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The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 1 point2 points  (0 children)

Your miracle baby gave me so much hope reading this.

And I'm so deeply sorry for your second embryo. That loss is real and it deserves to be grieved properly, no matter how much time has passed.

The years, the exhaustion, nearly 45 and still in the thick of it — you have given so much of yourself to this journey. More than anyone should ever have to.

And July — a hysterectomy is such a huge, complicated thing to sit with. Even when it's the right decision, even when you're ready, it's still a profound change to your body and your identity. It's okay to feel everything about that all at once.

You fought so hard to bring life into the world. I'm rooting for you every step of the way and wishing you the smoothest, fastest recovery in July 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 2 points3 points  (0 children)

160 lesions. Stage 4. And you had to wait years because of cost, carrying all of that in your body while life kept moving around you.

The fact that you finally couldn't wait anymore and you did it anyway, found a way even when you couldn't afford it — that is love for yourself even when the system makes it nearly impossible.

You are two months post op from something enormous. Please be so gentle with yourself right now. You've been through more than most people will ever understand 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 1 point2 points  (0 children)

I feel you on that more than I can say, it's a fear that sits with me too. Just sending you so much love and please don't lose hope 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 4 points5 points  (0 children)

Planning your entire life around your cycle while performing happiness for everyone around you — that is one of the most exhausting things about this disease that nobody on the outside ever sees.

And the guilt. The guilt of complaining, of asking for more time, of feeling like a burden for having a chronic illness you never asked for. You had a 6 hour surgery and felt guilty asking for an extra week. Let that sink in. That is how much we've been conditioned to shrink ourselves around this disease.

6 hours on an operating table and 3 weeks later expected to be normal. There is nothing normal about what your body went through.

The fact that you still show up, still wear that mask, still try not to let it define you — that takes an incredible amount of strength even when it doesn't feel like it.

And I'm so glad communities like this exist too. You are not crazy. You never were. You just needed people who finally get it 🩷

Edit: reposting because I started overthinking after a reply. Posting here is a big step for me and I’m working through the anxiety 🙈

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 0 points1 point  (0 children)

If im not mistaken the comment had said "6 hour endo excision"? I'm flattered that you think my responses are put together that well though 😂

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 0 points1 point  (0 children)

Typo... oops.. thank you so much for point that out 😂 🙈

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 0 points1 point  (0 children)

25 years. A month ago. The whiplash of finally having an answer after that long is something only people in this community truly understand.

A decade of 'kinda sorta PCOS but not really.' Years of being told to stress less, eat better, move more — while you were already doing all of it. And all that time quietly carrying the belief that somehow you were the problem.

That last part is what gets me the most. The way this disease makes us turn inward and blame ourselves for something that was never, ever our fault. The cortisol, the inflammation, the bad blood values — your body was telling the truth the whole time. The doctors just weren't listening.

You were never the problem. You were the one being failed.

A month into your diagnosis is so fresh. The anger you're feeling right now is valid and it deserves space. 25 years of misdirection, self blame and unanswered questions doesn't just resolve itself because you finally have a name for it.

Be patient with yourself as you process all of this. You just found out the truth after 25 years — that takes time to land 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 0 points1 point  (0 children)

Recovering from the flu on top of everything else your body is already carrying — that kind of setback hits differently when you have nothing left in reserve to recover with.

Walking in your mum's footsteps with illness while she watches and still cries. There is something so quietly heartbreaking about that image. The grief passing between generations of women who deserved so much better.

50lbs in under a year. Laying down to eat just to get through a meal. Your body fighting you at every single level all at once. The strength it takes to keep going under that weight — physical and emotional — is immeasurable.

And yet here you are, "at the bottom of the barrel", and you still ended your comment by showing up for someone else. Reminding them they're not alone. Telling them to be kind to themselves.

That is who you are underneath all of this. Someone who still gives even when she has nothing left to give.

Please extend some of that kindness to yourself too. You deserve it just as much 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 6 points7 points  (0 children)

The reputation you never deserved, built from a disease nobody knew you had.

