggling to keep working 3/4 time with “reasonable accommodations”, getting sicker and taking FMLA because I was out of sick leave. I was working so hard trying to keep working. Finally, an endocrinologist in 2005 said I met all the criteria for CFIDS (and told me it was ridiculous to blame the Lupron…she was wrong). My pain was managable but not the fatigue. I took the Bruce Campbell course in managing ME/CFS and added “Pacing” to my list of skills. By late 2006, I was facing medical retirement after 22 years and by June 2007 I was out on Federal Disability Retirement at age 48.

Thanks to my Kaiser Doctor’s observing my decline and my own ability to write, I was awarded SSDI on first appeal in 2008. Technically it is for chronic pain but really it was the fatigue, flu-like symptoms and brain fog that kept me from working. And still today keeps me from being as active as I once was.

Living Well with CFIDS

These days I have to sleep 8-10 hours per night. I used to take daily 2 hour naps but since starting Armour Dessicated Thyroid with T3 (in 2013), I get by with horizontal rests, not daytime sleep most days now. I have a 1:3 activity to rest ratio – for each hour of activity, I need about 3 hours of rest. I consciously “rest before and recover after” extra activities not part of my daily routine (from laundry to a doctors appointment to dinner out).

I keep regular hours, and most days I am able to make meals, take a 30-60 minute walk and can manage one “extra activity” per day. I do a bit of volunteer work. I leave the house 3-4 days a week for 1-3 hrs without a setback, depending on what I do. I can grocery shop (with effort) but no longer shop for pleasure. Despite this careful pacing ANY infection, social event, life stressor, or simply too long duration of mental, emotional or physical activity can tip me over into Post Exertinal Nueroendocrine Exhaustion PENE. I have a 36-48 hour PENE/PEM response (the time from the over-exertion to the crash) with increased flu-like and CNS symptoms and usually must rest 3 times as long as whatever caused the crash took to do.  After a bout of flu or an abscessed tooth, I have had bad dysautonomia episodes that resolved over weeks or months to my “baseline” – my “new normal” since Lupron activated or switched on (or off) a gene or damaged my mitochondria and reset that baseline. For me, the Lupron was the turning point. It is a tough balancing act. But I have worked on pacing, keeping healthy and being as active as I can.

Ironically my husband of 30 years has Fibromyalgia and knows keeping active helps him.  So we support and encourage each other. He helps me be active and I remind him to pace and rest and we have a happy life, all things considered. He was able to retire at 55 so we are able to manage our conditions and enjoy life. We have a truck-camper RV and a small cabin-cruiser boat from before I got sick, both of which have allowed me to travel and do things at my own pace, with my own bed, bath and kitchen.  Whether we are visiting family or traveling the West, this kind of travel allows me to be as active as I can without causing crashes. We are both very grateful for all we have.

It seems there are many ways to end up with the same or similar body response and set of symptoms that is ME/CFS and/or Fibromyalgia. For me if it hadn’t been Lupron, it would probably been something else since I have so many co-morbid factors. Understanding this has helped with acceptance. And knowledge is power. I know there are no ways, yet, to reset the genes or fix the mitochondria, or other body systems that no longer work as they should, but I am hopeful researchers, who care and collaborate, will find the answer.  In the meantime, I will work to be as healthy and well as I can be.

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Uterus Interrupted: Endometriosis is not in my Head

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Katelyn Luciani

It was actually in my uterus, on the cul de sac, on my right lower ligaments, on my appendix, on my bowel stretching across to the right side of my rib cage as well as in the muscle lining of my uterus (adenomyosis). No, endometriosis was most definitely not in my head as so many doctors proclaimed.

As long as I can remember I’ve been living with pain, and it all started back when I was 11 years old when I had my first menstrual cycle. I would get so sick with vomiting and cramping, and be in so much pain I wouldn’t be able to leave my bed or the washroom for the first two days of my period. I never understood why my friends wouldn’t get as sick as me. This was the first time I felt isolated. Every month I would miss at least two days of school–I’d miss out on birthdays, holidays, special occasions (I still do).

My mom used to console me and tell me that she used to have the exact same thing when she was young. When I would go to my doctor she would tell me that this is “normal, everyone woman goes through this” and “it’s nothing a little advil can’t help.”

I have endometriosis. Actually, I have endometriois and adenomyosis, chronic back and pelvic pain, vulvodynia, pelvic floor dsyfunction and I also suffer from depression and anxiety.

It wasn’t until I started becoming sexually active that I also noticed something else seemed off. Sex wasn’t fun… it sucked actually. It was painful and it felt like I was being stabbed. I would be nauseous afterwards and always have horrible back pain and cramping for days.

