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Endometriosis UK
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Am I right to keep pushing?

For years I have been complaining of extremely heavy periods, I have iron-deficiency anaemia as a result of the amount of blood I lose and the pain is excruciating. After being fobbed off with different contraceptive pills and stronger painkillers for years I was finally referred for an ultrasound. I (and my family) think i have endometriosis, and were almost certain that’d be the diagnosis but the result of the ultrasound was a cyst one one of my ovaries which “will probably go away soon, so we’ll do another scan in a month or so”.

Has anyone else had this but it's led to a diagnosis of more serious problems? Should I keep pushing for more tests? I just can’t believe that the awful pain and other symptoms i’m Experiencing are ‘normal’ when I usually can’t even get out of bed on the first two days of my period!

Sorry, long post but i’m Desperate!

5 Replies
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Yes, keep pushing. Endo can't always be diagnosed by scans - I had several (transvaginal and external) and they never found anything. I had to jump through every hoop possible, until I finally got referred for a laparoscopy, which is the most reliable way for them to diagnose you. I'm sorry you've been treated like this - it's so awful when doctors dismiss you. Like they don't understand that just because the scan didn't show anything, that you're still in pain. Good luck - it's taken me two years to be diagnosed, but I know a lot of women take even longer xx

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Thank you so much! It can be so disheartening when you’re constantly told that it’s probably just normal and then you start to wonder whether you’re just being a drama queen! Thank you though- i’ll keep pushing it,and maybe the next ultrasound will help!

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Hi El_mai

The fact that you can't physically get out of bed is a problem that should definitely be looked into.

You could have PCOS or Endo...or even both but, as most people will tell you on this site, the only way to actually diagnose Endo is to have the laparoscopy.

I had an ultrasound (long story- see my profile if you're interested) and they found a large cyst on my ovary - they described it as a 'chocolate' cyst that was likely endometriosis and to get investigated further. I then went on to my GP and relayed this to her and requested to be investigated. I have private healthcare with my work so I went through those channels but in the end it turned out I had stage 4 Endo.

I would say its definitely worth pushing for more tests, and specifically for Endo. If nothing else, definitely get your 2nd ultrasound.

Hope this helps.

Stay strong sister.

Mel x

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I’ve recently been diagnosed with endo after years and years of pain which eventually came to a head last year and resulted in a laparoscopy. If you feel that something isn’t right, then yes keep pushing. I had many scans including CT, ultrasound and x-rays which didn’t show anything or, like in your case a cyst to just rescan in a few months to check it had resolved. At lap they found widespread endo.

You shouldn’t be in that much pain and just have to endure it. It makes me so sad that so many women are in this position, being made to feel they are being dramatic and should just ‘toughen up’ If only the people who say this knew the debilitating effect of this pain on us both physically and mentally.

All the best x

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Yes, you must keep pushing. My initial ultrasound was called normal but I had stage 4 with bowel, bladder and ureter involvement. It was literally everywhere. Endo can be seen on ultrasound if they use a high res machine and the sonographer has been trained to look for it (and the lesions are bigger than 1cm) but all too often they don't have the skill.

The NICE guidelines for endo diagnosis specifically say that a normal ultrasound cannot be used to rule out endo. (section 1.5.2 here)

nice.org.uk/guidance/ng73/c...

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