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TIA Provoked by Birth Control Pills Prescribed for Endometriosis

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TIA with birth control prescribed for endometriosis

I’m a 34 year old woman living in North Italy. I’ve had pelvic pain since my first period, which several doctors have stated is likely due to endometriosis. In trying to treat this pelvic pain, I was prescribed the birth control pill, which led to me having a transient ischemic attack (TIA).

Seeking Help for Endometriosis

In January 2012 I suffered from a strong pain around my left ovary and I decided to consult with a gynecologist. After a negative transvaginal ultrasound the doctor just prescribed some over-the-counter painkillers, telling me not to worry about my pain. I asked if it could be endometriosis (I had read an article about it and realized it explained all my pains) but he minimized it and told me again not to worry about it.

At first I felt reassured, but my pain was always there: pelvic pain, bowel pain, backache, and fatigue. In June 2014 I consulted with a gynecologist at a hospital in North Italy where there is a specialized centre for endometriosis. After a negative abdominal ultrasound they ordered a pelvic MRI, and suggested progestogenic therapy with Primolut Nor (Norethisterone Acetate).

The MRI was negative and since the hospital was far away from home and I wasn’t happy with the doctor I met, I decided to consult with another gynecologist in my town. In April 2015 the new doctor prescribed me a blood test: blood count, white blood cells, serum iron, folic acid, thyroid hormones, prolactin and CA125 (only the last two resulted slightly high). Then she prescribed me Primolut Nor, ¼ pill every day.

I asked her about possible side effects but she told me not to worry since the dosage was low. I started taking the progestin pill on June 9. After a few days I felt a strange feeling in my body, quite difficult to describe, but I felt like something wrong was going wrong inside me. My breasts were very sensitive, almost painful. My hair became thinner and started falling out especially around my ears. This stopped only after 6 months, during which a dermatologist prescribed me supplements and other hair products; psychologically it was a very difficult time.

Transient Ischemic Attack

On the fifth day, I suffered from a migraine with aura. Some days later I lost sensitivity in the 5th finger of my right foot; I had never experienced anything like that before, but I didn’t pay much attention to it. On June 25 my period started. In the evening I felt something like a pressure, a weight on my chest and some difficulty in breathing. I also had a strong headache, different from any one I had before.

The day after, in the morning, I started feeling strange, cold, weak and shivers in my body. Then suddenly I felt a sharp pain behind my right ear and I lost sensitivity in the right part of my face and in the right arm. I was very scared.

I phoned my gynecologist but she was busy. I called my family doctor and he told me to take aspirin during that day and stop taking Primolut Nor. After some hours the sensitivity slowly came back, but it took some days to feel normal again.

Thinking about it later I think I was very lucky and I should have gone to the hospital immediately but I didn’t understand the seriousness of the situation at that time. In the evening my gynecologist phoned me back, telling me to make an appointment to meet her.

We talked about what happened, and she told me I suffered from a transient ischemic attack, which is just like a stroke, where a blood clot blocks a blood vessel in the brain, except with a TIA that the blockage is temporary and goes away on its own. A TIA serves as a warning sign that a stroke is going to happen. My doctor thought that it was very strange because the dosage of the pill was so low, and that maybe it wasn’t the pill’s fault and that it could have happened even without the pill (this explanation really dissatisfied me). She said she couldn’t do anything more for me and suggested me to consult with a hospital in a nearby town, which deals with endometriosis.

Still Suffering with Endometriosis

In the meantime, my pain had become unbearable and present almost every day. I had also developed digestive difficulties. In August 2015 I met another new gynecologist. She did a transvaginal ultrasound which showed an irregularity in the uterus, probably adenomyosis, and another irregularity behind the uterus, probably an adherence with the bowel. But she explained to me that there’s no way to operate and cure the uterus of adenomyosis, except to do a hysterectomy. Because of my symptoms, she thinks I also suffer from endometriosis (like the other doctors said to me before).

