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Vitamin D Plays an Integral Role in Adaptive Immunity

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Severe Adverse Reactions Include Vitamin D Deficiency and Autoimmunity

Hormones Matter researchers discovered that, inter alia, severe adverse reactions to any of the surveyed drugs trigger significant but varying autoimmune responses. Moreover, the research revealed an underlying consistency involving all reviewed drugs: vitamin D deficiency.

Vitamin D Helps Regulate the Adaptive Immune System

The adaptive immune system comprises the body’s intricate network of antibodies and special types of white blood cells (called sensitized lymphocytes ) to thwart new and previous invaders including viruses, bacteria, and drugs. When the adaptive immune system is not strong enough to endure external disruptions such as severe side effects of drugs, it can go awry by signaling antibodies and sensitized lymphocytes to attack healthy cells. This response is called autoimmunity—when the adaptive immune system’s cells do not recognize previous invaders and designate healthy cells as those invaders. In other words, the body’s immune cells attack its own healthy cells.

Scientific research over the past three decades solidifies the connection between vitamin D and autoimmunity. Vitamin D plays an integral role in the regulation of the adaptive immune system. Adequate vitamin D in our bodies can protect us from autoimmunity because adaptive immune cells contain vitamin D receptors (VDRs). These receptors are attached to the surface of the adaptive immune system’s antibodies and sensitized lymphocytes. The VDRs act as “gate keepers” by signaling what external substances, e.g., components of medications, can enter a cell. The VDRs must be replete with vitamin D to effectively regulate adaptive immunity. When the VDRs receive adequate amounts of vitamin D, they enable the adaptive immune system to function properly by attacking new and previous invaders.

When the VDRs attached to the adaptive immune system’s cells do not contain sufficient vitamin D to attack invaders, autoimmunity may kick in, causing the death of healthy immune cells. Thus, low vitamin D levels can lead to autoimmune diseases including thyroid disorders such as Hashimoto’s and demyelinating diseases including multiple sclerosis (MS).

Vitamin D and Hashimoto’s Autoimmune Thyroid Disease

The Real Women, Real Data research also uncovered another consistency among severe adverse reactions to the reviewed drugs: Hashimoto’s thyroiditis, an autoimmune disease caused by abnormal cells constantly assaulting the thyroid gland
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Vitamin D receptors are present in the thyroid as well as the pituitary, the pea-shaped gland that controls the thyroid. Not surprisingly, low levels of serum vitamin D have been linked to Hashimoto’s thyroiditis, according to recent Turkish medical research:

Published in a 2013 issue of the journal Endocrine Practice, a study conducted at a training and research hospital in Ankara demonstrated that serum vitamin D levels of female chronic Hashimoto’s patients were significantly lower than healthy subjects. Furthermore, the researchers discovered a direct correlation between serum vitamin D levels and thyroid volume as well as an inverse correlation to the antibodies involved in the thyroid.

Researchers at Medeniyet University’s Goztepe Education and Research Hospital in Istanbul learned that 92 per cent of their 161 Hashimoto’s thyroiditis cases had serum vitamin D levels lower than 30 ng/mL (12 nmol/L), a value characterized as “insufficient.” Published in a 2011 issue of the journal Thyroid, the study reports an association between vitamin D insufficiency and Hashimoto’s thyroiditis.

Vitamin D and Demyelinating Disorders

Another disturbing outcome of the Real Woman, Real Data research is the reporting of neurological and neuromuscular symptoms, many which of are consistent with demyelinating disorders such as MS, an autoimmune disease. The development of MS occurs when a poorly functioning, adaptive immune system gradually attacks the protective covering of the nerve cells (called the myelin sheath) of the brain and spinal cord. This potentially debilitating process is called demyelination.

Scientific—primarily epidemiological—research indicates an association between vitamin D levels and the risk of developing a demyelinating disorder such as MS. VDRs exist on nerve cells and the myelin sheath. When the VDRs receive adequate amounts of vitamin D, they help protect the integrity of the myelin sheath. However, when the VDRs do not contain sufficient vitamin D, autoimmunity may occur, resulting in the death of healthy nerve cells. Numerous clinical trials are underway to assess the connection between vitamin D status and the likelihood of developing demyelinating disorders.

Low Vitamin D: The Chicken or the Egg?

The connection between low vitamin D status and the development of autoimmune disease is genuine. However, medical research has not yet determined if vitamin D deficiency plays a role in the development of autoimmune disease, if low vitamin D levels are a consequence of the disease itself, or if vitamin D deficiency acts as both a cause and effect. The authors of the aforementioned 2013 Hashimoto’s study concluded,

“Finally, our results suggested that there may be a causal relation between vitamin D deficiency and development of Hashimoto’s thyroiditis. On the other hand, there might be a possible relation between severity of vitamin D deficiency and progression of thyroid damage. However, further studies are needed especially about the effects of vitamin D supplementation on prevention and/or progression of autoimmune thyroid disease.”

