This is a regular part of my life withendometriosis.
Thankfully, in todays digital age, many endo warriors are able to connect like never before.
Ive found a lot of solidarity in using variousonline platformsto talk to other people who have endometriosis.
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It helps us realize we really arent alone, no matter how much it can feel that way.
Also, we get to commiserate about how much endometriosis sucks.
If youre in need of some of that comfort and insight, you came to the right place.
The pain can truly be incapacitating.
But they can never really know just how debilitating the pain can be.
Parker speaks candidly about her diagnosis on hersocial media accounts.
It completely wreaks havoc on my entire body in every possible way, she says.
Dealing with this level of pain on a regular basis basically gives people with endometriosis nerves of steel.
I thought it was normal for my body to feel that way, says Bowyer.
[But] I can take breaks.
I wish I knew that long ago.
Leah Jones, 24, had a similar experience.
You cant physically see something wrong, but there is, Jones tells SELF.
People swallow their pain and push forward.
Its so, so valid to seek help for your symptoms, Roo adds.
Symptoms dont only happen when you have your period.
I deal with endometriosis symptoms even when Im not on myperiod, as do many of us.
Yes, debilitating pain while you have your period is a major symptom of this condition.
(Endometriosis lesions are thought to bleed at that time, which can cause or exacerbate pain.)
But endo can extend far beyond that one part of the month.
Christina knows this reality too well.
It annoys her when people brush off endometriosis with, Oh, some periods are really painful.
No, she says.
Our cramps happen whenever [they want] to.
Endometriosis doesnt only affect women.
Endometriosis can affect anyone who menstruates, regardless of their gender identity.
People often think of endometriosis as a womans disease, which it isnt.
Endometriosis has definitely contributed to my dysmorphia, Bowyer says.
Ive never wanted a child by birth, says Bowyer.
[Its] such a weird place to be in.
Trying to get a diagnosis can be exhausting and frustrating.
Thats a pretty high barrier to entry for getting an answer about whats going on with you.
But endometriosis is areally complicated conditionthat even specialists are still trying to understand.
All of this combines to make getting a diagnosis for endometriosis anotoriously difficult process.
Exactly how long the whole thing takes can vary from person to person.
Bowyer recently got their diagnosis, in August 2019, after years of symptoms.
I was fighting with doctors, and now I feel like I have an answer, they say.
It took a decade to get an answer for my pain.
The diagnostic process takes a lot of advocating for yourself, which can be reallyexhausting but is often invaluable.
Unfortunately, even receiving a diagnosis can cause a whole other emotional roller coaster.
I felt relieved [and] sad at the same time, says Christina.
It also means youre now saddled with a lifelong burden, which is a really hard reality to accept.
People might suggest a lot of ridiculous cures for your endometriosis.
Upon hearing that news, Rahn instantly started to cry, she tells SELF.
Before my diagnosis, in my mind, there wasalwaysa solution.
Drinkingcelery juice, going vegan, and having a baby will not cure your endometriosis, Roo says.
I was so irrationally mad, Bowyer says.
This is a part of my life.
Its not going to go away.
Finding out what helps your endo will probably take trial and error.
Trying to manage your endometriosis can be intimidating.
Im still trying to figure out a good treatment for my pain, Jones says.
Ive found some successusing cannabis to manage the paintoo.
you’re able to read about various ways people with the condition deal with their discomforthere.
According toACOG, 40% to 80% of people still experience pain within two years of laparoscopic surgery.
This was Christinas experience.
Shed held out hope that surgery was going to fix her endometriosis so she could resume life as normal.
Ten months later, I started having pain all over again, she says.
Roo wants people to not be so hard on themselves during this journey.
Its not about finding a cure, she says.
Its about pain management that will help your quality of life.
It can be really, really tough to find good endo care.
This has happened even with doctors who specialize in laparoscopic surgery but not endometriosis specifically, Bowyer says.
Rahn is still trying to figure it all out for herself.
[My] gyno gave me info, but not a lot, she says.
I wish there was a way to get real help.
The endometriosis community can be life-changing.
Oftentimes friends and family dont get it…until they see you at your worst, says Roo.
Having a community and being supported in a safe space is so important.
[Roo] has been such a big part of this journey for me, Bowyer says.
So I started doing some research, and I had every one of these symptoms.
Social medias ability to connect us in these experiences is weird and amazing.
Your body isnt the enemy, even if it feels like it.
I have to be on my own side, says Parker.
This strikes such a chord with me.
For so long I felt at war with my body because of the pain.
I hated it because I didnt understand that my body and I are actually in this together.Endometriosisis the enemy.
Not me.Endometriosisis the enemy.
While this disease can be draining and painful, both physically and emotionally, it doesnt define you.