She said it was too dangerous to try the pill again. She sent me for some tests, which I did during the past months: a new CA125 blood test, a pap test, a lower gastrointestinal series and a consult with a gastroenterologist (who prescribed me stool tests and celiac disease tests). She also sent me for a pelvic ultrasound, but despite the sharp pain I felt in some specific areas of my pelvis, it didn’t show anything. All these exams were negative.

Since last fall I’ve also started suffering from pain in my hips. The X-rays didn’t show anything and so my family doctor sent me for a MRI. While the hips looked normal on the MRI, it unexpectedly showed what seems an endometrioma cyst on my left ovary. I know it sounds strange to say, but this discovery has given me new hope. It finally shows that all the pain isn’t in my head (I never thought it was, but this is how I’ve often felt dealing with other people about my illness); and now that I’ve completed all the tests and I have to go back to the gynecologist, maybe this time some treatment could be discussed (maybe a laparoscopy?) and I will gain some relief. All aspects of my life are of course influenced by my health condition, but I don’t want to give up, even if year after year, exam after exam, I sometimes feel very stressed and weary.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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Nightmare on Lupron Street

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lupron NIOSH category biohazard

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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Escaping Endometriosis: Hell to Happiness

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It all started at the age of 13. I went from a tall, lanky tom-boy, to a young frightened teenage girl who was having her first surgery, a laparoscopy, to determine if I had endometriosis. I didn’t know what the word meant; I only knew I wanted it to go away. I was confirmed to have endometriosis and given laser treatment to burn off the lesions, scar tissue and cysts that were forming on my right ovary. I had started my period a few months earlier, and with each cycle my problems began and intensified. At the time of my diagnosis, I had Stage IV endometriosis. Little did I know that this was only the beginning of a long and hellish life-altering journey over the next 2.5 to 3 decades.

One in ten women have endometriosis, but despite that, this disease is not well recognized. I had become a statistic that most people don’t understand, and even fewer have patience for. Looking back, I felt like I fell into a rabbit hole with no way out. My teenage years were awkward to say the least. After being diagnosed with endometriosis, I was placed on birth control pills for several years and not allowed to have a period. The pain wasn’t as bad, but my acne, anxiety, mood swings, concentration, and other complaints continued with full force. I hated my teenage years and basically everything about my life. Pictures were not allowed to happen.

Dealing With Infertility

During my early twenties, I got married and decided I wanted to have a family. I went off the pill and dealt with the acne, pain, constipation, mood swings, and depression as best I could. My marriage was far from good, and I mistakenly thought having a child would fix everything, or at least make me feel semi-whole. But, I was infertile.

For over five years I tried to get pregnant, without success. To say I felt less than a woman is an understatement. It was just one more thing I couldn’t do. Between 1980 and 2005, I consulted numerous specialists and followed their protocols, bought thousands of herbal/natural products, gave up one thing after another, and went to the extreme of cosmetic surgery in an effort to help myself with my acne and skin. Yet, with each passing year, I continued to yo-yo up and down, and my ability to bounce back with each down swing became increasingly harder. I was left infertile, feeling ugly and alone, and felt completely helpless and hopeless.

Anxiety, Depression, and Suicidal Thoughts

In 1997, after going through a very stressful and painful divorce, my endometriosis became uncontrollable. The all-encompassing and incapacitating pain of my condition, as well as the severe cystic acne, uncontrollable bleeding, and low self-esteem sent me spiraling into the depths of depression and anxiety. I thought to myself, “Is the rest of my life going to be like this? This is hell! I can’t continue to live like this. How will I ever escape from this nightmare?” My list and severity of symptoms were increasing despite trying many different protocols and consulting with a myriad of practitioners across all specialties. My acne went from my face to traveling down my neck onto my chest and my back, making the upper half of me raw and ugly looking. I tried dermabrasion, laser resurfacing treatment, Retin-A, Witch hazel, topical acne creams, internal acne remedies, all without success.

Worsening Symptoms of Endometriosis

Towards the end of my divorce, I started bleeding more and more. Each cycle lasted longer, became heavier, and the cramping intensity increased. My time in between my periods became less and less. I was put on birth control pills again to try and stop my bleeding. After a couple of months we increased the pills to two a day in the hopes of slowing down the bleeding. But, after six months, I was still bleeding heavily, anemic, exhausted, and severely depressed. The pain I dealt with on a constant basis felt like knives cutting me from the inside out. The panic attacks started shortly thereafter.

