When it comes to endometriosis symptoms, many emphases are placed on painful periods. And yes, painful periods are a common endo symptom for many sufferers. However, it’s not the only symptom. This false representation of endometriosis fuels the negative stigma that endo is a “period disease” or that it’s just a “bad period.” But in truth, it’s more than that.

Endometriosis is a disease with a spectrum of symptoms from mild to severe. Some sufferers may have severe debilitating pain every day, while others have moderate pain occasionally. Even still, some display no noticeable symptoms.

Or their symptoms are easy to dismiss and pass off as something else. Thus, leading to misdiagnosis and improper treatment. Increased awareness regarding uncommon endometriosis symptoms can help improve diagnosis and end stigma.  

9 Uncommon Endometriosis Symptoms

A big issue with most of the downplayed endometriosis symptoms is their similarity to other diseases. This makes it hard for doctors to diagnose and treat correctly. But, recognizing when a symptom isn’t what it seems to be is helpful. Thus, making it easier for you to advocate for your health and speak up when necessary. Let’s talk about ten of the most commonly misdiagnosed endometriosis symptoms. And what you need to know about them.  

1. Painful Urination

Typically when you’re experiencing issues with painful urination, it means you have a bladder infection. So, you visit with your doctor, and he’ll prescribe you an antibiotic to treat the condition, and you’re good to go.  Yet, having endometriosis can lead to recurrent complications with painful urination. And, while a doctor may be quick to brush this off as recurrent bladder infection or a case of interstitial cystitis. Instead, they need to do their due diligence to find the root cause. As a general rule of thumb, your doctor should be running a test to determine if you have a bladder infection before prescribing antibiotics or administering any type of diagnosis. 

2. Abnormal Bowel Habits

Experiencing complications with painful bowel movements, chronic bloating, constipation, diarrhea, and food sensitivity is another often overlooked endometriosis symptom. Due to the inflammatory nature of endo, it can lead to various gastrointestinal issues. These issues are often misdiagnosed and treated as Irritable Bowel Syndrome (IBS). But, this rarely resolves the problem because the underlying cause is not addressed. Relief of symptoms may be achieved with dietary modifications. But, endometriosis still needs to be appropriately diagnosed and treated in conjunction with lifestyle modifications. 

3. Acid Reflux

Endometriosis can trigger symptoms similar to gastroesophageal reflux disease (GERD). You may experience painful indigestion, nausea, vomiting, food regurgitation, burning in the throat, or heartburn. Additionally, these symptoms may become even more bothersome right before your period starts. 

4. Painful Sexual Intercourse

Yes, endometriosis can even impact your sex life. Experiencing pain upon penetration, burning/aching pain, or prolonged throbbing pain post intercourse may be a sign of endometriosis. Having pain and discomfort during sexual intercourse is not normal and shouldn’t be overlooked. But, frequently, women dismiss this symptom because they are too embarrassed. Discuss it with your doctor if you’re dealing with pain during intercourse. This could be due to a benign issue, or it could be a sign of endometriosis. 

5. Unidentifiable Nerve Pain

Another overlooked symptom is how endo tissue can grow on or near nerve pathways. It can lead to pain in unusual areas such as the lower back, legs, and groin when this happens. Unfortunately, this pain is often confused with sciatica or other nerve-related issues. 

6. Chronic Fatigue

There is a significant difference between being tired due to lack of sleep and having chronic fatigue. With traditional fatigue, you can get a good night’s sleep and recover. Whereas with chronic fatigue, you’re wiped regardless of how much sleep you get. Endo sufferers often struggle with chronic fatigue due to ongoing inflammation in the body and hormonal imbalances. However, the inability to function daily due to excruciatingly low energy is not a symptom to ignore. 

7. Pelvic Pain During Exercise

Participating in a consistent exercise regimen is difficult when you have low energy. However, on the occasions you decide to exercise, you may experience sharp stabbing pains in your pelvis and abdomen. Experiencing this pain when you workout could be caused by adhesions being disrupted, resulting in intense pulling and tearing sensations. You may get this pain when running, doing ab exercises, or performing plyometrics. 