Proactive Protection against Severe Adverse Reactions

We could wait years (or decades) to garner the results of further scientific studies and clinical trials to define the exact relationship between vitamin status and severe adverse reactions to vaccines and medications that culminate in autoimmune disorders. Or we could be proactive by taking daily vitamin supplements and enjoying moderate sunlight exposure to increase our vitamin D levels.

It is imperative to take enough vitamin D3 so this essential nutrient will be stored in your cells to help regulate your immune system. The greater your serum vitamin D level (easily obtained from a simple blood test called 25(OH) D, the more likely you will benefit from a stronger immune system that protects your body’s cells from attacking one another.

No one wants to endure severe adverse reactions to drugs such as Gardasil and Lupron, let alone an autoimmune disease. Attaining and maintaining adequate supplementation provides a safe, easy, and inexpensive approach to improved preventive health. By empowering yourself with adequate vitamin D, you may reap the benefits of avoiding disease and enjoying better quality of life.

Copyright © 2013 by Susan Rex Ryan. All rights reserved.

This article was published previously on Hormone Matter in September 2013.

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Nightmare on Lupron Street

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Think Halloween, spooky costumes, and “trick or treat” – only it’s summertime. And you’re in the doctor’s office, awaiting your first Lupron injection.

The RN or MD enters the room, holding your Lupron injection, and s/he is wearing a chemotherapy gown, double chemotherapy gloves, and chemical safety goggles. Would you wonder, with legitimate fright, what in the world was going on? Would you hesitate to have something injected into your body which required special handling and protective gear by the healthcare worker in order to protect the healthcare worker from exposure to your Lupron injection? Would you consent to injecting this medication?

Hazardous Drug Classifications

In fact, Lupron, known as an “antineoplastic”[1] and “chemotherapy”, is also classified (along with other GnRH such as goserelin and triptorelin) as a “hazardous drug” by NIH (National Institutes of Health), NIOSH (National Institute for Occupational Safety and Health), and in Lupron’s MSDS (Material Safety Data Sheets); and the handling, preparation, and administration of Lupron by healthcare workers (or consumers injecting at home) requires special protective gear (gown, gloves, and goggles).

Yet, most peculiarly, no healthcare worker (to the best of my knowledge) has ever given a Lupron injection garbed in the required gear. And that would imply not one patient (to the best of my knowledge) has ever received their injection by a gowned, gloved, and goggled RN/MD.  If you have received a Lupron injection by a healthcare worker wearing any protective gear, let us know.

How can this be?  Several US government agencies, for several decades, have openly identified Lupron as a “hazardous drug” requiring special precautions in its handling, preparation, and administration.  Since the 1990s and through the 2000s, I personally have been asking questions and trying to raise the red flag through articles posted on my site LupronVictimsHub. Think about it it for a moment. Shouldn’t the consumer of Lupron be informed of such information? Would you consent to an injection of a hazardous agent for a benign condition from a gowned and double-gloved health worker? I believe that the industry wishes to ignore the fact that Lupron is classified as a “hazardous” drug. As a result consumers have been ‘shielded’ from this, and other, information central to an informed decision.

So these facts have been ‘open’ and ‘known’ for decades, the questions have been asked, “Alerts” have been issued, and still it would appear that entire fields of medicine are in the dark (i.e., gynecology, reproductive endocrinology, pediatric endocrinology, urology) about proper handling and administration of this hazardous drug. As a result, consumers have been denied vital information necessary to form an educated decision about consenting to this ‘treatment’ (trickment).

Impact on Healthcare Workers Unknown

What impact would there be upon healthcare workers (or consumers injecting Lupron in the home) if no protective gear is worn? How important is this issue, since it could be said there have been millions of Lupron injections administered and seemingly there appears to be no evidence of any problem. But the problem is there have been no studies of healthcare workers’ occupational exposure to Lupron in order to answer this question definitively.

The NIOSH Director has said chemotherapy drugs “can result in adverse health outcomes in workers who are exposed to these drugs, including cancer, reproductive problems, and organ damage when recommended safe handling guidelines are not followed.”

Studies have been conducted showing increased levels of antineoplastic drugs in the environment and in the urine of nurses and other hospital personnel in contact with hazardous drugs or following a spill (here , here and here). Other studies have found a significant increased risk of miscarriages and stillbirths in nurses and pharmacists handling hazardous drugs, and another study of oncology nurses identified that occupational exposure to antineoplastic drugs may reduce fertility and increase poor neonatal outcomes. Unfortunately, these studies and surveys do not appear to have included Lupron and identify only a few or the ‘top 20’ antineoplastics.