I went through four different procedures in the hopes of slowing down my bleeding: another laparoscopy, two endometrial ablations, and a D&C. These did work for a short period of time, but then within weeks, my bleeding would start again. Suddenly, I had a whole new list of things to deal with. On top of everything else, my legs started blistering, my hair started falling out, I didn’t have the strength to get out of bed, and I couldn’t stop crying or feel any joy with life. I absolutely wanted it all to end. Then came the hot flashes. I was consumed by hopelessness and despair. I was alone, without support, and ready to quit.

The doctors I went to for help gave me one excuse after another as to why things were going the way they were going. I was told “I was allergic to the sun”, and “everything was in my head and I needed to see a shrink.” One didn’t know what was wrong with me but he would give me more drugs in the hopes that it will help, at least with my depression and panic attacks.

Finally, I went to my gynecologist. When I told my doctor what was going on with me, he tested my hormones and found that being on the pill caused the majority of estrogen to be gone from my body. My hormones were completely screwed up. So, that day, he decided to take me off birth control pills so my body could ‘correct’ itself. I went from being a suicidal, crying, pimply mess to an enraged, homicidal crazy woman…and in the space of about three days.

The Beginning of the End

I HATED men, and HATED doctors even more. And then one day, while working, I broke. I had a nervous breakdown. I was immediately put on leave, and told to see the state psychiatrist (I worked for state government at the time). It was at this point, I knew I had to help myself.

My Healing Journey Begins

It was during this time in my life I decided to become a doctor. I didn’t want to be a medical doctor because frankly, they didn’t help me and it felt at times made me worse. I wanted to help heal people. So, I chose to become a Doctor of Chiropractic. This one decision led me to discover another side of medicine I had never heard of before…functional medicine.

Functional medicine teaches that each body system is inter-related. One system or organ has an effect on all systems in our bodies. And, when our systems fall out of balance, we are no longer able to adapt and overcome physical, physiological, emotional, mental, or spiritual stressors. The principles of healing our bodies using functional medicine involve several areas that are often neglected by traditional medicine. We need to cultivate a mindset for healing and transformation, and establish a nourishing lifestyle and optimal nutrition. We also need to minimize the toxic burden on the body by eliminating as many environmental and physiological stressors as possible, and at the same time maximize the detoxification pathways. We need to reduce stress, and break destructive patterns that create a stress response.

I applied the principles of functional medicine to correctly identify and remove the physiological stressors that were blocking my health. In order to determine where the breakdown was occurring I utilized specialized salivary testing that most medical doctors don’t even know about. I also checked my detoxification status, methylation, HPA Axis dysfunction, and much more. I learned how important our gut health and brain health were in relation to our hormones, and worked on correctly the real problem. And I succeeded.

I have learned that the magic bullet, “quick fix” protocols do not work. This is not ‘take a pill’ to ease one symptom, this is a process that allows for your body to heal all symptoms. Just focusing on one aspect of your health and your body is the wrong way to determine and correct where the breakdown is occurring. Understanding, accepting, and working with your body as a whole is the way to healing. It requires time, active participation, and the right type of health professionals to guide you through the process. My new understanding of health and healing have changed my life.

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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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Endometriosis and the Journey to Advocacy

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I will never forget the words the doctor in the ER said to me: “I will not support your habit and I will not prescribe you anything.” These words, so easily said, cut me like a knife. I was no stranger to being told that my endometriosis “shouldn’t cause so much pain”. Or being told I was “a girl who needed to get over it”. But that night changed everything for me.

Let’s go back a bit. My endometriosis journey started when I was 15. I didn’t know what it was that was causing this debilitating pain but I did know that it wasn’t normal. Luckily for me, I had parents who weren’t happy with the answers we were getting either. I can’t even count the number of ultrasounds and CT scans I had trying to diagnose something that no one could see through either of these methods. I was told that my symptoms didn’t make sense by a handful of gastrointestinal specialists and I was refused a referral to a gynecologist because I wasn’t sexually active and therefore “couldn’t possibly have anything wrong with [my] reproductive organs”.

