Identifying Uncommon Symptoms of Endometriosis

What is Endometriosis?

Endometriosis is a chronic medical condition where tissue similar to the lining of the uterus, known as the endometrium, grows outside the uterine cavity. This misplaced tissue continues to act as it normally would — thickening, breaking down, and bleeding with each menstrual cycle. However, because it has no way to exit the body, it becomes trapped.

Endometrial-like tissue can grow on the ovaries, fallopian tubes, the outer surface of the uterus, and other organs within the pelvis. In rare cases, it can also spread beyond the pelvic organs. The exact cause of endometriosis is not well understood, but several theories include retrograde menstruation, immune system disorders, and genetic factors.

According to the WHO, endometriosis affects approximately 10% of women of reproductive age globally. This translates to about 190 million women worldwide. The condition is most commonly diagnosed in women in their 30s and 40s, but it can affect any woman who menstruates, including teenagers.

Common Symptoms of Endometriosis

• Pelvic Pain: Chronic and often debilitating pain in the pelvic region, particularly before and during menstruation.
• Painful Periods (Dysmenorrhea): Severe menstrual cramps that can start before the period and last several days, often accompanied by heavy bleeding or spotting.
• Infertility: Difficulty in conceiving due to scarring and adhesions that distort the pelvic anatomy, obstructing the fallopian tubes and affecting ovarian and uterine function.
• Heavy Menstrual Bleeding (Menorrhagia): Excessive menstrual bleeding that can lead to anemia and severe fatigue.
• Pain During Intercourse (Dyspareunia): Pain experienced during or after sexual activity, often due to endometrial-like tissue located behind the uterus or in the lower pelvic cavity.

Uncommon Symptoms of Endometriosis

1. Chronic Fatigue

Endometriosis can lead to chronic fatigue due to systemic inflammation and hormonal imbalances. The inflammatory response associated with endometriosis can affect the entire body, leading to persistent tiredness. Hormonal fluctuations, particularly involving estrogen, can also disrupt normal energy levels and contribute to fatigue.

Chronic fatigue in endometriosis patients is often compounded by insomnia, depression, and occupational stress. These conditions can create a vicious cycle, where pain and sleep disturbances exacerbate fatigue, and fatigue contributes to a decline in mental health and work performance.

A 2018 study from IJERPH indicated that a significant majority of women with endometriosis experience recurrent fatigue. This fatigue is often linked with pain, insomnia, depression, and occupational stress, showing that the condition's impact extends beyond physical symptoms to affect overall well-being.

2. Pain Outside the Pelvic Region

Endometriosis can cause pain in areas beyond the pelvis, including the shoulders, chest, and lower back. This is often due to the spread of endometrial-like tissue to these regions.

Neuropathic pain in endometriosis patients arises from nerve damage or dysfunction caused by endometrial lesions. This type of pain is characterized by tingling, burning, or shooting sensations and can significantly impact quality of life.

For instance, a 2017 GMT study documented cases of endometriosis affecting the sciatic nerve, resulting in sciatica-like symptoms. Patients experienced significant nerve pain that correlated with their menstrual cycles, illustrating how endometriosis can extend beyond traditional symptoms.

3. Urinary Changes

Women with endometriosis often report frequent urination, pain during urination, a sudden urge to urinate, and blood in the urine. These symptoms typically worsen during menstruation.

These urinary symptoms can mimic those of other urinary tract conditions, such as urinary tract infections or interstitial cystitis, making diagnosis challenging.

According to a 2022 study published in Fertility and Sterility, individuals with endometriosis report lower urinary tract symptoms significantly more often than those without the condition.

The study, conducted through a cross-sectional analysis of 1,161 women, found that those with endometriosis had a significantly higher prevalence of various LUTSs, including difficulty passing urine, feeling full after urination, frequent urination, dysuria, and bladder pain.

4. Gastrointestinal Issues

Gastrointestinal symptoms in endometriosis patients can include diarrhea, constipation, bloating, and nausea. These symptoms can be particularly severe during menstruation.

These gastrointestinal issues can be easily mistaken for other conditions such as irritable bowel syndrome (IBS) or inflammatory bowel disease (IBD). Misdiagnosis can lead to inappropriate treatment and prolonged suffering.

According to a study published in BMC Women's Health, up to 90% of endometriosis patients experience gastrointestinal symptoms, significantly impacting their quality of life. It shows that women with endometriosis are at a three to five times greater risk of developing IBS compared to healthy women, with IBS rates as high as 52% among those with endometriosis.

5. Severe Acne

There is a potential connection between severe teenage acne and a higher risk of developing endometriosis. Hormonal imbalances that cause severe acne may also play a role in the development of endometriosis.

Severe acne, particularly during adolescence, could serve as an early indicator of endometriosis, prompting further investigation and early intervention.

 A 2014 study published in Oxford Academic found that women who experienced severe acne during their teenage years were more likely to develop endometriosis, suggesting a link between hormonal activity and the condition.

6. Headaches and Migraines

 Hormonal fluctuations associated with endometriosis can lead to headaches and migraines. These headaches often coincide with menstrual cycles and can be debilitating.

The headaches experienced by endometriosis patients can differ from regular migraines, often being more severe and frequent due to the constant hormonal changes and chronic pain associated with the condition.

Research by Frontiers in Endocrinology reveals that women with endometriosis experience migraines more frequently than those without the condition, with a higher likelihood of severe endometriosis among those who suffer from migraines. Additionally, the frequency of migraines increases in cases where endometriosis is accompanied by adenomyosis.

7. Mental and Emotional Health Issues

Chronic pain and the various symptoms of endometriosis can lead to significant mental health challenges, including anxiety, depression, and stress. The ongoing struggle with pain and uncertainty can be mentally exhausting.

These mental health issues can severely affect daily functioning and overall quality of life. The stress of managing a chronic condition, coupled with the physical symptoms, can lead to a decline in mental well-being.

“The relationship between endometriosis and mental health is more complicated than we expected ” notes Renato Polimanti, PhD, associate professor of psychiatry and the principal investigator of the study at Yale School of Medicine.

According to the Gynecologic and Obstetric Investigation research, women with endometriosis are more likely to experience mental health issues compared to those without the condition. Endometriosis may significantly increase the risk of depression and anxiety, negatively affecting both mental and physical HRQoL. 

If you are unsure about your endometriosis symptoms, use the Docus Symptom Checker as an initial step to identifying your condition, However, it is not a replacement for a real doctor, and consulting a healthcare professional is essential for accurate diagnosis and treatment.

When to Seek Medical Advice

• Chronic pelvic pain
• Severe menstrual cramps that do not improve with over-the-counter pain medication
• Gastrointestinal issues such as persistent diarrhea, constipation, bloating, or nausea
• Urinary changes like frequent urination, pain during urination, or blood in the urine
• Persistent fatigue that affects your daily activities
• Pain during intercourse
• Severe headaches or migraines
• Mental health issues such as anxiety or depression related to chronic pain