New to all of this... some advice and sup... - Endometriosis UK

Endometriosis UK

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New to all of this... some advice and support would be so great 😊

LuciaJayne86
LuciaJayne86

Hey all!

I’m new to Endometriosis as a whole...

I’ve heard about it before, but never really understood what it was... until a couple of months ago, I went to my GP with ungodly menstrual cramps, and she is 99% sure I have it.

I’ve always suffered from painful periods, but as I’ve got older (especially in my 30’s) it seems like each month gets worse and worse. The pain is unbearable! I take 1000mg Naproxen and 4 x daily 60mg Codeine, and the pain doesn’t go! I use my TENS machine, have a constant hot water bottle, but it doesn’t stop the debilitating pain.

So, I called my doc again today, and he was nearly forcing me down the hormonal route... which I do NOT want to go down, because they don’t agree with me! The side effects are horrendous, and I don’t want to go through that.

I said, I’ve heard you can have surgery, but he was suggesting they won’t do it, unless I go down the hormone path!

I’ve got a face to face appointment in a couple of weeks with the doctor again, to discuss everything in more detail, and I am going to stand my ground and not be forced into masking this with hormones!

What are your thoughts? What are my options?

I feel kind of helpless right now... as well as doped up on codeine, and absolutely physically and mentally drained.

Thank you all!

X

2 Replies

Hey, sorry to hear you’re suffering in pain rn.

They won’t do surgery until you try at least 1 or 2 hormone treatments as it can help stop the pains etc. Surgery is last resort when nothing else has helped your pain. I’m 19 and had my lap a few months ago. It was long battle of trying a bunch of painkillers and hormones before I was considered for a lap as the pain was affecting my career etc.

I’ve struggled for a few years on different hormone treatments but I have to try the injections soon. I’ll just have to ride the side effects out until they settle.

Obviously you have a choice not to go down the hormone route but it’s not so much masking up the problem as if the body is not producing the hormone related to endo, then it won’t grow etc and some pills can destroy endo apparently

Hi Lucia,

Depending on how severe the Endo is, they might suggest you have surgery anyway. Make sure you get an MRI and go to an Endo specialist. GP's rarely know much about Endo. You don't have to do anything you don't want to do, up to you if you want surgery at the end of the day - there will be an Endo surgeon that is wiling to help you.

P.s. I have severe Endo and the doc said I need surgery even though hormonal treatment has helped with my symptoms.

Good luck!!

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