Endometriosis UK

Desperate for a diagnosis!

Hi everyone, following on from my last post I have finally received my biopsy results from the hospital following my colonoscopy, I have been given the all clear of any bowel issues or bowel disease. Feel like I am right back at the beginning again now I am being referred back to gynae, I am so sure I have endometriosis as mentioned in my previous posts and this last week has been absolute hell, up until late July I was having prostap injections but these were stopped as my consultant didn't feel I was having a good enough decrease in pain although it was helping slightly. Since stopping the injections my pain is a lot worse and has now got to the stage that I am taking oramorph most nights before bed, I have been given some Nefopam to take to see if this helps with the pain. I have lost my appetite due to the pain I am in and can not afford to lose any more weight. I am just wondering if anyone else is in the same situation as I am and how you are going about getting a diagnosis? Has anyone noticed a difference in the care given between going private and going through the NHS as I feel if I could afford it I would be taken more seriously and not be constantly told it's in my head!! Any help or advice would be really appreciated, thanks x

1 Reply

Hi there,

Bless you, it so frustrating when we just don't get listened to and keep being passed from pillar to post. They give the impression and make us feel like we want to have this chronic disease for a status or something..when all we want is some answers so we know where we stand and what we are dealing with and can try get some help.

If I understand correctly, endo on the bowel doesn't usually show during a colonoscopy unless it is deep infiltrating..but it doesn't mean there isn't any just cos not showing as may be on the surface. Or if endo is on other organs these could be affecting it due to being adhered to the bowel.

If you are not already, I'd ask your GP for a referal to a BSGE centre not a general Gynaecologist. I am currently at one and it the first real time (so far) that I have been listened to properly and not like I'm a nutter! It is available on the NHS too!

Wishing you all the best. I know it is hard, but stay strong, you are doing so well and keep fighting. You will get there...one day.

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