What Do You Wish Your Friends and Family Knew About Endometriosis?

Endometriosis is a difficult disorder to have to deal with – physically and emotionally. If you have a loved one that has been diagnosed with endo – they need you now more than ever. But even if you’re looking for ways to support them, sometimes it can be hard to know where to start.

For Endometriosis Awareness Month, we’ve decided to reach out to our network of endo sisters for their input. Who better to lend their expert advice on endo support than women and girls that are currently battling it? We’ll be breaking down their answers into a series of blog posts designed to help the loved ones and caretakers of those with endometriosis. Together, we can make a difference in the lives and outlook for those affected by this painful disorder. Today, we’re tackling the question: What do you wish your friends and family knew about endometriosis? Keep reading for tons of valuable insight from these brave endo warriors – and check back soon as we dive into more of their responses in future blog posts.

“Endometriosis is a complex and difficult disease in which tissue similar to but not the same as the uterine lining is found throughout the pelvis and body. It is not as simple as bad cramps or heavy periods. Some days I have horrible pain. Some days I do not have so much pain. I accomplish a lot given the physical circumstances. I run a business. I care for my elderly parents. I am a National Tennis Champion and I help others with the disease every day. I wish my friends and family would realize that endometriosis leaves its imprint on your pelvis and your heart long after the disease is excised. It takes a multidisciplinary approach to endometriosis. I am better but I am by no means “fixed” and it is hard every single day–even on the good days.” -Dr. Sallie Sarrel

“Endometriosis is such a hidden disease, both in the sense of the individual and of the condition itself. Despite its incidence, very few people can tell you any facts about endometriosis. Compare this to asthma or diabetes, and the difference is clear. I would love to see a day where friends and family would know what endometriosis is, know the impact it has on its sufferers and for them to help us act as advocates for this disease.” – Kathleen King

“I wish my friends and family knew that endometriosis can be incredibly challenging to treat. Endometriosis can be a very complex disease to manage which is only compounded by diagnostic delays, delays in getting quality surgical care, and concurrent diseases that patients sometimes struggle with. I wish my family and friends knew that there isn’t an easy fix to make it all better. There is no cure.” – Casey Berna, Endometriosis Counselor and Patient Advocate

“That the best way to comfort and help me is to continue to be supportive and to continue to validate my pain. “ – Kate Schneider

“If you think you’re tired of hearing me complain about pain, imagine how tired I am of hearing myself complain about pain. A lot of women with endometriosis say that they would never wish this disease on their worst enemy. I wish my friends and family could experience endo for just one day, so they could realize how strong we women with endometriosis are.” – Melissa Tison

“It’s not just “bad cramps.” It’s not me being overdramatic. It is pain throughout my body, radiating from a central spot, and there are days that the pain of the cramps are equivalent to being in labor. Headaches, sweating, nausea, purely from the pain. It’s also not curable, and ibuprofen – even prescription meds – can only do so much.” – Lydia Bowers

“I wish my friends and family knew how frustrating endometriosis is. More than understanding what the disease is physically, I wish they understood the emotional side of it and that it really affects the mind as much as the body.” – Kate Priest

“So many things! In a nutshell though, I wish they knew that it can be more painful than natural childbirth (it was for me) – and that the pain can be 24/7. I wish they knew it is more than just “bad periods” and that it is absolutely not normal to have debilitating pelvic pain – either during your period or other times of the month. I also wish they knew that there is definitely hope – expert excision with an advanced surgeon can be literally life changing and freeing from endometriosis symptoms, often with long term results and with retention – and even improvement of fertility.” – Rebecca Gibson

“I wish that my family and friends realized that I didn’t do anything wrong to get it. It is a hormone imbalance, not a curse.” – Dr Allegra Hart

As we spoke with each of these unique women, we were amazed by their wide ranging answers. But more than their differences – we found ourselves identifying common threads. Endometriosis affects women differently, but many commonalities can be found in their need for support. If you have a friend or loved one who has been diagnosed with endo: validate their pain, put yourself in their shoes, offer to lend a hand or a caring ear, and stay by their side. Every bit of support can help make the difference for a brighter future. Tara and the BPP team

Hey Endo Sisters and supporters! When you shop Be Prepared Period, you can feel good knowing you’re supporting a business that supports Endometriosis research. Shop using the link below, and we’ll donate 5% of proceeds to the Endometriosis Research Center. This offer applies all year round – so you can give back while you order your monthly supplies.

Psst! Think you might have Endometriosis? Our free guide helps to separate fact from fiction. Click below to download it!