5 Ways Endometriosis Impacted My Epilepsy

“Stick to just epilepsy content.”

This is a message I received while talking about my experience with endometriosis and raising awareness for epilepsy. Little did they know, there is a significant connection between epilepsy and endometriosis—a connection I’ve experienced firsthand.

What is Endometriosis?

Endometriosis occurs when tissue similar to the uterine lining grows outside of the uterus, causing pain, irregular periods, and even infertility. According to the Yale School of Medicine, it takes an average of 10 years for women to receive an accurate diagnosis of endometriosis. Many see at least four or five doctors before their pain is taken seriously. For me, it took 25 years and five doctors to finally get the care I needed.

Here’s how endometriosis has directly impacted my epilepsy:

Heightened My Stress

Chronic pain from endometriosis created an unrelenting mental and emotional burden. Stress is a major seizure trigger for me, and the daily toll of managing this condition led to increased seizure activity. The unpredictability of my body made managing stress even harder, creating a cycle I struggled to break.

Disrupted My Sleep

Endometriosis pain was often at its worst during the night. Between intense cramps and discomfort, restful sleep was nearly impossible. Sleep deprivation is another major trigger for epilepsy, and sleepless nights frequently led to seizures the next day.

Led to Catamenial Epilepsy

Catamenial epilepsy is a type of epilepsy where seizures are influenced by hormonal changes during the menstrual cycle. Research shows that some women experience up to a 50% increase in seizures during menstruation. For me, hormonal shifts tied to endometriosis intensified my seizure activity, particularly during my cycle. This made navigating both conditions even more difficult.

Amplified Hormonal Imbalances

Endometriosis worsened my hormonal fluctuations, making my seizures more erratic. Hormonal treatments for endometriosis often brought side effects like mood swings and nausea, adding another layer of complexity to managing both conditions.

Intensified My Physical Fatigue

Fatigue is a common symptom of both epilepsy and endometriosis. Living with both left me physically and emotionally drained. The persistent pain from endometriosis added to the exhaustion caused by seizures and medications, making even simple tasks feel monumental.

Coping with both epilepsy and endometriosis was challenging, but these strategies helped me manage:

Resting When Needed

I learned to listen to my body and rest without guilt. Overdoing it often led to worsened pain or seizures, so pacing myself became essential.

Mindfulness Practices

Incorporating yoga, meditation, and breathing exercises helped reduce stress and gave me tools to manage both pain and seizures more effectively.

Avoiding Triggers

Whether it was specific foods, environments, or situations, identifying and avoiding triggers made a noticeable difference in managing both my conditions.

A Life-Changing Decision

Ultimately, I needed a hysterectomy to address my endometriosis and other gynecological issues. While this decision wasn’t easy, it did help reduce my complex partial seizures slightly.

Advocate for Yourself

If you think you might have endometriosis, advocate for yourself and don’t give up. You know your body better than anyone else. Living with epilepsy and endometriosis is not an easy path, but awareness, persistence, and self-care can make all the difference.

Have you experienced a connection between epilepsy and another condition? Share your thoughts below—I’d love to hear from you.