Artist Cassandra Tytler created a comic strip ‘The Thrill of Endometriosis’ that just about sums up the pain and solitude of this condition. It’s the diminutive ‘just’ added to the diagnosis that is for me especially truthful. ‘Just endometriosis.’ Meaning, it’s not fatal, it’s common, it doesn’t show up on ultrasounds, X-rays or CT scans, and it only happens to women.
I think I have a decent tolerance to pain. I’ve had a baby. I have tattoos. I’ve had dental surgery without anesthetic. I’m pretty good at distancing myself from pain and carrying on with what I have to do in my daily life. The pain of endometriosis is so intolerable I would rather get tattooed on my teeth while giving birth to triplets every day of the week than endure another second of the pain of endometriosis. If you’ve seen the movie Alien, when the baby chews its way out of its human host, you have an idea of the type of pain women with endometriosis suffer. The pain usually intensifies a few weeks before menstruation begins, and continues relentlessly until the period is over, then after a few days respite ramps up again. For me, this was accompanied by vomiting, nausea, low grade fever, exhaustion, chills, confusion, depression, and the desperate idea that there was absolutely nothing medically wrong with me.
I had started off with abdominal pain in February 2011. I called in sick at the gallery I was teaching at for the first time, convinced that I had either pulled a muscle setting up an exhibit a few days before, or that I was having an attack of appendicitis. I had a fever and had started throwing up so when I saw my doctor a few days later she said if the pain got worse it was probably my appendix and to rush to the nearest emergency room. Two days later I was in emerg at North York General Hospital getting shot up with morphine and scanned. The doctors found nothing wrong with my appendix but discovered a few small gallstones and were puzzled by the amount of pain I was having. They sent me home with some Tylenol 3 and an appointment with a gall bladder specialist. When I finally saw him a few weeks later, the pain continuing during this time unabated, he felt my symptoms were inconsistent with gall bladder pain. He gave me what at that time was my second ultrasound and discovered a ‘mass’ on my kidney. Referring me to a kidney specialist took a few weeks and in the meantime I was popping antibiotics just in case, and codeine, the only medication my family physician could prescribe for me that didn’t interfere with some anti-depressants I was taking. The kidney specialist ordered an MRI, a CT scan and blood work. Everything came back clear. I did have some fluid around my right kidney, coincidentally the right side is where all of my abdominal pain was centred, but nothing that he could treat. He sent me back to the referring surgeon. It was at that next appointment that I confided that I was experiencing pain during intercourse. That sounds so clinical. What I meant to tell him really was that it felt like I was having a fiery baseball bat covered in nails rammed into my tender lady parts during sex. He instantly sent me for a Pap smear and gynaecological check up with my family doctor. Everything came back normal but the test itself was excruciating and that was new for me. I asked for a referral to a gynaecologist even though my tests came back clear because during this time my menstrual cycle had morphed into a fresh hell and I began tracking it with a handy dandy app to see when the pain was the worst and whether or not it coincided with my cycle.
The gynaecologist was an utter douchebag. Despite having an entirely female patient roster it was like he had never met a woman before. He interrogated me as though I had invented the months of pain and accompanying symptoms. He cross-examined me like I was on a witness stand. I had waited nearly six months to see him, all the while my life, which had been quite small to begin with, shrunk to a pinprick viewed from my bed. He refused to physically examine me because he said didn’t want to hurt me. He began the examination but stopped in frustration when I cried out in pain.
“But it hurts all the time,” I told him. “Please examine me, I’ve waited months to see you.”
He told me, condescendingly, that sometimes people just have pain for no reason and that I should return to my family doctor. I cried in his waiting room for half an hour before I could calm down enough to hobble onto the transit system and begin the two hour ride home. Surrounded by healthy pregnant women and their partners who looked at me from the corners of their eyes with distaste.