At this point, I was living in Vancouver. I went to a doctor out there and told him what was happening. His initial reaction was “cervical cancer” and after that was ruled out, he threw the word “endometriosis” at me. This was the first I time ever heard about “endometriosis” but I didn’t think much of it since he insisted it wasn’t a big deal and that the Mirena IUD would be my lifesaver. Well it wasn’t! Insertion was horribly painful and I cramped and bled for about two years straight. I have never felt the same since!

Finally, I was told that my body was rejecting it and had an emergency removal. I was told to just stay off of any type of birth control for a bit and see what happens, since I had been on continuous birth control from the age of 14. I was 25 at this point.

I started experiencing multiple ruptured cysts resulting in over three hospital stays in the course of four months, and I was told this time that surgery was the answer. I was trying to pursue my dreams in Vancouver, where the surgery was performed. The outcome was that he couldn’t find anything: in his words “ I had a beautiful looking uterus and everything looked fine.” I was in SEVERE pain yet there were NO answers! The pain just got worse and worse to the point where I could not work any longer. I was forced to give up my dreams and move back home to my parents’ house in Ontario and wait patiently for my turn to get into one of the best pain clinics in Toronto. Waiting patiently… my Endo-warriors know exactly how that feels.

In the meantime, my gyno referred me to a pelvic physiotherapist who I would see weekly to help with my vaginal spasms as well as internal manipulation to aid in my pelvic floor dysfunction. I was excited knowing that I would have some of the best doctors working on my case. Finally, some answers and some help! It was many months before I was admitted, where in an effort to end my pain I would try anything they suggested.

Blind nerve block injections were suggested as a treatment to numb my pelvic pain. Two to four needles were inserted into my pelvis on two different occasions. This was another let down. I now suffer from chronic pain in that area and constant hip locking as a result of these injections.

Yet another specialist suggested hormonal therapy (Visanne). The side effects from this resulted in a brief breast cancer scare (which did wonders for my anxiety). I now have permanent agonizing cysts in my breasts (fibrocystic breasts) and have an even deeper hatred for my own body.

It was right around this time that I hit an all time low. I was completely discouraged and hesitant to try any other kind of hormonal treatment that was being offered to me for fear of the side effects to my body. I was tired of being a guinea pig, and I felt very alone. I was so tired of hearing that it was “all in my head” and that maybe “I just needed to take some anti-depressants.”

It was right around this time last year that I reached out and found this amazing support group! And after having met other people who had such similar stories to mine, I started to see things in a different light. Maybe I wasn’t crazy? It was so comforting to know that I was not alone in my pain. I started hearing from more and more people who said it was very common to have a number of surgeries before endometriosis was found, and that sometimes the surgeons aren’t necessarily trained to spot endo in all of its forms. I went to the Endometriosis Symposium last year hosted by The Endometriosis Network Canada and educated myself even more. I left feeling empowered. There WAS something I could do…

With the encouragement and financial support of my parents, as well as some generous donations from friends through an online campaign, I finally sent all my health records to a world-renowned endometriosis specialist in Atlanta, Georgia. For two years I had been bouncing back and forth from doctor to doctor who all kept referring to that original surgery, saying that it obviously could not be endometriosis because none had been found. Well, a week after sending my records in, this endometriosis specialist called and after reviewing my past surgery report from Vancouver he confirmed that I most likely had endometriosis and that it was possible that he could improve my quality of life by 85%.

So, I took the trip out to Atlanta. During the surgery he found endometriosis in my cul de sac, on my right lower ligaments, on my appendix, on my bowel stretching across to the right side of my rib cage as well as in the muscle lining of my uterus (adenomyosis). He removed all the lesions as well as my appendix and he performed a presacral neurectomy, which involves snipping the main nerve to your uterus/bladder/bowel area. This is said to work for 75% of patients who no longer feel pain in that area. I, unfortunately, was not one of the lucky 75% of patients this works for. I was told to give my recovery at least six months. I was devastated when there was barely any improvement. Since the PSN didn’t work for me because of my adenomyosis, I will most likely need a hysterectomy in order to get the pain relief I was hoping for, which I am not ready for at the age of only 28.  How bittersweet…I finally had an ANSWER, but still NO pain relief!

After constantly getting knocked down by this disease, I am standing up yet again. I am still in pain… I still fight to get through the days, today included. I want my voice to be heard. I am NOT crazy. The symptoms are NOT all in my HEAD. They are actually in my UTERUS!

