We all get bruised on the path to diagnosis; Let your bruises be less permanent. Read to learn everything and prepare yourself, and hopefully you'll reach your goal a little faster.
Most patients start their diagnosis quest at the Ob/Gyn or in the GI department, as those symptoms tend to be the most visible and aggressive.
While endometriosis awareness is finally on the rise thanks to the hard work of large organizations like The Endometriosis Foundation of Amrica, The Endometriosis Association, The Endometriosis Network in Canada, Endometriosis UK, and EndoACT
The journey from first symptoms to diagnosis is still long and bumpy for many, with an average of 10 years passing between early symptoms and a final answer.
This should NOT discourage you at this point - it doesn't mean you'll have to go another 10 hyears with no answers. You're taking a shortcut now by learning about everything you can, and should, do to help yourself.
Endometriosis is a sub-specialty of Ob/Gyn with very close connections to Gastroenterology, but doctors who graduated med school 15-20 years ago and haven’t kept up on research - might not even remember endometriosis exists.
Old med-school books did not contain much information about the disease, and some of them had only ONE short paragraph with very few details and no mention of commonality.
Understandably, they won’t recognize the symptoms. As human beings who choose to help others for life - some will get very intimidated by not knowing what’s going on and not being able to help.
At this point, one of three things happens
- You’re dismissed with a random treatment to try.
It’s close enough, might be in the neighborhood. Might even help! - You’re dismissed with a shrug and a blame that YOU are the problem.
Who cares if it will take you 5+ months to get to a new debilitating point that will give you the courage to complain again. - You’re referred to another doctor who might be able to help
Unfortunately, way too many patients are being put through options 1 and 2 repeatedly, without getting any actual help.
Most of us were raised to never question doctors’ words, and as such - approximately 90% of endometriosis patients experience medical gaslighting at least once in their journey to diagnosis. (that’s number 2 on the list!)
The term “Gaslighting” was coined after the 1944 movie and refers to a toxic behavior in which a person (or a group of people) will manipulate one (or a group) to make them doubt their own feelings, experiences and facts.
Ok, that was a lot of fancy wording.
What does medical gaslightling looks like?
- “Oh, this can’t be so bad”
- “You’re way too young/old/skinny/fat for such symptoms”
- “All women have a period. If it hurts, take an Advil”
- “This procedure never hurts anyone, you’re just sensitive”
- “Do you think you might just be over-stressed?”
- “I’m a doctor for X years and no one ever cried during this test”.
- “I think you’re depressed, which causes the brain to mimic pain. You should see a psychiatrist”
- “Are you sure the pain is here, and not there?”
- “You’re just overweight” (gaslighting with a side of fat-phobia)
- “Sounds like you could really use a good rest, and it will go away”
- “These can’t be all of your symptoms... Which are your main concern?”
Let us break it to you:
- It’s NOT in your head
- It’s NOT your fault
- You’re NOT “just sensitive” (in fact you probably have a high pain tolerance)
- You’re NOT “lazy” for feeling exhausted at all times
Your pain is real.
It’s exhausting your brain with constant stimulation.
It has a name.
Even if the doctor in front of you have never heard of it.
Even if the doctor in front of you is not going to admit they have no clue what’s wrong with you.
Even if they’re your beloved, respected doctor of many years.
The first step to protect yourself during this journey is to learn that YOU are definitely not the problem.
And that you know best when something is wrong, even if you can't tell exactly what.
Some good news on the horizon:
It is exciting and relieving to experience the knowledge and familiarity of new graduates from leading institutions, they’re up to date and usually have seen at least a few diagnosed cases.
So if you’re currently debating which doctor to choose, and you can’t find any reliable recommendations - going for a young OB/GYN poses better chances of them recognizing your symptoms.
Next step: Seeing an endometriosis specialist.
Even if you decide to keep seeing your doctor for regular checkups (you should!) you should have a specialist oversee your case and treatment plan.
More about why it’s important to see a specialist and how to structure your care team in the next articles.
