Ever changing symptoms : Hey lovely ladies... - Endometriosis UK

Endometriosis UK

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Ever changing symptoms


Hey lovely ladies, just wondered if I could get some insight into how often symptoms change... I feel like I don’t have a normal range of symptoms and there is always some new niggle and it’s making me Feel really neurotic, always wondering where this pain is from, why does this bit hurt today... is this endo or not.... I feel stuck on a worry loop... how many of You are always in symptom flux and how many have a set cycle of symptoms?

Also, I had a lap well over a year ago and have not had any follow up since having my mirena taken out 9 months ago... I feel rather left alone and like the doctors have shrugged me off rather than any continues monitoring... seems crazy that I’m not offered routine scans/ meeting with a specialist... do you all have to ask? Or do You get offered monitoring?

There are so many of us but it’s still such a lonely place when your pain is so deep and not at all visible (except the dreaded endo belly)

2 Replies

I’ve had my surgeries at a BSGE centre and I’m being followed up with regularly. I receive questionnaires to complete about my symptoms. Xxx

I'm also at a bsge and am on repeat follow up at six month intervals atm and able to contact secretary or endo nurse if I have a problem. I've also been referred to the pain clinic specialist which is best practice I believe. I found this helpful with all my odd symptoms, cfs, joint pain, chest pain etc. I now see a pain physio and a pain psychologist, am on new medication for functional pain. I think your gp can refer you.

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