8 Things That People With Endometriosis Want You To Know

Here are 8 things that people with Endometriosis want you to know

1. It is not just “bad” cramps
Endometriosis is tissue that grows outside of your uterus and bleeds monthly with menstruation. So along with internal bleeding that blood and tissue can turn into lesions and wrap around or tie together organs. Endo is not just bad cramps, it’s bad cramps on steroids. There’s sometimes where it feels like (for me) extreme cramps and sometimes it’s cramps with bloating. The bloating is the worst because it’s not just bloating.. it feels like a balloon surrounded by knives is filling up and trying to bust out of your gut. It. Is. HORRIBLE!

2. It isn’t uncommon but is commonly misdiagnosed for years!
The average span of getting an actual diagnosis of Endometriosis is around 7 years. 7 years of suffering and second-guessing yourself and visit after visit to different doctors.

3.There is a possibility of infertility.
Most studies show that 30-40 percent of patients with Endometriosis struggle with infertility. Endometriosis is the top third reason for infertility. For some reason, I had it in my head that it would be hard for me to conceive so even before I was diagnosed with Endometriosis I had told my partner it could be very hard for us to have a baby. We were blessed (with help of fertility treatment) with a wonderful little girl but not everyone is as lucky.

4.They do not know what causes Endometriosis but it is suspected to be linked to genetics.

5. There is also NO cure for Endometriosis.
Often patients (including myself) are told that pregnancy or a hysterectomy will cure Endo. This isn’t true. Pregnancy can relieve some symptoms for a time being but they may come back after you have the baby (mine did). Also isn’t it really insensitive to say to someone with Endo that the cure is pregnancy but they might not be able to get pregnant?

A hysterectomy isn’t a cure either because if the endo tissue is growing elsewhere it’s going to continue to do its thing. And just like it magically appeared the first time it may do it again.

6. We nap a lot
People often joke about how often people with pain from Endo take naps. "I wish I could take a nap every day (haha)!" It really isn’t funny or a laughing matter though. The immense pain takes so much out of us that there doesn’t feel like there is any other option. Sleeping doesn’t come easy either if you are in a lot of pain. Sometimes we just lay there because we just cannot do anything else.

7. We aren’t choosing to miss out on fun activities and social gatherings
We aren’t just being flakes. I know it can be annoying when we have to cancel our plans with you because we’re not feeling well. It may seem like it happens too often to be real, but the pain of endometriosis can be debilitating. We want to do fun things and hang out with you, but there are times when getting dressed seems like an impossible task. *

8. It’s something that women deal with for a long time
Yes, there are some things, for some people, that help with symptoms. Sometimes surgery will be the cure-all for a person. Every person is different and Endo effects different people in different ways. What may help one person, might not help the other person. Tread carefully when suggesting new ‘cures’ to people with Endo. We know our bodies, trust us if we say it hasn’t or won’t work.
Because this can be a long time or forever deal we may not know how to answer the question “are you feeling better yet?” The sad truth is, we may never feel better. Try something like "how are you doing today?" instead.



Do you have Endometriosis? What are some things you want people to know? What are some things that you hate that are said to you? Let me know below and help us spread awareness!