On Thursday November 2nd, 2017 I went into surgery to have a wide excision via laparoscopy to remove multiple cysts, endometriomas (chocolate cysts) and scar tissue which resulted from deep infiltrating Stage IV Endometriosis. This has been a difficult time in my life. I decided to write about my disease and experience, with the hope that I can provide an informative read for those who might also have the same disease or know someone with it.
WHAT IS ENDOMETRIOSIS
Endometriosis is a disease of the endocrine and immune systems that is under-researched, misunderstood, and commonly ignored. Endometriosis is a whole-body disease. This chronic disease causes unbearable pain, due to a similar tissue to the tissue that normally lines the inside of the uterus, growing on the outside of the uterus. However, endometriosis is not the same as the native endometrium. It grows and attaches onto other organs and areas in the body. With each period, all of the endometriosis tissue outside of the uterus fills with blood, as it is connected to the hormone system, however the blood and tissue in the endometrial growths have no way of draining. Instead, internal bleeding, inflammation and scar tissue develop and cause severe back and pelvic pain, infertility, bowel issues, painful intercourse, irregular or heavy menstruation, anxiety, depression, adhesions and other side-effects. Endometriosis is also associated with a higher risk of several chronic diseases including cancer, autoimmune diseases, allergies, cardiovascular diseases, and chronic fatigue. The only way to diagnose and conclusively determine if endometriosis is present is by a laparoscopy, which normally includes a camera being inserted through a small incision to allow the surgeon to look around the internal cavity.
ROAD TO DIAGNOSIS
2007 – 2012: My periods were always extremely painful, heavy, irregular, and usually lasted from 8 to 9 days long. I was diagnosed with being allergic to dairy and having celiac disease.
2012: I started to pay attention to my symptoms. I kept getting sick or getting infections that I could not fight off and I would need multiple treatments of antibiotics. Several other symptoms blossomed. I went through a point where I would make a doctor’s appointment every month and I would sit there and explain all of my symptoms, begging to be listened to. I was told I had an anxiety disorder that caused me to develop “health anxiety” or “illness anxiety disorder”. I was also told that I had painful periods, like any other woman, and that I should take more Advil. My doctor told me that my health anxiety would cause me to believe that the symptoms “in my head” were real and that I actually did not have anything wrong with me.
2013: I started to experience a great deal of pain and other disturbances within my intestines and lower abdomen. Multiple symptoms lead me to have an iodine test, which resulted in specialists discovering that I had a multi-nodular thyroid goitre.
2014: In my first year of university, I had to leave class because I had almost fainted due to the extreme pain I felt in my lower abdomen. It felt like an excruciating pressure that would not go away. I went into ER only to have a doctor tell me that I probably had a cyst rupture and that all women have cysts that rupture – that it was a natural process. No tests were ordered and I was told to take an extra-strength Advil and go home.
2015: I experienced even more extremely painful periods and for the first time I was experiencing pain in-between my periods as well. I started to experience extreme fatigue even though I was sleeping 8 hours a night. My hormone blood-work was getting unusual flags, which resulted in getting an MRI of my brain to see if I had any tumors that were impacting my pituitary gland. Nothing was found, so I was told that it was a mystery as to why my hormones were so out of whack. I also had a colonoscopy done to determine what was causing all of my intestinal issues – from the inside, my intestines were reported to look normal.
2016: I complained about pelvic pain so often that a urine test was always ordered. There was blood in every urine sample I gave, however since my kidney blood-work was fine, I was told that might be “my normal” to have blood in my urine. I started to realize that I was not able to hold my bladder for longer than 30 minutes.
I hit my low in the end of 2016. I was so depressed that I would curl up in bed and cry for hours at a time. Horrific thoughts and feelings followed me everywhere. My hair was falling out, my skin was peeling, I had no energy whatsoever, my abdomen would bloat so severely that I had a walk-in doctor think I was 6-months pregnant, I was getting sick all the time, my stomach and intestines constantly hurt and I truly believed that I was going to die. I was told that all of these symptoms were a result from my anxiety and depression. However, I knew something was wrong with me. I knew that something was causing my anxiety and depression, and not the other way around. I have never felt so lost and scared as I did during those months. I decided to go off the birth control pill that I had been on, which helped with my depression (and it was not helping with my growing cysts anyway). I decided that as a last resort I was going to pay to see a naturopath. I brought a 2-inch thick binder full of all of my previous tests and blood-work and in a very short time my naturopath had put the entire puzzle together. She sent me for a detailed blood allergy test – it came back saying I was highly allergic to dairy, gluten (both of which I knew already) but also highly sensitive to nuts, seeds, grains, legumes, eggs, soy, potatoes and corn. All of these foods were causing high amounts of inflammation in my body. She told me that these were the allergies that she would normally see in someone with an autoimmune disease, hence, I started my strict Autoimmune Paleo AIP diet. She also thought that with all my other symptoms that I might have endometriosis. I quit eating all of those foods cold turkey – I felt a difference the next day. However, I was still not feeling 100%, so she told me to set up an appointment with a gynecologist, and so I did.