A search of PubMed for ‘Lupron leuprolide’ and ‘occupational exposure’ yields “no items found”.  In light of Lupron’s common use and the apparent long-standing disregard of safe handling techniques, there is no legitimate excuse for the lack of investigation into potential occupational exposure.   (A search of PubMed for “Lupron” [as of 8/5/16] displayed 3,122 published articles.)

NIOSH Alert

The 2004 Alert  by NIOSH (as well as in subsequent NIOSH lists), identifies that leuprolide (Lupron) has been included on NIOSH’s “hazardous drug” list because of its “carcinogenicity, teratogenicity (reproductive and developmental toxicity), and genotoxicity” properties (see pages 32, 37).  This Alert (and subsequent NIOSH lists) advised “[w]hen a drug has been judged to be hazardous, the various precautions outlined in this Alert should be applied when handling that drug” (see page 33) (emphasis mine).

There are no safe exposure levels for carcinogens.  For nearly three decades “authoritative guidelines developed by professional practice organizations and federal agencies for the safe handling of these hazardous drugs have been available … [yet] [d]espite the longstanding availability of safe handling guidance, recommended practices are not always followed …”.

Lupron labels completely fail to identify the need for protective gear when handling, preparing and administering Lupron. The manufacturer of this drug appears to have recognized the need to attempt to reduce occupational exposure, as evidenced in some formulations, by the manufacturer’s use of an engineering control in Lupron syringe luer-lock system. Clearly education and training on the hazardous nature of Lupron and need for personal protective equipment has been universally lacking, and much more information and instruction is necessary.

It would appear to be time to euphemistically ‘take the gloves off’.  A ‘fast-track tutorial’ for healthcare workers (and consumers in the home) who are handling, preparing and administering Lupron/GnRHa needs to take place immediately (it’s time to ‘put the gloves [etc.] on’).  The label should be revised to include, plainly and unmistakably, language identifying it as a “hazardous drug”, with specific delineation of safe handling technique and personal protective equipment required for its handling, preparation, and administration. Surveys should be conducted and studies initiated to evaluate the health and reproductive status of persons who, for years, regularly handled, prepared and administered Lupron without using any personal protective equipment. Finally, professional practice organizations should be made to explain how the proper handling of Lupron has ‘fallen through the cracks’ for 30+ years, placing healthcare workers (and consumers injecting Lupron in the home) at unknown and unnecessary risk.

For further details and additional background information, please see my recent article ‘Decades-Long Universal Disregard for NIOSH Precautions During Handling, Preparing, and Administering the “Hazardous Drug” Lupron’.

[1] Lupron is most often referred to as a “Hormonal Antineoplastic”. However, it has also been classified (by the deHaen Modified American Hospital Formulary Service Therapeutic Classification System) as an “Antineoplastic/OTHER” (emphasis original). This deHaen Classification System further delineates its categories numerically, and Lupron’s “Antineoplastic/OTHER” classification is assigned the number “10:00.12”, as opposed to the deHaen’s “Antineoplastic/Hormone” classification number of “10:00.10”. (deHaen Modified American Hospital Formulary Service Therapeutic Classification System, New Drug Analysis Europe and Japan, 1995, Vol. XIV, p.16). I remain unable to define “OTHER”, however other drugs carrying the “10:00.12” classification include Interferon.

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Lupron: A Different Kind of Suffering

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I had other plans for my future. I never imagined I would become disabled from a pharmaceutical drug that I trusted my doctor to recommend: the poison that is Lupron. I took this medication as my doctor recommended for my endometriosis, but little did I know when I took that second shot that I would be rushed to the doctor with tachycardia and that my life as I knew it would change forever. Never again would I enjoy hiking, bicycling, swimming, and travel. Even long walks would eventually become a challenge.

Before Lupron, I was a different person. I worked full-time as an executive assistant. I hiked, biked, went dancing, did all my housework, loved to cook, read and write poetry and short stories. I enjoyed life, in other words.  Before Lupron, I was organized, out-going, engaging in events and life. Watch commercials for popular fibromyalgia medicine and it describes me how I am now, just replace fibro with Lupron. I can’t engage in any of the activities I used to love. My husband took early retirement to enjoy life with me and I’ve been too sick to travel or even just take a walk in the park.

