EndoRant: This isn’t going to be anything... - Endometriosis UK

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EndoRant

Nemofudge profile image
13 Replies

This isn’t going to be anything insightful or interesting, it’s more just a little self pity moment during a surprise flareup, to people who actually might have a clue what I'm talking about😅

I'm tired of being in pain, of my legs giving out and my back and hips and stomach hurting. I'm tired of feeling sick and dizzy and having a headache and some days not having the strength to stand. I'm sick of feeling weak and getting ill easily because my bodies too busy fighting itself to try and fight off a cold. I'm exhausted, I'm moody, I'm hormonal, I'm bleeding and cramping and bored of it.

I'm tired of going to my gynae because the pains got worse, or changed places, or gone from a throbby pain to a stabby pain. I'm tired of her telling me that it’s a chronic condition and we’ve just got to manage it, but telling me to remember it’s something I’m always going to have and this may be the best that it’s ever going to be. I always end up feeling like I’ve wasted her time because if my pain is 0.001% better than it was before she’ll take that as a win, and I'll feel guilty and like I need to just stop my complaining because it’s technically improved. That tiny percentage seems to mean we forget how bad it is in spite of that.

I'm tired of hearing it being down played as a "sensitive cervix" or "isn't that just period pains?" or "everyone bleeds a little after sex/maybe you're doing it wrong". I'm sick of going from pill to pill, and now the coil, dealing with the changing symptoms and hormones and trying to find something that works. Sounds like a great plan until you realised it's been over a decade and nothings changed. How long am I supposed to bounce between them before I run out of options? Or do I have to settle for the best of the worst? One lot of shitty symptoms instead of a different set.

I'm tired of not knowing what’s from the Endo and what's from normal people problems. Dodgy stomach? It could’ve been something funny you ate at lunch but also your Endo does kind of affect your bowels and tummy like that. Back and hips are hurting? Yeah you did lift something heavy at work but also during a flareup that’s where the pain tends to be. Migraine and dizziness? Probably haven’t drunk enough water today but again, during a flareup this is what tends to happen.

The majority of the time I sit and downplay it, I say how it's not as bad as XYZ conditions, that it's not as painful/threatening/damaging etc. Just for tonight, I think I'll let myself curl up with a hot water bottle and be sad that this is the hand I've been dealt. No doubt tomorrow I'll be back to "Eh, you learn to live with it, no other choice really"

Side note: Had a proper rant, post didn't post so had to retype and now it doesn't sound quite right but either way, I'm all moaned out I think 🙃😭😂

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Nemofudge profile image
Nemofudge
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13 Replies
Faith103 profile image
Faith103

🙏 amen to this 🙏 it’s like reading from my brain....keep going girl xxxx we got this 💪

Moon_maiden profile image
Moon_maiden

Hope you feel better tomorrow. Good to have a rant now and again 😊

Jasmeet1991mb profile image
Jasmeet1991mb

Hope u feel better tmro xxx

Pinkyandthebrain profile image
Pinkyandthebrain

It’s ok to be sad and fed up; we’ve been dealt a rubbish hand! You’re not just having a bad period; your body is bleeding internally - give yourself permission to be sad on the days when it sucks. Xx

annieorrell profile image
annieorrell

Me too! I think sometimes people around me understand the pain a bit but forget the tiredness!

Nemofudge profile image
Nemofudge in reply toannieorrell

Same! I'm always so tired. Doesn't help it's combined with insomnia 😂 But just being in pain most of the time is so draining

BeTheSunshine profile image
BeTheSunshine

Be kind to yourself. Let yourself feel all this crap! Rant it out, cry, cuddle up with a hot water bottle, eat what you want. Tomorrow is another day, chin up, stay strong, you CAN do this because you already have! My advice would be to tell yourself that the upset stomach is because of something you ate, the tiredness is because you didn’t sleep great last night even if you thought you did, the headache is because you haven’t drunk enough. This is what I’ve tried to do and it has helped to put the endo to the back of my mind a bit and helps me to keep going and get up in the morning knowing that today is a new day. ‘When you can’t find the sunshine, be the sunshine’ xxx

Izzy84 profile image
Izzy84

Endo sucks, and you've done an amazing job of explaining all the reasons why! It's absolutely ok to indulge in a little self-pity now and again - the symptoms have such a massive effect on daily life, and they're compounded by the general lack of understanding out there. Who wouldn't feel sad and annoyed at that?

I'd never made the link before between flare-ups, tiredness and migraines. That suddenly explains so much, thank you for writing about it. I find the same with the symptoms - is it endo? Is it something else? Could it even be something serious like stomach cancer, which would be so hard to spot when some endo symptoms look the same?

I guess I just try to make the most of the days where my body is feeling better as they feel like a triumph over the endo. And I find being active(especially long walks) actually makes me feel better, too.

Hope today is a better day for you x

Nemofudge profile image
Nemofudge in reply toIzzy84

When I got my diagnosis, it explained so much! The fact that I'm almost constantly poorly with some bug or another was so frustrating for a few years until someone explained to me it's because my bodies too busy fighting the Endo to worry about fighting a cold. It's infuriating but at least I understand!😂

Today I'll pull up my boot straps, my work involves 13 hour shifts so there's not much choice 😅 But I find it helpful to concentrate on other people so help ignore my discomfort, and I think it's meant my empathy for others pain is now at an all time high x

Chicken2012 profile image
Chicken2012

Feel rubbish today too. Sounds like my brain. Shattered after my period. Keep going 💪

Jasmin24 profile image
Jasmin24

You read my mind!....currently I have brain fog, so word don't flow out....we have to fight, laugh at ourselves, do what makes us happy, we do not have to justify ourselves or condition to anyone....and we keep on fighting, never give up...

At times, I just want to give up, finish it all, becauseI don'tunderstand what this disease is at times.

To you all keep fighting, and never let it stop you smiling! 😊

mrskiki profile image
mrskiki

I can only say I know how you feel. I realised at uni sharing a flat with 4 other girls that things really weren't the same for me, I was told even in my 30s I would grow out of it .... fast forward to my 50s I did sort of but was then diagnosed with endo during another op. How your post brings it home to me that I wasn't imagining it all and NO it wasn't a few teaspoons of blood a month and not a normal period pain or whatever they kept telling me. I wish I could have taken my hot water bottle to work... I can't believe that you actually have a gynae etc, progress from 40 years ago, but they still don't seem to know how to help us!

PaoPetite profile image
PaoPetite

Lovey you made me cry! I felt every single word deep in my bones! We are not alone, although sometimes it feels like the whole world show us the back we are a generation of warriors and we are standing for one another! I am still crying because I couldn’t write it better! That’s how I have felt for the past 6 years but at least I know people like you and many others in this blog understand me!

Lots of love 💛

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