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Maybe you first heard about endometriosis because a loved one is living with the condition. Maybe you’re the one who is living with the symptoms day in and day out. No matter how you learned about the menstrual disorder, you probably have the basics down pat.
You know that endometriosis is tissue similar, but not identical, to the lining of the uterus that is found elsewhere in the body. You know it impacts as many as 200 million people worldwide and has certain trademark symptoms. But like most women’s health conditions, there’s more to it, which is regularly uncovered thanks to women’s lived experiences and continuous medical research.
MyReceptiva aims to educate women on what to look for, and how to talk to their physician, and offers a proven detection test you can order online. Understanding the symptoms and advocating for yourself is the first step in managing this complex disease.
The Usual Suspects: Common Endometriosis Symptoms
Before we dive into a host of uncommon endometriosis symptoms, it’s important to note that a few symptoms are common and frequently connected to an endometriosis diagnosis.
As the World Health Organization explains, ‘severe pain in the pelvis, especially during menstrual periods,’ is one of endometriosis’ trademark symptoms. According to the Office on Women’s Health, at least 11% of women in the United States between the ages of 15 and 44 live with endometriosis.
Many of those women may also experience bleeding in between periods, heavy periods, pain during sex, and trouble getting pregnant.
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One of the most exciting developments in endometriosis detection is the MyReceptiva test, which looks for the presence of BCL6, a marker highly associated with endometriosis and supported by 8 years of clinical use in the infertility space but is now available to everyone.
Plot Twist: 5 Surprising Signs of Endometriosis You Might Not Know About
As for uncommon signs of endometriosis, a mix of anecdotal and medical data has helped clarify that endometriosis can impact everything from a woman’s sleep hygiene to her gut health.
1. Insomnia and Endometriosis
Women living with endometriosis often struggle with chronic fatigue, exhaustion, and insomnia. Since all symptoms are interconnected, a difficult and painful period can trigger a sleepless night, which may then lead to fatigue the next day, and the cycle is never truly broken because of how physically taxing living with endometriosis is.
2. Hair Loss Due to Endometriosis
Hormone fluctuations are intricately linked to many menstrual health conditions, including endometriosis. Dr. Jessica Ryniec, who focuses on reproductive endocrinology and infertility, notes that while there aren’t specific studies that tie hair loss to endometriosis, this does not mean that a tie does not exist. As she explains, the best thing you can do if you’re struggling with hair loss is to check in with your doctor first.
3. GI Issues and Endometriosis
The mind-body connection is undeniable and often runs straight through a person’s digestive health. As MyReceptiva notes, while bloating is a common symptom of endometriosis, other uncommon symptoms can include vomiting, nausea, diarrhea, and constipation, particularly during your period.
4. Endometriosis on the Bladder
Endometriosis isn’t limited to growing in the pelvic area. Endometriosis can also lead to tissue growth similar to the uterine lining on other organs, like the bladder. Bladder-specific symptoms can include incontinence, excessive need to urinate, frequent UTIs, or painful urination.
5. Endometriosis Nerve Pain
In some cases, endometriosis may lead to referred pain, where a person feels pain in one place even though it originates from the other. For instance, some women have shared that their leg hurts even though their pain is tied to their pelvis or back. The pain tends to travel to other parts of the body thanks to a person's nerves and nervous system.
Your Endo Journey: Finding a Path Forward
An endometriosis diagnosis (or suspected diagnosis) isn’t a one-size-fits-all list of symptoms, common or uncommon. Everyone may experience a slightly different version of endo that is still real and difficult to live with. As you learn more about managing your day-to-day with endo, resources like MyReceptiva can help you.
