I have no control over my own body - Endometriosis UK

Endometriosis UK
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I have no control over my own body

Stroppyboard
Stroppyboard
21 Replies

Hi, I’m new. And I’m struggling with stuff today. What I hate most is feeling weak and whiny and a bit pathetic. I’m convinced everyone else would deal with this so much better than I am, and wouldn’t let it take over their lives.

I found out I had Endo last year during a laparoscopy to remove cysts on my ovaries. I’d hear of Endo but didn’t really know what it was. I guess a few pieces of the puzzle that is my health suddenly fell into place. And because of the diagnosis I finally got put forward for IVF treatment. Which has now been put on hold cos I need some chocolate cysts removed. I see a surgeon next month to talk about it so I’m guessing our IVF won’t get going again til next year.

Anyway, that’s not what I wanted to talk about. I’ve read that Endo comes with chronic fatigue but I’ve never really understood what that means. But I’ve been feeling really low and lethargic and zombiefied for a few weeks now. I had some blood tests done and they all came back normal. It’s not the first time I’ve been feeling rubbish and been told there’s nothing wrong. But it can’t be right to feel like this. It’s not normal. I don’t feel normal. I’ve had loads of time of sick cos of it too and my HR department aren’t the most understanding at the best of times, althoughh I must say the lovely people I work closely with have been amazing.

Long story short, im looking for some help. Understanding. Does anyone else feel like this? Breathless, headachy, bone weary and feeling a bit dim witted? I think I’m going mad and I can’t take it, there must be a reason I feel like this.

Help me please.

21 Replies
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evickery1

Me, you're not alone.

I feel like this often but haven't found anything to combat it yet. Often feel like my brain has just stopped working and i'm staring into space i'm so tired.

I'm due to have surgery in six months and hoping that sorts it out.

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Stroppyboard

Thank you for reading my post. I’m hopeful we’ll find something to help us and I’m glad it’s not just me, not that I’m pleased you’re struggling too! I hope your surgery goes well, six months is a long time, I think the NHS is great but seriously why does everything take so long?!

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evickery1

I had a chat about this with my consultant as I saw him yesterday. I was informed because there are people who are worse than me (i'm stage three) they obviously come first. Which is absolutely fine, but they tend to find when they're doing other operations on women they stumble across stage four endometriosis or people with endometria cysts with a danger of rupture/have already ruptured who will need emergency surgery so everyone else gets pushed back.

To be honest i'm not pissed off about it as I just think i'm stage three and i'm a write off, i cant even imagine how much pain those stage four people must be in.

It's not just the tiredness getting me down - mine is especially bad on my bowel - i'm getting to a point where i've just had enough of sitting on the loo crying, i actually have passed out on the toilet a few times now which is not embarrassing atall.

But yeah, never think you're alone. I've spoken to plenty of women who feel this way

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Stroppyboard

I guess that makes sense, that there are emergencies and things, when I had my laparoscopy last year I was put in as an emergency cos I was in pain and had been off work but that still took a few weeks. I’ve never been told what stage mine was, I get that it was quite bad and I was told that there was no way I was going to get pregnant the way it was.

But that doesn’t help you. As far as your concerned you’re an emergency too. It’s affecting your life.

Endo is particularly horrible and it annoys the hell out of me that there’s very little anyone seems to be able to do for you. I got signed off from the gynaecologist department cos there was nothing they could offer me other than going on the pill and when you’ve been trying to get pregnant for 3+ years that’s not what you want to hear.

I have lots of tummy troubles too, it’s definitely not fun.

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evickery1

yeah i'm not too happy at the moment. My last consultation I took someone with me just because I think two sets of ears are better than one. We both took away that removing the endometriosis tissue improves your chance of fertility but after i went yesterday i've been provided with a leaflet for endometrial ablation which destroys your chances of having kids... it wasn't mentioned in the consultation i had atall so i'm just like eh? That wasn't worth mentioning to me yesterday????

I never got told what stage i was either, it was only because i was on here with people talking about stages that I asked and they told me...

There aren't enough endo specialists apparently, i'm in Gloucester county and there's only 12 gynos, two of which are endo specialists...

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Stroppyboard

Yeah I’d say that’s definitely something they should have been discussing with you!

It’s crazy that there aren’t more specialists as the more I look into it the more common it seems to be. I hate the whole ‘women’s troubles’ thing, in this day and age I think it should be looked into more and researched.

