New to Endometriosis

Hi

Im new here and don't really know where to start but glad i have found somewhere where people seem to understand what i am going through. I have just been diagnosed with endometriosis and endometrioma and I'm a bit overwhelmed about it.

I have been struggling for the past 3 years to get a diagnosis as i was getting told i had IBS and being made to feel i was just being a bit over dramatic really but i knew it was something more so at least i now know i wasn't going crazy!

Im just feeling really scared about the next steps like the operations etc and the thought of maybe not being able to have a baby scares me and is making me feel really down and i just don't know how to get myself out of feeling like this.

I also have been in terrible pain the last 5 days an not able to get out of bed much, is this normal?? The pain is on my left side where they said i have a large cyst on my ovarie but no amount of inbrophen or codeine seem to be taking the pain away and I'm not in hospital again for my next appointment until mid october. Is this something everyone gets does it usually go after a while?

thanks xxx

4 Replies

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  • First things first you are not alone. I am 23 and I've been diagnosed with Endo too, It's horrible.

    Yeah. I too was made to feel dramatic for pains and I was always told it was IBS.

    If you feel you need medical help before then... push to go. If your in that much pain something isnt right, call 999! You won't be a timewaster! Even if you have to milk it a bit more.. because if your large cyst bursts, your going to be in a lot more bother!!

    But the pain, I hate to say this. It's going to be ever so difficult to manage! Have you tried stronger pain killers just to ease your pain? It might help!

    As for getting out of bed, try and get up and out as much as possible I know it's hard.. trust me I do! But walking around will help you feel better in the long run even if you don't feel like it!

    I hope you feel much better soon. ❤️

  • Thank you so much for your reply :)

    Yes i think that if i am still like this by the morning i will have to go to the hospital incase something more is going on with the cyst.

    Just knowing people are going through this swell and its not just me makes me feel so much better and I'm not going stir crazy!

  • It is overwhelming, I know :) I had a diagnostic lap a few months ago and felt the same way. I had been trying to conceive for about a year already, and was put on the IVF waiting list because of the endo. But now I find myself 5 1/2 weeks pregnant. Early days but didn't expect it to happen naturally at all. There's quite a few women on here pregnant with endo at the moment. So, don't worry too much about that. I hope you feel better soon. Do you know what your next steps are, or do you have to wait for a follow up appointment? xx

  • Hi Sandarella13, wow congratulations! thanks for that i feel much better hearing there are women on here who have managed to get pregnant as i get married in november and the plan was to try for a baby after so i think that part of it has caused me to feel really overwhelmed as i went from having had no idea i had this and thinking i could start my family straight away to the realisation that i may be quiet a struggle and involve some surgeries.

    I have my follow up on the 18th October to discuss lap but I'm trying to get it sooner or go private as the pain is getting worse and i also have my wedding and honeymoon in 7 weeks so have no idea what I'm best doing!

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