The initial shock (there is no other word for it) my body was thrown into after the first Lupron shot was horrid! I had such violent hot flashes that I would end up in the E.R. with what I was told was a “panic attack” and that I was okay, and all tests were normal! What about the fact that I felt like I was literally dying, with every side effect listed in the literature (which is staggering) for Lupron and could only manage to concentrate well enough to read about a month after I took that last shot? The first time I sat in front of a computer and read The Lupron Victims Network, I knew I had made a tragic mistake and my heart sank. Since that day, I have become an avid researcher, trying to find some way to get my life back, chasing my tail around the information highway to be disappointed time after time.

The next six months were spent trying to muster enough energy to buy groceries, have a life, enjoy my life. One of the most alarming things was the fact that I couldn’t think: I couldn’t put a sentence together in my head. My husband would ask me a question and my answer would be “I don’t know” and I really didn’t know, even simple everyday things! Such poverty of thought put me into a depression I could not explain to myself, let alone to doctors. The anxiety was horrible.

I felt a little better when my body starting making estrogen again, but then came the pain, especially in my legs. Xanax and ibuprofen were my only friends, and I took lots of them, to take the edge off the pain. I was nervous to take other medications, as I was scared of medicines in a way that was unhealthy. Every medicine I tried either made me feel worse or I had strange, sensitive reactions to it, something that still happens today.

All this happened in the fall of 1997, one day after my 41st birthday. I will be 60 this year and have been sick THAT long. There were periods of time when I managed fairly well with a handful of pills, massage and other gentle modalities. The popular water exercise everyone recommends–water aerobics–provided little to no relief. After a year and a half, I gave it up and hurt LESS.

Then, I had a surprise. I was 46 and almost fainted at home one day. I went to the doctor and found out that I was pregnant for the first time! We were shocked and elated until I went into withdrawal from muscle relaxers, tranquilizers, and other pills that I was taking to help manage pain, anxiety, and all the other symptoms. Five days later, I miscarried my baby at 3 months pregnant. We were traumatized. I blamed the doctor, Lupron and big pharma.

I found out later I had a prolapsed uterus from taking Lupron, and two years after the miscarriage, I had a hysterectomy. I kept my ovaries thinking I would be thrown back into Lupron hell if I shocked my body again. Since then, I have had more problems from my teeth, to my back, to my thyroid, to dry eyes; there is always something going on in the saga of my unwellness. And, my official diagnosis is fibromyalgia! You guessed it by now, when everything is wrong, let’s not insult her by calling her a hypochondriac. Although they might as well, since it is just as hard to be taken seriously and respected, and since I HAVE a diagnosis, why look for anything else, unless of course it will make money for everyone.

My faith in the medical establishment is extremely crippled. I am surprised if a doctor believes me when I tell him Lupron made me permanently ill. There have been a few, and I mean FEW– and I have seen numerous doctors of various specialties, sometimes traveling hundreds of miles, to no avail.

I have to accept that this is now my life. I have neuro/endocrine/immune system dysregulation brought on by a poison that I willingly agreed to, having no idea what would happen as a result. Of this I am sure. Period. Nothing you can say, show me, or otherwise do will convince me that I am wrong, misled, or uninformed. I am living the sadness, and sometimes overwhelming life of chronic illness imposed upon me by the poison that is Lupron.

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

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Brandi’s Endometriosis Story: 20 Years of Desperation

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Brandi CK La Perle

It Started in Childhood

My story of life with endometriosis begins early. I was four years old the first time I collapsed from anemia. I was such a character, my parents laughed at first thinking I was acting to entertain them only to realize quickly something wasn’t right and rushed me to the doctor. I was given liquid iron supplements with dietary changes involving raw liver, spinach, raisins, and other natural sources of iron, but energy levels were a struggle.

At the age of nine, I was a competitive baton twirler training for competitions. I suffered from severe seasonal allergies that seemed to affect me in ways the kids with asthma didn’t envy. While all the kids were running outside in the spring at recess, I was kept indoors until June looking out the window at all the fun because my eyes and throat would swell shut by evening (even with antihistamines) if I walked on the grass. Rapid weight loss prompted a visit to a GI specialist as adults around me openly suggested I was suffering from an eating disorder, making me feel ashamed and insecure about my body, and wondering what was wrong with me. I felt bad that my parents were having to defend their parenting to so much judgment and wanted so badly to stop the pain that dropped me to my knees during bowel movements. Maybe I was constipated. Maybe I was under too much stress. I was given a special diet and had to sit out of the annual 24-hour Fast for hunger at school while my peers hangrily accused me of not caring about poor kids that can’t eat. At that age it was the end of the world.

