So, you think you may have endometriosis? You’ve landed at the right page to start investigating! Here we’ll chat a little bit about what endometriosis is, why it’s so common (as well as challenging to diagnose), and a quiz to help you suspect if endometriosis is something you’re dealing with.

Then, if you still think you may have endometriosis, I’ll tell you why it’s essential to get a diagnosis!!

What is Endometriosis?

Endometriosis is a full-body disease that involves the growth of abnormal endometrial-like tissue throughout the body. These endometriosis lesions can be found anywhere from the diaphragm to the brain, although they’re most commonly found in the pelvis and surrounding the reproductive organs.

What are the main symptoms of endometriosis?

Endometriosis is not easy to pin down, nor are the symptoms! They can really vary between patients (click here to see a complete list of the most common and uncommon symptoms), from a lot of terrible symptoms to none at all.

Still, the most common symptoms include pelvic pain (menstrual, ovulatory, pain with sex, pain with urination or defecation, pelvic tenderness or heaviness, etc), gastrointestinal issues, anxiety, infertility, chronic fatigue, and hormonal imbalances. So yes, many different symptoms.

Annoyingly, not everyone who experiences these symptoms always have endometriosis. You can have period pain, for example, and not have endometriosis. You can also have very minimal pain or no pain at all (yes, really) and actually have endometriosis. So, how to tell?

Getting an Endometriosis Diagnosis

The only way to know for certain (as of 2023) if you have endometriosis is through a laparoscopic investigation. This is a procedure that involves anesthesia. While you are under, a doctor will use gas to slightly inflate your abdomen a bit like a ballon, insert a camera through a small incision in your belly button, and take a look inside. They’ll look for endometriotic lesions, cysts, scar tissue, adhesions, and any other abnormality that may indicate endometriosis.

There are other diagnostic tools currently being developed as well. MRI is on the horizon that can already diagnose deep endometriosis and cysts (although not superficial endometriosis, so it can only see 2 types). Serum, urine, and menstrual blood sampling methods are also being developed. However, to date, the only 100% official WE-KNOW-FOR-SURE way to be diagnosed is surgery.

That leaves many of us a bit stumped when we may not want to have surgery right away. Or don’t have access to surgery. Or our doctor told us not to investigate and just go on birth control. What to do? Let’s take an informal quiz!

Endometriosis Symptoms Checklist

For those of you who think you may have endometriosis, here is a totally informal quiz going over some of the main symptoms that often overlap. By looking at the variety of symptoms that cohabitate, sometimes we can get a clearer picture of just how much of a symptom burden we have.

To do this quiz, give yourself 1 point for each bullet point you agree with, and at the end, we’ll tally.

Red-Light Caution: BIG TIME Endometriosis Clues

• Pelvic pain so bad you end up at the ER.

• Severe pain with sex. Maybe not always, but if you ever have painful sex (even only a handful of times) this is a clue.

• Gastrointestinal issues, bloating, and/or pain that leaves you sweating, vomiting, or curling in the fetal position.

• Gastrointestinal issues that get worse at menses, or perhaps only appear during certain phases of your cycle.

• Stabbing or shooting rectal pain.

• Pelvic pain you would describe as “episodes”. They come on suddenly, often due to a trigger (orgasm, heavy exercise, sex, period) but not always. During these episodes it’s hard to function normally until they pass

• Infertility lasting longer than a year. Even without other symptoms, it’s important to consider endometriosis as a potential culprit.

• Need heating packs and painkillers to get through every menstrual cycle. Sometimes, they may not even help because the pain is so bad.

• “Killer” ovulation cramps. Maybe these last for a few hours, or a few days.

• Any severe pain that happens cyclically. This may not be period pain but rather sciatic pain, shoulder pain, rib pain, or foot pain. If it happens every period, this is a clue.
  

  HOW MANY POINTS DID YOU GET? ___________

Yellow-Light Caution: Be Wary Of Endometriosis Clues

• Menstrual pain. Maybe you don’t feel like you’re “dying,” but every month, you’re strongly cramping.

• Ovulation pain. A twinge here or there is normal, more than that may be a clue.

