person living with endometriosis

im a they/them living with endometriosis my goal is to create a gender inclusive space for people with endo

[fightingendo]

welcome to my page! let me tell you a little about myself:

my name is m, I’m a young adult (nb, they/them) diagnosed with endometriosis in 2021 through laproscopy. I have stage 1 endo with chronic pelvic pain.

even after the surgery I’m still in pain and working to find a treatment that works with my treatment team. While searching for a treatment to manage my symptoms I’ve wished for a community of people with endo who could support me. What I found is that a lot of the talk around endo is very female centric. As a non-binary person I struggled to find a place in those spaces. This page is a neutral language space about endo for all people diagnosed or for people curious about the disease.

Endometriosis has changed my life. It has caused me so much pain, mentally and physically, and this blog and hopefully community is something I’m using to get me through the good days and bad. Thanks for being here :)

[fightingendo]

A lot of people wish they could go back in time. Rewind the clock to prevent an embarrassing mishap, relive a moment, or go back to a better time.

I wish I could go back in time and scream at myself for not loving my body when it was healthy.

I wasted so much time hating my body, hiding my body, wishing that it was different. I would look in the mirror and point out all my flaws and body check.

And then I got sick.

And all of a sudden, the only thing I wanted from my body was for it to be healthy.

Now I would give anything to live in a healthy body, no matter what it looks like. And thinking about how much time I wasted when I was healthy hurts my soul.

So now I enjoy my body. I appreciate it for what I gives me, but mourn the loss of function and lack of pain. And I kick myself for dwelling on small imperfections instead of living everyday to the fullest.

I would give anything to go back and force myself to love my body before it changed.

[fightingendo]

I’ve done a lot of reflection today.

A lot of mourning who I was before endo, and a lot of reflection on who I am now.

I don’t want to say that I’m grateful for endo bc it made me who I am, because that’s not true. If I could magically have made it never happen I would. I guess I would say that I’m grateful that I grew from my experience with endo.

And now I’m working to get some of the old me back.

[fightingendo]

tomorrow February break ends and I have to go back to school and as a chronically ill person, I’m terrified.

Tomorrow, my school’s mask mandate is lifted. Which increases my risk of exposure to covid-19. And while I am vaccinated and boosted, and will be wearing a mask, I’m terrified. If I get Covid, I’ll probably be fine thankfully, but if I get it, I can’t see my doctors.

If I get Covid, or get quarantined for covid exposure, I will have to skip my weekly doctors and other appointments that minimize my pain.

I will have to possibly miss appointments with a pain clinic that I have waited for for months, that if I reschedule, I may not be able to get back into for months.

Getting exposed to Covid could not only get me sick (duh) but prolong my pain.

Please wear a mask.

Lifting the mask mandate for me, and other chronically Ill people, is terrifying.

[fightingendo]

my day?

bloating + snow.

[anchoredtoasinkingship]

I know this is a long shot but reblog if you or someone you know has endometriosis and is willing to answer some question. Thanks again guys

[fightingendo]

always happy to answer some questions!

[fightingendo]

Happy Valentine’s Day! ❤️

I hope you had a day full of love and no flare ups! 🥰

[fightingendo]

Today one of my coworkers innocently questioned why I need to rest when I get home from school, why I need time to lay down after my day and why I can’t just start my homework. (I was complaining about my mountain of work each day)

And while she listened to my explanation that, being active all day while also in pain is exhausting and it makes the pain worse, so, often I just need to curl up in my bed and give my body a break.

She tried to understand, but it’s hard to understand someone’s body not functioning well enough for them to change something in their life that bothers them. It’s even hard for me, a person with the disease to remind myself that I need that rest, and it is valid to rest, illness or not.

In general too, It’s really hard to explain to people without a chronic illness that our version of rest generally isn’t self care, it’s survival.

[fightingendo]

endo thoughts: good days

good days are especially weird for me as a person with endo. On these days there are 3 thoughts usually at the forefront of my mind.

1. Am I cured?

Sorry queen but the answer is no, and I know that in my head but as soon as I have a good day, I start to think maybe this is the end. Maybe all of a sudden this just went away, and this thought is quickly followed by….