8. Severe Ovulation Pain

It’s not abnormal to experience mild ovulation discomfort. As a matter of fact, it’s referred to as mittelschmerz, which is German for middle pain. Ovulation pain consists of a dull, one-sided pain that lasts for a few minutes to a couple of hours. In some cases, spotting or discharge may also occur. However, this is not normal when ovulation pain is severe and disrupts your life. It may signify an ovarian cyst, such as an endometrioma. Or, it could be a sign of endometriosis adhesions on the ovary or fallopian tube. 

9. Abnormal Bleeding

Having a moderate to heavy flow during your period isn’t abnormal. On the other hand, dealing with a flow that causes you to soak through menstrual products is not. Especially if this is a recurrent problem.

 In addition to unusually heavy flow spotting between periods and prolonged menstrual bleeding that lasts beyond 7 days are problems. If these symptoms are a common issue, this may be a symptom of endometriosis and shouldn’t be overlooked.  

What To Do If You’re Experiencing These Symptoms

Advocating for your health isn’t always easy. Doctors aren’t always the best at paying attention and listening to our concerns. We’re often told it’s not a big deal or offered overly simplistic solutions to our problems. This makes getting to the root cause of health issues beastly. But, coming prepared before you visit with your doctor can go a long way in helping you achieve better care. 

Track and Monitor Symptoms

I always encourage women to track and monitor their symptoms. Why? Because if you have a documented history of a longstanding issue, it’s hard to argue away the existence of a problem. Doctors may take you a bit more seriously. Hence becoming open to listening to what you’re saying. While actively working to find solutions for your issue.

Know Your Medical History

Also, knowing your medical history isn’t a bad idea. Talk with the women in your family to see if they had issues similar to yours. Or if they were diagnosed with endometriosis. Again, this lets the doctor know that you’ve done your homework and are serious about your health. Plus, your doctor should always discuss your medical history with you. If you find this isn’t happening, point it out.

This is especially important as it relates to endometriosis since those with a relative with endometriosis have a higher rate of developing endometriosis. Additionally, if you have a family member with endometriosis, you may work with the doctor that treats them. This way, you’re working with someone that has a working knowledge of endometriosis and can adequately help you. 

Discuss Symptoms with Gynecologist

I always recommend discussing any symptoms you suspect may be due to endometriosis with a gynecologist. Even better if you can find an endometriosis specialist. Typically, gynecologists have more awareness of endometriosis and can help you identify if it’s the cause of your symptoms.

On the other hand, gynecologists do not specialize in endometriosis and may not be the best choice for effectively treating endometriosis. Alternatively, finding an endometriosis specialist is best because they specialize in endometriosis. Therefore, they know exactly what to look for and can guide you through the process of achieving a proper diagnosis. Additionally, endometriosis specialists know the latest in endometriosis treatment. 

Persist for Appropriate Diagnostic Testing

With many of the above symptoms, proper testing can help with preventing misdiagnosis. If you find that these symptoms return or aren’t resolved, you should push for broader diagnostic testing. Specifically, testing to identify endometriosis. If the doctor is unable or refuses to do so, have him make a note of this in your record. Then, take your medical records and find someone who will. Don’t ever feel the need to settle or that you’re stuck just because a doctor says no. It’s ok to demand better treatment.

The Reality of Endometriosis

Approximately 1 in 10 women are diagnosed with this condition. And, it takes upwards of 7-10 years to receive this diagnosis. While most of this can be blamed on the difficulty involved with correctly identifying endometriosis symptoms. Another major part is the lack of attention medical professionals pay to women with recurrent health issues. And while the fight for improvement in diagnostic testing and for women’s pain to be believed continues. It is up to each of us to learn how to become better advocates for our health. 

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References

1. Healthline: Why Ovulation Pain Shouldn’t Be Ignored written by Ashley Marcin, medically reviewed by Holly Ernst PA-C July 30, 2018
2. CCRM Fertility Clinic: 8 Health Issues Endometriosis Is Often Mistaken For written by Eva Taylor Grant August 27, 2018