Had enough

[Jemma97]

Hey it’s a bit of a rant but I’m also looking for advice, I was diagnosed with endo in June last year and none was removed since then I have tried two different pills and I’ve also been on the prostap injection for 3 months, none of these have managed to improve any of my symptoms, I bleed on everything I’m on and my pain is getting considerably worse to the point I’m having to take time off work now because it’s unbearable, will I be able to request an operation to remove the endo, I’m fed up of being given different hormones and having to test everything, I’m 22 and this is impacting considerably on my mental health now, I just want to live a normal life

[K-Endo]

I’m really sorry to have that , why did they not removed the Endometriosis when you were diagnosed? I would seriously suggest making a GP appointment and explain your continuous symptoms and point out that you’ve ‘trialed and error’d’ everything you can and now it’s impacting on you seriously both mentally and physically. Unfortunately with this whole situation in my own experience the only way you are listened to is to constantly make yourself heard. Even if that means making a GP appointment every month or more if you can , get a paper trail going so they don’t have a choice but to listen. I had a GP appointment this morning and actually took with my a copy of the NICE guidelines for Endometriosis and basically highlighted the majority of the contents and said this is what you should be doing ...

[K-Endo]

To hear that **

[K-Endo]

Apologises for the spelling errors I’m tired lol x

[Jemma97]

That’s actually so helpful, I didn’t think about taking the nice guidelines with me but I definitely will! I literally had to beg for an appointment with my gynaecologist and they gave me one for may after saying I didn’t need one and one receptionist refused to book me one! I complained to pals and I’m seeing my gynaecologist on the 9th March so I’m going to demand an operation I think because I can’t carry on like this!

[K-Endo]

Yes unfortunately like I say for me the only way I’ve got anywhere is just by being so persistent which don’t get me wrong is just not realistic because it completely takes over your life , it affects work and my family. And all the while you’re doing all of this chasing and becoming frustrated and feeling helpless you’re also dealing with all of this pain.

I was diagnosed in May last year with stage 2 in my pelvis however for the last decade or so I’ve been struggling with ‘IBS’ I’ve been under gastroenterology the majority of that time so anyway after trying literally every medication possible , every diet possible and having a ultrasounds , a colonoscopy and an endoscopy ( with the recent endo diagnosis ) I just said can we just book me in for an MRI I’ve tried everything and nothing is coming back from the results I said if it’s in my pelvis maybe it’s on my bowel too?

Well low and behold it IS , stage 4 and has attached my womb to my rectum. So maybe had I not of insisted on having that MRI I’m really not sure I’d be any the wiser today and would still be getting pulled from pillar to post with ‘IBS’.

So it just goes to show.

I’ve heard so many women say that yes these consultants are intelligent and qualified etc etc but they don’t know your body. Only you do and only you feel what you feel. Just keep at it , you’re in every right to be listened too. X

[Jemma97 in reply to K-Endo]

It’s a really disgusting that we have to fight this much to be heard! As if getting a diagnosis wasn’t hard enough already! I’m so glad you were listened to though and you’ve finally got answers! It’s very true as qualified as they are we know our bodies and we know when it’s not right!x