10 Things You Didn’t Know About Endometriosis

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We all know that periods can totally be the worst. Cramping, bloating, back pain…the list of hell-ish symptoms goes on and on. No matter your specific symptoms, period pain can make you feel like all you want is to lay in bed, eat ice cream, and watch Netflix until it’s over.

But how do you know when these period pains are abnormal, and that the severity of your symptoms are way more extreme than they should be? If you’re unsure if your periods are “just bad periods” or something more, endometriosis is a condition that you shouldn't rule out. Endometriosis, or endo for short, is a chronic disease that affects an estimated one in 10 women of reproductive age and causes several types of pain in different areas of the body.

One of the most difficult parts about endo is the fact that it can take a long time to get a proper diagnosis. That’s why it’s important to speak up and start the conversation about endometriosis. Here are 10 things you should know about endo to better understand the disease.

1. An estimated 1 in 10 women of reproductive age are living with endometriosis

Given the odds, you most likely know or have known someone who lives with endometriosis. This condition occurs when tissue that acts a lot like the lining of your uterus starts to grow outside of your uterus where it doesn't belong. These out-of-place growths, called lesions, can cause inflammation and severe pain throughout your cycle. Although it may not seem like it’s a super common disease, endometriosis affects so many women in so many ways.

2. Proper diagnosis of endo can take up to six to 10 years

Yes, you read that right. Endometriosis can be extremely difficult to diagnose for multiple reasons: the symptoms can vary greatly from person to person and the lack of awareness of the condition can lead to a long battle of trying to understand and identify the pain they experience. This can mean years of visits to multiple physicians with little to no accurate diagnosis or answers.

Many also attribute this painful phase before a diagnosis simply to lack of awareness and conversation on endometriosis. Doctors, friends, family and peers may write off these symptoms as “just a bad period” or as a different condition, leaving many women feeling lost. This is why understanding endometriosis and learning how to start the convo about endo is so important. SpeakENDO’s doctor discussion guide can help you prepare for a productive conversation with your gynecologist.

3. There are three most common symptoms, but not all women experience all three

Although endometriosis symptoms can vary from person to person, there are three most common symptoms:

  1. Painful periods
  2. Pelvic pain in between periods
  3. Pain with sex

Although these are the most common symptoms, there is a long laundry list of other symptoms that women should be aware of. The symptoms can be mixed and matched in so many different ways, varying from person to person, therefore making it so much harder to diagnose.

4. Other symptoms of endo may have nothing to do with your period or the pelvic area

Some other common symptoms are painful bowel movements, painful urination, pain in the lower back, abdomen, or groin, difficulty participating in day-to-day activities because of excessive pain, exhaustion, or weakness. Take SpeakENDO’s Symptom Quiz to see if you have symptoms that may be related to endometriosis.

5. Endometriosis may be hereditary

If there’s a history of endometriosis within your family, doctors believe that you are more likely to experience it during your lifetime. Other potential risk factors of endometriosis include never giving birth, starting your period before the age of 11, short menstrual cycles, and abnormally long or heavy periods. Unsure if your period is “normal”? SpeakENDO has a super helpful rundown on their website of what’s considered normal and when you should reach out to your gynecologist about your period concerns.

6. Endo lesions can be found in the bladder, bowel, ovaries and other organs

Endometriosis lesions can grow in multiple organs in the pelvic area and can form scar tissue between these organs. When these lesions stick together, they can cause even more pain for in the pelvic area. 

7. Women who experience infertility, or trouble getting pregnant, may also have endometriosis

Studies suggest that approximately 25% to 50% of infertile women also have endometriosis — that’s why many health professionals will ask if you’ve ever given birth if they’re considering endometriosis as a possibility. However, it’s important to note that this correlation hasn’t been proven for sure since endometriosis is so different for every woman.

8. There can be overlapping symptoms or associated conditions with endometriosis

Some conditions that may be associated with or can have overlapping symptoms with endometriosis include uterine fibroids, painful bladder syndrome, adenomyosis, pelvic inflammatory disease (PID), and irritable bowel syndrome (IBS). We know — these all sound super scary and confusing. That’s why it’s super important to talk to your gynecologist about your symptoms to get a better idea about the possibility of endometriosis.

9. It can be hard to describe and speak about endometriosis to others

Many women with endometriosis can find it difficult, awkward or downright confusing to explain to gynecologists, friends, family and employers and teachers how endometriosis may be affecting them. SpeakENDO has tons of tips and examples on how to start the conversation about endometriosis.

10. There are more resources available to you than you may think

SpeakENDO.com has an amazing list of resources that are there to help you understand endometriosis better, the symptoms that come with it, finding the right OBGYN/endometriosis specialist for you, and more.

If any of the endometriosis symptoms listed above sound familiar or possible to you, be sure to visit your OBGYN if you want to discuss your situation and potential options for treatment.