On good days I could hobble to the couch and maybe check twitter, on a great day I could post a blog entry or work on an article. But most days I laid in bed and suffered, convinced that either I had some kind of cancer eating me from the inside out that no doctor could find, or that they were right and there was absolutely nothing wrong with me and I was totally batshit insane, the pain an invention of my twisted mind. My life slipped away from me. I gave up teaching, volunteering, group therapy, art therapy, writing, reading, visiting friends, going out for coffee, spending time with my son and partner. Going for a walk became inconceivable. Being able to sit upright long enough to take the train to the city to see friends or go to a film became a fantasy. Having the necessary concentration and focus to answer emails or write anything longer than a text became ludicrous. Scan after scan came back negative and in the meantime my despair grew as large as the pain until there was no difference between them, a hopelessness that gnawed at my insides, a searing certainty that stripped away my future and held me in a limbo, helpless, hating the way I felt sorry for myself but unable to stop myself from sliding into utter despondency.
I saw my family doctor every month and kept track of my cycle. I was now convinced that if I wasn’t just making up this excruciating pain, that spread now from a small spot in my lower right abdomen to my back and rib cage, probably from the way I was hunched over all the time trying to protect the vulnerable spot from further injury, that this was a gynaecological issue. My doctor, who has the patience of a saint, referred me to another gynaecologist specialist at Mt. Sinai hospital. It took me several months to get in to see her but she was well worth the wait. Mt. Sinai is a teaching hospital in Toronto so with one of her interns they spent at least an hour going through the history of my illness, looking at my record of my menstrual cycle, respectfully asking questions, clarifying answers, and then gently doing a physical exam.
Endometriosis. They conferred with each other and said my symptoms were consistent with endometriosis but the only way to know for sure was to perform a laparoscopy, a procedure in which small fibre optic cameras are inserted into the abdomen to examine the places that CT scans, ultrasounds and X-rays can’t see. I begged them to cut me open then and there but they wanted to try me on a round of birth control for three months first before they did anything as drastic as surgery. The birth control was a bust, turning me from a depressed, irritable bitch to a suicidally depressed, psychotically irritable bitch inside three weeks. I threw them away and went back to the specialist. She agreed finally to cut me open but made me understand they might not find anything internally wrong with me. That despite my consistent symptoms she might not find any endometriosis at all.
“But,” she added, “if there is anything in there, if I do the surgery and we see your appendix is inflamed or find anything at all the matter, I will have it taken care of right then. I will find someone to deal with it right that second. If there is something in there that shouldn’t be, it’s coming out.”
From the Endometriosis Foundation of America
“During monthly menstruation, the female body sheds the endometrium – uterine lining – in the process commonly known as a “period”. In women and girls who have endometriosis, some of these menstrual fluids are retained in the body and abnormally implant in areas outside of the uterus. These implants, or nodules, eventually accumulate on the bladder, bowel, ovaries, cul de sac, and other nearby organs, leading to the development of adhesions, scarring and invasive nodules. This can cause symptoms that vary from painful periods, chronic pelvic pain, infertility, pain associated with intercourse and sexual activity to painful bowel movements, rectal pain and urinary pain or difficulty.
A common myth about endometriosis is that the more endometrial cells accumulated in the body outside of the uterine cavity, the more pain it causes for the woman. Any amount of endometriosis can cause pain, and the disease does not need to be advanced to cause significant symptoms. Likewise, higher stage (3 and 4) disease may cause little to no symptoms in some women. Situations vary; moderate growth can trigger intense pain in some women while advanced growth causes less severe pain in others. Every woman’s situation is unique and therefore expert medical evaluation is absolutely essential.
No consensus has been reached on the definitive cause of endometriosis, though stem cells, genetics, dysfunctional immune response, and environmental triggers may all be part of the multi-factorial origin of the disease. A woman or girl with a mother who has endometriosis is seven times more likely to have the disease herself; endometriosis is also associated with other autoimmune disorders such as thyroid disease.
