If someone you care about has endometriosis and you want to better understand what they’re going through and be an endometriosis ally, you’re in the right place. This article is also for you if you are someone with endometriosis and wondering how to explain endometriosis pain so your partner and friends can be more supportive!
The Importance of Allyship in the Endometriosis Community
Endometriosis is a chronic and painful condition that affects millions of menstruators worldwide. Despite how common it is, endometriosis is still not widely understood and often goes undiagnosed. As a result, many people with this condition feel isolated and unsupported, which can compound stress and other mental health symptoms already associated with this condition. Allies play a crucial role in eliminating the stigma and isolation that people with endometriosis often experience.
Understanding Endometriosis: A Guide for Allies
Endometriosis is a common health issue in women and people born with a uterus in which tissue similar to the inner lining of the uterus (endometrium) grows in parts of the body where it’s not supposed to, such as on the ovaries, fallopian tubes, and bladder.
This endometrium-like tissue responds to reproductive hormones like estrogen just as it would in the uterus – it grows and thickens. The problem is that when it’s time for the tissue to shed and bleed as it does during menstruation in the uterus, there is nowhere for it to go. This can cause inflammation and scar tissue that manifest as chronic pelvic pain and often infertility.
Symptoms of Endometriosis
The signs of endometriosis can vary, and some people may not experience symptoms at all. Possible symptoms include chronic pelvic pain, heavy menstrual bleeding, infertility, pain during sex, painful bowel movements, extremely painful period cramps, lower back pain, and fatigue. Because these symptoms are shared with other reproductive health issues, endometriosis diagnosis is difficult and requires an invasive procedure to investigate the tissue.
Endometriosis Treatment Options
There is not yet a cure for endometriosis, but the symptoms can be managed to improve the quality of life. The conservative treatment options include over-the-counter pain medications and hormone therapy to regulate the hormones that feed the tissue growth. Some types of birth control can help prevent the buildup of endometrium-like tissue.
If none of the conservative options are successful, the next option is to try surgery. For menstruators who wish to get pregnant in the future, a minimally invasive surgery known as laparoscopy is used to find, diagnose, and remove abnormal endometrium-like tissue. The last resort for relief from severe pain is a hysterectomy, which is the complete surgical removal of the uterus.
The Benefits of Being an Endometriosis Ally
It can be hard to sit on the sidelines and watch someone you care about suffer alone. Intentionally choosing to be an endometriosis ally is a rewarding experience both for the person who needs support and for the ally. Here are some benefits of being an endometriosis ally.
Being an Endometriosis Ally Helps Strengthen Your Relationships
It’s easy to feel powerless in the face of a chronic medical condition with no cure, but you don’t need to know how to help endometriosis pain to be a good ally. Nothing makes a relationship stronger than open communication. Creating a space in which both people feel safe sharing both positive and negative feelings, asking questions, and just being together without judgment can bring you closer.
Being an Endometriosis Ally Improves Empathy and Understanding
It’s hard to understand what someone is going through if you don’t make an effort to put yourself in their shoes. By building a shared vocabulary around endometriosis symptoms and being a true ally, you will better understand what the person with endometriosis is experiencing. And that’s a two-way street; as someone with endometriosis, it’s important to understand how your condition impacts those closest to you.
Being an Endometriosis Ally Nurtures a More Supportive Community
By becoming an endometriosis ally, you will know what helps endometriosis pain and be able to advocate for those with endometriosis more easily, which will benefit the larger community. This in turn will encourage others to become allies and help even more menstruators feel supported.
Supporting Menstruators With Endometriosis: How to be an Effective Endometriosis Ally
As a partner, family member, or coworker of someone living with endometriosis, there are a few things you should know about how to be a good endometriosis ally.
The way one person experiences endometriosis can be vastly different from another. No matter what you’ve read, remember that the person living with endometriosis is the expert in their own endometriosis experience. Just be present, talk less, and listen more.
Like any relationship, that of an endometriosis ally and a person living with endo may need a breather from time to time. Remember that your job as an ally is to provide support when needed rather than being the one leading the narrative.
Endometriosis has serious psychological and physical impacts. While you can provide support in the form of empathy, advocacy, and company, there may be times when you need to encourage your friend or loved one to get professional help. Be prepared for both mental health and physical challenges by creating a plan together in case symptoms worsen.
There are a number of resources related to endometriosis to turn to for support, including:
- Endometriosis Foundation of America
- The Endometriosis Network Canada
- The Center for Endometriosis Care
- Endoville (an advocacy group for those with endometriosis, adenomyosis or PCOS and those who support them)
Part of being an endometriosis ally is advocating for menstruators living with endometriosis. Stay up to date on the latest endometriosis research and have some helpful resources bookmarked so you can easily share information about endometriosis with others, whether that’s an employer, a friend, or a potential new ally.
Endometriosis can have devastating impacts on physical and emotional health and severely reduce the quality of life. But with the support of endometriosis allies, menstruators can overcome many of the challenges presented by this condition and live happy, productive lives.
Let’s educate ourselves and advocate for people with endometriosis to create a more inclusive and supportive world for menstruators everywhere!
Editor: Lanna Last & Thomas Sauls
Scientifically Reviewed By: Mali Meibod