Puberty

My mother prepared me for puberty with careful age-appropriate discussion to alleviate fear when it should come. Nobody prepared me for the emotional roller coaster and pain I would be in for that is a “normal” part of becoming a woman. I didn’t take it well at all and was convinced my mood swings were evidence of a personality disorder. My energy levels dropped so low I couldn’t get up in the morning and the pain with menstruation felt like I was going to die. I would wake up to loving letters of encouragement from my mother on the night stand letting me know I was going to be okay and acknowledging such a confusing stage in my life. I was angry with her and angry with the world. Nobody understood how I felt and I resented having to go about life each day as if I was normal. My mother took me to doctors that all insisted I was just difficult. The battle to get me up in the morning stressed the entire household, with my father away at work and my mother trying to start the day with two other young children.

By my late teens the rifts and mood swings in combination with my stubbornness, tore my life apart. As one period ended, the fear and stress of the anxiety and pain to come was already beginning. I saw counselors and doctors. I was told to take Midol, that it was all in my head, and that some girls have a low pain tolerance.

My social life didn’t exist. I was an anxious ball of nerves ashamed I was so damaged and unable to snap out of it like a strong person. Why was I so weak? My senior year of high school involved a bout of rubella (even though I had been vaccinated), and a mysterious acute immune response we never gained answers for after numerous allergy tests and specialists. I almost missed my high school graduation, and drank water while my peers partied to usher the end of 1999.

Years of Pain and Anguish Before my Diagnosis

Young adulthood wasn’t any better. I would wake in a thunderclap of pain, crawl to the bathroom, and lock my boyfriend out of the bathroom so he wouldn’t see the blood spilling out of me. It looked like a murder scene, but I knew I wasn’t dying because it had been going on for years, and doctors insisted some women just have worse periods than others. I was just sensitive. I would spend my shower time fighting between washing myself and cleaning the tub with barely enough energy to hold myself up.

One night my boyfriend didn’t come home and I knew he was lying about where he had been. Too weak to fight, I went to the bathroom, feeling like I couldn’t breath, pulling my necklace off, telling myself he wouldn’t have done that if I was normal. If I could just have sex without it hurting, and stop my body from being so unfair to him weeks out of every month maybe he would love me. I took a bottle of antihistamines and told him I was going for a walk to think things through. I wanted to die, but I didn’t want anyone to try to stop me. Maybe if I wasn’t around anymore the burden on my loved ones could be lifted?

He came after me once he found the medication packages and took me to the hospital where he had my parents waiting. I went home with my mother and father who were so angry with the situation, and extremely concerned for my mental health.

I didn’t want to die. I wanted my pain to stop!

I desperately wanted to be normal.

Over the years the pain became worse and lasted longer and longer in the month. I was given birth control pills that made me feel mentally unstable and didn’t seem to make any difference in the pain.

Abusive Doctors

My worst experience with a doctor happened when I was 21 working in the art business. I was experiencing frequent kidney infections on top of my “menstrual pain” and pain during bowel movements that brought me to my knees. The pain during urination wasn’t like a UTI I had known before. It was different with stabbing pains on my left side. My ovaries throbbed and nodes in my thighs swelled, with pain shooting from my pelvic region down my thighs to my feet. I collapsed when I stood and decided I needed to go to the ER. I was given antibiotics and released with the doctor advising to return straight to the ER if it didn’t improve later in the week.

Later in the week, I was even worse. I had heavy “break-through” bleeding as my “kidney pain” escalated, which required that I attend the IV clinic multiple times a day for several days for antibiotics and observation. One particular morning the nurse noticed my pain was only getting worse. Something wasn’t right and the kidneys should be clearing up. The doctor on-call picked up the phone and I could overhear him telling my family doctor to stop being such an “censored” and come look at me.

My family doctor did come that day. He yelled at me. Berated me. Screeched how I needed to stop going to the hospital for attention! My kidneys were fine and I had nothing but mild inflammation and told me there’s no way my pain was where I was showing him. It wasn’t possible for me to have such acute pain on the left side and a little break-through bleeding is normal for a woman my age.

The middle aged woman sharing the room with me wept. The nurses rushed in teary-eyed after he stormed out to release me, and advised me I had the right to refuse to let him ever practice medicine on me again. I lay there crying until he returned to tell me he had already informed the ER doctors I was wasting everyone’s time, so don’t bother going back. I told him he was no longer my doctor and never to approach me again. “You need me more than I need you” he said, as he stormed out yelling how I need to get a life.

I was taken back down to the ER where I was sent for a vaginal ultrasound. The doctors were dismissive and insisted the GP I had just “fired” is a highly respected medical professional I should have appreciated more.

I had no infection, but inflammation was present and loose blood unrelated to my menstrual cycle was found. I was told “sometimes that happens,” and sent home to rethink my life.