It took me 10 years to finally get the referral I needed. Unfortunately, this is not at all uncommon when dealing with this disease. When I finally got in to see a gynecologist, she diagnosed me with endometriosis by nothing more than just hearing my symptoms. Five minutes after I entered the office, she was ready to send me out with a prescription for birth control pills that were supposed to save me from the pain. I expressed concern with this treatment because by this point I was well versed on how endometriosis was diagnosed and treated, and I knew that birth control pills didn’t treat the disease. I had a family history of blood clotting and was nervous about this potential course of treatment but I was brushed off as being nothing more than a girl who worried too much. At my insistence, I was given a requisition for blood work that had to be paid by myself. I happily did it and 72 hours later was called back in. It was found that I had a genetic blood clotting disorder and that prescription for hormonal birth control would have potentially killed me by causing a lethal blood clot.

I transferred to another gynecologist and again, here was someone who didn’t understand why I wanted a laparoscopy. At this point in my life, I was starting to believe that I perhaps was losing my mind. I needed to know for sure and so I demanded the surgery. On May 31, 2010, I had surgery and was confirmed to have endometriosis on my reproductive organs and bowels. I was relieved. At this point, I thought this was my ticket to real treatment and more answers but instead, I’m really no better off than I have been over the entire course of this disease. I still have severe pain way too often.

I was out one night at a movie with my husband. Afterwards, we were driving home and I was crying. My husband knows that this is a bad sign. I told him I couldn’t make it to our house and he needed to go to my parent’s house immediately (they lived nearby). I began vomiting from the pain. I collapsed on the bathroom floor and couldn’t move. My parents called an ambulance and I was rushed into the ER. Three paramedics were convinced there was something very wrong with me. After two doses of morphine and Gravol, I was still writhing in pain. I felt that as soon as I mentioned the fact that I had endometriosis, I was somewhat written off. This is when the doctor came in to accuse me of being a drug addict looking for a fix. I yelled. I screamed. I demanded treatment and I will never regret the things that I did to stand up for myself. The nurse taking care of me slid me a card for the patient advocate who I contacted the next day. Unfortunately, after a lengthy investigation, I was told by the hospital that the doctor was within his rights and was “trying to educate [me] on the pitfalls of drug abuse”.

It was after this night that I was determined to raise my voice. We need more awareness about this disease. We need doctors to become specialists in this area. We need better treatment. I started a local support group as a result because I don’t believe that anyone should experience something like this without having someone to turn to who truly understands. It has brought me great friends and amazing support – something anyone fighting this disease needs. My advice is simple: never stop fighting for yourself or fighting for awareness. This disease affects too many women for us to remain silent. I hope that my small piece in this world can make a difference for someone else.

If you have endometriosis or any other complex condition and would like to share your story on Hormones Matter, write for us.

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Endometriosis: The Struggle to Find Effective Care

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I have a horrible disease called endometriosis.  It has completely destroyed my life in every way possible.  I am 29 and going through menopause with no children and no chance of having my own children. My body is full of scars from multiple failed surgeries and from unbalanced hormones.

Endometriosis has caused me to feel like less of a woman and has made feel extremely insecure. It has taken all of my energy to focus on getting through the pain, rather than taking the time to enjoy life and figuring out who I am besides a woman with endometriosis. I have not been able to lead a normal life due to the extreme chronic fatigue and daily unbearable pain I have suffered since the age of 15.

Several Years of Misdiagnosis

At 15 I was misdiagnosed with irritable bowel syndrome (IBS), which complicated my chances of receiving an early proper diagnosis of my endometriosis. It started out with heavy painful periods, accompanied by washroom issues that kept me from school a couple days to a week at times.  It then escalated to stabbing, throbbing pains in my abdomen as well as a crushing pressure type of pain in my legs on a daily basis that would just drop me to my knees and render me incapacitated. The pain was so bad that just putting on and wearing clothes was painful. Just the slightest touch or brush of clothing or anything to my abdomen would increase the pain level.

