What's my next option?

[sprinkle-pants]

Had my lap in January this year where they removed some tissue and inserted a mirena coil. Was in absolute hell for the next few months as i was told "i'd have to wait 3 - 6 months" to be seen again. I waited 8 months. Put on Decapeptyl SR injections (i'm terrified of needles by the way, so i've been very brave).

The endo and HRT have caused me to become so depressed but i'm now on sertreline and have stopped taking the tibolone, but i can't be put on an estrogen patch because it could cause me to stroke.

I'm in pain every single day and bleeding 90% of the month.

I'm terrified there aren't any options left to me? I'm 23 and have had my life taken from me by this condition. I can't pursue my career or my hobby and if it can't be solved soon, i don't think i'll be sticking around.

[Christin_a]

Hello

I just want to reassure you that there are still options.

Do you know what stage your endometriosis was when you had surgery? And did they remove all the endo they found? And did someone with either a specialist interest in endo or a endometriosis specialist perform the surgery rather than just a general gynecologist?

This can help me let you know what the possible next steps could be and if they are something you are automatically entitled to on the NHS or not

[sprinkle-pants in reply to Christin_a]

It was a gynecologist with an interest in endo, I'm pretty sure she does a lot for endometriosis.uk. Nobody has mentioned any 'stages' to me at this point but I am sure I can find out. I'm also booked for another ultrasound in a months time.

What other options could there be?

[Christin_a in reply to sprinkle-pants]

Hi

Okay so depending on the stage if you have stage 3 or 4 (sometimes referred to as moderate and severe or deep infiltrating) you should only be seen by a BSGE centre. These are specialist centres for the treatment of endo and include things such as pain management, specialist nurses etc. And in the UK if you have stage 3 or 4 you must be referred to one of these centres, even if your Dr has a specialist interest, as the people who work at the bsge centres are specialists.

Options you could try, asking for referral to pain management clinic even if you have a lower stage. And even if you are at a lower stage you could ask to be seen at a bsge centre for a second opinion (this can be difficult to get but definitely worth trying).

What's the ultrasound to check for? Have you has cysts or endomerias in the past? This can sometimes indicate one of the higher stages (just means there's more of it/deeper infiltrating than others)