I went from doctor to doctor until my weight ballooned from 125 to 165 pounds practically overnight. My boyfriend’s friends and family fat-shamed me as he sat in silence embarrassed by my appearance. I began having seizures, migraines, repeated bouts of the flu, then mononucleosis. A medicentre physician sent me for testing that revealed that I had Hashimoto’s disease even though my thyroid had been tested very recently with no results. He said, “they don’t normally check the more expensive test.”

It would take time adjusting my synthetic thyroid levels, but they said I was going to be fine. My weight dropped off naturally, but the pain became worse. I went back to the doctor that diagnosed my Hashimoto’s disease at the walk-in clinic, hopeful she would be the first doctor to listen to me. It was the first time a doctor ever suggested I may have ” endometriosis ” and I was referred for laparoscopic investigative surgery with a top gynecologist.

My life was in ruins and I ended my long-term relationship exhausted by the constant accusation that I was faking everything for attention.

Finally Diagnosed with Endometriosis

I had surgery on November 1, 2013 and a week later the gynecologist validated me for the first time of my life at the age of 31. He looked me in the eyes and said “this pain you’ve had most of your life is very real, but we don’t know a lot about this disease”. Ablation was done on the lesions he saw and I agreed to keep taking continuous birth control, but my pain became daily even in absence of a menstrual period.

My Lupron Nightmare

I went back to the gynecologist in hope he could offer a better solution. There was none. He suggested I research a drug called Lupron and make an informed decision to try it. I read women had devastating experiences on this drug, developed for end-stage prostate cancer (the one Lena Dunham has been taking), but I was desperate to try anything.

I wasn’t prepared for what instant chemical castration would do to my body. The day after my first injection I felt extremely nauseated, weak, depressed, hot flashes, and muscle soreness. I went to the doctor and was told it was too soon for the drug to be the cause. My pain continued to worsen with new symptoms and brain fog.

I would lose my phone only to find it was already in my hand, put the remote control in the refrigerator, left an oven burner on forgetting I was making dinner, and even left the house well groomed with a nice blouse forgetting to put pants on. “You’re not wearing pants today?” My neighbor greeted me and I ran home to tell the law firm I would be late and cried on my bathroom floor holding my pelvis wondering how I would live the rest of my days in such pain. Was I safe to live alone? I was alone, scared, and desperate.

My best friend encouraged me to try stand-up comedy, and I felt new freedom on stage for a few minutes trying to make others laugh. I had the opportunity to open for Jeff Lesson from Ontario early on, and as I continued my comedy set, pain shot through my rectum like a thousand knives. There is no running off stage to cry, so I finished and shook hands with the audience after the show. We went to a nearby restaurant with the other comedians and when I went to the bathroom I found something was protruding from my bum. The pain caused me to drop to my knees and I felt as though I could black out. On the way home I asked to be dropped off at the ER where I learned I had a prolapsed rectum.

Excision Surgery: The Start of Healing

In June 2014 I traveled to Calgary, Alberta with my mother for excision surgery, by a specialist with additional training specific to endometriosis. During this surgery it was found that my organs were glued together with scar tissue and being pulled by a spiderweb of adhesions, and my rectum torn out and glued to my vaginal canal by adhesions. The inflammation was so raw that I had to be assessed by an Acute Pain Team. The surgeon removed all the areas of endometriosis including my appendix, cut away all of the adhesions, and restored normal anatomy, including my vagina and rectum.

When I was in Calgary for excision I called a friend at 3 am crying incoherently that I was going to jail break from the hospital to steal cheeseburgers from Pete’s Drive-Thru (I had an elaborate plan set). I was on high doses of pain killers and still feeling the effects of the anesthetic. On the drive back to Edmonton my mother finally got me a Pete’s Drive Thru cheeseburger, but I fell asleep eating after a few bites. When we pulled into Edmonton I woke with my beloved cheeseburger stuck to the side of my face.

In recovering from my surgery, I’ve abstained from sex for years since my last relationship, focused on rehabilitation and learning to live a “new normal” with a multidisciplinary approach to care adding nutritionists, pelvic physiotherapist, acupuncture, mindfulness, meditation, holistic medicine, Reiki, and an army of professionals for an improved quality of life I was told couldn’t be possible with my endometriosis. I’ve even had one pain-free sexual experience that left me feeling like a satisfied woman for the first time in my 34 years of life.

In December 2015 a CT scan found benign lesions on numerous organs throughout my body. Although not surgically confirmed, they are suspected to be endometriosis. I know now that an allergic reaction can trigger my over responsive immune system and the inflammation can cause lesions to bleed, and scar tissue to develop. I am working with my multidisciplinary team for the best quality of life I can have.

No woman should have to go through the pain, humiliation, and isolation of such a silent devastating disease.

