What does your endometriosis feel like?

Pretty much what it says above!

I have my first gynaecology appointment coming up soon (I'm still undiagnosed) and I'm beginning to doubt myself and my symptoms, even though I know I shouldn't...

Can anyone tell me what their endometriosis symptoms are from day-to-day, and if they vary? Some days it's bad, but others I feel 'normal', with just a vague uncomfortable feeling in my pelvis... like I can't sit or lie down comfortably. Can anyone else relate?

Thanks in advance! xoxo

9 Replies

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  • Hiya. There's some replies on my post from a few days ago asking similar, which may help x

    healthunlocked.com/endometr...

  • Thanks for this fuzzyfrog, I'll have a look! X

  • Hey,

    Sorry to hear that you're suffering

    I think each persons endo symptoms differ and feel different however I completely understand curiosity when you're undiagnosed!

    For me it's extreme pain and other symptoms at the time of my period. The rest of the month I have uncomfortable aches and occasional shooting pains up the back of my legs and deep in my pelvis. I also get electric/sciatic pains. Tiredness and bloated feeling are also a really bad part of my endo.

    What are your symptoms if you don't mind sharing?

    Take care xxx

  • Thanks for your reply! It's interesting to compare even if I don't know for sure what's going on down there just yet...

    When I'm on my period I get quite nasty cramping, it used to be just then - and ovulating - that I had pain (I'm on Mirena coil now so haven't had a period in a while). Then the ovulation pains started lasting for days. And my periods started lasting around 12 days. And eventually I just ended up having deep pelvic pains on any day at any time during the month (but worse before, during and after period). At its best it feels like a dull ache most of the time like I described above, just uncomfortable and almost itchy at times, deep inside... weird, I know. I'll get random twinges from deep inside too if I bend over too fast or sometimes when I'm just sitting. And thinking about it, if I need to do a big wee, it hurts sometimes towards the end, like a pulling feeling as my bladder shrinks...

    Another gross thing is that passing stools can be very uncomfortable, I get this horrible cramping stabbing pain before I'm about to go in my deep lower pelvis and sometimes in my rectum too. I've also started to have loose stools near on everyday now - but seems to be the day after I have this pelvic ache. (I've been told I might have IBS quite a few times, but this symptom developed AFTER that).

    Besides that, sex can be painful deep inside my lower pelvis. But I've recently started to bleed and get cramping for a few hours to a day afterwards - which is quite off-putting for both parties involved.

    I just want to know what's going on in my body because whatever it is its definitely getting worse - even though I had the Mirena coil put in.

    Sorry for the long reply - didn't realise quite how much I had to say :(

    Hope you are well Xxx

  • Don't think you have any reason to doubt yourself, those symptoms sound awful. Write a list like that and take it with you to your appointment. Good luck. Xxx

  • There are definitely women who have it horrendously worse so I see myself as lucky- but it does put it into perspective when you compare yourself to the 'normal' women around around, sisters, friends and the like.

    Thank you, it's good to be listened to sometimes - I can't vent to my friends because I think they're starting to get annoyed ( as i am!) xxx

  • Absolutely! Some people just have a bit of bleeding and no pain at all, barely notice they have their period. But I didn't realise this until much later, I just thought my symptoms were normal. Showing my age, as we didn't have the internet so no forums, and we didn't talk about these things, still don't enough. I didn't know I even had endometriosis until we started trying unsuccessfully to have children. I'm very lucky, though, because I didn't have severe pain, but have stage 4 endometriosis.

    Keep venting!! Xxx

  • What a sad way to find out you have it :( I hate to hear other people's stories

    I will keep venting indeed!

    xxxx

  • Thank you. It was incredibly hard at the time, but I have since been incredibly lucky as I had IVF and have two daughters.

    Xxx

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