Endometriosis UK

Anyone else feel like this? Please help x

Hi, I am just wondering if anyone else feels like this! Backstory: doctor thought it wasn't endo as not a 'textbook' case and is out of ideas. Gynae said it must be endometriosis and if not they don't know basically. Tests all coming back normal really, but am having a lap in Jan.

My symptoms are:

- abdominal/pelvic pain throughout the month and pain going to toilet which I know is classic endo but I also get (every day not just when on period):

Nausea, light-headedness, unsettled stomach, slow heart rate (this showed up on an ECG), chest pain, heart palpitations, feeling weak/out of breath, weird heavy feeling in my arms and legs, general ill feeling which is really hard to describe - like I'm about to come down with flu or something! Also I may be looking into it too much but I also get itchy sore eyes - all of this has appeared in the past year.

Basically I am desperate to know - does anyone who has endo on here get these other symptoms? I just can't believe if this is what I have that it could make you feel ill in so many ways! Does anyone feel ill all the time and not especially when they're on their period? Being ill without a diagnosis can be so isolating. Thanks for reading xx

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Hi

After reading this post I was recently diagnosed with endo on Oct 2nd this year after dealing with these symptoms for 10 years but I also suffer with all the symptoms you described I never feel well I always feel sick. I know how it feels when your dealing with something like this & you don’t have an answer. I was told it was in my head & I made it up for attention which makes you feel like shit because you know something is wrong but docs don’t care. Even though I have had my lap the pain is still there & I still feel like this I hope you get an answer good luck xx

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Thank you so much, I really appreciate you sharing. It helps to know I am not the only one and that there are others out there who understand what it's like when friends and family can't. Good luck to you with everything xx

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Thanks so much I hope everything goes well for you 😊 I completely understand my family & friends don’t get why there is certain things I physically can’t do anymore because of the pain it’s the most isolating thing. It’s things that others would take for granted like getting sleep with out being in pain. They think once your asleep the pain magically disappears which doesn’t happen xx

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Yep, went through this for years. At first the flu like feelings were at period and ovulation time, but just got longer until they were all the time. Constant advice from GP's, friends etc. that I was run down and needed to take better care of myself, hints of the "its all in your head" from GP's.

Diagnosed myself in the end.

Have you had an MRI? It will usually show up endo bu most GPs and Gynaes don't seem to know this because it is only the more modern machines that can show it up.

Are you being treated through one of the BSGE centres as these are far better than the usual gynae. bsge.org/centre

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MRI came back normal apparently! I feel like they won't find anything in the lap even though I 100% know there is something very real wrong with me! But I'll just have to wait and see I guess. I'm quite lucky because I got an NHS referral to a private hospital with an endometriosis specialist gynae so I feel pretty confident if anyone can help me she can.

Thank you so much for your advice and sharing, honestly I feel better knowing I'm not the only one out there like this. Good luck xx

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Hi

I have the exact same symptoms as you. I constantly feel as though I am coming down with a virus or something. I feel sick and churning stomach most of the time. The tiredness never goes away and the pelvic/back pain is horrendous. I am going for total hysterectomy in December. Hopefully this will sort it out. I completely sympathise and hope you can get sorted. Don't let doctors fob you off. I have end and adeno x

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Thanks so much for your reply, it really helps to know I'm not the only one! Good luck with it all xx

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I also trying to see if my GYN can do a total hysterectomy next month. I can’t go any longer with this pain. I too hope with an hysterectomy will make things better. Good luck to you

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Oh I also get sore eyes. Have you googled sjergrans syndrome? X

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No but I will look into it, thanks! X

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Yes I have a lot of the same symptoms and now they have gotten worse since I been on my cycle. Yes my thighs are sore. I’m constantly bloated and my whole abdomen is tender to the touch. I too feel so so weak But try to do things but really don’t have the strength. Frequently going the bathroom to pee. Only time I have a bowel movement if I take laxatives. I never knew that endometriosis could make you feel so bad😞

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