Stand Up and Speak Out

I have been EndoMarching with Worldwide EndoMarch since it’s first year in 2014 to put an end to systemic failure in care for endometriosis. I have met thousands of women, a couple of men (very rare, but some men have endometriosis too), countless medical professionals, and I’ve heard too many heartbreaking stories similar to my own. Frustrated doctors that want to help, and desperate families struggling to understand that also need support. One thing has been the same in all of the endo warriors I’ve talked to and that is an active willingness to do anything to make a difference to lift others no matter how bad they may have it. They have the hope and the will, but lack of access to resources to get the effective care/support they need.

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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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My Battle with Endometriosis: Hysterectomy at 23

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Samantha Bowick

At the young age of 19, I was diagnosed with an incurable disease: endometriosis. During my adolescent years, from the age of 13 on, I suffered with debilitating periods every month, and eventually I had ovary pain even when I was not on my menses. My first gynecologist first suggested that I try birth control pills to see if my pain would decrease. She made it seem like it was normal for women to be in so much pain during their period.

When that did not help, we decided that it was time to do a laparoscopic surgery to see if I had endometriosis, since it does run in my family. I was 19 years old. During that surgery, I was found to have endometriosis–she removed it all but a little bit that was on my ovary. I also had a cyst drained. A few months later, the pain was back. My doctor said there was nothing else she could do, so I was forced to find another gynecologist.

Repeated Surgeries, Medications, and Natural Methods with No Relief from Endometriosis

Since my first laparoscopy in 2010, I have had multiple other surgeries. I had laparoscopic surgery for endometriosis in 2012 and 2013. During my surgery in 2013 I also had my appendix removed to prevent disease from growing on it or having it rupture. The surgeon that performed this surgery is an endometriosis specialist. I had to leave pharmacy school twice because the pain was so unbearable.

I have tried almost every birth control pill there is on the market, Lupron, a gluten-free/dairy-free diet, physical therapy for pelvic floor spasms, heating pads, over the counter pain medications, and narcotics as well as Xanax, Cymbalta, Celebrex, Meloxicam, and Ponstel to see if any of these things would decrease my pain and the disease. I also had a colonoscopy done at 20 years old, a CT scan, an MRI, and was tested for interstitial cystitis, a bladder disease that is often found in patients with endometriosis. These procedures did not show anything out of the ordinary.

When I had laparoscopic surgery, I would be pain free for a few months, but then the pain would return, most likely because my body was estrogen dominant. My blood work always came back fine other than my Vitamin D levels were always low. Over the course of five years I went to at least sixteen different doctors trying to find something that would end my pain. However, many of the doctors I went to did not know what else to do because the disease is so complex.  It was after I put my body through menopause twice with Lupron, that I decided it was time to have a hysterectomy.

My Hysterectomy at Age 23

One of the doctors I was seeing was supposed to do my hysterectomy, but changed her mind at the last minute because she decided she wanted me to have a uterine nerve ablation instead, which could cause my uterus to prolapse. I did not want to take the chance of that; I just wanted everything removed. She told me she would not do it without me seeing a therapist because I was so young. Once again, I had to find another doctor who would perform the surgery. I met with a new doctor and told him everything I had already been through, and he agreed I had tried everything and was old enough to make my own decisions, so we went through with the surgery.

Hysterectomy did not Cure Me

I was hoping after I had a hysterectomy that would be the end of my struggles, but it was not. A hysterectomy is not a cure and if the doctor does not remove all of the disease while he is operating, the disease can still grow. I had to have another surgery to remove endometriosis at the beginning of 2015, with a different endometriosis specialist than in 2013.

Right now, I am pain free. I am currently on bio-identical hormones to help me sleep and decrease my stress. In just a few months, I will be able to start my second quarter of pharmacy school and hopefully this time will be successful in finishing. I still struggle with my decision to have a hysterectomy because I have always wanted to have kids, but I know I can still have children; it will just be by a different route. I have decided to use what I have been through to help others, and I hope that by putting my story out there that we will be one step closer to finding a cure.

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Using Lupron to Diagnose Endometriosis: Fact or Medical Fiction

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Lupron to diagnose endometriosis

Lupron or Leuprolide is prescribed regularly for endometriosis, fibroids and undiagnosable pelvic pain. The evidence supporting its use is sketchy at best. Perhaps the most troubling practice is the use of Lupron to ‘diagnose’ endometriosis, an indication for which there is little evidence.

Can Lupron Response Indicate Endometriosis?

According to a report by the Practice Committee for Reproductive Medicine, No.

“The gonadotropin-releasing hormone (GnRH) agonist Lupron has been advocated to diagnose and treat endometriosis without performing laparoscopy, based primarily on the results of one study involving 95 women with moderate to severe chronic pelvic pain unrelated to menstruation. In this study, participants were randomized to receive depo-leuprolide 3.75 mg or placebo injection monthly for three months followed by laparoscopy. The underlying premise was that improved pain symptoms during the hypoestrogenic state induced by GnRH agonist treatment might reliably indicate that endometriosis was the cause.”

