Still not convinced

[Hermi_t]

Hello, i have not been diagnosed with endo yet but am still waiting on appointments to follow up on more tests.

I am 21 and started having the most awful pains in my back, down my leg, in my groin and stomach about 3 years ago every period. I also have pain during intercourse. It’s partially helped with tramadol.

I have recently been diagnosed with Crohn’s disease and have started a steroid treatment and will then go on immunosuppressants. But the thing is I am not actually convinced it’s Crohn’s as all of my "flare ups" are always around my period.

I had a pelvic MRI and an eco but they both showed no signs of endo. I’m pretty sure I'm going to keep pushing for more tests and maybe even a laparoscopy but am i just overthinking it all? Should i just trust my gastroenterologist? I just can’t get over the coincidence of it all happening around my period!

Has anyone had similar problems? Been misdiagnosed with Crohn’s when it’s actually endo?

Thank you all for any advice you can give me ☺️

[Krn210]

I feel like I could have wrote this myself! Except for the Crohn’s diagnosis. I do have diverticulosis and have had episodes of diverticulitis. So I keep a detailed journal. The pain I get is always mid cycle and the week prior to my cycle with it usually subsiding once my cycle is going. I got the coil to help. So now I don’t bleed as bad but the pain is there. My doctor hasn’t even offered to look further into any gynae related things as she always refers me to the gastro. So I have a colonoscopy scheduled but not until October. I am so frustrated with it all. I’m going to contact my doc again and restate what is in my notes hoping that she will agree to further investigation. I think you should keep pushing if you aren’t confident with how things are going. I will be thinking of you.

[Hermi_t in reply to Krn210]

I’m sorry you’re going through this aswell. It’s just so frustrating isn’t it!? I hope your doc starts listening to you properly and that you get the help and treatment you need. I’m going to keep pushing for further tests etc…Keep smiling ☺️

[Lindle]

Which leg is it?

[Hermi_t in reply to Lindle]

It’s my right leg. It kind of feels like sciatica but it comes and goes with my cycle so I’m wondering if there might be endo on or near my sciatic nerve.

[isabellala]

Hi there! I hope you’re doing well, in spite of the chronic pain. Please do keep pushing for the laparoscopy. Only deep infiltrating endometriosis or endometriomas can be seen on an MRI; superficial, peritoneal endometriosis (which is the most common type) can only properly be diagnosed via laparoscopy. Additionally, you may well have both Crohns and endometriosis. They’re not mutually exclusive. Good luck!

[Hermi_t in reply to isabellala]

Hi, thank you so much for your reply. I knew that MRIs didn’t always show endo but i didn’t realise that it was the most common type it didn’t show! I will definitely keep pushing! I just hope it’s not both and that either I’m wrong or my gastroenterologist is! Thank you ☺️