I’m at the stage now where I’m seriously considering a hysterectomy. I’ve been told that there’s a chance my ivf won’t be successful as I have a seriously low egg count. So I just need to get on with things so that I can move on with that part of my life, one way or the other, and then I can start fighting for the hysterectomy cos I can’t live like this anymore

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evickery1

here with my inbox open if you need a shoulder to cry on/ mailbox to cry in!

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AllthatGlitters

I often feel not quite right and can’t explain it, sore, tired, lethargic, can’t think right and I wonder if other people notice it. You are not alone and it’s awful feeling like this. Hope you feel better as the day goes on x

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Stroppyboard

Thank you. I’m glad I finally joined this forum. What do you do when you feel like this? How do you get on at work? If you don’t mind me asking of course x

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AllthatGlitters

I don’t usually cope that well with it, I can be quite teary. I worked full time but then took on part time hours, I find rest time helps. Sorry I can’t give you much good advice! X

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Stroppyboard

I usually get it into my head that everyone else just gets on with things and copes better and I’m just a bit pathetic, but I’m learning that’s not the case. We’re all struggling, at least we have each other x

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AllthatGlitters

Yes you are certainly not alone on this and I wish females would talk about things more together. Thank goodness for this site though x

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elmfb

I feel like this too! But wonder if it’s in my head! I feel self conscious that I look stupid and vacant.. I just feel as though I’m not ‘all there’ at times...

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AllthatGlitters

That’s exactly like me too!

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Hidden
Hidden

You aren't alone. I come over light headed quite a lot and I feel weak quite often. I am ALWAYS tired. Late for work every day because I can't get up in the morning. Sometimes it's not always physically a struggle, I can't even cope mentally sometimes. I lack motivation massively. I actually thought I was going through the menopause a couple of months back because I felt so weird haha! I feel like I'm losing my marble sometimes putting the wrong lids on things, putting the milk in cupboard after making a cup of tea... That kind of thing!!

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Stroppyboard
Stroppyboard
in reply to Hidden

Motivation is SO hard. And I find I go to do something and then I’m stood there thinking what was I doing?! And I’m getting clumsy and dropping things. I sometimes think have I got early on set dementia?!!! But then I do work for a care company so if I didn’t have that in my head everyday I’d just think I was losing the plot

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elmfb
elmfb
in reply to Stroppyboard

Omg YES!! I think this too!! It’s unnerving and embarrassing! ...and worrying.. but I wonder if I’ve always been this way.. could it be to do with oestrogen fluctuations? Presumably it could have been going on since puberty??! 💁🏻‍♀️

I have times (probably very occasionally) where I feel sharp and ‘on it’- I’m very conscious of the rarity of these moments, I consciously think ‘I wish this mental clarity and ability to articulate would stay!!’

I’m sure it must be hormones and tiredness... 😢😢😢xxxx

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Rosey78

Glad to hear others are struggling with endometriosis. I've just been diagnosed with it after nearly two years of knowing something was up! Multiple cysts too, which cause a lot of pain. It's good to know fatigue is an issue for others. I've spent a year feeling tired and thought I was losing the plot! Just waiting to hear what surgery options will be.

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Stroppyboard

It is such a relief to know I’m not alone, it’s not good to hear that others are suffering but it’s good to know at last that I’m not the only one. Thanks everyone xx

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Sunflower1968

Hi I hope you do not mind me saying this but I have stage 4 endo and my gynea has said “it’s such a mess in there” that she does not want to operate on me again. So the longer you leave it the worse it can become.

I had surgery in 2012 & 2014 it was supposed to be a womb ablation to help my endo but they hit an artery and I had a significant bleed and was in surgery for almost 4 hours without any benefit afterwards.

I know we are all unique but I hear so much suffering and it often feels I have tried so many things to help relieve my symptoms.

The latest being the prostap injection.

I am very lucky as I have a daughter and I’m truly grateful for her but she too is showing signs of endo and at just 17 is on a cocktail of medication.

I am a very positive upbeat person but endo is a total SOB.

Sending you all love & support my endo sisters x

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Stroppyboard

Oh goodness, you’ve been through a lot! You poor thing. It is a truly awful thing to have, the more I learn about it, the more horror stories there are, it just makes me more and more sad and angry and upset that there’s just nothing out there for us. There’s just nothing medical wise that is of much use. I’m so so pleased that I’ve finally joined this forum, I think that’s all we have, is each other. We have to stick together and live in hope.

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