2. Am I even sick?

gaslight. gatekeep. girlboss. I mentally decide that all the hell I went through for the last couple of years simply did not happen and start gaslighting myself about my illness.

3. what will the people around me think?

when I’m around other people on a good day, for me like today, I panic and think, well maybe they think I’m faking the bad days since I’m okay today. Or what if them seeing me better makes them stop following the boundaries I’ve put up for myself, especially at work.

And then my rational self kicks in and here’s what I think next:

1. Is this really a “pain free day” or do you just have an exceptionally high pain tolerance so the pain just isn’t BOTHERING you today? Yep. The pain is still there just not as bad

2. A lady literally cut you open and found endometriosis tissue. You are sick.

3. Screw other people. I’ll try to educate on how chronic illness works and then if I need to, I’ll reestablish my boundaries for my bad days.

[fightingendo]

my exciting Friday night plans as a young adult: ….. acupuncture 🤩🥳

[fightingendo]

what none of your doctors will tell you about when you’re fighting chronic pain, is the mental toll.

(prefacing this with, I’m in therapy, and on antidepressants)

I’m exhausted: emotionally and physically from endometriosis.

Because of exhaustion, my tolerance to anxiety and sadness is dramatically lowered, and I have found myself depressed and having heightened anxiety.

Most days I ask myself why I should even bother getting out of bed when I know that as the day progresses so will the pain.

I spend my day pushing through pain, and then collapsing into the pain once I am able to.

Most days I wish I could just be numb. If not to the physical pain then at least the emotional pain.

I’m trying to take it one day at a time; but it’s harder when there’s no end in sight.

This is the ugly reality for some people with chronic illnesses and chronic pain.

[fightingendo]

PROGRESSION IS NOT PAIN!!

the stage of your endo DOES NOT EQUAL the amount of pain you experience with endo.

Some people with stage 4 endo don’t even feel the symptoms! While some people with stage 1 endo like me have chronic pain!

How you experience endometriosis is completely individual and based on how your body responds to the endometriosis tissue.

Don’t let anyone else (or yourself internally) invalidate your pain. I see you. It’s real.

[fightingendo]

things my endo was mistaken for:

- IBS

- IC/PBS

- Anxiety

And the truth is, the docs weren’t 100% off, they just weren’t looking at the whole picture. My symptoms were consistent with IBS or IC when you only looked at the symptoms I was having with my GI tract or with my bladder. When I was diagnosed with endo, we found that it is heavily involving my GI tract, my bladder, and my uterus. My endo is a wonderfully awful combination of symptoms across multiple structures and systems.

[fightingendo]

endo is a person specific disease- endo does not effect everyone the same way. A treatment that didn’t work for someone might work for you! It’s important that we listen to our healthcare providers and do our own research when we decide a course of treatment. After all, you know what’s best for your body and your life!

In spaces that talk about endo, a lot of the discourse is around how a treatment effects fertility. People on the internet will advise you against treatments bc of its impact on fertility when not everyone cares about preserving fertility. For me, I care about not being in pain, I don’t really care if I’m fertile or not. So I’m going to do treatments that not everyone agrees with- because that’s what my doctor and I have decided and is best for me. And that’s valid, even if other endo patients don’t want that treatment.

Remember- your treatment is your own.

[fightingendo]

today I started acupuncture for my endo pain! It was a very healing experience and I’m so happy that I did it. My acupuncturist made me feel safe and validated me so much ❤️

It’s so important to have providers who validate how you are feeling- especially when you are in pain in a way that so few people understand.

Someone with endo once said to me, sometimes when you’re so wrapped up in the pain you’re in (understandably so!) we forget that the rest of the world literally can’t even comprehend what it’s like to be in gut wrenching pain 24/7. It’s really nice to have affirming providers who make you feel seen, when so many people don’t get it :)

[fightingendo]

finding affirming healthcare providers should not be difficult.

it should be the standard

[fightingendo]

this morning has been rough. I ran out of class to throw up from pain from a flare. I am so frustrated because I did everything in my power to avoid a flare and here I am in the thick of it. And now I have a long day ahead of me where I don’t really have time to slow down and take care of my body. I just have to push through today.

I’m not going to sugar coat it- endo fucking sucks sometimes.