Endometriosis UK

how dis they diagnose you

hi i have a lump between womb and bladder 3.5cm x2.5cm seen it on mri scan.had no biopsy but doctors just say they think itr is endemetriosis and i need to have a hysterectomy and possibly part of my bladder removed.i dont have heavy periods or cramps,all i have is the constant need to urinate ,pain on urination and a pain in my right side that feel like their is a balloon under my ribs.i have had the pain in my ribs over 3 years,i am worried that they are just guessing what it is,has anyone had a hysterectomy only for them to find something else there once they do biopsy,i am really worried but doctors dont seem in any hurry.any info appreciated

4 Replies

Hi Sonya

These days, doctors can make fairly educated guesses based on what they see on scans, but endometriosis can still only be definitively diagnosed by way of a laparoscopy.

Are they saying that you need the hysterectomy and bladder reconstruction because of endometriosis? Or do they think that there is something else involved?

Also - a hysterectomy is not a cure for endo anyway, so on all levels they seem to have come to a pretty radical decision purely on the basis of an MRI scan

If I were you, I'd ask why they aren't going to do a laparoscopy first so that they can see exactly what is going on in there. Certainly compared to a hysterectomy, it's a fairly small procedure.

It's your body, and hysterectomy is a big deal. Don't let them push you into it

C xxx


hi chrissie,they reckon i need the hysterectomy to get the lump out because of where it is,i am also not allowed keyhole because they say lump is to big and because they need to see if it is just pushing against my bladder or has gone through the bladder wall.i really dont want it done but they said there was no alternative.i am only 39 and like i said dont have any problem with my periods.when i first had mri they did day about a cystoscopy to get a biopsy but didnt mention it anymore,but you know when you have a gut feeling,i just dont think i have endemetriosis.but cant get anyone to listen or answer my questions,i phoned hospital today but just got answerphone message.


Hi again Sonya

Hmm. I understand what they are saying about not being able to do it via keyhole surgery if it is a lump and not a cyst, that makes sense.

It sounds to me as if they have changed their minds about what they saw on the MRI scan

I think you need to make an appointment with your GP and take a list of questions with you. He/she will have been sent the results so will know what you're talking about and might be able to give you more information. If not, they might be able to write to the hospital for you. In any event, you'll feel as if you've done SOMETHING, it's the not knowing and not getting answers that's such a bloody pain, isn't it?

Good luck love, and don't let them do anything that radical until they have given you a satisfactory reason why - it's your body, after all! xxxx


hi chrissie,i have appointment thursday with the urologist so hopefully he will tell me a bit more info.take care from sonya


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