Despite the confusion and misinformation continuing to surround the disease, the profound, agonizing pain caused by endometriosis is actually treatable, and in many cases quite successfully. Unfortunately, due to a lack of societal and medical community awareness, women are frequently directed to “manage” their discomfort for years with powerful painkillers and hormones – but these only mask symptoms of the condition. What’s more, many patients are incorrectly informed by their doctors and treated for symptoms but not endometriosis, which consequently causes a long delay in effective treatment. This dangerous result has led to many “hit or miss” surgeries and thousands of unnecessary hysterectomies. Laparoscopic Excision Surgery – deep removal of all disease from all areas including bowel, bladder and beyond – is an effective, organ-sparing option; ideally performed by experienced, specialized surgeons with dedicated, multidisciplinary medical teams.
Endometriosis Facts & Statistics
Most women with endometriosis suffer pain—and present symptoms—up to a full decade prior to diagnosis.
Approximately 176 million women and girls worldwide suffer from endometriosis; 8.5 million in North America alone.
Associated costs of the disease are estimated to be a staggering $22 billion annually.
The average woman is 27 when she is first diagnosed with endometriosis.
Endometriosis is one of the top three causes of female infertility. While it is one of the most treatable, it remains the least treated.
Abdominal and bowel symptoms linked to endometriosis are commonly misdiagnosed as Irritable Bowel Syndrome (IBS).
Endometriosis is often misdiagnosed as Pelvic Congestion or Pelvic Inflammatory Disease (PID).
Many infertile women with endometriosis experienced debilitating painful periods as teenagers but were misdiagnosed.
Many women suffer silently because they feel that their pain, especially pain associated with sexual intercourse, is just too personal to discuss with their gynecologist. This is more common in some cultures than others.
Many cases of endometriosis can be successfully treated with Laparoscopic Excision Surgery. Hysterectomy should only ever be considered as a last resort. There is no oral medication to cure endometriosis.”
In a way I am lucky. A few weeks ago when I had my very routine laparoscopy, the surgeons at Mt. Sinai found endometriosis on my right ovary, in the exact spot I had been pointing to for over a year to show each doctor where my pain was, my left ovary, deep in my pelvis and in my bowels, explaining why I had been vomiting for over a year and why it hurt so very much to sit upright. They used lasers to burn away every bit of the growths that they could find. Because so little is known about endometriosis there is no guarantee that this is the end of it for me. It could grow back. Endometriosis is characterized as a chronic condition, with a regrowth rate of, some studies say, 40-50% five years post-surgery, growing exponentially more likely as time passes. Menopause is said to ‘cure’ the condition because a woman no longer produces the estrogen that would lead to the growths developing. It angers me that so little is know about this widespread condition. It ruins careers, relationships, families. I can’t of course help but think if such a condition existed in men it would long since have been cured. It saddens me to know that my 19 months of pain are nothing compared to the average ten years it can take some women to get an accurate diagnosis and treatment.
You know your body. Don’t let anyone ever tell you that what you are experiencing is in your head, or minimize your experience. If you have any of these symptoms, please see your doctor, and if your doctor doesn’t listen, find a new one. I know the last thing you might feel like you have the energy to do is advocate for yourself but don’t let yourself slip between the cracks of an indifferent system. You deserve better. You deserve a full, healthy life.
From the Endometriosis Foundation of America
Symptoms of Endometriosis
Endometriosis is much more than simple “killer cramps.” It can cause symptoms varying from painful periods (called dysmenorrhea), to pain with sexual activity (referred to as dyspareunia), to gastrointestinal and urinary tract difficulties (respectively referred to as dyschezia and dysuria). Infertility is also prevalent in endometriosis, affecting more than half of women who have the disease. Some characteristic signs of endometriosis include:
- chronic or intermittent pelvic pain
- painful menstruation
- irregular vaginal or uterine bleeding
- irregular vaginal clotting
- large, painful ovarian cysts called endometriomas or “chocolate cysts”
- infertility, miscarriage, ectopic (tubal) pregnancy
- pain associated with intercourse
- nausea/vomiting, gastrointestinal cramping, diarrhea/constipation, particularly with periods
- rectal pain
- blood in the urine; urinary frequency, retention, or urgency
- fatigue, chronic pain, allergies and other immune-related issues are also commonly reported complaints in those with endometriosis