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10 Uncommon Symptoms of Endometriosis: What to Look Out For

Medically reviewed by: Melissa A. Delgado, MD, FACOG

Melissa A. Delgado, MD, FACOG is the founder and owner of The Chronic Pelvic Pain Center of Northern Virginia. Dr. Delgado is an experienced, board-certified OB/GYN and has spent the past 10 years dedicating her time to understanding complex and persistent pelvic pain.

An illustration of a woman sitting on a stool bent over in pain. Surrounding her are graphics representing common symptoms of endometriosis.
Image Source: istockphoto

If you’ve never heard of endometriosis before, you’re not alone. It’s a chronic condition that regularly impacts millions of women worldwide, but endometriosis awareness has always been sorely lacking.

Endometriosis (also called “endo” for short) occurs when the tissue that normally lines the uterus, called the endometrium, starts to grow outside of the uterus. This can cause a variety of symptoms and complications, including pain, heavy periods, and infertility.

While some people are familiar with the common symptoms of endometriosis, such as pelvic pain and painful periods, there are also several uncommon symptoms that you should be aware of.

Common Symptoms of Endometriosis

Before we dive into the uncommon symptoms, let's quickly review the common symptoms of endometriosis. Two of the most common symptoms of endometriosis are:

  • Pelvic pain: Chronic and sometimes debilitating, the pelvic pain associated with endometriosis is typically cyclical, occurring before or during menstruation, and may also occur during sex (dyspareunia) or when you’re going to the bathroom.

  • Lower back pain: Also a common symptom of endometriosis, this pain may be caused by inflammation and scarring due to outgrowths of endometrial tissue. Other symptoms, like leg pain, can often accompany lower back pain.

Other common symptoms of endometriosis can include heavy or irregular periods, fatigue, nausea and vomiting, and even infertility. Notably, many of these symptoms can occur due to other conditions, which makes diagnosing endometriosis rather tricky.

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Uncommon Symptoms of Endometriosis

While pelvic pain and painful periods are the hallmark symptoms of endometriosis, there are many less common symptoms that may also indicate the presence of this condition.

Uncommon endo symptoms can vary widely between women living with endometriosis and may include:

The more uncommon types of pain associated with endometriosis, called “referred pain,” can occur when nerves in the affected area send pain signals to other parts of the body. In other words, they sometimes misfire.

If you're experiencing any of these common or uncommon symptoms of endometriosis, it's important to talk to your doctor to determine the cause and receive appropriate treatment.

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Can endometriosis cause UTI symptoms?

Some of the more uncommon symptoms of endometriosis that often cause confusion are symptoms that might resemble those of a urinary tract infection (UTI).

For example, some women with endometriosis may experience frequent urination, an urgency to urinate, and even a burning sensation while urinating. These symptoms can easily be mistaken for a UTI, leading to misdiagnosis and inappropriate treatment.

It's important to note that endometriosis does not cause actual infections in the urinary tract and that any UTI-like symptoms could be caused by the presence of endometrial tissue growing in the pelvic area. Outgrowths like these can irritate your bladder and cause UTI-like symptoms that aren’t bacterial in nature.

So if you're experiencing symptoms that resemble a UTI but tests come back negative for bacterial infection, it's worth exploring the possibility of endometriosis as the underlying cause.

Endometriosis Flare Up Symptoms

Because endometriosis is a chronic condition, symptoms can come and go in waves of varying intensity. Periods of severe symptom intensity are often referred to as endometriosis flare ups.

During an endo flare, you may experience more severe pain, increased fatigue, and a worsening of other common or uncommon endometriosis symptoms that you typically experience.

It's very important to track your personal symptoms and identify any repeating patterns of triggering behaviors or foods that may be causing your flare ups. Stress, processed foods, or hormonal changes linked to your cycle could all be culprits.

By better understanding your individual triggers, which you might not share with others, you can take steps to manage your symptoms and reduce the frequency and intensity of your endo flare ups.

How to Manage Endometriosis Symptoms

If you suspect you may have endometriosis, it's crucial to seek medical help for a proper diagnosis. Early detection and treatment can help prevent further complications and improve your quality of life.

Your healthcare provider will likely start with a thorough medical history and physical examination. They may also order additional tests, such as an ultrasound or laparoscopy, to confirm the presence of endometriosis and assess its severity.

While there is no cure for endometriosis, there are several ways to manage its common and uncommon symptoms, including flare ups, so that you can improve your quality of life.

The first step is to work closely with your healthcare provider to develop an individualized treatment plan. This may include pain medication, hormone therapy, or even surgery, depending on the severity of your symptoms and your reproductive goals.

Endometriosis treatment options

If you are diagnosed with endometriosis, treatment options vary depending on the severity of your symptoms and your reproductive goals.

In mild cases, over-the-counter pain (OTC) medication and hormonal birth control may be sufficient to manage symptoms. For more severe cases, surgery (perhaps even robotic excision surgery) may be necessary to remove excess endometrial tissue or to address any complications caused by the condition.

In addition to medical treatment, there are also lifestyle changes that can help manage endometriosis symptoms. Regular exercise, a healthy diet, stress management techniques, and adequate sleep can all contribute to reducing inflammation and improving overall well-being.

It's important to discuss all available treatment options with your healthcare provider and make an informed decision based on your individual circumstances. Remember, there is no one-size-fits-all approach to managing endometriosis, and what works for one person may not work for another.

Whatever you decide is best with your provider, it's important to listen to your body and make choices that support your health, well-being, and daily comfort.

Living with endometriosis: coping strategies and support

Living with endometriosis can be challenging both physically and emotionally. That's why it’s so important to develop effective coping strategies and seek support from those who understand what you're going through.

Connecting with others who have endometriosis through support groups or online communities can provide a sense of belonging and valuable advice. Peer support networks such as MyEndometriosisTeam or social media support groups can help.

Additionally, taking care of your mental and emotional well-being is crucial. Chronic pain and other symptoms can and often do take a toll on our mental health, so don't hesitate to seek counseling or therapy if you feel you may need it.

And while this should go without saying, it always bears repeating: engaging in activities that bring you joy and practicing self-care can always help you navigate the ups and downs of living with endometriosis.

Arm Yourself With Awareness

While pelvic pain and painful periods are the most common symptoms of endometriosis, it's important to be aware of the less common symptoms as well. Chronic fatigue, digestive issues, lower back pain, referred pain, and even UTI-like symptoms are all potential signs of worsening endometriosis.

Remember, you are not alone in your journey with endometriosis. With the right support and management strategies, you can live a fulfilling life and manage your symptoms effectively.

If you're experiencing any of these symptoms, it's crucial to seek medical help for a proper diagnosis and treatment. The Pelvic Pain Center of Northern Virginia is dedicated to providing compassionate and comprehensive care for women with endometriosis.


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