mri didn’t show deep infiltrated endo

[Saha1]

hi I’ve been in absolute agony for years was diagnosed with endo about 8 years ago. Was put in temporary menopause then given mirena coil. I have pain constantly in my bottom right abdomen and initially got told I must have pulled a muscle in the gym. The pain is so bad sometimes I’ve been to a and e.

Anyways I kept going the doctors who told me I had a cyst on my ovary but it will go during my period (I have not had a period since I was put in menopause and rarely had them before). I was sent for ultrasounds who advised that it’s fine it’ll go but it’s not a big cyst anyway. After 6 monthly appointments for 2 years the pain was still there

I still kept going to the doctors and was put on a 3 year waiting list to be referred in the meantime the pain is so bad it’s like it presses a nerve and I lose feeling in my right leg. Go for an mri scan to see if it’s deep infiltrating endo and they’ve sent a letter saying it’s not I’m at my wits end the pain is horrific and spreading.

Has anyone had similar where it basically seems like nothing is picked up but the pain is horrific I cannot walk

[Comedykid]

this sounds like me! I kept going and kept getting told nothing despite not being able to walk because of the pain at times and reacting to when doctors pressed on my side. I got an MRI and was told there was nothing wrong. I then got a second opinion from an endo specialist privately and they have picked up from the same MRI that I have a cyst I was not told about, suspected endo on my appendix and suspected endo on my uterosacral ligaments.

I would recommend if you can getting a endo specialist to look at the mris for a second opinion and seeing what they say. I hope you get some answers

[Saha1 in reply to Comedykid]

Thank you so much I will definitely try to it’s been years and it’s unbearable pain all the time. It’s just ridiculous how many times you are fobbed off isn’t it I hope you are doing ok now and have some sort of good management of it xxxx

[Endofitall]

sorry to hear what you’ve been through. An MRI that is not appropriately done (eg right prep or contrast) or interpreted is a useful as a chocolate teapot. I had one, without contrast or bowel prep, told no DIE. At laparoscopy by a BSGE centre I had severe rectovaginal endo.

Also remember pain can be severe with “superficial pelvic disease” so fact it’s not seen on MRI is not diagnostic of your pain. When you said you were diagnosed was that via lap at a BSGE centre or was it clinical diagnosed based on symptoms etc?

It sounds like you need to see a more specialist team.

Best of luck