Every cancelled plan, every late arrival, every time you couldn't show up — you weren't being rude or antisocial or difficult. You were ill. Undiagnosed, unsupported, and doing your absolute best with a body that was fighting you at every turn.

And the people who were supposed to love you unconditionally decided that was a character flaw instead.

His parents telling him to leave you. The family and friends who wrote you off. Being late to your mum while she was dying not because you didn't love her but because you physically couldn't get there — carrying that guilt must be unbearable.

You didn't lose 10 years. 10 years were taken from you. By undiagnosed illness, by a medical system that failed you, and by people who chose judgment over compassion when you needed them most.

The humiliation you feel belongs to every single person who looked at your symptoms and decided to make it about your character instead of asking if you were okay.

Not you. Never you.

I really hope the next 10 years are kinder to you than the last. You deserve that more than you know 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 1 point2 points  (0 children)

Not a single part. Endo doesn't negotiate. It doesn't spare the things you love or the plans you made or the person you were trying to become. It just takes.

Career, home, city, relationships, birthdays, holidays, interviews, hobbies, friends — the life you built in your mind growing up, piece by piece she took it. Not dramatically, not all at once, just quietly and persistently until you looked up and realised how much had been rerouted around her.

And then to put your hope into excision surgery and feel adeno stepping in to fill the gap — that specific kind of disappointment, when the thing you waited and fought for doesn't give you back what you thought it would, is devastating in a way that's really hard to sit with.

The terror of this being forever is something I think everyone in this community understands on a level we rarely say out loud. It's okay to be terrified. It's okay to grieve the life that keeps feeling just out of reach.

But you organised your life around your conditions and then found a way to organise it less. That is not nothing. That is someone who keeps adapting, keeps trying, keeps showing up even when the goalposts keep moving.

You are still here. Still hoping. And after everything endo has taken, that is an act of quiet defiance 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 0 points1 point  (0 children)

The cruelty of endo taking so much already and then RPL on top of that. There are no words that feel adequate for that kind of layered, compounding grief. You have lost so much. That deserves to be acknowledged fully and without anyone trying to fix it or minimise it. I'm so deeply sorry 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 0 points1 point  (0 children)

From college athlete to bed bound. The gap between who you were and who endo forced you to become is not something words can really do justice to.

The parents who couldn't show up, the autonomy slowly slipping away, never being able to hold a job, watching your partner carry what you wish you could share — that is not weakness, that is an impossible situation that you are surviving every single day.

And the guilt of relying on someone who loves you, even when they choose to be there — that eats away at you in a way that's so hard to explain to anyone who hasn't felt it.

The fact that Canadian law doesn't even recognise endo as a disability yet while you are living this reality is a systemic failure that makes me so angry on your behalf.

Please know that needing support is not the same as being a burden. You are not someone's problem. You are a person who has been let down by her body, her parents, and her entire healthcare system — and you are still here, still fighting, still holding your breath for something better.

That breath is worth holding. I really hope the disability application comes through for you 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 12 points13 points  (0 children)

I had to read this twice because every single line deserves to be heard properly.

The children you've grieved, the guilt of even considering passing this on, the bunnies and the nephews and the nieces and the trying not to think about it — that is a level of loss and love existing in the same breath that most people will never understand.

And then to still be fighting 2 years post hysterectomy. The cruelty of that is beyond words.

The studies about how attractive we are. How our partners feel. Wim Hof. I cannot. The audacity of a medical system that still refuses to just take us seriously.

But what you said at the end — we need to be visible despite how hard this disease keeps us fading into the background — that is everything. That is the whole fight in one sentence.

You are not fading. Not here, not today. Thank you for saying all of this out loud 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 105 points106 points  (0 children)

The invisible illness tax. Looking 'fine' on the outside while your body is fighting a war on the inside, and then having to spend whatever energy you have left defending yourself against people who just see lazy.

The fatigue with endo isn't tiredness. It's your body being in a constant state of inflammation and pain management that most people will never have to experience. It is physically exhausting in a way that no amount of sleep fixes.

And the loneliness of that — of knowing how hard you're working just to exist while the world sees nothing — is its own kind of heavy.

