, 22 tweets, 11 min read Read on Twitter
So March is #EndometriosisAwarenessMonth and since, right now, I am in the grips of an #endometriosis flare-up I'm gonna tell you all what having this disease is really like.
First of all, to put it simply, #endometriosis is when cells that are meant to grow inside your uterus grow on other parts of your body. Any parts! The cells can grow on your bowels, your stomach, liver, intestines, even your lungs, eyes, or brain. Yeah! It's terrifying!
And because these cells are supposed to be part of your uterine lining, they're basically programmed to shed every month. So like your uterine lining sheds when an egg isn't implanted & hence you have a period. These cells shed in the same way but....not inside your uterus
So imagine your intestine having a period. Or your stomach. OR YOUR BRAIN.
Anyway, what this nightmare scenario produces is a body that self-destructs every month. When I am on my period I have all the normal period things but not just in my uterus. I have them in my bowels & intestines. And on my sciatic nerve. And probably other places
I was diagnosed with #endometriosis in 2012. The only way to get diagnosed, btw, is via surgery. I was hospitalized for a potential ectopic pregnancy but when the doctor went in he found lessions, adhesions, & scar tissue through most of my pelvic region
So what does this feel like?

First of all, #endometriosis is different in everyone who experiences it because the cells grow in different places. So my experience won't be the same as someone else's. This is why some ppl have endo & don't have a lot of pain while others...do
For me, my #endometriosis manifests via symptoms you'd associate with Irritable Bowel Disorders. Which. Gross!
My #Endometriosis also causes extreme, debilitating nausea, so bad I can't move. Sometimes, I prefer the pain over the nausea tbh, which shows you how awful it is
Some months, my #endometriosis causes intense migraines!
Sometimes, my #endometriosis causes hives & other awful skin issues
Always, my #endometriosis causes horrible chronic fatigue. It gets so bad sometimes it's hard for me to walk across the street without feeling like I'm going to faint. A lot of times, I do faint!
My #endometriosis also causes dizzyness/lightheadedness*

*although this also might be due to other chronic illnesses I deal with but I'm not sure so I'm including it
Because of #endometriosis I get cysts on my ovaries & Fallopian tubes. When these cysts burst the pain is.......incredibly, horribly bad. Beyond the usual pain I suffer, which sometimes makes me vomit it's so bad. So it's vomit-causing pain to THE NTH DEGREE
My #endometriosis also impacts my sciatic nerve, which causes more pain! Sciatic nerve pain, for those lucky enough not to experience it, runs from your lower back to your legs and can be unbearable

-painful rectal cramping (ew)
-night sweating
-internal bleeding

so really, it's....a lot to deal with. And these symptoms don't just happen when I'm on my period. They can happen whenever they feel like it!
Now I know you must be wondering: what are the treatments available??? And I'm here to tell you there aren't many!! A lot of ppl w/endometriosis are put on hormonal birth control. Sometimes this works but for me it never has, plus I can't take birth control for other reasons
Surgery--to burn away the lesions/adhesion/scar tissue caused by the cells--can be effective in the short term but it's not a long-term solution and getting surgery all the time also isn't exactly something I can do
Sometimes a hysterectomy stops the disease but even this isn't a guarantee. Since the cells grow independently of the uterus, symptoms can still persist and besides, a hysterectomy carries its own risks & difficulties
It's a disease that can destroy people's lives. It's destroyed mine. And it's a disease with very few options for treatment. It's a disease that is often downplayed or ignored. It's a disease that very few people (including medical professionals) take seriously.
(NOTE: please please please do not respond to these tweets with advice unless you have endometriosis yourself. I am really serious about this. I have tried EVERYTHING, including the thing you think you need to mention. I did not make this thread for advice, I made it to educate)
IN CLOSING #endometriosis IS THE WORST & for #EndometriosisAwarenessMonth please keep those of who deal with this illness in your thoughts.

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