If you have a loved one who suffers from endometriosis, then you must be aware of how difficult it can be for them to live with this condition. I created this guide to help you learn more about the illness and how you can best help the loved one in your life.
Endometriosis can cause a lot of pain, and in some cases, it may interfere with normal activities like working or going out. However, there are ways that you can help them manage their symptoms better so that they don’t feel as much pain.
Learn what endometriosis is
If you’re in the position of supporting someone with endometriosis, it might be helpful to get a little more familiar with the condition. You can read our ‘start here‘ to begin with, but here’s what you need to know:
What is endometriosis?
Endometriosis is an often painful and debilitating condition that occurs when tissue similar to the lining of the uterus (called “endometrium”) is found outside of the uterus. These misplaced tissues can attach themselves to ovaries, fallopian tubes, and areas of a pelvis like the bladder or bowel. The cells may bleed during menstruation, which causes inflammation and pain for people who have this disease.
How is it diagnosed?
Endometriosis is often misdiagnosed, and it takes often years of living with extreme pain before patients get a diagnosis. Diagnosing endometriosis can be difficult because there are no specific tests for it—instead, doctors will take a medical history from patients who report symptoms like pain during sex or bleeding between periods. The doctor will also perform an internal exam on the patient at different times throughout your menstrual cycle.
They also recommend doing a few imaging tests such as MRIs or ultrasounds to see how far the endometriosis has infiltrated in your body (as it can also be found in other areas than just the uturus, like in-between bowel, lungs etc.).
Educate yourself as much as possible
The most important thing you can do to help someone with endometriosis is educate yourself on the topic. It’s easy to scour the internet in search of information, but there are a few key places where you can find reliable and useful info:
- The Endometriosis Foundation of America (EFA) has an extensive list of resources that cover everything from symptoms and treatment options to community groups and research updates.
- Endometriosis UK offers a similar set of resources.
- The National Institute of Health has some great articles explaining what endometriosis is and how it’s treated, including this one about non-surgical treatments for endo pain management (written in layman’s terms).
- And we have heaps of books about endometriosis in our shop. If you really want to support a loved one that’s just diagnosed with endometriosis, make sure you get some books, maybe even surprise them with a more fun endometriosis journal or curated endometriosis cookbooks. The informational books shouldn’t be used as a surprise, it can be quite overwhelming when you got your first diagnose and too stressful to start reading about it. Just get the informational books for yourself and let your loved one know you purchased them and when they’re ready they’re welcome to read the books too.
Let them know you understand that this is a chronic condition
Endometriosis is a chronic condition that affects over 5 million people in the United States, and 176 million globally. 1 in 10 women have endometriosis (but often don’t get the diagnosis). The disease affects women of reproductive age and can lead to infertility, pain during sex and/or your period, and other health complications.
It is estimated that it takes an average of 8-10 years for a woman to receive proper diagnosis for endometriosis—and an additional 2 years on average before she will see improvement in her symptoms. Even after diagnosis and treatment, some women may still experience pain or fertility issues (read everything about fertility & endometriosis here) due to scarring from previous surgeries or other complications related to endometriosis.
Keep the focus on them and not the endometriosis
While you may be inspired to help in specific ways, remember that the person with endometriosis is the one who will determine what’s most helpful.
Ask them what they need from you and how you can help. Listen carefully: the answer may surprise you! Sometimes people find it hard to articulate their needs at first, so give them time and space for self-reflection. Here are some suggestions:
- Keep the focus on them and not just on their illness or diagnosis—you want to help them, not treat them like an object of pity or charity;
- Focus on their strengths and abilities—this will make all parties feel good about themselves;
- Focus on their interests and hobbies—it’s important that they feel like they’re continuing with life as normal as possible;
- Remember that people with chronic illnesses need support from others too!
Do not blame them for their symptoms
When you see someone with endometriosis, it can be tempting to blame them for the pain they experience. You might think they’re not taking care of themselves properly or that they’re just being over-sensitive. But remember that endometriosis is a chronic condition that causes inflammation in the body and creates a lot of pain as a result. Even if you can’t see anything on the outside look of someone.
It’s also important to understand that these are not symptoms any woman chooses. The physical symptoms are painful and embarrassing, while having an invisible illness can make it difficult to explain your situation to others or ask for help when you need it most.