What the research found, belies the utility and subsequent marketing of using Lupron to diagnose endometriosis. Pain relief in response to Lupron was not significantly different in those who did or did not have detectable endometriosis at laparoscopy (81.8% vs. 72.7%, respectively). That means, even by the company’s own research the response to Lupron did not and could not accurately diagnose the endometriosis.

Do I Really Need Laparoscopy to Diagnose Endometriosis?

“My doctor said that if I get better on Lupron it means that I have endometriosis. He said I might as well take Lupron now and not wait for the laparoscopy.”  In other words, is the currently popular practice of using a GnRH agonist (e.g. Lupron) as a treatment for endometriosis without doing a laparoscopy first warranted? No, it is not and here’s why.

Lupron pre-laparoscopy has become common practice since the publication of a study by the drug’s manufacturer (no bias there) several years ago. The study showed that 82% of women with pelvic pain that had not responded to milder pain medications or antibiotics were shown to have endometriosis. When Lupron was given and the ovaries temporarily shut off, pain improved. However, pain was also reduced in the women who did not have endometriosis. This happens because hormones made by the ovaries influence pain perception. Therefore, if pain gets better after Lupron is given, it does not necessarily mean that the pain is due to endometriosis. Failure to understand how hormones, pain, endometriosis and Lupron interact leads to an incorrect diagnosis in at least 25% of cases. In addition, many forms of endometriosis do not respond to this drug. Its expense and high level of side effects (e.g. rapid loss of bone calcium) also make it a drug to be used with caution. Our experience is that using the drug before doing a laparoscopy most often delays, but does not eliminate, the ultimate need for laparoscopy.

Is Laparoscopy the Only Way to Diagnose Endometriosis?

Yes. Laparoscopic inspection of the pelvis is the gold standard for diagnosis of endometriosis. There is evidence in abundance qualifying the need for laparoscopic inspection to confirm the diagnosis – and effective treatment of – endometriosis. A non-invasive diagnostic test would be especially useful in the endometriosis and gynepathology community, indeed; however, despite ongoing research and development of many, many such potential tests and markers, not a single one has achieved benchmark and can be relied upon to diagnose endometriosis accurately. Moreover, medical therapy, like Lupron should not be used as evidence of a diagnosis. Medical therapy has never ‘cured the disease’.  Medical therapies like Lupron are used merely to temporarily suppress some of the symptoms associated with endometriosis; it is neither long-lasting nor wholly effective, and it is not without serious side-effects.

Are all Laparoscopic Techniques the Same?

No. You will need to find an expert in laparscopic excision for endometriosis. Meticulous laparoscopic excision (LAPEX), has significantly superior results to not only obtaining diagnosis through histological confirmation, but also to removing disease effectively while preserving healthy tissue and organs. Some specialty centers have rates as low as 7-10% recurrence in their patient populations as far as 20 years out from initial excision. The recurrence rate for ablation and vaporization, on the other hand, are very high – ranging around 40-60% within the very first year following surgery; some as high as 77% within the first 2 years. Superficial ablation and other topical removal of only obvious lesions results in disease left behind and in many cases, depositing carbon which can be painful on its own – as well as be confused for endometriosis at later surgical re-intervention [Nezhat et al.].

Of course; it goes without saying – all of this notwithstanding: what matters most is whether the patient is adequately relieved of her pain. For that, Lupron is most certainly not indicated.

Lupron Side Effects Survey

To determine the rate, range and scope of side-effects associated with Lupron use in women’s health,  Lucine Health Sciences and Hormones Matter are conducting an online survey: The Lupron Side Effects Survey. The survey is anonymous and takes only 15 minutes to complete. If you are woman who has ever been prescribed Lupron, please take a few minutes to complete the survey. Your data will give other women the information they need to make a decision about Lupron.

About the Authors: The Center for Endometriosis Care is a COEMIG-Designated Center of Excellence in Minimally Invasive Gynecologic Surgery which was founded over two decades ago by renowned laparoscopic excision (LAPEX) pioneer Robert B. Albee, Jr., MD, FACOG, ACGE.  The Center is run under the leadership of Medical Director Ken R. Sinervo, MD, FRCSC, ACGE along with a caring, compassionate staff.  We continue our efforts as architects of the legacy in gold standard endometriosis care.

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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.

Related posts:

lupron osteoporosisLupron Induced Osteoporosis? Recovering from chronic illnessRecovering From Medically Induced Chronic Illness

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