March is Endometriosis Awareness Month. But what is endometriosis[en-doh-mee-tree-oh-sis]?
This surprisingly common disease is unfortunately shrouded in a whole lot of mystery. When I was first diagnosed with endometriosis, I would have loved a 10-point blog post summary of my illness. It would’ve been great to point friends and family members to a resource with at least some basic info about my disease. So here is the blog post that I wish I’d read when I was first diagnosed with endo almost a year and a half ago. These 10 basic facts are just the beginning of understanding endometriosis, but learning even some basics about the disease is a great way to show compassion to a loved one who is an endo warrior.
- Endometriosis is tissue similar to the lining of the uterus that is found outside the uterus, on other parts of the body. This rogue tissue creates lesions that become inflamed, bleed, and break down causing pain, scar tissue, and inflammation. Even though it’s mostly found in the pelvis, it can also be found on odd places like the bladder, bowels, appendix, diaphragm, and even lungs. ¹
2. Endometriosis affects an estimated 1 in 10 women, which is approximately 176 million women worldwide. ²
3. The average time between symptom onset and diagnosis is 10 YEARS. ¹ That is 10 years too long, friends.
4. There is NO known CURE and, although endometriosis can be treated effectively with drugs, most treatments are not suitable for long-term use due to side-effects. ²
5. Symptoms can range from “killer cramps” to heavy periods, nausea, vomiting, diarrhea, constipation, pain with urinating, pain during sex, fatigue, brain fog, and infertility. Some women may experience all of these symptoms, while some may experience no symptoms at all. ¹ If your period pain causes you to miss work or school and pain meds don’t provide relief, that is NOT normal. Find a doctor who will listen to you and start looking for answers.
6.Doctors are unsure about what actually causes endometriosis. Research is ongoing and it is thought that there is likely some type of link to genetics. ³ In 2015, endometriosis received just $7M in research funding, which is around $0.92 per woman effected. Essentially, the research surrounding endometriosis is grossly underfunded and little progress has been made in the last few decades.
7. The only way to definitively diagnose endometriosis is by surgery, usually laparoscopy. ª
8. The most common treatments are hormonal treatments (oral contraceptives), but these really only mask the symptoms of endometriosis. The gold standard in care is excision surgery. ¹
9. This video is a great overview of endometriosis and some of the ways that we can fight the disease. https://vimeo.com/20910143
10. Finally, there is hope for women with endometriosis! The pain can be overwhelming and the cost is high, but there is a community of women around the world who understand the struggle. Women with endometriosis are warriors. We don’t want your pity, but we do want to bring awareness to this disease and the pain that goes along with it.
*Bonus*: This is a great infographic about endometriosis from http://www.endographics.org