THE LOW DOWN ON ENDOMETRIOSIS

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WHAT IS IT?

Endometriosis is a condition where the endometrium tissue that lines the inside of the uterus grows outside of the uterus. It can grow on neighboring organs like the anus and ovaries to, more rarely, anatomically distant relatives like the lungs and nasal cavity. #worldtraveler. When Endo grows outside of the uterus, our bodies are not thrilled.  Conservatively, 1 in 10 women have Endo, according to the Endometriosis Foundation. Non-menstruators can also have endometriosis, but these cases are even more understudied.

Unfortunately, no one knows why endometrial tissue grows outside of the uterus.

WHAT DOES IT FEEL LIKE?

Here’s the thing: the endometrium tissue doesn’t know it has runaway from home, so it continues to thicken and bleed during the cycle as if it were still in the uterus. That means, when EndoFolks have their periods, they are bleeding from wherever else endo tissue grows. Symptoms are unique, but grinding lower back pain, torrents of clotty menstrual blood, acute cramps, and the urgent need for a bathroom can certainly be features. Many people report having constant pain, unexpected bleeding between cycles, irregular periods, long periods, nosebleeds, and ovarian cysts. Each of these can be symptoms of other health issues concurrent to endometriosis. For example, endometriosis lesions can irritate and, essentially, encapsulate an ovary. Then, this ovary would react to this foreign tissue by creating a cyst to protect itself… which leads to more bleeding and pain. #ouch

HOW DO YOU KNOW IF YOU HAVE IT?

Endometriosis symptoms include painful periods, painful sex, painful pooping, infertility, irregular periods, gastrointestinal issues, bloating, and profuse bleeding.  The Center for Endometriosis Care has a useful, extensive and specific list here.

Endometriosis is commonly misdiagnosed.  It can take many people with Endo 3-10 years before a correct diagnosis is received (the average is 7.5 years from the onset of symptoms) since Endo masquerades as Irritable Bowel Syndrome, Polycystic Ovarian Syndrome, gastrointestinal issues, or hormone imbalances. While healthcare providers can suspect a diagnosis based on symptoms, the only surefire way to know if you have it is by laparoscopic surgery.

WHAT DO YOU DO IF YOU HAVE IT?

Once you receive a diagnosis from a care provider you trust, create a support team to assess your options and get talking! Work with gynecologists who specialize in Endometriosis, herbalists, acupuncturists, Traditional Chinese Medicine practitioners, nutritionists, and therapists to manage your symptoms and learn about various options. Treatment recommendations may vary from hormonal therapies such as birth control or Lupron Depot to turn off periods and manage their associated pain to ablation or excision surgeries with the goal of destroying the endometrium tissue. Results of these vary, but informational forums like Nancy’s Nook (the Facebook group not the lingerie store), are excellent resources for gathering information from peers. Remember to always do your research, ask all the questions and talk to practitioners with different perspectives when you can (e.g gyno that specializes in endo + acupuncturist that specializes in endo) to understand all your options, side effects etc. 

Since endometriosis is a chronic condition with no cure, lifestyle changes such as getting enough sleep, adhering to a diet that is abundant in whole foods, avoiding inflammatory substances such as caffeine and alcohol, and moving the body in a supportive, caring, and nurturing way are critical. There is no one endometriosis diet, but the general consensus is that eating anti-inflammatory foods like rolled oatmeal, leafy greens, sweet potatoes, and berries can’t hurt. Some folks find an improvement in symptoms by cutting out dairy, soy, and/or gluten. Every body is different.

EndoFolks have also shared that cannabis products have helped relieve some of the acute pain associated with their cycles. Endometriosis and marijuana are under-researched, so all we have are personal testimonies for now. (Editor’s note: we are not advocating that you break the law! Do your research and advocate for treatments that work well!)

Lastly, seeking social and emotional support is extremely important. Endometriosis can be isolating because it is underdiagnosed and many experience doubt about their pain from family and friends close to them.  Don’t suffer in silence! As with all things, let people know what you need and how they can support you. #youarenotalone

ADDITIONAL RESOURCES

Podcast on Endometriosis by CYCLES+SEX

How to Salvage Your Sex LIfe w/ Endo by CYCLES+SEX

SpeakEndo.com offers resources for more info and support groups  

Endometriosis.org offers some resources for support as well.

Endopaedia.info

 

Written by: Tallen Sloane, creative nonfiction writer who gushes flowers, folklore, and food. She runs EndoSomerville: An Endometriosis Support group outside of Boston.