Utterly fed up: I'm currently lying in bed... - Endometriosis UK

Endometriosis UK

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Utterly fed up

Katie1982 profile image
18 Replies

I'm currently lying in bed crying... . My kids are downstairs, having a late night (they are very happy) and dad is settling them tonight....

I'm just so fed up. Feeling s***, bloated like I'm pregnant, bowels messed up, really low mood, and zero energy!! Pain isn't so bad at the moment. Silver lining......

Dr thinks I should go on anti depressants. Not sure that solves much tbh. Root cause is endo not depression.

Still dont think people take endo seriously!!!! My husband is good but I feel as though he rolls his eyes sometimes. Noone can see it can they???? So we kind of suffer in silence. Sometimes I think people see it as a way of attention seeking?

Sorry ladies, I've only been on here last few months to have a moan......... I know things will pick up again, I'm at least lucky I only have these flares x2 a month and not constant.

Love and hope to you all xx

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Katie1982 profile image
Katie1982
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18 Replies
Pureunicorn profile image
Pureunicorn

Hi, I know just how u are feeling, sometimes u just wish u could talk/moan to someone that understands what ur going through! I've had a rough couple of days no sleep n painkillers not really helping! I hope u start yo feel better and just remember u can always come on here and talk to someone as we all know what it's like x

Katie1982 profile image
Katie1982 in reply to Pureunicorn

Thank you so much for taking time to reply. Painkillers dont really do anything do they?

Its reassuring to know I'm not alone but it also makes me sad other women are going through this.

I'm currently sat in the toilets in work mustering some courage to go into a meeting at 9.30..... I'll do it, and I'll do it because it wont beat me! Such a normal part of work, yet requires so much courage, bonkers heh?

Take care of yourself. And thank you for being there xx

kelsbels88 profile image
kelsbels88

Katie I hear you.

I have been a wreck for about a week. My period was late then came which is always a bad sign then came the awful bowel pain and constant bathroom visits and then yesterday I was an emotional mess cried 4times at work then had a massive meltdown when I got home hubby found me and just said “don’t worry we’re on the right road,” was not what I wanted to hear so cried a bit more. Today I just felt angry.

Sadly no one but those with it understand. I wish sometimes I could help others feel what I feel and the inconvenience it causes but alas I can’t. I just keep plodding on and for a week or so a month I just focus on me whilst crying when no one is looking because it’s easier than feeling like a burden to everyone around me.

So just a long winded way of saying you’re not alone and do t worry if you need to vent it out xxx

Katie1982 profile image
Katie1982 in reply to kelsbels88

Hi oregan_k. Thank you for your reply, it means a lot that I can connect with other women in the same boat!!

We are not alone. In this together.

I hope your pain eases.

It's a tough journey isn't it?

I could do with having a cocoon to wrap me up today and shelter me from the world outside, but thay wont pay my Bill's.....

Love and healing xx

Pinkyandthebrain profile image
Pinkyandthebrain

Hi Katie,

One of the worst things for me with endo is the loneliness and feeling of being separate from the people around you.

I was diagnosed three years ago and have just recently been diagnosed with clinical depression; I think a lot of it is due to the fact that I’ve been struggling with endo symptoms for years in private.

Your post really strikes a chord with me because I’ve been in that exact position on so many occasions.

I have been taking sertraline (anti-depressant) for the last three months and it’s one of the best decisions I’ve ever made. I finally feel like I’m getting control back over my brain and my mental state.

Of course it’s completly up to you as to if you decide to give medication a go, but I resisted for years due to the stigma and fear of the side effects. But actually the side effects were for a short period of time and now I have control of my life again.

This has turned into a very long rambling reply but please reach out and message me if you have any questions or want to chat as our situations sound so similar.

Xxx

Katie1982 profile image
Katie1982 in reply to Pinkyandthebrain

Hi. Thank you so much for your kind message. I am going to visit the gp and talk about starting some tablets. I just feel a fraud and because the low mood isn't all the time I feel a bit lost...

Just sat in the toilets in work trying to get the courage to go out and actually do my job! Crazy!!!!!!!!!

Thanks for sharing your story and the offer is returned to message me anytime too. We have a shared understanding on this forum, we are in it together xx

Pinkyandthebrain profile image
Pinkyandthebrain in reply to Katie1982

Yes I completely understand; I thought because my low mood was coming and going that it meant I couldn’t be depressed but I now understand that actually that is very common for some people with depression.

You hear so many horror stories about side effect from anti depressants and with everything that comes from endo I just couldn’t bear the thought of having more things to deal with. But when I managed to explain that to my gp they were really understanding and chose something that had low side effects, and also started me on a very low dose with instructions on how to increase slowly - this also helped with the side effects at first.

Three months in and I have very few side effects (the main one is that I can’t drink more than 2 glasses of wine or I get dizzy) but I am feeling more clear headed than I have in years. And weirdly it am coping with the endo symptoms so much better too?!