• Very heavy periods.

• Abnormal bleeding that happens outside of your period (after sex, with ovulation, even post-menopausal).

• Consistent bladder pain, pressure, or burning with urination. There is a big association between bladder pain, IC, and endometriosis.

• IBS-like symptoms. If you have constipation, diarrhea, or an IBS diagnosis along with your symptoms, it’s an endo clue. Endometriosis is highly associated with digestive complaints. In fact, for some patients, it’s their only symptom.

• Really bad PMS. Is the 1-2 weeks before your period life-altering?

• Spotting or dark brown blood for days preceding or following your period.

• Fatigue.

• Endometriosis in your family history, especially on your maternal side (I almost made this a RED LIGHT clue, because it’s so common in family lines).

• You have other inflammatory issues or autoimmune conditions as well. Consider psoriasis, eczema, acne, Celiac disease, Hashimoto’s, IBD, etc.

• Chronic allergies.

• Iron and/or zinc deficiency.

• No pain, but you have a ton of random symptoms. This is an odd box to check off, but if you can relate you will know what I’m talking about. Endometriosis is a chronic inflammatory disease, which means it may not cause pain but perhaps you deal with insomnia, histamine intolerance, rashes, exhaustion, joint pain, and more. A “bunch” of symptoms and you don’t know why.

• Read these uncommon endometriosis symptoms here. If you relate to any give yourself a point
  

  HOW MANY POINTS DID YOU GET? ___________

Tally Your Endometriosis Quiz Points

If you checked off any item from the RED LIGHT clues, even just one, I want you to really consider endometriosis now. No one should be experiencing pain or symptoms this life-altering; it is not normal (no matter what your doctor may have told you).

If you didn’t check off any RED light clues but did have some YELLOW light clues, be aware. These symptoms are often associated with endo, but could also be caused by something other than endo. For example, having some period pain and fatigue could be caused by things other than endometriosis, such as a zinc and iron deficiency. Your cat could cause your allergies. Really bad PMS could be caused by overeating sugar. But in general, if you have numerous yellow lights, these could easily indicate endometriosis as a possibility.

What about PCOS?

Polycystic Ovarian Syndrome is totally different from endometriosis, although it’s possible to have both and sometimes the symptoms overlap. However, several key symptoms do not line up. For example, pain is NOT a symptom of PCOS, and androgen excess is not a symptom of endometriosis. PMS, infertility, and hormonal imbalances can be a symptom of both.

When to Seek a Real (Surgical) Diagnosis?

If you’re concerned you have endometriosis, I recommend you seek an accurate diagnosis. To do so you will need to have a laparoscopy to investigate, preferably by a knowledgeable surgeon. All surgeries should be completed with photos in case you need to send them to specialists.

Why? If you have severe symptoms, you want to make sure you know what it is you’re dealing with. If your heavy, clotted, painful period is caused by a fibroid, you can have that removed. If your radical digestive issues are caused by SIBO, you can address that. BUT, if it’s endometriosis, you want to know because it can be progressive—meaning it can grow and morph into something worse if left untreated.

Luckily, there are many awesome treatment options for endometriosis, so knowing what you’re dealing with is key. Know it’s endo, or strongly suspect, and start taking the steps needed to get the care you need.

Best Next Steps For Endometriosis Treatment

If you suspect endometriosis, some great next steps to take are (in no specific order, they’re all important):

1) Diet and lifestyle modulation. Read my book on endometriosis (Heal Endo) and learn about the disease and how to optimize health to address it

2) Surgical consult. Reach out to an endometriosis specialist to check in on your disease stage and surgical options. icarebetter.com is a great place to find a surgeon.

3) Pelvic floor physical therapy. Many of us with endo have pelvic floor issues that can radically contribute to our symptoms, be they pain or digestive. This should be covered by insurance if you have endo symptoms! Work with your doctor to get a referral.

If you want to learn more on WHY properly treating endometriosis is important, stay tuned for next week

Disclaimer:The information provided on this blog is for general informational purposes only and should not be considered a substitute for professional medical advice. Always consult with a healthcare provider before making any decisions regarding your health and well-being.