I had several visits to the hospital due to immense pain that ended in the dispensing of unnecessary prescriptions related to IBS. I was not given the proper examinations or tests to determine my actual underlying problem. It was not until I was 18 and another regular visit to the hospital that they finally believed there was something else that was causing my pain. They had figured I was 5 months pregnant due to an extremely distended abdomen. Despite telling them it wasn’t possible because I had not been sexually active, they still gave me a pregnancy test, which did indeed come back negative. An emergency ultrasound showed an endometrioma cyst that was almost 9 inches in diameter containing blood on my right side and a 2 inch cyst on the left side. I had emergency surgery in which the larger cyst, my right ovary and tube were removed immediately.

Finally, a Diagnosis

I was diagnosed with stage 4 endometriosis. One of my many doctors had assumed that the endometriosis had been growing since puberty at the age of 9. Other doctors believe I could have been born with it. Once diagnosed, I went through every type of medical and alternative treatment, as well as failed surgeries, and failed cyst drainings.

My endometriosis kept coming back and started to cause even more damage. I ended up with another very large cyst on my left side. The cyst had become so large that it had physically pushed some of my organs out of place and had begun to crush others. I also had adhesions–web like tissue that had begun to bind my organs together and to the cyst.

Trying to Find Effective Care

I went through several doctors, who in the end had done all they could for me. They told me that they were not skilled enough to deal with my case, and so I was passed on to the end of the line in my city, which was cancer care.  They offered me a hysterectomy and removal of my last ovary, but not removal of all of my endometriosis, because they told me that was impossible to do. They told me that this surgery probably wouldn’t help, they said it was the only option I had left.

It was around this time that a friend and I had decided to start a support group because we felt so alone and frustrated with the lack of options and awareness in our province (Manitoba, Canada). We found out that there was a surgical method called excision that if done properly can remove most if not all of the disease and have little to no recurrence. This type of surgery was not offered by any surgeon in Manitoba.

Excision Surgery in Mexico

I decided to look into these specialists around the world. I ended up speaking with some in Canada, the U.S.,  and Mexico. I had been approved by Manitoba health insurance to see a specialist outside of Manitoba because of the severity of my disease. However, the wait was too long so I ended up going to Mexico instead. I had a 6 and a half hour excision surgery which resulted in the removal of my last ovary, but I did not need a hysterectomy and was able to keep my uterus. I have been pain free for almost a year now, but I am now dealing with the effects of surgical menopause at the age of 29. Even though the pain is gone I will constantly live with the damage that endometriosis has left me with.

Facilitating Support, Education and Awareness

I have been dealing with endometriosis symptoms and its effects for more than 11 years.  It wasn’t until a few years before my last surgery that I was able to form a strong support system. Knowing what it felt like to go through most of my journey misunderstood, alone and confused, I have vowed to spend as much time as possible spreading awareness, education, and bringing women together so that no one has to go through what I did alone.   I started an endometriosis support group in Manitoba with a friend of mine called W.O.M.E.N (Women of Manitoba Endometriosis Network).  Recently we have also come together with The Endometriosis Network Canada to have our very first awareness day in Winnipeg on May 7, along with 16 other cities across Canada.

From what doctors have told me, had I been diagnosed earlier and had the proper excision surgery I probably would have been able to have children, and would not have had to go through so much suffering and unnecessary  treatments. The pain of the disease may be gone for me but I will never be able to forget what is has done and taken away from me.

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The Side Effects of Endometriosis Medications

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Side effects

Making Difficult Decisions

I have endometriosis, adenomyosis, chronic back and pelvic pain, vulvodynia, pelvic floor dysfunction, and as a result I also suffer from depression and anxiety. Endometriosis is a very complicated disease which currently does not have a cure. Often times, endometriosis patients find themselves having to make difficult decisions–some life changing decisions, in order to manage their symptoms.  March is Endometriosis Awareness Month, so I am writing this for the many people that are in the same situation as me. You are not alone in this battle against endometriosis.