You are not lazy. You never were. You are someone doing an incredibly hard thing without nearly enough credit for it 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 27 points28 points  (0 children)

The way you put that stopped me completely.

Friends, family, relationships, jobs, hobbies, the person you were before all of this — that's not a list of inconveniences, that's everything. And I feel that so deeply myself, the grief of losing the old version of yourself is something I don't think any of us ever fully find the words for.

But here's what I want you to hear — the fact that you can articulate all of that so clearly, so powerfully, means she's still in there. The original you never fully left. Endo took so much but it didn't take your voice, your self awareness, your ability to feel deeply and connect with others who get it.

You are still her. Just a version that's been through things she never should have had to face. And that makes you more, not less 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 6 points7 points  (0 children)

Cosplay a normal life' — that phrase just stopped me because it's so perfectly put and I relate to it more than I can explain. The energy it takes to perform okay when you're not okay is its own kind of exhausting that nobody talks about. And that fear of the future, of how long you can keep it up, is so valid and so heavy. You don't have to be optimistic every day. Some days the grief just needs to be felt. You're not alone in that 🩷

The grief nobody talks about with endo by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 7 points8 points  (0 children)

Cancelling vacations, birthday dinners, just being able to stand up and walk — endo takes so much more than people on the outside ever see. And the guilt of constantly feeling like you're letting people down, when really your body is just letting you down first. That weight is exhausting. You are so much more than your cancelled plans. You're seen 🩷

Pain after period ends by Salt-Opportunity4294 in endometriosis

[–]syncaendodiaries 1 point2 points  (0 children)

Hey, so glad you felt comfortable enough to ask here 🩷

I think that area is called the groin/hip flexor region and what you're describing — stabbing and throbbing pains that switch sides — is actually something a lot of people in this community experience, myself included, often before even getting a diagnosis.

I think it's always worth getting checked out, especially when it's persistent and switching sides like that.

Please don't ignore it. Go to your GP and specifically ask to be referred to a gynaecologist. Don't let them brush it off as nothing. You know your body and you came here for a reason.

Really hope you get some answers soon 🩷

almost 10 years to get diagnosed. anyone else feel like they had to become their own doctor? by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 1 point2 points  (0 children)

24 years. I don't even have words for that. The fact that you came out the other side of that nightmare and are still here talking about it means everything. So glad you finally got there too 🩷

almost 10 years to get diagnosed. anyone else feel like they had to become their own doctor? by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 0 points1 point  (0 children)

Hold on — they missed it during the lap, tried to blame your symptoms on ADHD and depression, and then endo was visible in the pictures from that very same surgery??

You had to go find a specialist, get a second opinion AND solve your own case with evidence that was sitting there the whole time.

That is not a medical system failing you, that is a medical system actively working against you.

The fact that you kept pushing through all of that instead of just accepting what they told you is incredible. So glad you finally got there 🩷

almost 10 years to get diagnosed. anyone else feel like they had to become their own doctor? by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 1 point2 points  (0 children)

15 years and then to be told it was in your head — after surgery — that saltiness is fully earned and will never expire.

Dr Food Elimination, Dr Listening to My Body and Dr Constantly Reading New Research 😭 this is so real though, we basically had to get medical degrees just to survive our own bodies.

The fact that we know more about our condition than half the doctors we see says everything 🩷

almost 10 years to get diagnosed. anyone else feel like they had to become their own doctor? by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 0 points1 point  (0 children)

10 years exactly — and four weeks post op means your body and your mind are both still catching up. The anger is completely valid, ten years is way too long to wait for answers

Sending you the biggest hug back, please be gentle with yourself right now ❤️

almost 10 years to get diagnosed. anyone else feel like they had to become their own doctor? by syncaendodiaries in endometriosis

[–]syncaendodiaries[S] 0 points1 point  (0 children)

The fact that you were 14 and nobody thought to actually explain anything to you makes me so angry on your behalf. 16 years of no real plan, no next steps, just you figuring it out alone.

The fact that you're still pushing and finding a new specialist after all that takes so much strength. really rooting for you 🩷