These experiences often lead to other issues like depression, anxiety and self-esteem problems — so try not only empathise with how difficult your loved one’s life has become but also offer some support by offering practical advice on managing their symptoms (such as making sure they get enough sleep), listening if there’s anything weighing heavily on their mind, helping them access specialist services if needed etc!
Be aware that the disease can affect many parts of the body
It’s also important to be aware that endometriosis can affect many parts of the body, including the bladder and bowel. This means that a person with endometriosis may experience symptoms not just in their pelvis but also in their lower abdomen or digestive system.
While one person with endo might find they have very mild symptoms while another has severe pain or bleeding, it’s still important to remember that each person is different. Symptoms often vary in intensity over time, too.
Be flexible about plans with your partner
If your partner is going through a flare, they might be feeling very tired and in pain. They may not have the energy to ful-fill plans that you have made together. Take it easy on them if they don’t feel like going out or doing something fun. It’s important to remember that endometriosis symptoms can vary from day-to-day, so try not to get upset if they cancel plans at the last minute because of their pain levels at that time.
- Don’t expect your partner to do things that they are unable to do due to their condition
For example: If your partner has a bad backache from taking some medication but still wants to go out for dinner with you, askher how she feels about it before making an assumption on what her answer will be (e.g., “Do you want me to make reservations somewhere else instead?”). Try to be flexible in a whole. If you want to read more about dating & endometriosis or topics like sex head over to love + dating & endometriosis.
Help them take care of their health
Now that you’ve got a better understanding of endometriosis and its symptoms, it’s time to learn how to help someone with the condition. You can’t magically cure endometriosis, but there are plenty of ways you can support your loved ones with the disease. Here are some steps you can take:
- Make sure they’re eating well and getting enough sleep – It’s especially important for people with chronic illness like this one, who may be dealing with fatigue from all their symptoms and limited energy from daily pain management techniques.
- Help them out with their daily tasks – This includes things like doing laundry or cleaning house so that they don’t have to exert themselves too much (which could put them at risk for further injury). If there are chores around the house that need doing, ask if you can take care of them so your friend doesn’t feel like she needs to do everything herself!
- Help them manage medication – Having someone else remind her when it’s time for her next dose will make life easier! Also make sure you head over to our managing endometriosis pain section and our holistic guide to endometriosis to see what items can help besides taking medication.
Remember that different things work for different people, so try not to be judgmental or critical
Remember that different things work for different people, so try not to be judgmental or critical. Try to be supportive, understanding and patient. Try to be flexible and encouraging when someone isn’t doing what you think they should be doing. And above all else: try to be empathetic and compassionate. The key is communication. Endometriosis is different for everybody and just asking how you can support a loved one is often what they just need.
Listen to your loved one and ask questions if you don’t understand something
- Listen to what your partner is saying.
- Ask questions if you don’t understand something, or if you’re just curious.
- Don’t be judgmental—your loved one has enough of that going on in their own mind!
- Don’t be critical of how they’re feeling, especially when it comes to pain management decisions like whether or not to take painkillers (even though these medications can have side effects).
- Don’t blame them for anything related to endo—it’s not their fault! Endometriosis is still an unknown condition with no cure; it affects every woman differently, even if they all have the same diagnosis. Some women are more susceptible than others; some experience symptoms worse than others; and some may never experience symptoms at all! This disease is also likely exacerbated by stress and lifestyle choices such as diet and exercise habits (or lack thereof).
You can show your support and help someone who has endometriosis
- Be there for them. You don’t have to know what the right thing is to say or do, but you can be sure that a supportive friend or family member is always welcome and appreciated.
- Be supportive. The best way to show people with endometriosis that you care about them is by being a good listener, rather than trying to fix things or give advice (which may not even be helpful).
- Don’t judge them! It’s easy to feel frustrated when someone close to us goes through something difficult—especially if it seems like they’re making “bad” choices regarding their health—but remember that everyone has different needs and priorities at any given time in their lives; try not to judge others based on your own judgments of yourself if these are different from theirs!
- Don’t blame them for their pain/inability/etc., because this will only make both of you feel worse about each other as well as yourselves overall: instead just acknowledge how hard it must be without feeling like someone else’s fault too much stress caused more painful symptoms before moving on from there together towards healing together.”
We understand that having a loved one with endometriosis can be tough. And we want to thank you for being here, learning about how you too can support your partner through this. Taking the time to learn about their condition means so much to them. We hope that these tips have been helpful and have given you some ideas on what you could do next time something comes up in your relationship that relates to their condition. Remember that sometimes just being there is enough!