In the spirit of The Endometriosis Network Canada’s #awishnoted campaign I’d like to share my three wishes.

I wish for more pain free days that I can spend laughing and making memories with my loving boyfriend, and with my incredibly supportive family that I am blessed to have (that includes my endo family too) and with my friends who thanks to this disease I don’t get to see as often anymore.

My second wish is for more funding for endometriosis research right here in Canada.

And last but definitely not least, I wish for the next generation to be educated about endometriosis in health classes at school. Knowledge is power, and together our voices will be heard!

To read more about my journey with endometriosis and adenomyosis, follow my blog at http://uterusinterrupted.blogspot.ca/.

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Endometriosis Plus Lyme Disease: A Horrible Combination

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Amber Evans

I am 30 years old and have been sick most of my life. That is something that is hard to wrap my brain around sometimes. So I just try to look to my future.  Having both endometriosis and an autoimmune disease has been very hard to come terms with over the years. It was especially difficult over the years I spent going from doctor to doctor being told there was nothing wrong with me, that it was all in my head and to seek help elsewhere. But where? If I listed all the doctors I have seen since I was a young child, it would be quite a long list. I know many sick women who have been on the doctor rollercoaster. I am lucky that I have had my parents and my best friend, who is like my sister, by my side.

Diagnosing and Treating Endometriosis

I was diagnosed with endometriosis when I was 17 years old but had felt the pain of endometriosis since I was 13. I thought I wasn’t normal. All the girls I was friends with had normal periods, and they came regularly and lasted a week, mine took me out of school, and the teachers were less than understanding.  I have had four laps (surgeries) for endometriosis and have been on every birth control known to woman. I have been on depo shots and had Lupron treatments. Nothing helped.

Complications Associated with Failed Endometriosis Treatments

I have a bowel-uterine fusion as well, that can reattach at any time and I now have serious bladder issues which I feel are complications from the surgeries I had. I had one surgery in 2000 while in high school, one in 2004, 2007, and one in December of 2011. The doctors now think I have interstitial cystitis (IC) or painful bladder. By whatever name it is given, it really hurts. I wasn’t getting answers from a previous surgeon who has taken on so many patients (like many physicians end up doing) so I am going to a special urology practice soon; one that has a special female treatment approach for women by women urologists. I am starting physical therapy or aqua therapy soon. I am hoping with my pain threshold and the lack of using my muscles for so long that this will be able to help me as well.

I regret having my last surgery for endometriosis because it did not go as planned. I felt awful afterwards and I think a lot of that had do with just starting to deal with an autoimmune disease. I should have weighed the risks more carefully.

Lyme Disease Too

In 2009, I was diagnosed with Lyme disease. Lyme disease affects everyone differently, and it is a disease that can hide for years until an illness or trauma brings it out, even just a stressful event.

They usually treat patients with Lyme disease with medications like doxycycline and Mepron. I have a more chronic form of Lyme disease. The Lyme disease was left untreated for years, and misdiagnosed and undiagnosed. I had such horrible GI issues (for a time, they thought I had Crohn’s or ulcerative colitis because my GI episodes would send me to the hospital regularly and sometimes even have me admitted to the hospital for a week at a time) that the Lyme antibiotics were out of the question.

I was lucky enough to find a physician who treats Lyme and also uses herbs and natural approaches. I know how some feel about that approach. I use to feel that way too actually. But this doctor opened my eyes to a world of healing; I am able to put herbal drops in my water that they use in low income third world countries to treat MRSA to treat one of my nasty co-infections known as babesia. Babesia was responsible for my night sweats and myriad of other symptoms. Yes, I got my Lyme disease from a tick bite which carry other things than just Lyme, but some people like a friend of mine got there Lyme from flea bites and are just as sick. White footed mice also carry the disease and they believe mosquito do too.

More Research Needed for Lyme Disease

The CDC has been at war with many Lyme patients for under reporting the cases of Lyme reported each year. But the CDC did recently up their yearly numbers of new Lyme cases from 300,000 to 1 million new cases. With one million new cases we are up there with AIDS but we are not getting the attention to the disease, research and patient care that we need. And I am not sure what is stopping it. I am hoping we can all come together and start shedding light on this devastating disease.

As of today, I have had three close friends infected, all from the same area I live in. My mother is very sick from Lyme disease and now my father is showing symptoms too. Lyme disease is everywhere, especially with birds now considered carriers, as a recent medical article stated. We must come together as a nation, and as citizens worldwide and start talking about the subject of Lyme disease before it is in every household.

