"Unbelievably validating": Canadian woman living with debilitating pain waits 14 years for diagnosis (VIDEOS)
It’s taken over a decade for a 28-year-old Canadian woman to be diagnosed with a condition that proved the debilitating pain she told countless physicians she was experiencing was not in her head.
Jessica Wetzstein told Daily Hive that when she visited clinics and hospitals crying over her knifelike pelvic pain, she’d been called hysterical, an attention seeker and that she needed to stop wasting medical resources.
“I’ve seen more psychiatrists than I’ve seen gastroenterologists or gynecologists,” she said.
After Wetzstein found a new general practitioner in BC last fall, she demanded they look into her symptoms further. Despite her doctor insisting her pain was irritable bowel syndrome (IBS) and anxiety-related, she had an eighth ultrasound.
Her results came back showing she had adenomyosis, which the Mayo Clinic explains occurs when the tissue that normally lines the uterus grows into the muscular wall and can enlarge the uterus.
The diagnosis has “changed my whole life,” Wetzstein said.
“I’ve just been questioning everything. I’m having flashbacks because I have so much medical PTSD. I have flashbacks to every single time I’m telling the doctor … it feels like I’m being stabbed,” she recalled.
“My whole life, as much as I’ve known something is wrong … there’s always that part of you that goes well, ‘maybe they’re right. Maybe it’s not real. Maybe I am making this up.'”
@jessicaiswet4 Replying to @anika ♬ You? – Two Feet
Wetzstein says her life is controlled by pain
In the 14 years that Wetzstein has waited for a diagnosis, her life and mental well-being have been greatly affected, she said.
When she was 14, doctors prescribed Wetzstein antidepressants and over the years, added anti-psychotic and anxiety medications, four medications for IBS, and four medications for gynecological symptoms.
She said her pain led to depression and made it difficult for her to go to school.
“In 2016, I was so sick with lower abdominal pain that I couldn’t get out of bed and was going to the hospital instead of work or university,” she said. “I was fired from my job and kicked out of university with no refund because I was absent and didn’t know when I would be better.”
Around this time, a psychiatrist diagnosed Wetzstein with an “adjustment disorder.”
“Meaning I am unable to cope and move on from stressful life events,” she explained.
The unpredictability of her health is why Wetzstein became self-employed and an online influencer, she said. Part of her content online follows her journey navigating the medical system.
“My whole life is controlled by my abdominal pain,” she said.
@jessicaiswet6 Replying to @Ash Thank you @Skin Specialist Jamie for advocating for me and not letting me settle for the IBS/Stress diagnosis 😭 Its unbelievably validating to have physical proof of the pain. Ive had many ultrasounds that came back “normal”. It wasnt until I said to my new GP that I’m convinced I have endometriosis and would like scans, that it was found, because he specified requested they look for it. After being told the pain is in my mind for half my life I always went crazy questioning my sanity. Now I now that I was right, and no one will make me feel crazy again. Next step is MRI and hysterectomy! Ive been begging to get it out since I was 14 years old, and now I finally have a credible reason. ##adenomyosis##endometriosis##Jessicawetzstein##Jessicaiswet ♬ original sound – Jessica Wetzstein Account #6
A fraction of the pain explained
Wetzstein explained that her fight for an accurate diagnosis is not over. The adenomyosis diagnosis only explains a fraction of the pain she is experiencing.
She added she also has gastro-like symptoms, causing her to be in pain “all the time.”
The adenomyosis would likely explain the increased pain she experiences on her period, she said.
@jessicaiswet4 Replying to @…. ♬ original sound – Jessica Wetzstein Account #4
Regarding the pain she has most days, a doctor she met two weeks ago at the Royal Columbian Hospital Emergency room in BC suggested she also test for endometriosis as it is commonly associated with adenomyosis.
Dr. Catherine Allaire, the medical director of the Centre for Pelvic Pain & Endometriosis at BC Women’s Centre, further explained there is a coexistence between adenomyosis and endometriosis.
