Adenomyosis and deep infiltrating endometriosis

[Panwendy]

Hi guys I’ve finally had my results back from my MRI and they have said it’s suggests I they think they can see Adenomyosis and suspicion of deep infiltrating endometriosis on my right side, I’d never heard of deep infiltrating endometriosis until I got my letter but what I have googled it’s sounds like one of the worse kinds. Has anyone else ever been told something similar!as this has scared me a bit after reading about it x

[IB15]

Hi,

I have been diagnosed with similar, I am waiting for my next surgery with a colorectal surgeon alongside the endo specialist. It can be scary to read about!

Have you spoken about your options with your consultant?

Sending love x

[Panwendy in reply to IB15]

I’m due to speak to a consultant soon as I’ve been transferred to a better hospital to deal with me properly!! So I’m still in limbo at the minute but I really just want to get my 1st operation out of they way so they know what I have and where I have it so they can get it out! And your totally right it is scary to read about 😩 what options were you given x

[IB15 in reply to Panwendy]

The waiting is the worst part! That's great your being sent to the right place, make sure it's an endometriosis specialist you see and request a consultation so you can talk through your options, it's good to explain how it's effecting your life and what you would like to change the most!

The good thing is now they have the MRI results they should be able to do the operation with all the correct people and get it sorted for you, you can always ring the department to see where you are on the waiting list for the op.

Personally I am on the progesterone only pill until my next operation - it has helped significantly but doesn't solve everything. Have they offered you anything while you wait?

x

[Panwendy in reply to IB15]

I’ve been given the prostap injection in my tummy on the mean time but it hasn’t done much 🙄 but hopefully I won’t have to wait much longer 🤞🏼 X

[IB15]

Sorry to hear it hasn't helped a lot, It can feel like there are so little options sometimes. If it isn't helping it might be worth ringing gyny and asking to speak to an endo nurse?

The endometriosis hotline is honestly wonderful as well, they are so supportive.

I hope you get seen soon and that it brings you lots of relief xx