There is a deep uncertainty that comes with not having an official endometriosis diagnosis.
Doubt can start to creep into your mind, especially when doctor after doctor fails to help you. “Maybe it is all in my head,” you start to think. With the average delay in getting diagnosed with endometriosis (“endo”) at six to ten years, many people living with the disease haven’t even been diagnosed yet. It’s not in your head.
We reached out to members of The Endometriosis Network Canada to learn what it’s like to live without knowing the cause of their symptoms. Some contributors suspect they have endometriosis and others struggled for years before being officially diagnosed with endo. Here’s what they had to say.
The delay
Arguably one of the worst aspects of living with endo, is the length of time it takes to get diagnosed. It’s not just a few weeks or months where people are living in the unknown; people live for years, sometimes decades, without support or knowing the cause of their life-altering symptoms. “It should never have taken 20 years to start this diagnostic and treatment journey,” emphasizes Jocelyne, a member of the endo community.
Sadly, stories like Jocelyne’s frequently come up in The Endometriosis Canada Facebook support group.
“As a woman who isn’t even 30 years old, I have spent more than half my life suffering in pain, silently, with no support from health care professionals. A diagnosis won’t just set me on the path to recovery and treatment, but it will offer validation to the horrific pain I’ve had to endure for the last 15 years,” Robyn explains.
However, there is hope in the diagnostic journey.
Reducing barriers towards an endometriosis diagnosis include being accurately informed as a patient, medical professional or support giver.
If you, or someone you care for, suspect endometriosis and are unsure about how to get diagnosed, or if you aren’t making progress in your treatment plan with your doctor, The Endometriosis Network Canada’s website is one resource that can help you become a well-informed advocate for yourself or a loved one. It offers a wide range of resources including everything you need to know about endometriosis, lists of doctors trained in excision in Canada* and various support options.
The mental toll of the unknown
Not knowing what is happening in your own body can be emotionally draining. One thing that a diagnosis provides is an end to all of the ‘what if’ questions.
An anonymous endo community member describes the mental turmoil of their experience: “I often feel crazy and scared not knowing what is wrong with me, and then all the unknowns that come from that: Will I be able to have kids? Will my upcoming diagnostic surgery give me answers or more questions? What happens if I only have adenomyosis and then I’m stuck in pain waiting a long time for another surgery?”
If you’re feeling overwhelmed with unknowns, know that you’re not alone. There are many avenues of support to explore and can be found listed on The Endometriosis Network Canada’s website.
When no one knows how to help
Despite one in ten women, and unmeasured numbers of transgender, non-binary and gender-diverse individuals, having endometriosis, there are still healthcare providers who continue to miss the signs and symptoms. This is especially true when it presents in less typical ways like with bowel or thoracic symptoms. In many cases, what should be a simple suspected diagnosis (endometriosis can only be officially diagnosed through surgery), often ends up resulting in what seems like a never-ending cycle of doctors, tests, ER visits, and unanswered questions.
“I’m definitely not getting the care I need. I just keep getting pushed from doctor to doctor, with everyone saying I don’t know; try Advil and everything will feel better,” explains Skylar in this exemplary experience.
But don’t give up.
It can sometimes take seeing more than one doctor before you find one who has the expertise to help you.
Getting a referral to an excision specialist from your family doctor or a physician at a walk-in clinic can be a good next step to take. Explore lists of doctors trained in excision in Canada*
Another endo community member reveals the challenges in seeking support while not knowing what is ailing: “Convincing doctors, and trying to do research to figure out what you can do on your own, can be very exhausting and both mentally and emotionally draining. This can also happen after diagnosis, but it’s easier to find support groups when you have an idea of what illness you have. Before that, it can feel like you’re very alone.”
If you’re feeling isolated, know there are thousands of other people out there who know what you’re going through. If you wish to connect with this community, join The Endometriosis Network Canada’s private online support group and explore a variety of other options including The Endometriosis Network Canada’s virtual endometriosis support groups.