 

Endometriosis

It’s been weighing me down like a rusty anchor keeping an old ship at bay.

I have a big decision to make.

It’s been hanging over my head like a storm cloud just waiting to strike.

When I wake up in the middle of the night from a muscle spasm, its on my mind.

When I wake up in the middle of the night to intense hot flashes, sweat soaking through the bed sheets, its on my mind.

When my bladder acts up for the 5th time since 3 a.m, its on my mind.

When I sneeze and one of my back ribs slides out, its on my mind.

All day…every day…ENDOMETRIOSIS IS ON MY MIND.

It was a very long journey to get diagnosed with endometriosis (read my story here), and I thought that once I was finally diagnosed, the road to treatment and feeling better might be easier, but it has not been. I have had excision surgery to remove the endometriosis;  however, my pain has not improved from that surgery.

Since my last article, though the search was long and frustrating, despite numerous rejections, I somehow landed in the care of a wonderful gynecologist. After thoroughly going through my history and all of the unsuccessful “treatments” I’ve put my body through over the years, we discussed some options or rather what little options I had left. He suggested taking a high dosage of progestogen– Norlutate (Norethindrone)–which prevents ovulation and essentially stops my menses altogether, hopefully in turn reducing my daily pain significantly.

I left feeling torn. Part of me wanted to believe there might be a chance that I could regain back some sort of control over my life. The other part of me believed this was “too good to be true” and from past experiences with endometriosis treatments, would probably do more harm than good. After much hesitation and steady contemplation, taking into consideration the financial burden, I decided to give this treatment a try.

The adjustment period was initially pretty rough. The menopausal side effects hit really hard. Between the bed-soaking hot flashes and constant body chills/night sweats, sleep was extremely hard to come by. After about a month, I began to adjust to “functioning” (and I use that word in its loosest sense) on three to four hours of sleep each night.

With the support of my loved ones, as well as a very special meeting with a pain specialist, I decided to pursue a goal of mine: to become a certified yoga teacher. Yoga has been my one constant throughout the past few years, the one thing that I can always turn to and find some sort of relief. Even if it’s not physical relief, the mental relief I get from a class is sometimes worth more than money can buy! I wanted to be able to share that with others suffering from chronic pain. So I enrolled in a yoga teacher training program through my yoga studio. The owners were very supportive and allowed me to make my own hours based on how I felt physically, knowing that my health was my number one priority. I started going 2 to 3 times a week for half days and felt pretty good.

After a month, I started noticing some changes. Instead of becoming stronger and stronger, I was feeling weaker and weaker. My back ribs started slipping out of place randomly. Sometimes it would happen after sitting in the car for too long, other times it would happen at yoga, other times just from a sneeze or cough. I was told this was due to the hormones, and is referred to as ligament laxity (hypermobility).

Slowly but surely more side effects started taking over my life. From mild to extreme–they became all encompassing. From weight gain, acne, hair thinning/hair loss, bladder incontinence (contemplating buying Depends on your 29th birthday is a lot of fun!), constant uncomfortable yeast infections, swelling of my extremities, excruciating pain in my bones, in my joints, in my muscles…all over my body. There were times when I couldn’t be on my feet for more than an hour without having horrible swelling and shooting pains up and down my legs, which made it impossible to walk around. Christmas gift shopping was torture! All of these side effects were having a significant effect on my mood and my anxiety.

Even though the side effects were starting to outweigh the benefits, I stubbornly wasn’t ready to give up. I wasn’t ready to let endometriosis win. The overwhelming sense of this being my last resort was driving me. I met with my doctor to go over everything. After he mentioned bone loss due to the lack of estrogen in my body, he suggested I try add- back therapy of estrogen on top of the progesterone to prevent any more bone loss from happening and to help alleviate some of the menopausal side effects. I was warned to keep an eye out for any returning endometriosis symptoms. It wasn’t long before that started to happen—two weeks, if that.

At the same time as all of that was happening, for the first time ever, I experienced a very scary and painful episode of costochondritis: inflammation of the cartilage that connects a rib to the breastbone/sternum, also known as chest wall pain. It basically mimics what a heart attack feels like. That alone was enough to send my anxiety levels through the roof.