I’ve been that person who hides in the toilet, cries in the shower or silently at night so your partner can’t hear you. We all deserve more 💚

It’s also worth mentioning that I see a counsellor every week, the combination of that and the sertraline is really helping me get back to normal :)

You’ll get there too! Xxx

Katie1982 profile image
Katie1982 in reply to Pinkyandthebrain

Thank you hunny... thank you so much xxxxx

Samsammy profile image
Samsammy

I think you speak for many. I always think that people think its attention seeking ! Years of putting up with bad pain all that comes with Endo, having your pelvic area stick inside and having things removed cos of it and then a friend says “yeah I get really bad periods” 😂😆. I feel you mood hun. My partner rolls he’s eyes too. x

Katie1982 profile image
Katie1982 in reply to Samsammy

Thanks samsammy. #feelyourmood xxxxxx

Samanna profile image
Samanna

Oh honey I’m so with you.

The constant mental ups and downs, pretending to be fine for sake of your loved ones, trying to be ‘normal’ to get through the day......and it’s like you say the pain doesn’t have to be bad, it’s the effect endo and hormones have on your mindset and mood I find harder to deal with.

Reading what @Pinkyandthebrain has to say about antidepressants is really interesting, I was offered them back when I was 26 and went into premature menopause because of infected endo ‘killing’ any live ovary tissue. I never took them, but I’m now 42 and maybe it’s time to see through the stigma and see if they help. I’ve had long periods of feeling fine but pain and depressive episodes are definitely more frequent the past few years.

Offloading to people that get it helps. Always here and let me know what you’re thinking now about ADs, we could do it together!

Xx

Katie1982 profile image
Katie1982 in reply to Samanna

I'm going to see the gp next week and talk about tablets. If it helps it cant be a bad thing. Other than that I'll ask for a body transplant 🤣

Your story sounds traumatic. I wonder if there is anywhere for us ladies to talk to professionals about how we cope and deal with this every day?.......

Xx

Samanna profile image
Samanna in reply to Katie1982

Hahaha, the amount of times I’ve said that, body transplant, brilliant!

It’s funny it’s not until you write all your history down you’re like bloody hell, have I really put up with that and still keep going?!

I had the EXPECCT team in Edinburgh discuss my case on Tuesday, waiting to hear what they think the way forward is. I think a hysterectomy, some new organs would go down a storm too 😄

Might make a GP appointment to discuss pills this week. Imagine having access to professionals, and for our nearest and dearest too, just so they can get a handle on how rubbish this is to live with. We can’t just ‘give ourselves a shake’.

Xx

Katie1982 profile image
Katie1982 in reply to Samanna

If only heh?

I'm definitely going to look at medication! Feel more reassured!

Let me know how you get on? 🥰

JulesUK profile image
JulesUK

I remember my doctor saying feeling stressed isn’t helping your pain!! it was the endo causing the bloody stress. So frustrating. I think doctors giving out anti depressants is just a quick solution in their eyes and you go away. (Solution for them not for us) although I’m not saying they can’t help. The other classic comment was, after explaining to a family member I hadn’t got out of bed until the afternoon (as I couldn’t stand due to the excruitiating pain) they said “oh I’d love a lie in”. I can’t ever forget that. Sorry I can’t offer any solutions but I know where you’re coming from people just have no idea what we go through it’s just not seen as the complete debilitating condition it is unfortunately and for me I didn’t let people see me on my worst days so when they do see you they probably wonder what the fuss is about! I hope things improve for you soon and it’s fine to have times like this, don’t push yourself to “get over it” or force anything, you’ve a right to feel all the feelings you are experiencing . x

Katie1982 profile image
Katie1982 in reply to JulesUK

Thank you so much for validating my feelings and pain! It means so much 🥰

We suffer in silence alot of the time, but thay means we are strong, right????

Love and healing xx

Renlark profile image
Renlark

Dear Katie I’m so sorry you are going through this and I do understand I feel completely the same am in tears most days with pain migraines dizziness feeling sick muscle aches just a nightmare and I get similar reactions from my partner increasingly when I need help and I feel like a total nuisance even though I still manage to do everything ie looking after him cooking etc in severe pain nearly fainting sometimes but we are women so it’s ok ?! Well it’s not and you moan as much as you need to! Endometriosis is an ugly destructive disease that affects us physically and mentally but stay strong sweetheart remember you are not alone I like many other women are going through the same don’t let it beat you ever. I wish I could give you a hug 😥😔 try and do something or give yourself something each day that makes you feel better and human and beautiful again and remember you are stronger than you think 😘🌸🌸🌸xxxx

Katie1982 profile image
Katie1982

Thanks so much for taking the time to reply. We really are warriors arent we? 🥰

Your message was better than a hig, reminds me I'm not on my own, and that is so powerful!

I'm sending love and healing to you and remind you to listen to the words you speak..... we are so great at supporting each other and sometimes are advice is hard to put into action ourselves! You have a beautiful empathic soul, remember that. Xxxxx

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