Dismissive doctors. Excruciating pain. Years of lost time.
These complaints come from several young Alberta women who say their undiagnosed endometriosis lowered the quality of their day-to-day adolescent lives.
According to multiple sources, women face eight to 10 years waiting for a diagnosis of the condition, which sees painful, problematic and unwanted tissue grow around the uterus and elsewhere in the body.
Doctors who refuse to investigate
The Calgary Journal spoke to seven Alberta women living with endometriosis. All say as adolescents, they were dismissed by doctors and gynecologists who would say things like, “It’s all in your head,” “It’s just cramps,” or “Welcome to womanhood.”
The women, including 29-year-old Tatiana Koszarycz, say these statements contributed to them believing they were imagining their symptoms.
“‘It’s probably just cramps, it’s probably just cramps.’ That ‘just cramps’ band-aid or umbrella statement… I don’t even want to know how many women are in such horrible places in their lives, like emotionally and physically because of that dismissal,” says Koszarycz.
As years go by without a diagnosis, the symptoms can worsen and lead to further complications like infertility.
Koszarycz waited 15 years for a diagnosis. She says she wasn’t taken seriously until cysts covered her ovaries, including one that was avocado-sized.
General practitioner Dr. Omatseye Edema says one issue is doctors have their own clinical acumen — a specific area of interest and training — and don’t necessarily have the basic understanding of endometriosis when women come in with symptoms.
“You only look for what you know. If your mind is not going towards endometriosis you think, ‘Is it pelvic inflammatory disease?… Is it irritable bowel syndrome?… the list is endless,” says Edema, who practices medicine at Oakridge Medical Clinic in Calgary.
He explains that physicians need to have an index of suspicion that endometriosis is a possibility and they shouldn’t stop after an ultrasound scan comes back normal. If all tests return negative, Edema says doctors must then refer the patient to a gynecologist.
He adds the system should function in a way where blood tests, a woman’s family history and ultrasounds are done before a laparoscopic surgery is performed.
“So, we go in, take a look… That’s why the diagnosis is generally delayed because we don’t like [going into surgery] until it becomes necessary,” says Edema.
He also says many physicians may be worried they are clogging the system by referring every woman of childbearing age with abdominal pains to gynecologists.
Years of pain and suffering
Endometriosis is so much more than just painful cramps. Symptoms of endometriosis can include:
- Debilitating period pain
- Bowel or urinary disorders
- Painful sexual intercourse
- Leg and lower back pain
- Chronic pain
- Infertility or pregnancy loss
Women with endometriosis initially experience these symptoms with their monthly menstrual cycles, then eventually everyday. The pain can be so severe it becomes impossible to carry on with daily activities like school or work.
Calgarian Kristyn Harder, 25, recalls getting flattened by the condition.
“There were days that I couldn’t stand to sit still in my classes. I missed a lot of school that I didn’t want to miss. I remember even sometimes getting home and walking from the bus was just excruciating because I would’ve been in so much pain from the whole day… I would just need to go home and lie down with a heat pack.That was the only thing that would help me,” she says.
Harder first developed symptoms with her first period at 13 and wasn’t diagnosed until she was 19. During that time, her endometriosis tissue moved to other parts of her body, including her pelvic wall.
Koszarycz’s symptoms also started with her first period. By the time she was diagnosed, she had cysts eight to nine centimeters wide on her ovaries, severely hampering her fertility.
“All of a sudden I went from being told, ‘Everything’s normal, it’s all in your head,’ to it being, ‘Surprise! You have Stage 4 endometriosis. You can’t have kids and you should probably start the in vitro process now,’” says the 29-year-old.
Years of lost time: The mental toll
While waiting for diagnosis, endometriosis worsens, making it harder for women to take part in daily activities. Sufferers report missing work, school, university, sports and social activities.
Endometriosis can cause painful sexual intercourse, which can lead to mental health and relationship problems, adds Edema.
Koszarycz says she was even dismissed by her friends as a teen because they couldn’t understand what she was going through.
The cause of endometriosis is still unknown, but as estrogen is released during the menstrual cycle, it causes the tissue to build up. The only treatment is excision surgery, which involves cutting away the tissue from wherever it has adhered to. Birth control, intrauterine devices, pregnancy and hysterectomies are not cures, but rather band-aid solutions.
Advocates demand more awareness
Heather Guidone, the Surgical Program Director of the Center for Endometriosis Care and former endometriosis sufferer, says the disease itself is not difficult to diagnose via laparoscopic surgery. However, doctors and gynecologists are not taking women seriously soon enough for an earlier diagnosis to be made.
“We tell women and individuals, ‘Hey listen there’s nothing wrong with that! Menstruation is supposed to be painful, this is your life as a woman, periods are supposed to hurt. Don’t talk about it,’” says Guidone, who is based in Atlanta, Georgia.
“You have this automatically inbred silence, where people think, ‘Ok well I can’t talk about it and why should I because it’s normal?’ when in fact it’s not normal,” she adds.
Guidone says patients face stigma around periods from society and doctors. The bottomline is few people want to talk about menstruation and associated problems.
She stresses the best ways to help women include raising awareness, doing more research and improving diagnoses.
“There’s so much misunderstanding and menstrual stigma and taboo and silence that goes around the disease that people think, ‘You can’t come to work because you have painful cramps?’ It’s so much more than that,” says Guidone.
“I think we really need to stop making individuals with endometriosis struggle to be heard. When they tell you they have pain, believe them.”
More info on Endometriosis:
- Facebook support groups: Nancy’s Nook, Endometriosis Support Group Alberta
- Twitter: @CtrForEndometriosis
- Websites: Endo Awareness E-book Center for Endometriosis Care
- Endo What? documentary directed by Shannon Cohn.
*Illustration by Duvet Days used with permission.
Editor: Emily Thwaites | email@example.com