Struggling to deal with diagnosis - Endometriosis UK

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Struggling to deal with diagnosis

Mell94_ profile image
6 Replies

Hi, I was diagnosed August last year and thought I was dealing with it quite well until recently I'm in more pain now after my diagnostic lap and ablation than I did before. I went back to the gynaecologist early and was put on decapeptyl injections which made me feel horrid. I'm waiting until next month to see the gynaecologist again to see what my next steps are. I feel like I've not got anywhere, is there anything any of you can suggest for me to say to him? I'm currently waiting for a counselling appointment but the waiting list is quite long, I feel like I've got no one to talk to about all this, my boyfriend listens but I don't know if he really understands. I honestly don't know what to do.

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Mell94_
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6 Replies
MeganMae profile image
MeganMae

Hello, I'm sorry you feel so alone through this, it really is a hard journey.

I would suggest that you say that you aren't happy with the ablation surgery, it has only made you worse and you want excision surgery, at a BSGE centre.

Say you don't want to be put on medication and you feel the only way you'll benefit is from surgical help, if this is how you feel!

I felt 10x worse after my first lap/ablation, with a general gynae, I didn't know about BSGE centres or excision, so I hope if you look into it, you can see the help that you deserve/need from the specialists!

Don't let the doctors fob you off, if you ever need to talk, I'm here xxx

Mell94_ profile image
Mell94_ in reply toMeganMae

Thankyou my boyfriend's not ok happy with them as iv still not had a post op from 24th August last year, I have no clue how much was found or how severe it is. I've had injections for the past 5 months to put me in a medical menopause, thats just made me worse to be honest. I'm gonna see the gynaecologist and see what he suggests and if it's not good enough I'm requesting to be referred elsewear. Thank you for replying to me.

Heloo85 profile image
Heloo85 in reply toMell94_

I had excision surgery back in december .. My surgery was complex surgery .. I am 5 months on and still worse off! Surgery is not necessarily a cure, no mattee what surgery it is! .. If i could give you advice i would, but i just want to say i know how devestating it is when surgery fails!

kimiebear profile image
kimiebear

If you have endometriosis, ask about the Lupron Depo shot as an option

Mell94_ profile image
Mell94_ in reply tokimiebear

Ive been put on decapeptyl injections yo put me through a medical menopause and it's only made me worse to be honest, but thankyou for the suggestion.

kimiebear profile image
kimiebear in reply toMell94_

Oh ok, it was the only thing I found to work, and the hot flashes and whatnot were nothing compared to the bliss of not feeling the way i do now, which is like i have the damn flu, cant keep anything down, acidy muscle aches etc. meh. I wish i could go back on it.

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