11 rare or uncommon symptoms of endometriosis (build a log for your OB)

Endlessly misunderstood, endometriosis won’t always present in the ‘classic’ way. Pain may come and go – or your endo may be pain-free – but feature other, less common symptoms. 

Maybe you suspect endometriosis, and are concerned about something specific, aside from pain and heavy bleeding. This could be a digestive issue for example – anchored to your period – or period blood that just doesn’t look right. It could even be dizziness, fluid retention causing puffiness in the face, or frequent urination. 

Endometriosis is frequently filed as a condition limited to painful periods and fertility struggles. However, its symptoms can manifest in unexpected – often subtle – ways, leaving many people undiagnosed for years. 

Identifying a few more uncommon symptoms of endometriosis can help you take control of your health and get the support you need. Keep reading for testing support, 11 less common symptoms to bear in mind and tips for building a symptom log, ready for your next OB appointment.

Getting help

Our go-to for endometriosis testing, MyReceptiva™ specializes in identifying silent endometriosis and other factors contributing to unexplained infertility or chronic pelvic pain. 

By using advanced diagnostic tools like the ReceptivaDx® test, they help patients uncover hidden causes and take steps toward effective treatment. It’s the only test clinically proven in published studies that can detect endometriosis and provide answers for unexplained pain and infertility. 

For your reading list: uncommon endometriosis symptoms gives more deep-dive insight on unusual symptoms your doctor may not always dig into (but probably should).

11 uncommon endo symptoms (which get missed all the time)

So often, healthcare professionals tell us that a patient log or record of symptoms and flare-ups is invaluable in getting to the root of a condition more quickly. Let’s build the pathway.

Many people are familiar with the common symptoms of endometriosis, such as pain, heavy bleeding, difficulty conceiving and even recurring miscarriage, but fewer realize that the condition can also present with a range of lesser-known symptoms.

Understanding these could be key in determining whether to explore endometriosis as a possible diagnosis.

1. Bloating and digestive issues

Endometriosis can lead to persistent bloating, often referred to as “endo belly’. This bloating is more than your typical post-meal fullness – it can cause severe abdominal swelling and discomfort. Digestive issues like diarrhea, constipation, and irritable bowel syndrome (IBS)-like symptoms are also common, particularly around and during menstruation.

Chronic bloating can make it difficult to wear certain clothing or feel comfortable during your daily activities. These digestive symptoms are often misdiagnosed as standalone gastrointestinal disorders, delaying proper treatment.

2. Leg pain and sciatica

Endometriosis can affect nerves in the pelvic area, causing pain in the legs or even sciatic endometriosis (where pain radiates along the sciatic nerve – every bit as brutal as it sounds). 

This symptom can be particularly concerning, as it mimics conditions unrelated to reproductive health, such as herniated discs or nerve compression.

The pain may vary from dull aches to sharp, shooting sensations and can interfere with mobility, making everyday tasks challenging. In severe cases, this nerve pain can become chronic without appropriate treatment.

3. Fatigue

Chronic fatigue is a lesser-known yet debilitating symptom of endometriosis. The constant pain, hormonal fluctuations, and inflammation can leave you feeling drained, regardless of how much rest you get.

Fatigue from endometriosis is not simply about feeling tired – it can affect your cognitive abilities, focus, and emotional well-being. This symptom often contributes to a cycle of decreased productivity and increased stress – with endo, it’s essential to address both the physical and mental aspects of the condition.

4. Frequent urination

For some, endometriosis affects the bladder, leading to symptoms like frequent urination or a sensation of urgency. These issues might be mistaken for urinary tract infections (UTIs), further complicating diagnosis.

Some people also experience bladder pain or discomfort, which can worsen during menstruation. These symptoms often overlap with interstitial cystitis, making specialized testing essential for an accurate diagnosis.

5. Acid reflux and heartburn

While primarily associated with gastrointestinal issues, acid reflux and even GERD (gastrointestinal reflux disease) can be rarer symptoms of endometriosis. The condition’s inflammatory nature can exacerbate digestive discomfort and contribute to chronic reflux.

