How to Get an Endometriosis Diagnosis + Advocate for Yourself

I wonder if you ended up here because you’re tired. Maybe you’re tired of feeling sick, or tired of being told you’re crazy, or tired of feeling alone in your illness. As someone who has walked that road for many years, I get it. After so many “no’s”, it starts to feel like a diagnosis might never be a reality for you, right?

I remember how scared I was before I even heard of Endometriosis. I was carrying around 17 years worth of guilt, shame + symptoms. My body was struggling + my emotions were suffering + I had no idea which way to turn or where to go or who to ask for help. I WISH that I could go back to the scared, sweet girl + give her a hug…and also hand her the instructions on how to get an endometriosis diagnosis because God knows she TRIED to find out what was wrong for so long.

But since, I can’t go back + help her, I’m here to help you instead.

And the truth is, it IS possible to advocate for yourself, to search for answers in a way that doesn’t crush your spirit + to get them. It’s also possible to feel better, I promise.

But first, it’s important to remember that you might have Endometriosis…or you might not. It’s not my job or your job to diagnose you. However, most women with endometriosis really struggle to have anyone listen to them, believe them + champion for them. So, while I can’t tell you if this is the right diagnosis, I am here to help you know how to get an Endometriosis diagnosis if that’s where your symptoms are leading you.

Are you struggling with chronic symptoms?

For a long time, I had no idea that my chronic health symptoms could be related to my menstrual health.

I struggled with things like migraines, fatigue, muscle pain, chronic diarrhea, constipation + food intolerances all throughout my teens + twenties. No one seemed to question whether my periods could be involved, especially since a physician threw me on birth control at 16 to deal with my irregular cycle.

Looking back, there were SO many indicators for Endometriosis, but the knowledge about what symptoms Endometriosis can actually cause is very limited…even amongst primary care physicians and OBGYN’s.

Do any of these sound familiar to you?

Painful periods (cramping, pelvic and leg pain, lower-back and abdominal pain)
Bloating
Painful bowel movements or urination
Fatigue and chronic pain
Excessive bleeding
Diarrhea and constipation
Nausea and vomiting
Urinary frequency, retention, or urgency
Pain during or after sex
Blood clotting in periods
Infertility (though many women can still have children)
Allergies and other immune-related issues are also commonly reported including food sensitivities.

These symptoms are often dismissed as IBS, Chronic Fatigue, PMS, food allergies, Fibromyalgia, or any number of incorrect outcomes because Endometriosis is so hard to diagnose.

Why is it so hard to get an Endometriosis diagnosis?

1 in 10 women have Endometriosis, but it takes an average of 10 years and 8 doctors to get a diagnosis, which is CRAZY! We should all be asking why it’s so hard?

Women in general, but also Endo specific patient symptoms are overlooked, dismissed, and not taken quite seriously enough. I wonder if you, like me, have ever heard any of the following things from a doctor?

It’s just a painful period.
Try getting more sleep/drinking more water/etc.
There’s nothing on these tests. There’s nothing wrong with you.
It’s in your head.
You’re being dramatic.
You’re reading too much into this.
Maybe you need antidepressants or to see someone?
Suck it up – all women go through this.

The challenging thing about Endometriosis is that the symptoms and the severity of them sometimes are not at all correlated with your period, which causes doctors to dismiss them or attribute them to something else.

Also, the only DEFINITIVE way to diagnose the disease is with a laparoscopic surgery where a camera is inserted into the abdomen and can spot the endometriosis lesions. It won’t show up on an ultrasound or a blood test, but that doesn’t mean you don’t have it.

Many doctors are quick to dismiss the symptoms or to throw an IBS diagnosis or birth control band aid over them.

So, what do I do then? How do I get an Endometriosis diagnosis?

All of that being said, there are still plenty of good doctors who really care about their patients. And so, our job is to make their job the easiest that we can. Here are some things that you can do to advocate for yourself on your quest for an Endometriosis diagnosis:

Make an appointment + show up prepared. Keep track of your symptoms and any triggers or observations you’ve noted. These things will really help you present your case to your doctor in an informed way. I love using the Flo tracker period app, but you can totally do this on paper too. I’m talking ALL of your symptoms + when they happen – mood, digestive, female health, all of it. Being able to correlate your symptoms with your time of the month can be extremely helpful in making a case to pursue Endometriosis as the culprit.
Make sure that you write out your list of questions before you’re with your doctor. Many of us get nervous and forget what we want to know or ask. Spend some time doing some research before your appointment, write down the reasons you think this could be Endometriosis and any questions you have. Not sure where to start? The Doctor Will See You Now by Dr. Tamar Seckin is the best resource I’ve ever found.
Also, print out and bring along any articles or scholarly pieces of work that you’ve found that speak to you or that you think may be connected to what you’re dealing with. Don’t be ashamed to present this information to your doctor. There may be new information there or a diagnostic path that they haven’t thought about. In fact, this is the EXACT thing that I did that let to my diagnosis. It was this exact article.
Don’t be afraid of saying NO to something that doesn’t feel right to you, whether it’s a diagnosis, a test or a treatment option. Your doctors are meant to GUIDE you, not to decide what is right for your body. Only you get to do that. So, if they immediately respond to your concerns by wanting to throw you on birth control, remember that you have the ultimate say, no matter how much they push you.
Ask for exactly what you want or need. If your doctor doesn’t suggest a particular test or treatment option that you’re really hoping for, ASK them about it. If they disagree with you, ask why. It’s important for you to know and understand why your doctor is suggesting something for your body. So, if you really believe its Endometriosis + want a laparoscopic surgery to check, tell them that.
Remember that YOU ARE PAYING them for their service. You do not need to apologise for asking questions or feel ashamed for pressing your doctor on their opinion or asking for specific tests. They are providing you a service that you are paying for – even if it’s just through your taxes. You deserve to get what you need. Being an informed patient is not something to be embarrassed about.
If they continue not to listen, to dismiss or to steamroll your feelings or concerns, it’s probably time to find a new doctor. You deserve to be heard and be cared for. I know that this can be challenging for some, but sometimes the only option is to seek out a specialist. If you’re not sure where to look, Nancy’s Nook (an Endometriosis support group) has an incredible list of approved Endometriosis surgeons from around the world.

But whether or not you have or are able to get an actual diagnosis, I want you to know that you aren’t alone in your struggle. And, there are things you can do to take your power back.

Ready to start feeling better regardless of a diagnosis or not? I have pulled together the exact steps that I used to go from feeling overwhelmed by my symptoms to living a full, healthy life. Let me help you get there too!

More reading: 7 Ways I’m Healing from Chronic Illness, My Endometriosis My Own Diagnosis Journey, “Do I have Endo?”

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