Living with Lyme and Endometriosis

As of this month in 2015 and at the age of 30, I have a very positive outlook on my prognosis. I am making headway with my herbal treatments for my Lyme disease and its co-infections with my LLMD (Lyme Literate Medical Doctor). I definitely have less pain than I use to and I am able to drive again. There is hope with Lyme disease and Endometriosis.

I hadn’t driven a car in years, now I drive almost every other day, and I am able to help my family more. Again, I do not know where I be without my parents and my best friend.

In the near future, I am hoping to start volunteering at a near by horse rescue farm, and doing local pet care for families, as I have a great love for animals! I also want to go back to college and get a degree and start working.

These things are all possible with Lyme and Endometriosis; never give up hope as my best friend always says. It always possible.

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Endometriosis Awareness Month: A Wish Noted

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Philippa Bridge-Cook

Everyone who lives with endometriosis as a patient, or as a family member, partner, or friend of a patient, has something (or sometimes many things) they wish for, with respect to this disease. In March, as part of their Endometriosis Awareness Month activities, The Endometriosis Network Canada asks people from across Canada to send them their wishes with the hashtag #awishnoted, which is an anagram for “what is endo?” These wishes are displayed as a digital “wall of wishes,” and as an actual physical wall at the Endomarch Canada event in Toronto. Wishes range from wanting better medical care, to wishing for a baby, to wishing for continued strength while dealing with endo.

I also have an endometriosis wish, and it is a big one. But as William Arthur Ward said: “If you can imagine it, you can achieve it.” My wish starts with all teenagers being educated about the signs and symptoms of endometriosis, so that people would be aware of the possibility of endometriosis as soon as they start developing symptoms. The primary care practitioners would also be educated about endo, and would refer to a specialist when they suspect the disease.

The specialist care would be delivered at a multidisciplinary centre of expertise in endometriosis. This care would include the appropriate medical expertise, such as skilled excision surgeons, and other medical specialties as required, such as urology and gastroenterology. In addition, endometriosis patients would receive care from women’s health physical therapists and nutritionists, and other alternative/complementary medical practitioners as needed. Pain management specialists would also be an option for care if required. Counselors would be available to help patients deal with the emotional impact of the disease, and patients would be referred to support groups, for peer support from others who are dealing with endometriosis.

As if that isn’t enough to be wishing for, I also wish that the general public had a much greater awareness of endometriosis, how devastating it can be, and how wide-reaching the emotional effects are. If this were the case, in addition to receiving excellent healthcare at a centre of expertise, endometriosis patients would also receive better support from people in their daily lives.

However, the reality of living with endometriosis today is far different from this vision of what could be. In my work with The Endometriosis Network Canada, I am privileged to interact with many endometriosis patients. They are all incredibly strong people who continue to fight for a better quality of life, on a daily basis, despite all the obstacles around them. Many of them fought for years to obtain a diagnosis, usually hearing along the way from doctors “there is nothing wrong with you,” or “your problems are not physical, they are in your head,” or “I can’t/don’t know how to help you.”

Even once endometriosis has been diagnosed, often the care women have received is horrifying. I have talked to women who have been butchered by inept surgery, suffered complications that could have been avoided, or who have had unnecessary hysterectomies during surgeries that are supposed to treat endometriosis, where all or most of the endometriosis was left in the body but healthy organs were removed. Many endometriosis patients have been refused care by specialists, for reasons unknown. Some have been offered anti-psychotic medication or sedatives instead of painkillers, as a “treatment” for endometriosis or chronic pain. My vet once commented to me that animals receive better care than women with endometriosis.

For many endometriosis patients, they have no support network around them. They may have partners, family, and friends who do not understand the medical effects of endometriosis, and definitely do not understand the emotional consequences of living with chronic pain and other debilitating symptoms. Some have lost jobs, partners, and custody of their children as a consequence of their disease. Many are depressed and anxious, or worse, suicidal.

This state of affairs is not ok. We are capable of doing more for people with endometriosis, except that not enough people care about the current state of affairs for things to start changing. It is hard for me to imagine that if most people really knew about what life is like for many people with endometriosis, they would be ok with abandoning over 176 million women worldwide to this kind of suffering and medical mismanagement.

This is why March, as Endometriosis Awareness Month, is important. Most people with endometriosis face the task all year long of educating those around them about their disease. However, in March, endometriosis patients come together, and make their voices heard even more loudly, as a united group. We are tired of suffering and being ignored. We want people everywhere to understand what endometriosis is and why it is a major healthcare crisis, and we want people to care enough to start demanding the changes in our education system, in our medical education system, in our insurance systems, and in our healthcare delivery systems, that would make my wish become a reality.

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