Endometriosis UK
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Putting up with pain

Does anyone who hasn't had a diagnosis ever think you've got so used to the pain, that you start to think maybe it is normal?

For example I've woken this morning, taken kids down for breakfast and made a cuppa. I've been jolly and excited with them talking about Santa coming tonight etc, but the whole time feeling a pulling stitch like pain on my right ovary (odd as most of my pain is usually on the left) and when coming back upstairs feeling quite sore as I lift my right leg. Yet to everyone else in my house, I look like a happy pain free mummy going about my morning?!

I'm rambling a bit, but what I mean is.....unless it's significant pain and intense enough to make me stop in my tracks or shout out, no one really sees that I'm in constant pain, and because I'm learning to just act normal, it's making me think maybe it is normal. Maybe people do just put up with this. Maybe I'm making a fuss over nothing.

Then I have to tell myself that 2-3 years ago this wasn't happening! That the only time I'd feel cramps, and back ache and pains down my legs/hips and feel low and sad and miserable was for a few days during my period. Not most of the month.

It really messes with my head all of this. Trying to keep strong and listen to my body and keep believing that something is fundamentally wrong and not doubt that the whole thing is something I should just deal with?!

I have my laparoscopy booked for 15th Jan, but I feel the anxiety leading up to that is going to really affect me. I've just got visions of waking up to be told I've wasted everyone's time and that I'm a hypochondriac who's made it all up?

Guess i just wanted to know if I was alone or whether this was a common feeling? Did anyone feel like this beforehand and then find they were right and did have endo?

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I have the same worries as you.. I know the feeling of sometimes being in so much chronic pain that you forget about it for a bit, only to be shocked by it soon enough again. It really is not normal to be in such pain all the time.

I worry like you about my future laparoscopy surgery, and the doctor not finding anything... I think you are valid and not crazy for worrying about this.. but at the same time maybe you can take comfort knowing that:

1. If you do have endometriosis it will finally be found!

2. If you do not have endometriosis, maybe they can discover a different issue such as PID or polyps that they might have not been able to see before.

3. If anything you know what can be ruled out and what to research or seek tests for next.

These are the thoughts I try to keep in my mind through all this & remind myself when people think me getting a LAP is drastic. I wish you nothing but the best with your health & Happy Holidays!

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I feel exactly the same way!

I too am due to have a lap in january just waiting for a date.

Im also worried that they may not find anything an that ive wasted everyones time.

I have to grin an bear my pain around certain people as all i get is "oh stop over reacting" all because its not a visible pain.

This pain is definitely not normal and not something we should have to get used to.

I hope you get the answers you are looking for.

X

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I felt exactly the same. I was in constant pain but because I was able to push through it and still go to work/act normal for the most past, I felt like a fraud. But I had my laparoscopy on the 11th December where they confirmed endo. I was so anxious they wouldn’t find anything, but also that they would find endo. Such a conflicting feeling. Just know that you’re doing the right thing to get answers. It makes me so sad that being in pain becomes our ‘normal’

I hope you get answers. You’re definitely not wasting anyone’s time.

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I totally get you too. I've not got very far with convincing the gyne that it may be endo yet and then doubt myself it might not be, but know like you that life wasn't like this with my periods a few years ago. And almost constant odd pains all around pelvic area. And I'm sure it's not just IBS like the gyne says. (Had those symptoms for 15 years but this is very different). Keep the faith, kateka22 put it well. And keep us posted X

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I know what you mean. After a long time I finally got my diagnosis of umbilical endo (essentially my belly button bleeds when I'm on my period) it is bleeding right now and I am in pain anytime I move. However, it's almost become background noise now and I am on my way downstairs to have Christmas day with my family where unless my belly button decides to bleed through onto my clothes (which does happen) then no one will know the pain I am in as I won't tell them. I used to but then I thought why am I telling them ? It makes no difference and they can't tell most of the time anyway unless it is really bad and then my movements might become slower. Don't give up though !! It is horrible waiting for the diagnosis and please do remember that endo is a sneaky little thing and does not always show but it doesn't mean it's not there! I know someone who had 3 laps before they got the diagnosis. It's also getting a lot more mention in the UK media here too as it's claimed it can take 7 years on average to get the diagnosis so there is pressure on docs to significantly reduce this. I wish everyone on here the best and a merry Christmas! !! We are not alone in our pain !

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Definitely, i think as that as pain creeps up on you as the endo starts that by the time it's bad pain has already become normal. Only when sex became v painful did I go back to GP, by which point I have stage 4 endo and adenomyosis - should have acted sooner. However strangely you do get used to pain and get on with it.

More needs to done to raise awareness of what is normal and what is a warning sign.

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Thanks for all of your responses! I've been in such pain today of all days. Came on my period on the way down to my mum's for Xmas! The pain was so intense I decided not to drink so I could take codeine. Ended up sat on the sofa after Xmas dinner in tears, felt like my entire womb area was burning! 60mg of codeine and two paracetamol later and it was finally bearable. My partner said to me, that's the reason you're having this laparoscopy, that's the reason you are not wasting the doctors time. Period pains should not make you feel this way! He's right, and in a weird way I'm glad I felt this awful today - it's not normal and needs fixing. Merry Christmas all xxxx

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