SpeakENDO: Speaking Up About Endometriosis

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It’s not just a painful period. Endometriosis ruins your day-to-day life and experiences, putting women in excruciating and uncontrollable pain all month. This disease not only affects your body but also your relationships with others and professional life. Many women suffering from endometriosis cannot find the energy or are in too much pain to go to family events and spend time with friends, and most of the time they are met with misunderstanding and insensitivity.

SpeakENDO is working to combat that.

First, what exactly is endometriosis?

Endometriosis is a disease where tissue that acts a lot like the lining of your uterus—called endometrium—starts growing outside of your uterus, where it doesn't belong. These out-of-place growths, called lesions or implants, can cause severe pain and inflammation throughout the month. The cause of the disease is unknown, but scientists think that this happens when those bits of tissue leave the uterus in the wrong direction during the period through the fallopian tubes. And while this process occurs in many healthy women, women with endometriosis experience extreme pain.

An estimated one in 10 women of reproductive age suffers from endometriosis. According to Dr. Hugh Taylor, Chair of the Department of Obstetrics, Gynecology and Reproductive Sciences at Yale School of Medicine, “Endometriosis is a very common disease, and there are a lot of women out there who aren’t adequately treated now.”

The main symptoms include, but are not limited to, painful periods, pelvic pain in between periods, and pain while having sex. Endometriosis can also cause:

  • Painful urination and bowel movements
  • Bleeding or spotting between periods
  • Heavy menstrual bleeding
  • Bloating
  • Fatigue
  • Feeling sick, faint, or vomiting during periods
  • Pain in the lower back, abdomen or groin
  • Trouble getting pregnant
  • Difficulty participating in daily activities because of excessive pain, exhaustion, or weakness

Women are at a higher risk for endometriosis if:

  • They have never given birth
  • They have a family history of endometriosis
  • Started their periods at a young age
  • Have short menstrual cycles
  • Suffer long and heavy periods

If you think you may suffer these symptoms or are at risk, take the quiz here!

What are the treatment options?

There is, unfortunately, no known cure for endometriosis, and treatments only ease the pain. Understanding of your unique situation, which is helpful in creating a treatment plan that works best for you. When you talk to your healthcare provider, be specific about your symptoms. In addition to prescribed endometriosis treatment, many women use heating pads, eat certain foods or exercise to help ease symptoms.

What is SpeakENDO doing to help?

Sponsored by AbbVie, SpeakENDO is a campaign for women who want to learn more about endometriosis, those trying to find out what may be causing their symptoms and women already diagnosed with endometriosis. SpeakENDO offers information about endometriosis, true stories about women living with endometriosis and resources to help women have a better conversation with their healthcare provider. The goal at SpeakENDO is to educate the public and make people aware of how serious and debilitating this disease is. The website also provides information about symptoms and treatment options for women suffering the disease. There are a variety of resources on the site, from finding a gynecologist and preparing for your first appointment, to organizations and community resources near you that are there to help you cope.

Why is it important to SpeakENDO?

It’s important to speak up about your endometriosis symptoms. It can be hard to describe all of your symptoms at a doctor’s appointment, but your gynecologist might assume you’re not in pain if you don’t speak up. So, whether you’re currently on treatment or not, remember to speak up!

We need to educate the public about the effects on women because of endometriosis. The people closest to you can sometimes be the hardest to talk to. They might assume they know everything about you but speaking up about your endometriosis can lead to better understanding and compassion among your family and friends. Working together to educate others about endometriosis can help change the way the disease is understood.

How Can I Get Involved with SpeakENDO?

Educate, share and stay informed. Check out the resources available on SpeakENDO.com and learn what makes endometriosis so painful. Many people have still never heard of endometriosis. But, we can help them learn about it and what it's like to live with it by sharing resources on social media with the #SpeakENDO hashtag.

Stay informed! It’s easy and helps others! When you sign up for SpeakENDO emails, tips, and resources, a donation will be made to the Endometriosis Foundation of America.

Have endometriosis? Share your story to educate others!

Have your own endometriosis story? Just want to show your support? Create and post a video using social media with #SpeakENDO.

 

Learn more at SpeakENDO.com and join the conversation online by sharing #SpeakENDO.

Helpful Links on SpeakENDO.com:

  • Symptom Quiz: This short quiz can help women find out if they have symptoms that may be associated with endometriosis. This quiz is not meant to diagnose women with endometriosis, so women should talk to their doctor about their results.
  • Discussion Guide for Your Next Appointment: It can be hard to explain all of your symptoms. If you don't speak up, your doctor may assume you're not in pain. It only takes a few minutes to prepare for a productive conversation with your gynecologist. Answer a few questions to create a custom discussion guide to make the most out of your appointment.
  • Video Library: Interested in hearing how others SpeakENDO? Watch the videos to learn more about endometriosis and hear from women living with endometriosis.
  • Endometriosis Factsheet: Review the factsheet for some fast facts about endometriosis.
  • Endometriosis Organizations and Communities: Learn about other resources to help you stay connected and in the know about endometriosis.