MRI Endo: Hey, so I've gone for an MRI in... - Endometriosis UK

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MRI Endo

Bethyxox profile image
14 Replies

Hey, so I've gone for an MRI in suspistion of endo, they found a hole in my ovary that is leaking liquid a tilted uterus and an aspect of poly cystic ovaries... but no endo? I show all the symptoms of endo and it's in the family. I also so symtoms of IC and pelvic floor dysfunctional syndrom ... My gyno has stopped my period with the pill and doubt she is endo cos it didn't show up on the MRI .. but she told me that if I'm still in pain after a month of the new pill she will give laprscopy a try ... but I'm nervous that if I am still in pain and they do the laprscopy and they find nothing ... I'm literally so worried that now cos the MRI showed nothing I'm just being crazy and nothing is wrong with me ...

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Bethyxox
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14 Replies

First of all idk what's wrong with your gyno because ovaries that are leaking fluid with holes in them need to be fixed surgically.

Second of all endometriosis tends to be the thing that tilts your uterus when it's fuesed to something.

Third of all only deep endo shows up on imaging so the possibility of you having it judging by the results is really high and your Gynacologist is probably wasting time like mine. I'm just really mad at your gyno. My gyn told me the same thing but refused to do any imaging then she kept putting me on different pills and promised if each didn't work she'd give me a lap, well I'm on the 4th pill now and she mentioned Lupron and I now have a speacilist I'm seeing on Halloween.

Bethyxox profile image
Bethyxox in reply to

thank you ! i dont like the sound of lupron! i hope everything with the specialist goes well and you find the right gyno!!! im going to see after this month (even if i am not in so much pain after my periods have stopped i will say anything to get this flipping lap!) but im terrified they won't find anything :/ you have to tell me how it goes for you with this specialist! i really hope it goes super well!!!

JeanOsborne profile image
JeanOsborne

Hi I'm assuming you are with a general gynaecologist.

Whilst you can be born with a tilted uterus if you have a close family member with endo it increases your chances of having it to.

I would suggest you get your GP to refer you to a BSGE centre where there are specialist endo surgeons. You can then say you want a lap to find out what is going on. Good luck.

Bethyxox profile image
Bethyxox in reply to JeanOsborne

i live in France ... and the closest one is in paris like 5 hours away :(

JeanOsborne profile image
JeanOsborne in reply to Bethyxox

Hi I don't know how things work in France but seeing a specialist would be a lot better for you , even if you do have to travel. In England general gynaecologists tend to miss endo a lot or just not recognise all presentations of it.

No matter what is going on whatever is wrong with your ovaries needs sorting.

I really hope you can get sorted.

Bethyxox profile image
Bethyxox in reply to JeanOsborne

thanks... here they're not so hot on female and mental problems as england ... yeah she just said its where i had a cyst and it burst ? but she said its not harmful but to be honest to me it just sounded like chocolate cysts what she described to me but they didn't pick it up on the mri??

JeanOsborne profile image
JeanOsborne in reply to Bethyxox

The thing is chocolate cysts very rarely rupture as the cyst wall is so thick. But even so if you have chocolate cysts( endometriomas) then you definitely have endo elsewhere. You need a lap to find out what is being affected.

Bethyxox profile image
Bethyxox in reply to JeanOsborne

yeah but maybe its not that because it didn't show on the mri... but everything else points to endo so im gonna push for ap and just hope they find something.. im only 17 so i can't just go away on my own to paris .. so frustrating !!!

JeanOsborne profile image
JeanOsborne in reply to Bethyxox

Just don't give up until you have answers. It took me nearly 30 for someone to believe me, by then things were so bad inside I was infertile and needed everything taken out. You know your own body, so keep fighting to you get get sorted and stay strong. You will get there.

Bethyxox profile image
Bethyxox in reply to JeanOsborne

thank you! im just so scared they're gonna open me up and find nothing and just come to to conclusion im crazy

JeanOsborne profile image
JeanOsborne in reply to Bethyxox

You are not crazy. I think I can safely say that everyone of us on here have felt scared they won't find anything. But there is a reason you are in pain and someone will listen. If you have a lap and they don't find anything get a second opinion. The fact they think you had a chocolate cyst I strongly believe they will find something.

I'm here if you ever need to talk. Keep us updated.

Bethyxox profile image
Bethyxox in reply to JeanOsborne

thank you so much! i really appreciate the help!

Hi! Chocolate cysts can leak and then heal over. After a while the body reabsorbs the blood that comes out of the cyst. This happened to me a couple of times. It really was very painful. I had surgery five weeks ago and one of my endometriomas had fully ruptured. It caused a great deal of inflammation and infection so I'd be very wary of not being treated sooner rather than later by a specialist.

These cysts usually indicate more severe endo elsewhere unfortunately. My lap revealed endo pretty much everywhere but very little of it showed up on MRI. I hope you find answers soon.

Bethyxox profile image
Bethyxox in reply to

thank you so much! yeah they found no endo on the mri ... thank you so much fro your help i really need it xx

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