My Endo Experiences

a personal blog for me to vent my experiences with endometriosis

[endo-diaries]

1st Entry - Introduction

This is my first entry to my endo diary. I suppose I'm writing this because well my partner suggested it and well I find she's usually right about these sort of things.

I'll start first by introducing myself, I'm Jasper, 29, and I have endometriosis, I was diagnosed around 5 years ago after a long time experiencing ever worsening symptoms.

You can expect to see plenty of venting and frustration here if you happen to follow me, but gaining followers really isn't the point of this blog. Tumblr was my first social media when I was young and I think will be where I feel most comfortable looking to connect to the endo community.

So as far as introductions go, I think that's about it, I've got plenty more to say, of course, but I think I'll attempt to keep my thoughts somewhat orderly and with their own posts. At least, I'll do my best to

Jasper

[joy-haver]

So many things would be better if doctors could just say “yeah that is a real problem but there isn’t much we can do to treat it so our only real recommendations are other things that raise your general health level to compensate”

instead they just say “thats normal” or “oh theres nothing wrong with you”. Because in their mind “it wont kill you and i cant fix it” means its not worth mentioning.

Affirm the problem doc, it wont kill you. Knowing that something just isnt the kind of thing doctors treat will save your patients so much time, money, and stress, all of which will improve their health.

[dromaeosauri]

btw if all you are doing as a physically disabled person is survive, you're worthy of being here as much as everyone else. even if you can't work, make art, or leave your home. even if you don't see anything beyond your bedroom and phone screen. even if you gain or lose weight, or your appearance otherwise changes because of your disability. even if you aren't awake or aware most of the time. you being here is enough to contribute to the world. i love you

[little-miss-rasputin-pageant]

having chronic pain is just like. ur sitting perfectly still doing nothing meanwhile the space above your head keeps flashing -1hp -1hp -1hp -1hp -1hp -1hp -1hp -1hp -1hp -1hp

[endo-diaries]

7th Entry - Increased Risk

Something that doctors don't tell you when your diagnosed with Endo is your increased risk of ther conditions! It's infuriating, not only do I now have this life long disease but I have a higher chance of gaining other issues along the way and doctors can't even be bothered to communicate that!

I'm back to the doc tomorrow to request a full thyroid panel as I'm sick of just blaming new symptoms on Endo, because what if it isn't Endo and it's something serious or it's detrimental to my health!

So please if your a fellow Endo warrior make sure your checking your family history and frequently tracking new symptoms, don't just put it down to Endo, get it checked!

[fibro-memes]

[endometrosisawareness]

No medical professionals talk about how much this disease takes from you. How much it drains you, humiliates you, makes you feel like complete and utter crap everyday. You can have a couple of good days where you don't feel "Sick" just for something to go wrong and then cycle starts again.

[oshidorifuufu]

*showing visible symptoms* oh my god i need help desperately

*symptoms go away for one day* what if im just faking it

[ch4nn3l4st4tic]

[endo-diaries]

6th Entry - Expenses

Something that has frustrated me recently about endometriosis, and chronic illness in general, is the hidden cost of being sick.

From being forced to take days off to new medications, it sometimes feel so painfully stacked against us!

When I'm having to take time off work, or force my body into flair ups, and buy new medication and fork out for pain management devices like a tens machine or a cane, it all starts to stack up quickly.

That's not even considering the bigger costs like surgery and recovery, pain management, follow up doctor appointments and of course more time off work

Not only is managing endometriosis exhausting. It's also expensive

[wonky-joints]

things that make life easier, whether explicitly a disability aid, like crutches and wheelchairs, or not, like dishwashers and dryers, should not be luxuries. people should be able to live life with ease without great expense and for many disabled people these items are not a case of being comfortable but of just being able to live at all.

[willgrahamscock]

something that made me sit down and stare at my wall for an hour

[acornsandcarnelian]

I know the "disabled villain" trope isn't good representation but y'know. I DO kind of get it. Sometimes my whole body hurts so bad that I could probably make an evil death laser. Sometimes things claim to be wheelchair accessible and are so incredibly inaccessible that I consider world domination just to fuckin fix it. I can see the appeal of becoming Evil And Scary to stop the stares. I am tired of being Polite and (ironically) Accommodating, answering "what's wrong with you?" over and over. Having minions would also be quite helpful.

[thedandelamb]

This!

And also - Yes, while I'm at it I might indeed stab needles into certain people and call it "blood-letting" (while laughing maniacally, why not?), or lightly hit them over the head with a beautiful (and yet functional) cane; I too have been probed and left bleeding out by a neglectful medical system, I too have been poked with sticks by people acting as if one were a zoo exhibit, quite a lot dare I say, and rather often may I add.

Come on, it is undeniably at least a bit tempting to simply become evil to fix it all an for retribution's sake™!

PS: The minions do sound tantalizingly helpful. A nice finishing touch.

[endo-diaries]

life with a chronic illness is basically just going about with daily life then suddenly SYMPTOMS appear and remind you in the worst ways to take a damn break

[yrfemmehusband]

No one:

Endometriosis support forums and spaces:

hey LADIES! Hello my fellow endo SISTERS! To my fellow GIRLS AND WOMEN with endo! Other LADIES with endo how did you ___? Hey my endo GIRLSISTERWOMAN!! Question for the GIRLS with endo! As we all know, this WOMAN GIRL disease takes a toll.

Like yeah fuck anyone with endo who happens to not be a cis woman!!! let's make sure this space is clearly not welcoming to them and entirely unwilling to change small aspects of our language to include EVERYONE with endo! It's a woman only disease after all! Trans and intersex people? What's that?

[softgritspoonie]

Living with chronic pain at an age where everyone thinks you should be healthy and whole is a mindfuck because if I'm not visibly in pain or showing I'm struggling then people disregard it. Invisible illnesses and the people living with them deserve respect.

[endo-diaries]

I have a doctors appointment today, mostly to ask for more help with pain management but I've been wondering if it's worth asking to get a full hormon panel done. I'm on proestregtegon and I'm wondering if the single doze just isn't strong enough to conter my estrogen levels and that's why im still bl33ding and in pain. Has anyone ever had a 5 screen run? If so was it helpful in finding better treatments for your body?

[endo-diaries]

Well I'm off slynda so that's good, I've also got a prescription for something new and non hormal based so fingers crossed that helps