Feel like I'm going insane: I'm basically... - Endometriosis UK

Endometriosis UK

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Feel like I'm going insane

Jollie93 profile image
Jollie93
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I'm basically just here for a rant 😞 I had a laparoscopy last year to check for endo, had bowel adhesions which were removed and then a negative biopsy. Was told after surgery there were 'indications' but that I don't have endometriosis.

Got the mirena and things improved for a while, then all the pain came back. Went back to the gynaecologist recently with same issues and bladder issues. There was a plan to do another laparoscopy with a cystoscopy to see what was causing frequent urination and other symptoms, was sent for a pelvic and spine MRI first which detected spondylolisthesis so being referred onto neuro to deal with that instead, it was suggested that this could be the cause of all of my symptoms.

Still having strange bladder/bowel symptoms so had a urine test on Monday and the GP phoned today to say there's microscopic blood in my urine, and they want to investigate why. No signs of infection etc. I've now just received a letter from the same doctor who told me I don't have endometriosis, saying "You have known endometriosis but I'm reassured that I reviewed the scan and you have a very healthy pelvis with no evidence of any recurrence of endometriosis"

Am I interpreting this wrong or does it say exactly what I think it says 😑 I'm just baffled at this point.

Maybe he's thinking of another patient but I'm fed up. I'm planning to email the consultant to get clarification as to whether this is a mistake but why is every single appointment/consultation a battle.

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Cailleach profile image
Cailleach

It’s tough out there isn’t it? I often read of people being told they have adhesions etc but don’t have endo. What caused the adhesions then?

I guess you need to let the the neurologist do their thing and if they can’t account for your symptoms, then it’s back to gynaecology. Are you seeing a general gynaecologist or is it a centre specialising in endometriosis? It should really be the latter if you are found to have bowel and bladder involvement.

Well, good luck.

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