Endometriosis UK
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Am I expecting too much??

Hello lady’s,

I’m after advise... i was first diagnosed with endo in March 2016, I had extensive surgery again in October 2016 to remove endo from my pouch of Douglas, bowl and urethra. I had a coil fitted in Feb this year to control my periods as post surgery I carried on spotting on a daily basis. For the last few months the original pain (that’s in my left side/ovary/join area) has returned with a vengeance!! My family think it’s in my head... iv been to a physio and trying to strengthen my core, I’m trying to be heather with food although I’m not over weight, I’m trying to do the whole ‘endo diet’ but I suck lol🙈 I love food to much!! But this pain is more painful than the original pain I went to the doctor for🙈 iv been very well looked after by an endo specialist and now under the care of a nurse specialist, iv had my first check up and explained everything to her but she’s basically told me to expect to never be pain free..... she’s told me to follow this ‘lifestyle’ but I’m 27 and life is for living lol!! My next check up is in 6 months but I’m worried about this pain... it’s so much worse than before.... do I wait 6 months and expect it to be better?? Am I expecting to much wishing I didn’t need painkillers on a daily basis? I’m I wasting there time if I starting asking them to look again? Has anyone ended up feeling this shit after having ops done??

Lol I’m not sure if Iv asked a question or just moaned but anyone’s advise is needed!!

Xxxxxxxz

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Big hugs xx It does sound like you have had major surgery and quite a rough time of it.

Firstly the coil itself can cause pelvic pain and sometimes takes up to 5 or 6 months to settle. I had mine taken out after 5 months as it failed to settle with me and my pelvic pain did stop.

Secondly the body, if subjected to chronic pain for a long period can overload the pain channels and develop what is called neuropathic pain which is the body registering pain where there is no longer a pathology causing it. Retrainpain.org explains this well, its not " in your head" its just how the pain system woks. It may be worth asking to be referred to a pain specialist or clinic as there are meds that help if this is part of the problem.

That said, your nurse is right insofar as diet and lifestyle measures can play a big part in moderating symptoms and improving health overall. Perhaps a good start might be to keep a food diary and see what you can correlate with worsening symptoms? Or just eliminate one common trigger thing, whatever you think the easiest, for 3 months and see how you feel. Small gradual changes over time are more sustainable than drastic measures all at once.

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