Endometriosis Awareness Month

March is Endometriosis Awareness Month, and as a chronic illness specialist and patient advocate, I believe it is important to talk about conditions that affect many, especially conditions that are rather common, yet not often discussed.

I have been humbled by my experience meeting the brave and resilient women who are living with endometriosis. Endometriosis is a very painful condition- so painful, in fact, that the National Institute of Health rated it within the top 20 most painful conditions a person can experience, yet it is not often discussed, takes a longer time than most diseases to be diagnosed, and is not well known. Though it is not often discussed, endometriosis effects 176 million women worldwide- roughly, 1 in 10 women.

Symptoms and patient experience

Endometriosis is a condition in which the uterine lining grows outside of the uterus and onto other parts of the body, including but not limited to- the bladder, colon, intestines, stomach, lungs, and other reproductive organs. To give a picture of what endometriosis might feel like, women describe it, especially during their menstrual cycle, to feel as if they are in labor (some describe it as worse than labor if they have delivered a child), but this pain is not limited to the menstrual cycle. Many women experience pain on a daily basis in their pelvic and stomach region, varying in intensity from experiencing pain with exercise and movement, to experiencing pain when eating, urinating, or constant, unchanged by a sitting or laying position or over the counter medication. It might be hard to understand what endometriosis feels like, or why it feels this way. My best explanation is this:

During a woman’s menstrual cycle, when she has endometriosis, she is essentially experiencing internal bleeding. She is not only bleeding from her uterus, as is expected, but from anywhere else endometrial tissue can be found, including the rectum, bladder, abdomen, and other reproductive organs. This bleeding and build- up of tissue can lead to adhesions and scar tissue, which essentially can be compared to when someone has surgery and may be in constant pain while the scar tissue heals.

Implications of endometriosis on mental health

Naturally, as with any chronic pain condition, women with endometriosis can experience anxiety and depression due to constant pain, lack of treatment options, the possibility of infertility, and the shame and stigma that comes with women’s health conditions, in particular when related to menstruation.

The hope is that one day, the shame and stigma will be a thing of the past, and women will be listened to in a way that prevents them from having to experience years of pain before a diagnosis.

If you are or someone you love are experiencing anxiety or depression due to endometriosis or a chronic pain condition, here are some things that can help:

1) Allow the sadness and grief to be felt

When experiencing a chronic pain condition, one can feel hopeless, and they may long for how their life looked and felt before this condition. They may be mourning the loss of dreams, such as the ability to work full time, have children, or travel. It is okay to feel these emotions- In fact, it is important to feel them. The loss can be great and vast, and it is important it is felt and acknowledged.

2) Have a support team

Having a support team can mean many things. It is important to have medical professionals and mental health professionals in your corner who understand and respect your condition, but it’s also important to have a team to turn to during the hard days. Your support team can include close friends, but if you feel they do not necessarily understand, joining a support group, in person or online, can be helpful, and even the company of a furry friend can feel supportive and beneficial.

Sometimes, the people in your corner might not know how to support you. It can be helpful for you to communicate with them when you are having a bad pain day and what that might look like. Texting a friend to say, “I am thinking of you, I am having a bad pain day but look forward to catching up when thing get better” can bridge the gap of isolation that can occur with chronic illness. If your friend asks how they can help- tell them, even if it means asking them to remind you that things will get better.

3) Create a “bad day” kit, or, to put a more positive spin on it, a “cozy kit” as I like to call it

Different people will respond to coping mechanisms and tools in different ways, so when you find something that works for you, be sure to stock up and keep it near- by. For example, if you find that heating pads help you, consider creating a cozy kit that includes your heating pad, and other things that help you that you also enjoy, such as an essential oil diffuser, adult coloring books, knitting supplies, and your favorite snacks and helpful medications. You can even decorate this box with photos (you can get some colorful storage boxes at the dollar store) or inspirational quotes. During painful times, you can pull out your cozy kit while playing a favorite podcast or television show, and consider it your “self -care” time or “catch up” time. Though it can be hard, phrasing this time as time to complete projects (such as art, knitting, blogging, reading), rest and rejuvenate (baths, essential oil diffusers, heating pads, sleeping with comfortable clothing) might feel more intentional. While this pain is serious and all consuming, and these suggestions don’t by any means intend to downplay the severity, thinking of this time as a time of self-care can help you to feel you have choices, and can see this as a time to rest, pause, and engage in the self-love and attention that you so deserve.

4) Remember who you are/Keep your identity

Endometriosis is an incredibly painful condition, and, when in the midst of pain, it can cause a person to feel hopeless. Know that you are not your condition- even if on some days the pain is all you can feel or think about. Try to make a list of all of the things that make you who you are, not including your condition, and read it on the tough days. You can even ask your friend and family members to list what they think your strengths are and what they like about you (you can do the same forthem) and make it a feel-good project for yourself and your loved ones.

Though it is hard, remember there is hope, and you are by no means alone. This condition effects your neighbor, friend, or coworker, and though pain can be incredibly isolating, you are not alone in your pain, and likely, someone you don’t even know, another endometriosis sister, is wishing you well, praying for a cure for all who have this condition, and thinking of all those effected. These thoughts, when they are put out into the world, create a common thread that brings all who suffer together. You are not alone. You deserve better days. You are seen. And, I wish you wellness, peace, and healing always.