MRI results clear: I had an MRI for... - Endometriosis UK

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MRI results clear

Char411 profile image
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I had an MRI for suspected RV endo in January and had a follow up with my gynae today. He said apart from some fibroids the MRI was clear, they cannot find a reason for me passing menstrual blood through rectum when having bowel movements on my period. My colonoscopy was also clear. I have chronic backache, left leg pain, hip pain, pelvic pain, nerve pain, nausea, fatigue, constipation and diarrhea and my periods always start with old brown blood first. He has requested a lap but has made me feel like it’s in my head and not endometriosis even though my gastroenterologist said it is. Has this happened to anyone else? I thought given my symptoms something would show up on the MRI, I even had dye put through. I feel really deflated, not that I want endometriosis but I want a reason for my pain, symptoms and misery 😔

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Char411 profile image
Char411
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Lovisa profile image
Lovisa

I understand the frustration of nothing showing on scans yet showing symptoms. I too pass blood from my bowels, black blood at the start/end of periods. I had endo on my bowels/poD/uterosacral ligaments also my bowel is tethered into my pelvis etc but scans/mri's everything has been clear, even the colonoscopy was clear so no idea to why I bleed. I would most definitely have the lap as you clearly have the symptoms.

Char411 profile image
Char411 in reply to Lovisa

Thank you, that’s made me feel better. Sorry you’re having a rough time too but I’m glad I’m not going mad, my gynae does tend to make me feel like it’s in my head. Can I ask if your symptoms have been relieved since surgery as our symptoms sound similar x

Lovisa profile image
Lovisa in reply to Char411

The first big surgery I had did help for a couple of years, pain went from 11/10 to 4/10, but gradually has got painful again with pain in new places. My last lap which was roughly 8 months ago didn't help at all, in-fact it left me worse off so I'm now booked in for another lap -.-

Char411 profile image
Char411 in reply to Lovisa

I really hope your next one gives you some much needed relief x

Hey char, sorry to hear you didnt get any clear answers following on from your MRI. There must be a reason for the GI bleeding, you know your own body and clearly this not normal! My MRI did show a lesion in bowel wall, but at that time they still didn't believe it to be endo, took another 6 months and several more flexi sigs/ultrsounds to get to that diagnosis 😡. Currently waiting for surgery and looking like a bowel resection needed 😕 xx

Char411 profile image
Char411 in reply to

Hi Pj,

I’m sorry to hear that it’s not good news for you. My gastroenterologist even said that if I had a colonoscopy on my period then he would expect to see endometriosis cells inside my bowel (he’s amazing) however I feel like my gynecologist just wants to fob me off. I’m sure if it wasn’t a gynecological issue then I would bleed all the time, not just menstrual blood whilst on my period. I feel so deflated and frustrated at not being listened to. Fingers crossed that you don’t need a resection and that you don’t have to wait too much longer for your surgery. I’ll no doubt wait months for my lap, it’s always a waiting game.. long waits, a procedure, no answers and repeat. I’m glad I have you ladies to talk to, it’s a big help xxx

Exactly, when i finally got referred to the endo centre, i had an ultrasound with a consultant radiologist and she was astounded that endo had been dismissed for so long despite the fact my gi bleeding was cyclical with my period. I know, it is so frustrating waiting and feeling like no one is really listening. Your gynae doesn't sound awfully helpful, is that in a specialist centre as well? Keep persisting, you are not crazy, this is not just all in your head xx

Char411 profile image
Char411 in reply to

Well he asked for a specialist center referral last time due to my bowel symptoms but I haven’t heard anything since. He isn’t helpful at all and hadn’t even read my notes properly as he said if i’d Had a colonoscopy it could show why the bleed, when I explained I had and had told him this last time he then started reading my notes and then went on to say oh you should have had a colonoscopy not a sigmoidoscopy, I said I did look again they even took biopsies from my small bowel. I have honestly lost all faith in him now. He kept saying IF the blood is coming from your rectum and I had to keep correcting him and saying not if, it is. It’s so patronizing like I haven’t had periods for 26 years and can’t tell the difference between wiping my vagina and wiping my rectum. Ahhh sorry for the rant I’ve gone on a bit of a tangent. Hopefully he doesn’t perform my lap as I’m not hopeful if he does 😔 x

Bless you, don't apologise for rant, you are entitled to it! Have you thought about getting a second opinion? I'd be very nervous of going into surgery with someone I didn't have faith in. Might also be worth calling the specialist centre yourself to see if they ever even got the referral xx

Char411 profile image
Char411 in reply to

That’s a good idea I think I’ll do that, I think I need a second opinion too, it’s just so hard as I waited 9 months to even be seen by a gynaecologist xx

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