To calm my anxiety, I decided to go to my safe place, a yoga class, which turned out to be a horrible idea. I could barely make it through the first ten minutes of class without collapsing in pain and breaking down in tears. The shooting pain in my wrists and my ankles were so bad that I could barely hold myself up in downward dog. I spent the rest of the class lying there, fighting off the urge to run out of the class and disappear from embarrassment. This was the last straw.

I don’t think I can physically or mentally deal with this anymore. In my heart, I know what needs to happen but my mind keeps replaying flashbacks of the agony I go through living with my period. The truth of the matter is that I’m scared…I’m scared of my period. I’m scared of endometriosis. I’m scared that I’m not mentally or physically strong enough to deal with this for the rest of my life, but I also know in my heart that living with all these side effects surely isn’t a way to live either.

I can’t help but remark on the mind game of it all. I think about the pressure that we feel from other people and the pressure that we put on ourselves to be “better” or “normal”–I’m not sure which is worse. I’ve been holding on, hoping this would work and now I can’t help but be angry with my body for betraying me yet again. For once, why can’t a treatment just work and not leave me overcome with horrible side effects?

I think about all of my endometriosis warriors who have been forced into making life-changing decisions for managing their endometriosis and associated conditions fully knowing the struggle that lies ahead of them. I wonder how they cope? What’s right? What’s wrong? What are the boundaries that we make for our own bodies? When is it too much? When has the line been crossed?

I would love to hear your thoughts xo.

 

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How Do You Deal with the Lasting Effects of Endometriosis?

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living with endo

I had my life all planned out. I was going to graduate high school, go to pharmacy school, graduate in four years, and then find a job working at a pharmacy that I loved. I wanted to date and get married and start a family, too. All that changed when I was diagnosed with endometriosis; even though I did not know it at the time.

Fast forward six years and I am a completely different person than I ever thought I would be. Before being diagnosed, I never really understood what people with health problems go through. Now, I do and I am more sympathetic and empathetic to those that have chronic illnesses. I know what it feels like to not be able to do all the things you want to do and love.

Tough Choices with Endo

I have chosen not to finish pharmacy school because my body just cannot handle the stress. I did not want to make this decision. My body has already been through so much. I do not want to put it through anything that may cause more harm. This is the only body I have and I want to make the most of it.

Am I mad? Yes! Will I be able to move on? Yes, because I know that there is a great life ahead of me even if it is not what I had initially planned. I was given endometriosis for a reason and I am not going to let it win. I am going to use what I have been through to help others who also suffer with this disease, as well as the other diseases that come along with endometriosis.

With Endometriosis Comes Many Other Diseases

I have been diagnosed with interstitial cystitis, polycystic ovary syndrome, and osteoporosis, in addition to the endometriosis. I had a hysterectomy at the age of 23. I know I can adopt, but that is a very challenging process to go through. This will make having a family difficult, but not impossible. It may seem like I am giving up because I am not pursuing a dream I had, but I am not. When I was fighting for pharmacy school and for my health, I realized that I just did not have it in me to keep fighting for both. I had to choose my health, because if I did not, I felt like my quality of life would be worse than it is now. If I were to continue pharmacy school, I felt like I would not be able to enjoy the experience. So instead, I am using everything in my power to gain awareness for endometriosis. I encourage people to talk about this disease so that one day there will be a cure. I do not want anyone to ever go through the agonizing heartache and pain I have been through.

When I was first diagnosed, I never thought I would be dealing with endometriosis for the rest of my life. I was sure there was a pill that would help end my pain, but sadly, I was mistaken. I continue to pray that I will wake up one day and not be in pain anymore. However, I have come to the realization that I will be in some kind of pain for the rest of my life. I have to find a way to be able to cope with that pain. I know some people do not understand this, but I have become closer with God since all of this has happened. Many people do not like to hear the saying “everything happens for a reason”, but that is what gets me through each day.

How do you deal with your symptoms of endometriosis and what has the disease stolen from you? Share your story here on Hormones Matter.  Write for us and together we can end endometriosis.

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