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What it’s really like having Endometriosis

A lot of times people ask me what is like to have Endometriosis and I always find myself giving the medical definition because sometimes I just can’t find the words to explain it.


Endometriosis is so much more than the medical definition. It’s physical, emotional, and mental “pain.” 

Last night i had a terrible experience at one of the hospitals in my area. I won’t go into too much detail just the basics to get my point across.

I have been in major pain for a good week, well the past month but in the last week it has gotten worse and I have began to bleed this brown blood. So to be honest I was concerned because I’ve never dealt with a situation like this. I’ve never experienced this type of pain followed with this brown blood. I do have an appointment with a surgeon so I was trying to wait it out but last night I didn’t know what else to do. So I went to a local hospital in my area because for the most part I was concerned I was scared because it was something different from what I usually experience.

When I tell you the doctor or nurse practitioner not sure what she was, came in and totally dismissed me. She came in straight out talking about the opioid epidemic as if I was only in their for pain medicine. She began trying to explain to me that the ER is for emergencies and endometriosis is a chronic illness that I need to go to a pain management doctor for because it’s something I’ll be dealing with for the rest of my life.


OK CAPTIN OBVIOUS! Like I don’t know what Endometriosis is. She was completely rude and I have to say I have never experienced that kind of treatment. I was devastated. Because I went because I was scared something else may be wrong I wouldn’t have went if it was my normal endo pain. I have opioids at home, I didn’t need that hospitals pain medicine I need an examination which I have a right to.

That’s what Endometriosis is. Being totally dismissed when you are experiencing any kind of pain just because you have a chronic illness.

Endometriosis is feeling so depressed and wanting to give up because it feels like nothing you do is working.

Endometriosis is being accused of just wanting pain medicine. Literally like you are druggie just wanting drugs.

Endometriosis is people making you feel like this pain isn’t real. Like you are over reacting.

Endometriosis is having an online community that gives you more support than any health care professional ever will.  Endosisters- people that i am so happy to have even though I may have never even met them the support I get from you guys is everything.

Endometriosis is knowing more about the medical definition than your doctors do. Because you have to, because clearly it seems no one will do it for you.

Endometriosis is going through a ton of different doctors, a ton of different appointments, a ton of scans, and a ton of surgeries just to find some pain relief.

Endometriosis is using a heating pad so long that you burn yourself. Falling asleep with a heating pad just so you can fall asleep even though that’s totally not safe.

Endometriosis is putting on a happy face because the world does go on and some days you just have to smile and say you’re fine even when you are dying inside.

Endometriosis is a bloody mess. Bleeding, bleeding all the time and when people ask when you’re last normal period was you reply with uhh never.

Endometriosis is being asked on multiple occasions if you will be able to have children. Sigh. You have to just reply with I don’t know. I won’t know until I try. But the thought you get every single time someone brings it up makes you sick to your stomach.

Endometriosis is feeling like you can never have a normal relationship because who wants to be with someone who is this broken and has this many issues.

I could probably go on and on. Because Endometriosis is so much more than people will ever know. The medical definition describes pain and while that’s true there is so much more that accompanies that pain. This illness is something I wouldn’t wish on my worst enemy.

Xoxo A

12 Replies to “What it’s really like having Endometriosis”

  1. I love this post. The part about fertility killed me as I’ll be having my partial hysterectomy next month. I’m 18 and giving up my ability to have kids and I know it is the right decision for me, but I’m tired of explaining it to everyone who thinks they get a right to comment on my health.

    1. Oh wow you are 18? I’m almost 21 and trust me I have thought about it and of course had backlash from everyone thinking they know what’s best for me.

      1. I gave up on what others think

        1. That’s the best thing to do. I’m here if you need just shoot me an email sis 💛

  2. Wow, unbelievable! Can’t say I’m totally surprised at the reaction given my own experiences, but she basically accused you of being a drug addict – so inappropriate. You were there because you had concerning and new symptoms which you were well within your right to do. It’s even more disheartening that it was a female dr too. The lack of compassion is honestly sad. How many other people has she shamed and turned away that needed care?

    1. To be honest this was my first horrible experience as such. I’m truly devastated as I am from Louisiana and I think our drug epidemic with our young is concerning. But as I am crying in pain she kept telling me about the opioid epidemic like I have opioids at home I didn’t come here for the pain medicine I came for an examination. I just left my dad was with me and of course backed me up. But before walking out she asked me if I wanted a shot of toroidal me being oblivious to drugs I asked her simply well what is that? She exclaimed it was not a narcotic.. after that I had enough and stormed out. Something has got to change.. just because a person has a chronic illness does that mean they aren’t allowed to have any other illness. Appendix? Anything? Good thing it wasn’t my appendix because I was not examined at all. Just devastating.

      1. I’ve had several bad experiences to the point where I called the er before going when I actually did have appendicitis. I was afraid I would get another shrug and be sent on my way. Luckily, they recognized by my description over the phone that I did need to come in. Care throughout the U.S. is so hit and miss. It seems to change from dr to dr and state to state. I received much better care in Oregon than I ever did in New Mexico. Before we moved to Idaho I did massive amounts of research to make sure I could get competent care here. I’m sorry you had such a terrible experience.

        1. The UK seems to be much more aware and knowledgeable about Endometriosis which completely sucks.. but after school I do plan on moving somewhere that has better care.. sadly Louisiana doctors are very unaware. And me being a student I have a limited insurance so a lot of the “good” doctors do not take my insurance and I for sure don’t have the financial means to pay out of pocket. Thanks so much for your support talking to someone who actually understands is so refreshing 🙂

  3. I’m so sorry for the treatment you received! To be honest I’m very glad for you that it was your first. I also certainly hope it’s your last. I’m 32 and what you described has been my norm. I’ve honestly given up on ERs. The last doctor I encountered kept blaming my bowels and refused to dull my incredible pain. I straight up asked her if she is at all familiar with Endo. Her response: “No” with a decisive head shake. I knew more about my body than this trained doctor but got no help because it’s her stage. Something I’ve come to terms with is that there is always a surprise with Endo. So much love to you during your journey.

    1. Same to you love. I completely understand what you mean by knowing more than your doctor. I’ve been there. I think all of our journeys really do come together in such a beautiful way.. I always say I couldn’t make it through with you all. But I too have given up on ERs I’ve been in excruciating pain since Monday night and I am not even going to attempt it. One day, one day we shall never have to get the response of what is Endometriosis? Xxxxx 💛

  4. I want pain medicine. I don’t want the pain. If the doctors can’t stop the endo then they need to stop the pain right.

    1. You would think, right? *take Advil for the pain haha! & if we ask for pain meds we are addicts.. they system is F’ed up for sure.

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