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What shouldn't you say to someone with endometriosis?

Sometimes people mean well and say things without really thinking them through. Other times, it can be ignorance of what life with endometriosis is really like.

What has someone said to you that you shouldn't say to someone with endometriosis?

  1. They should not assume you had children. It cuts like a knife to say I couldn’t have them. They shouldn’t be bragging a lot about being parents or a mom around your husband. Women who do not have these problems can be so cruel. People should not say you are hyping your symptoms when they have zero idea what it is like to have cancer level chronic pain since age 12 yo and being down in bed with it. I had inflammatory bowel disease too. Some say maybe you should retire because I find myself in the bathroom at work. It’s so healthy to work and keep pushing yourself. And, if you have high satisfaction scores, productivity, and still contributing with new creative ideas than people should keep their opinions to themselves. I had to cover four months of maternity leave for so many women and attend baby showers and all. Then cover their breast pumping breaks for anyone to be put out that you have to have surgery here and there and maybe be in the bathroom a bit, it’s so appalling. I had some of the highest numbers and tons of thank you letters everything. It’s healthy to work and I will keep working as long as I can.

    1. Thank you for sharing your perspective here. My heart broke reading what you said about "It cuts like a knife to say I couldn’t have them." Endometriosis can take so much sometimes. I'm so sorry that you were exposed to any insensitivities from other women. That's something that I hate to hear but also am not terribly surprised about, unfortunately. I think people sometimes forget to take a breath and to not assume anything about anyone because we never know what someone is going through. I'm sending you so much love and good vibes this afternoon, and again, thank you for sharing your perspective. 💛 Kayleigh, team

  2. I have been told that sex will cure my Endometriosis. I was told to have a baby right away because I will be infertile due to the Endo and also I have been told by a doctor to just go ahead and get a hysterectomy since it hurts so much. I actually started to feel like I did something wrong and it's my fault I'm going through this. I was diagnosed in 2020 and am still evolving and learning from all of this but I just remember that everything I do is my decision and this site has been a real eye opener and a lot support during my journey.

    1. I am so sorry you have been told these things 🙁 it is so angering and frustrating. I have lost count how many times both doctors and people have told me to 'just get pregnant' that it would cure my endometriosis. You definitely have not done anything wrong dear warrior. You didn't do this to yourself or wish for this. I got my diagnosis in 2017, so it's only been a few years, but, I am still learning every single day too. It's a journey for sure. And I hate knowing other people are on it suffering as well, but at the same time it is nice to have others who understand too. Just know, we are here for you. We understand. And you are right, it is your decision at the end of the day. You get to decide what is right or wrong for you, no one else <3 Sending you the biggest hugs I can. -Kimberli (advocate)

    2. Thank you for all of the advice and support!

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