Deep Infiltrating: Hi all, It's been a... - Endometriosis UK

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Deep Infiltrating

Alouette profile image
2 Replies

Hi all,

It's been a long journey so far, currently awaiting my bsge appointment, following a lap last November to remove endo. Since then I've been in daily agony, currently prescribed oramorph, gabapentin and transfer for pain, use electric stomach heater and a tens machine, none of which stop the pain, I'm in month 4 of zoladex after having to take a month off after month 3 due to waiting for a consultant to sign off, I would preferably have a total hysterectomy if it was up to me. But after months of fighting for an Mri, I got the results of deep infiltrating endo, the consultant wouldn't discuss details like where or how much. Past 3 weeks I am now getting severe back pain too.

The gynaecologist that gave me the Mri results told me they refuse to do another lap, because of possible adhesions, carry on with the zoladex, but we won't do a hysterectomy, and after 6 months you have to take a break for a year, upon which time the pain will be even worse and I'll have just pain meds. No other ideas, possibilities, options, nothing!!!! Every a&e visit involves being given more morphine and being sent home whether I can walk or not.

I cannot see an end, are the bsge centres really going to do anything more for me? I've tried every contraceptive method known to man since the endo pain started 9 years ago, what is actually left to help if anything? I don't live a life anymore, I just am, in my house, all day, every day, unless I have a joyful visit to one health institution or another.

Anyone have any tips on remaining positive as I just feel all out of it now, I've lost myself and am so petrified that this is it, it's not getting any better after this?

Sorry to rant, sound like a right miserable cow! X

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Alouette profile image
Alouette
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Starstellar7 profile image
Starstellar7

healthunlocked.com/endometr....

I didn't want to read and run. You need better care. This post has great advice in it.

I am looking for better treatment too.

Star x

Simo7 profile image
Simo7

I know how you feel, my daily routine also involves the sofa, medication and heat pads. You wonder how long it'll go on for! You're waiting for a BSGE appointment call them and see if you can get it any quicker, any cancellations etc. make a nuisance of yourself! Don't give up hope and Aloutte you're not a miserable cow you're a woman who is being pushed to the bloody max'!!! Wish you well xx

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