Other than the pain(!), what are your symptoms?

[wonderlander]

I suspected endometriosis for many years before I sought medical help and even then it was years until I was told I have it (don't want to use the word diagnosed as I haven't had a laparoscopy, but very conclusive findings on MRI). I thought this because of the severe back, pelvic, and stomach pain I experienced when on my period, along with pain during sex and bloating (also more recently some bowel symptoms too).

Since my MRI results I have been looking at all of my other symptoms in a different way and wondering if they are related. I am constantly exhausted, regularly dizzy, headaches, and feeling nauseous - no way near as severe as the pain, but have more of a day to day affect on me, because it's near constant.

I'm assuming these are related to endometriosis (I've had blood tests and no anemia). Previously I thought I was weak and wondered how everyone else got through the day without feeling unwell and/or tired! I'm only now starting to give myself a bit of slack with how I feel on a day to day basis, I was so frustrated that I struggled so much to work, be social, exercise, and do hobbies.

Aside from the classic endometriosis symptoms, do any of you relate to the above or have any further symptoms?

[TennisCourt]

Hey!! I was the same as you, thought I was just always coming down with something all the time and I couldn’t understand how my boyfriend would wake up REFRESHED on a morning🤦🏽‍♀️😂

I get super tired, I get bad nausea not all the time but it flares, I feel like I get “Endo flu” where some nights I genuinely feel like I’m getting a bug, I just feel so unwell but then it never comes to anything.

I never feel refreshed no matter how sleep I get, I just want to be in bed by 9pm and I find it so hard to get up for work.

I also have severe bloating, “IBS” style troubles, I get a lot of gas that ends up being very painful, a lot of bum pain that started as stabbiness but ends up now a dull pain.

Right now for me just getting through a 8-5 of office work is hard and a struggle. I would fight it for weeks trying to cook, go shopping, socialise etc not giving myself the rest I need but I’ve learn i have no choice but to anymore xxx

[wonderlander in reply to TennisCourt]

I relate so much to literally everything you've said! Sorry it's that way for you but glad I'm not alone. Thanks for replying. Agree so much with your last paragraph, I use all my energy on struggling through the boring stuff (work) and have none left for anything else! X

[TennisCourt in reply to wonderlander]

Bless you!! Also BRAIN FOG!!! Omg that gets me so bad at work. I’ll be talking away and I’ll say the completely wrong thing and not notice. I was talking to my boyfriend and I called it brain FROG 🐸 I didn’t notice, he started laughing and I was like what😂😂 it’s crazy xxx

[wonderlander in reply to TennisCourt]

Brain frog certainly sounds a lot more interesting 😂 x

[endowarrior12]

fatigue is a huge issue for me, even when sleeping well (usually with medication) it’s never enough. I find small things exhausting and it’s so frustrating xx

[wonderlander in reply to endowarrior12]

Sorry to hear that, agreed ☹️ and is this throughout your cycle? Mine seems to be almost always? X

[endowarrior12 in reply to wonderlander]

Just all the time 😢 xx

[wonderlander in reply to endowarrior12]

So horrible isn’t it! Hope you’re ok ☹️ x

[Moon_maiden]

Hi

Certainly relate to what you’ve said. I’ve spent my life working and not much else, hobbies now and again but it was all tiring.

[wonderlander in reply to Moon_maiden]

Sorry to hear you’re the same! It gets you down doesn’t it

[Moon_maiden in reply to wonderlander]

Very much so, hate not working. I do a few hours volunteering at CAB but can’t do more than three without it getting uncomfortable.

Hope you’re feeling semi ok today

[AllthatGlitters in reply to Moon_maiden]

Me too, I worked all my life up until about a year and a half ago, not much opportunities I find when you have a hidden disability, so not much chance of a job WFH either x

[Moon_maiden in reply to AllthatGlitters]

Hi

How are you feeling?

Horrible isn’t it, ridiculous as well that one stupid disease can do so much damage and still not be recognised as anything 🙄

I managed to get PIP recently for chronic pain and fatigue more than it related to Endo, that’s frustrating though. Dr only puts chronic pain on fit notes. I want more association with disease. My rant 🤣 I hate claiming anything. Do me a bit in the garden today so seeing if it works out or catches up later

[DarkStar85]

Yes all of these 😫 extreme dizziness and fatigue are worst symptoms for me x