2017: I had such immense pain almost all of the time in my abdomen and lower back. I had developed an unusual lump on the left side of my abdomen that had a burning sensation if I pressed hard enough on it. I went for an ultrasound and I was told that I had a hernia. Five months later I saw a physician specializing in hernias. She told me that she didn’t think it was a hernia and to try hot compresses because it was probably a strained muscle. I had to be very firm with her and I finally convinced her that she should refer me for an MRI. I was put on the end of a long waiting list and months later I had an MRI. A week later the hernia surgeon called me and said “Well, there is no evidence of a hernia, however I think I know what was causing the hernia sensation. There is a significant cyst in that area, as well as several others in your abdomen. You need to make an appointment with another specialist to get this removed as soon as possible, this is a severe case and I believe it is endometriosis.” There was that word again. Luckily, my gynecologist appointment I had made nearly a year ago was a few days later. I told my gynecologist all of my symptoms and she said she was confident that I had endometriosis and she gave me a form to sign for the laparoscopic surgery. I was then put on another waiting list, however once the MRI was sent to her, I had a surgery date set up within two months.
Pre-Operation Form: a week before my surgery, I went to my doctor to get a pre-op form completed. She told me that I would probably need one singular day off of school (in my case, this was disturbingly incorrect). There was no preparation for this surgery except I had to start fasting at 12am the night before.
November 2, 2017: almost a decade after I first started experiencing symptoms, at 22 years of age, I was finally going for surgery to remove the disease that had been negatively impacting my quality of life for so long. The surgery and recovery is the most difficult and painful thing I have ever gone through in my life. This disease needs to be taken more seriously and recognized quicker by physicians. [pre and post-surgery details will be discussed in part two].
WHAT CAUSES ENDOMETRIOSIS
There are multiple theories on what causes endometriosis. The body is a very complex system and difficult to fully understand. However research has shown that exposure to dioxins, found in synthetic chemicals, is directly related to causing endometriosis to develop. These toxins are commonly found in pesticides, herbicides, all plastics, paint, fire retardants and some industrial oils. These chemicals are widely and continually distributed in the environment – and with the increased use of these chemicals, there has been an increase in the amount and severity of Endometriosis. it is clear, now more than ever, that they have negative impacts on the environment, humans and animals and the use of them must be limited or discontinued completely.
Pesticides, herbicides, plastics, flame retardants and pharmaceuticals all have one thing in common, they are all Endocrine Disruptors. Endocrine disruptors are chemicals, usually synthetic chemicals, that impact the endocrine system at very low levels of exposure. These endocrine disruptors are absorbed into the human body by the intestines, respiratory system and skin. These endocrine disruptors are also distributed to the fetus during pregnancy through the bloodstream and afterward through breast milk (dioxins bioaccumulate in the body). Endocrine disruptors severely impact the developing fetus and young children the most, as humans are most sensitive during their developmental stages. The damage caused cannot be undone. Endocrine Disruptors mimic estrogen, have negative impacts on hormone levels, development & sexual characteristics, cause low reproduction rates or infertility, cause an impaired immune system, forms of cancer, and endometriosis.
EXPOSURE TO ENDOCRINE DISRUPTORS
Unfortunately, in the world we live in today, humans are creating their own destruction. However, humans still have the mindset that whatever is man-made must be a miracle. There seems to be no way to escape dioxins, as they are readily created, sold and distributed. Companies even try to manipulate and lie to consumers about the hidden health concerns their products have. Dioxins are also very persistent. However, there are some ways to decrease dioxin absorption:
Since dioxins bioaccumulate, they are able to concentrate in the food chain. Limiting the amount of meat, fish and dairy products you consume and replacing them with organically grown plant products will limit the amount of dioxins our intestines absorb. If your budget does not include the purchasing of organic produce, there are proper ways of cleaning and removing the outside layers of fruits and vegetables to lower the amount of herbicides and pesticides ingested.
With the high amounts of air pollution that occur today, it is difficult to protect ourselves from air contaminated with dioxins (from pesticides, herbicides, chemical burning & much more). If you know an area has recently been sprayed with any type of chemical it would be best to avoid that area altogether or to use proper safety equipment.
A large part of dioxins are absorbed through water intake. Humans need water to live, and our dependence on plastics has gone too far. Every time plastic is purchased, large portions of it gets deposited in the environment. Plastic sitting in soil or in waterbodies leaches dioxins. Also, every time a man-made fibre is washed (clothes made of polyester and the like), it releases plastic microfibres into our water systems. These plastic microfibres accumulate in our drinking water and the animals and plants that we consume. Then the dioxins are directly absorbed into our bodies. The age of plastic needs to end.
Any type of bleached product exposes us to dioxins. Tampons and pads made from bleached cotton or synthetic fibres (plastic) contain dioxins. It is recommended that women start to use unbleached alternatives that do not have plastic applicators. When I used to get periods (I am currently on continual suppression) I would purchase Natracare products only.
Treatment options for endometriosis need to be researched and improved. The current excuses for treatment of this disease are causing women more harm than good. Since my excision surgery, I am still in the process of determining a treatment plan that I am comfortable with, as right now my “treatment” is to take the birth control pill every single day until I am 65 (as children are not in the picture). This is an attempt to try to ensure that I do not get any more periods, as periods decrease my quality of life immensely. This exposes me to incredible health risks that I am not comfortable with. Women with endometriosis also have a greater risk of developing cancer and autoimmune disorders. It is important to do yearly checkups, pap smears, and to make an appointment with your doctor if you are concerned.
I am desperately hoping that more posts like this will bring a greater awareness to this disease and the toxic products that cause it. I truly do not want other people with female reproductive systems to have to suffer through this disease. I’ve said it before, and I will say it again, we are natural beings that evolved from the earth, and we will return back into it. That is a natural environmental cycle that does not include high doses of synthetics. Let’s start looking out for one another and the environment. Pollution and synthetics harm more than we are aware of, or care to admit. Doing what we can to reduce our exposure to these dangerous chemicals and synthetics will help to improve our overall health.
Part Two can be found here.