What if mri is clear?

[Lavenderpetal]

Hi, I'm 26 and have always had bad periods as a teenager. Poor health in general but march of this year I started experiencing the most excruciating pain along with weakness, dizziness, nausea, spotting ect. I've been in and out of the hospital all year long with multiple gp appointments and multiple scans which never show anything alarming apart from a cyst by my cervix which ive been told is harmless. I've also been told its just ibs or anxiety🙄 I had a gynecology appointment last Thursday where she examined me and confidently told me she thinks it is infact endometriosis! I was so relieved as I have thought this for a while and been dismissed by doctors. I've been put on the pill and told I will need an mri scan before she considers surgery for me. (I have my mri this afternoon) but after doing my research I've noticed a lot of people saying that mris do not always show endometriosis and I'm scared mine won't. I'm looking for some advice on how to push for further investigations or what can be done if it does come back clear? As I am scared I will yet again be dismissed or sent home with no answers and back to square one. Thank you!

[SeventeenNineteen]

Hi Lavender,

Best of luck with your MRI, but don't fret-- it sounds like the consultant who ordered your MRI in the first place definitely believes you and has already put the pieces together. She will know that MRIs don't always tell the full story or definitively confirm diagnosis, but based on what is found (or not) will guide the next steps. Whatever is present or not present on the radiographs comes alongside all of the other symptoms you are having. Those are real. And it appears they are being taken seriously now.

I'm sorry you have been dismissed by gps in the past, and it is disheartening. But don't let that experience your experiences going forward. As it sounds like you have a great consultant now who recognizes your symptoms and as you say is "confidently" doing all the right things to make a firm diagnosis for you.

Best of luck and keep a record of your symptoms, especially with going on the pill and things, they may change, so keep those written down.

[Lavenderpetal in reply to SeventeenNineteen]

Hi seventeenNineteen ,Thank you so much for your reply! That's filled me with some hope that I will still be kept in the system and not disregarded after if my mri comes back clear.

I have noticed my symptoms worsen since taking the pill but unsure if that's just a coincidence of the timing of a flare up so that's a great idea I will start documenting my symptoms

Thank you❤️

[x_emily_x]

This sadly is a common experience. I have found that if you know, they won't try to pull the wool over your eyes. Many tests including mris don't show endometriosis. So if you tell them that (even though they already know) and you still believe its endometriosis and would like a laproscopy, they should still go through that. Adenomyosis (endo within the uterus walls) rarely shows on laproscopys, that they also know. Its very difficult to diagnose and they tend to diagnose via seeing treatments like the pill being effective. My gynea actually told me a laproscopy is a last resort but I pushed for it anyway. I personally think that's why so many women are fobbed off, because its so difficult, time consuming and expensive to diagnose. I too was told its stress or anxiety which of course is ridiculous as that wouldn't cause changes in bleeding, lumps and so on.

So... thats my experience with it. Not far off from yours really. This platform has massively helped me already because of all the people that have already been down all these roads, its made such a positive change for me. I love this community. I hope you get a diagnosis soon but don't worry if it comes back clear on the mri. Mine came back clear.

[Lavenderpetal in reply to x_emily_x]

Hi Emily,

Thank you so much for your comment you've made me realise that I need to be more informed so I can advocate for myself.

I think I'm very nieve at the moment as I had no idea that a laproscopy hardly shows adenomyosis. Thank you for sharing that with me. I just need to research and ask more questions, I think it can be all so overwhelming that I just shutdown and accept I probably will be in pain forever now.

I'm so grateful I found this forum aswell, even just these comments have made me feel less alone and cared for, sending love x

[x_emily_x in reply to Lavenderpetal]

Yeah, adenomyosis pretty much never shows on laproscopy tbh. It is a lot of information and I still get overwhelmed by it. I actualky didnt know much myself going into the gynea, you're doing great in learning about it and I'm still learning as well. I speak to people on here and think, wow I am really clueless lol so don't worry I think its just a part of the process. I really hope you get what you need.

[Shellbell2023]

Hi 👋 sorry about all the pain you are in! If it helps, I saw my consultant this week and he wanted an MRI, but (and I think this is because we went private) he told me that 80% of MRIs come back showing nothing in patients with endo, but they do them just to check there is nothing urgent ( cysts) etc that need treatment, so don't get to worried about it, cause it will probably show nothing! This shouldn't change your longtime treatment plan 💛

[Lavenderpetal in reply to Shellbell2023]

Hi shellbell,

Thank you for your reply!

That makes complete sense, I was just worried I was being fobbed off again. I have a cyst aswell so maybe they are just looking into that aswell.

That's given me some relief. Thank you ❤️

[Noonehelps]

I was told that I had endometriosis 2 years ago. However, I had an MRI earlier this month by a second consultant and he says I don’t have endometriosis. Yet first consultant says it’s probably stage 3 or 4. So I’m confused.

[Cocoacupid]

hun I was like you so since 2021 thinks got a lot more severe constantly sick pain and other things had a lap which showed severe deep infiltrated endo with a frozen pelvis And bowel involvement. Had an mri to see how much organs and bowel involved xx endo can show on mri but can normally only show deep infiltrated endo . But they also have to know what they are loooking for. Like you constant bladder and bowel issues told Ibs and vomoting etc told on scan only simple cyst etc wasn’t at all as had large endometrioma as well. Good luck maybe push for a lap as these are more informative as well. Every time I went an and e also told I had gi symptoms not the case really . Xxx

[Lavenderpetal in reply to Cocoacupid]

Hi coco,Thank you for your reply, very helpful and I hope you are doing well it sounds like you've been through hell aswell I think I will push to see a endo specialist and be put on the list for surgery!❤️

[Rock-Cat]

I had excision surgery in 2021 no MRI that time but clear ultrasound, extensive stage 2/3 Endo excised in surgery, then my symptoms returned in Feb 2023. This time I had MRI as well as ultrasound both clear, which made me think I was going mad but I had second excision surgery last week and they found and removed more endometriosis. Less than last time but still severely impacting my quality of life. Only you know your body, push for surgery even if MRI is clear because a lot of endometriosis can't be seen on scans.

[Lavenderpetal in reply to Rock-Cat]

Hi rock cat,

I'm so sorry to hear it came back this year and I hope your recovering well from your recent surgery! Sending love! Thank you for replying I agree I do know my own body and I will advocate more for myself I know its endometriosis and I will not let them fob me off with ibs or something like that again.

I will push to be put on the surgery list and learn more in the meantime. Thank you❤️