“People with diagnosis of endometriosis, especially the more deep endometriosis, about 25 to 30% will have adenomyosis diagnosis as well,” she said.
Dr. Allaire admitted work still needs to be done for medical experts to be able to reliably identify “deep endometriosis,” which 20 and 30% of endometriosis patients have.
However, there is a large group with a type of endometriosis that cannot be seen by ultrasound.
Dr. Allaire explains as technology is improving and the criteria for radiologists to look for are progressing, diagnoses are getting more reliable.
Worldwide Dr. Allaire said it takes between 10 and 11 years for endometriosis to be diagnosed. However, according to a survey she pointed to, she said in Canada, it can take about six years.
“But I think it’s still too long,” she said.
“The cure is a hysterectomy”
The immense pain Wetzstein has felt since she was 14 years old is why she has pleaded for a hysterectomy for years.
In Wetzstein’s family, 13 out of 18 women on her maternal and paternal sides have a hysterectomy after experiencing immense uterus pain.
Now that Wetzstein has been diagnosed with adenomyosis and will receive an MRI to check for endometriosis, she said she would request a hysterectomy again. And she said she is not taking no for an answer.
“The response from doctors is always, ‘You can’t make that decision. You might change your mind. You’re too young,'” she said. “But I’m going to be very aggressive about that from this point forward because I’ve suffered with this for 14 years and there’s a cure, and the cure is a hysterectomy. I’m not going to settle for anything else because you thinking of me as a breeding pod is not as important as me as a human having to live my life through suffering.”
According to Dr. Allaire, adenomyosis is cured by a hysterectomy (when the uterus is surgically removed).
Daily Hive has reached out to the BC Ministry of Health about why women experience difficulties getting hysterectomies in BC and was told BC Women’s Hospital would be providing a statement.
Wetzstein said her experience of being called hysterical “comes down to how females have been perceived in medicine.”
“So many times I’ve gone to the doctor, gone to the ER screaming, crying, and they bring in a psychiatrist,” she said. “This is the experience of the majority of people who have these gynecological conditions that require invasive surgery in order to diagnose because women are treated as if we’re sensitive or dramatic.”
@jessicaiswet4 Replying to @jwetzstein ♬ original sound – Jessica Wetzstein Account #4
Wetzstein has spent ten years navigating the medical system in Alberta and four years in BC when she moved to Vancouver in recent years.
She said there isn’t one person responsible for her experience.
“It’s genuinely just a matter of me slipping through the cracks.”
“Period pain is not normal”
Wetzstein added she does not believe doctors she’s seen over the years are “bad” but are busy. While some have made “ignorant” comments, she said, “I know they genuinely don’t mean to cause harm.”
“I’ve had so many doctors say to me, ‘Well, of course, you’re in pain like you’re on your period.’ Period pain is not normal,” Wetzstein said.
“It is not normal to be unable to perform your daily duties because of period pain. Women have been gaslit and lied to for so long, telling us that suffering and being in pain is normal. And that’s what it means to be a woman, and that is simply false and is obviously medical misogyny.”
Dr. Allaire explained that about 80% of people with a period will say they have some form of discomfort during menstruation. However, when pain starts interfering with everyday life, “it becomes abnormal.”
“There’s a societal normalization of women’s pain,” Dr. Allaire said. “It’s an expectation that is supposed to be abnormal or supposed to be this painful or have affected our moods, our functioning.”
However, she insists that if someone’s pain is causing them to miss their life or they are scheduling their life around their cycles, that is not normal period pain.
As the medical system is under strain and has even been called a “crisis” by doctors in BC, the 28-year-old is urging women to strongly advocate for their health.
Dr. Allaire added, “Overall, the system is under a lot of strain,” and when this happens, “we’re trying to prioritize those that become life and limb.”
Wetzstein is encouraging more education around gynecological conditions and is pleading health care professionals to “take women’s health seriously.”
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