CT showed up possible endometriosis but MRI completely normal. Has anyone else had this?

[BethanW2]

I had a CT scan at the beginning of March which showed diffused thickening of the small intestine and an ovarian cyst (didn’t get told what size). The radiographer beloved this was consistent with Endometriosis, so I was then booked on for an MRI, which I had a week and a half ago. I got the results back today and they said there was no thickening and everything looked normal. I’m confused how the CT showed up one thing and the MRI nothing. I had some relief after the CT results that I may finally have an answer for all my horrendous bowel issues and there would be a treatment plan for this. Had this happened to anyone else?

Bit of back story:

I’ve always had a lot of bowel issues since I was 15years old (now 32), after having gastroenteritis.

Since having my first baby December 2021, my bowel issues have got worse. I’ve had constant pelvic and abdominal pain, nausea, diarrhoea, lost the ability to digest fats amongst other symptoms, and since around September last year have suffered with constant Tenesmus. All these symptoms are every day and wake me up through the night. I am also seeing a rheumatologist as it’s become apparent I am suffering with an auto immune disease due to fatigue, pains, bruising on my fingers, and blood tests that are positive. My rheumatologist said these blood tests are positive for those with Ankylosing spondylitis (father has this), and also in inflammatory bowel disease. I am due to have a colonoscopy in a couple of weeks time. I am beyond fed up and rarely get out. A car journey to the shops is traumatic enough with the constant Tenesmus. We don’t go out out to eat anymore as I can’t even make it back from a restaurant, even if I stick to my “safe food”. I want to be able to get out, socialise, go on holiday again, and above all of this take my 16month old to groups and days out.

So grateful for any responses. Thank you.

[persil]

Hello are you under an endo specialist? Have you tried FODMAP diet but under dietician. This might be a start I don't think there a cure but Mirena coil and add on mini pill helped me. Get in touch with Endometriosis society Good luck hope you get some help.

[BethanW2 in reply to persil]

hi,

I’m not. I wasn’t even expecting this to be a possible outcome of the CT scan to be honest. My gastro consultant referred me so they could see if anything showed up gastro wise. The radiographer saying he thought it was endometriosis was completely out of the blue.

I’ve been doing the fodmap diet for about 10years, I’ve always been aware of some of the foods I can’t have before this. I speak with the dieticians and everyone will always say Fodmap diet. But it doesn’t give any more relief sadly.

I had another mirena coil fitted last June, this time it’s taken up until about a month ago for the daily bleeding to stop though.

Thank you, I will definitely get in touch with them. Thank you for your response.

[SCords]

Hi! I recently had an MRI on my pelvis that showed no endometriosis but during my surgery a couple months later they found it everywhere! I have recently read that endometriosis will only show up on an MRI with contrast but getting a doctor to book that is impossible “too expensive”…

[BethanW2 in reply to SCords]

oh my goodness, you poor thing. They gave me bowel prep (which I reacted horrendously too) and contrast injection. But still said everything looks fine. I’m just wondering where everything they saw In the CT scan disappeared to.

I’ve been off work since beginning of January, fortunately I am still employed, so trying to use my health care. It’s quicker than NHS, but even private they’re struggling with waits. I’m grateful of course, but I just want to be happy again and feel well enough to enjoy my baby more.

Thank you for your response.