How Do I Know If I Have Endometriosis? Signs, Symptoms, and What No One Tells You

You’ve been told your period pain is “normal”. That it’s just IBS.. even though you’ve had these symptoms since you were 10 years old. You’ve been told to just “take the pill” or an “antidepressant” or to just cut out a million foods, try X diet + a bunch of random supplements.

But deep down, you know something is actually wrong. You go to the doctor to try to get answers, but you’re met with bandaid solutions, a refusal to dig deeper and run tests because it’s “not necessary” (or they’re not ordering the right tests), and leaving feeling gaslit. Dismissed. And defeated.

Like what you’re experiencing isn’t real or doesn’t matter. But it IS real and it DOES matter.

What is Endometriosis? 

Endometriosis is a full body, chronic inflammatory disease where tissue that is similar to the lining of the uterus grows outside the uterus on the ovaries, fallopian tubes, bowels, bladder, and even beyond the pelvis. Endometriosis has been found on every single organ in the body. 

It is believed to be a period disease, but it can affect the gut, bladder, immune system, nervous system and impact day to day symptoms, not just your period. 

It takes on average 7 to 10 years for a woman with endometriosis to get a diagnosis because of the fact that these symptoms are so normalized. 1 in 10 women have this disease and there is nothing normal about that. Just because painful periods are common does not mean that they are normal. 

But unfortunately, until traditional medicine catches up to the times we will continue to see this disease be written off as nothing more than a period problem that we should just slap birth control on. 

But this disease is REAL. So let’s chat about what some of the common symptoms are of endometriosis, how to tell if you might have it and what to do to finally get some answers.

Common and Not So Common Symptoms of Endometriosis

• Pelvic pain before/during periods, ovulation, or sex
• Chronic bloat (“endo belly”) that worsens mid-cycle
• Digestive issues (constipation, diarrhea, IBS-like symptoms)
• Heavy or irregular bleeding (clots, long cycles, spotting)
• Fatigue + low energy even when you’re sleeping well
• Painful urination or bowel movements during your period
• Infertility or trouble conceiving

And here are some to some of the less talked about signs of endometriosis.

• Nerve pain down the legs, back pain that’s not relieved by rest. 
• Nausea, migraines, or histamine, like flare ups mid cycle ( rashes, palpitations, congestion, increasing anxiety before your period after eating certain foods or just in general) 
• Sensitivity to certain foods, worsening or leading to digestive symptoms that are not present in the first half of your cycle 
• Anxiety, PMDD that comes with some of the above mentioned symptoms that are tied to your cycle.

When you struggle with these symptoms, they really impact your life in more ways than most people can understand. They don’t just impact how you feel physically, but also mentally, the way you’re able to show up day to day, how often you’re able to say yes to your plans versus cancel, your relationship with food, etc. 

You feel like your body is unpredictable, broken, and untrustworthy. You truly feel like it’s betraying you and it’s simply because of the fact that nobody can help you figure out what is actually wrong with you. And even when you feel like you’re dying on the inside, but on the outside, everyone thinks that “you look healthy” or “fine” and just have anxiety. But your symptoms are very real. And you do deserve answers + relief.

Why Getting a Diagnosis Can Be So Hard

While science is currently working on studying + utilizing more blood testing to help diagnose endometriosis, and more and more providers are learning how to read imaging like specialized ultrasounds or MRIs to assess for and endo lesions/ structural issues, most surgeons are utilizing surgery to confirm a diagnosis. 

But there are also many OBGYNs who will recommend birth control to “regulate the cycle” and “balance hormones” to improve symptoms because they may not realize it’s endometriosis. But they’re also taught in school that treatment for endometriosis is hormone suppression via the pill or medically induced menopause like Orlissa, Lupron or Myfembree. 

And to take a less invasive approach to this disease, many recommend birth control before anything else. Not everybody wants to have surgery because it can feel scary. But also, don’t you deserve answers? This is not a disease to cover up. And I say this as someone who has endometriosis herself.

If you want to learn more about treatment options for endo– and the pros/cons, you can read this blog I wrote here. 

This disease does deserve a diagnosis, and if you do have it, you do deserve to have the tissue excised. This will majorly improve your quality of life. Imaging before surgery can help your surgeon understand your case and the extent to which you have the disease. But not all surgeons or radiologists are trained to detect it on imaging. 

So if you end up seeing a provider who doesn’t really want to perform surgery or won’t order you an ultrasound because they think you just “have a painful period”… It may take you a little bit longer to get a diagnosis. Especially if you haven’t ever heard or learned much about it. Or are a woman of color. This makes it even HARDER to get a diagnosis.

So you end up gaslighting yourself because of how hard it can be to get answers. You wonder if it’s all in your head, but deep down you also know that it’s not. So I really want to remind you that we know our body best. 

You are the expert on what you are feeling and even if you don’t totally understand what’s happening, you know that your pain, your bloat, infertility, fatigue, are more than data…they are real.

What to Do If You Suspect You Have Endometriosis

I highly recommend tracking your symptoms and cycle changes. If you feel comfortable, you can use a period tracking app or you can just use a notes app on your iPhone to log what your cycle/body is doing week-to-week. Make a note of what the actual quality of your flow is like, how many days your period is, the symptoms experienced around ovulation (if you are not on hormonal birth control, or other hormone suppression), and how you feel in the second half of your cycle leading up to your period. I also highly recommend you find an endometriosis excision specialist. 

I have a list of endometriosis excision surgeons you can look at here. But I do want to warn you this list is not complete! Nancy’s Nook on Facebook has surgeons listed as well, but do understand that not every great Endo excision specialist out there is on the list. So just be sure to do your research (and maybe even get on reddit).

I wrote a blog diving into the 10 questions to ask when meeting with the endometriosis specialist. If you found a surgeon + have surgery scheduled and you want to know HOW to support your body for this surgery + to help with you having a smoother recovery, check out my free Endo pre-and postop excision surgery checklist.

But here’s what I want you to know while you’re waiting for a diagnosis. You don’t have to wait until your doctor tells you “you have endometriosis” to start getting relief of your symptoms now. The beauty of taking a holistic and full body approach to this disease is when you do work on addressing your nutrition, habits, vitamin + mineral deficiencies, focus on gut healing, support your nervous system, and work on reducing inflammation, you can dramatically improve your quality of life while you’re waiting to seek out and excision specialist. 

Taking a wholistic approach with endo does not mean surgery isn’t important. It also means working with a qualified excision specialist who can surgically excise the endo tissue to overall give you the best quality of life + outcome possible. 

If you are a woman who is looking to have more support with your nutrition and overall learn how to better support your body with endometriosis, whether you are post-op or are waiting to meet with a specialist, I would love to help you on your journey. Give me a follow on Instagram and shoot me a DM if you would be interested to learn more about how I can help you

And if maybe right now you’re not ready to dive a little bit deeper into your symptoms, consider subscribing to my weekly Radiate & Thrive Weekly Newsletter  to stay connected and learn about some tips to improve your endometriosis so you can begin your journey today!

If no one has believed your pain yet… I just want you to know that I do. You deserve answers relief, and to finally feel safe and at home in your body again ❤️