This symptom may worsen during hormonal fluctuations, such as before or during your period. Managing reflux with dietary changes and medical support can help alleviate discomfort while addressing the underlying endometriosis. 

If you frequently experience heartburn alongside other endometriosis symptoms, consult a specialist to investigate potential links.

6. Fevers and immune response

In rare cases, unexplained low-grade fevers may occur as your body reacts to the inflammation caused by endometriosis. This immune system response can be an overlooked symptom that warrants further investigation. Read up here on how endometriosis may be linked to the immune system – it’s a really helpful run-through. 

Tracking any patterns can provide valuable insights for your healthcare provider and guide them toward a more accurate diagnosis.

7. Dizziness

Hormonal changes and inflammation linked to endometriosis can sometimes cause dizziness or a feeling of being off-balance. This symptom may also be related to anemia, a condition commonly associated with heavy menstrual bleeding caused by endometriosis.

Dizziness can interfere with daily life and make activities like driving or exercising more challenging. Addressing anemia through dietary changes or supplementation, alongside endometriosis treatment, can help mitigate this issue.

8. Puffy face

Fluid retention and hormonal shifts linked to endometriosis could, in theory, lead to a puffier face, particularly around menstruation. This may indicate underlying inflammation or imbalances in your body, but the research is limited. Actress Amy Schumer’s experiences may resonate, however, and give your own reading a starting point. 

If you notice recurring facial puffiness alongside other symptoms, such as bloating or fatigue, it’s worth mentioning to your healthcare provider. They can help determine whether this symptom is connected to endometriosis or another condition.

9. Unusual period blood

Endometriosis can affect the color and consistency of your menstrual blood. You might notice dark brown or black blood at the start or end of your period, as well as clots or a thicker texture than usual. These changes occur due to the presence of endometrial-like tissue outside the uterus.

Tracking the color, consistency, and flow of your period over several months can help identify patterns and provide important information for your doctor. While changes in period blood can have multiple causes, combining this data with other symptoms may aid in reaching a diagnosis.

10. Bowel symptoms

Painful bowel movements, blood in stool, or a sensation of incomplete evacuation can all be linked to endometriosis affecting the intestines. These symptoms often worsen during your period but may persist throughout the cycle.

Bowel-related symptoms can sometimes mimic conditions like Crohn’s disease or ulcerative colitis. Specialized imaging or other treatment may be needed to confirm an endometriosis diagnosis. Early detection and treatment are crucial to prevent further complications in your gastrointestinal health.

11. Psychological symptoms

Endometriosis doesn’t just affect your body – it can take a toll on your mental health. Chronic pain, fatigue, and the emotional burden of managing a long-term condition often lead to anxiety, depression, and feelings of isolation.

Emerging research also suggests potential links between endometriosis and cognitive function, including challenges with focus and memory. There may even be connections between endometriosis and conditions like ADHD, although more studies are needed to understand these relationships fully.

Seeking mental health support alongside physical treatments is crucial. Cognitive-behavioral therapy (CBT), support groups, and mindfulness practices can help improve your overall well-being. Discussing these concerns with a healthcare provider ensures you receive holistic care for both your physical and mental health.

Building a symptom checklist

If you recognize any of these symptoms, it’s worth building a checklist to discuss with your OB-GYN. Combining information about your pain patterns, digestive issues, and any unusual changes during your cycle can guide your doctor toward appropriate testing and support.

A detailed checklist might include:

• Severity and timing of symptoms (e.g during your period or throughout the month)
• Any overlap with digestive, urinary, or neurological issues
• Observations about menstrual flow, color, and consistency

Endometriosis is a complex condition with a wide range of symptoms, many of which are uncommon or silent. By educating yourself and seeking expert care, you can take proactive steps toward diagnosis and treatment. 

MyReceptiva™ is here to help you navigate this journey, offering cutting-edge diagnostics and pathways to support.