Remember: you don’t need an official diagnosis to join any of The Endometriosis Network Canada’s support groups; you just need to suspect that you’re dealing with endometriosis.
When no one understands
Even after finding a supportive community, it can be difficult bringing about understanding in those who don’t immediately comprehend what you’re going through, such as coworkers or friends who may think that it’s ‘just a bad period’. Having a diagnosis can help convey the severity of your symptoms to others who may fail to understand initially.
“It took a long time for anyone to believe I was having any symptoms or they were as bad as I said they were. My boyfriend is super supportive because he sees it. He is there when I can’t get up off the bathroom floor or when I’m in tears in the shower,” says Braelyne. For another endo community member, Robyn has been reprimanded as ‘unreliable’ several times at a current job because of absences due to period pain.
If you know someone who is dealing with pelvic pain, educating yourself about what they are dealing with can vastly improve the way you support them. To a pelvic pain patient, it means the world when someone takes the time to learn about what they are living with, especially as endometriosis is so often misunderstood. This is also the first step in breaking down the stigma that people with endometriosis are ‘unreliable’ or ‘lazy’.
“Only a selective few understand; most just see the outside and not what is really happening on the inside.”
Abolishing stigma surrounding endometriosis is essential to bringing about acute awareness of the disease. Without stigma, diagnostic times are accelerated and the amazing capabilities of individuals living with endometriosis are optimized as they navigate their challenging journey through diagnosis, treatment and recovery.
The difference a diagnosis makes
People who haven’t been diagnosed with endo often do not have a proper pain management plan and end up in the emergency room when they cannot manage their symptoms at home. This leaves patients in a difficult position as the emergency room is not meant to diagnose chronic illnesses. Without knowing the cause of someone’s symptoms, emergency room physicians often don’t adequately treat endo pain because it doesn’t always show up on imaging like a rupturing appendix or ovarian cyst does, or they do not the specialized training to do so.
Marie-Pier, a member of the endo community, believes you suffer a lot more when you don’t have a diagnosis. “If you show up at the hospital for a flare up, they make you wait like it’s not important. They don’t acknowledge your level of pain since you don’t have an official diagnosis. It’s a lot harder to get pain medication as well, because doctors see you as a drug seeker and don’t acknowledge you really do have a disease,” Marie-Pier continues.
By contrast, an official diagnosis permits the patient to convey exactly this to healthcare staff when seeking emergency medical care.
The outcome of the informed care received can make the world of a difference for the patient. While it can vary greatly depending on hospital staff and the patient, some endo community members have found that once they have a diagnosis, their treatment in the ER improves: “I feel that being diagnosed makes a difference. Since I got a diagnosis I was able to have excision surgery with a surgeon on the The Endometriosis Network Canada’s surgeon’s list. When I go to the ER and tell triage that I have endo, I usually get a private bed and pain meds. Before my diagnosis I was often given Tylenol and sent back to the waiting room to wait for my umpteenth ultrasound results,” Stephanie explains.
If you do end up needing to go to the ER, check out tips for the emergency room that can make for a more positive experience.
Community
There has been an increase in endometriosis awareness in recent years and with that, an online community of people who know the ups and downs of living with endo. For some, online endo communities like The Endometriosis Network Canada’s online support group, are the only place where they feel heard, validated and supported: “As soon as I joined The Endometriosis Network Canada and spilled my story with questions and comments, I had so many people confirm odd sensations, pain and symptoms. It wasn’t until I joined these groups that I realized how much I needed it. They gave me the awareness to start asking the questions and doing the research to advocate for myself,” endo community member Stephanie shares.
If you are someone who is currently undiagnosed and suspects you’re dealing with endometriosis, please reach out and join The Endometriosis Network Canada’s Facebook support group or email the The Endometriosis Network Canada Network Support Team at support@endometriosisnetwork.ca
There you will find thousands of other people who have navigated or are currently navigating through the process of getting diagnosed with endo.
You are not alone.