Confusion over diagnosis

[Hermi_t]

Hello everyone! Yesterday i finally got diagnosed after three years of hospital trips, appointments and tests! After a specialist re-read an MRI I had 6 months ago, they discovered that i have deep lesions all over the left side of my uterus and on my bladder. The confusion is that all (or most of) my pain is on my right side. I am on a waiting list for an emergency MRI of my spine to see if i have any endo lesions further up and possibly on my right side so that the surgeons can plan for my surgery which will be in a few months. I was just wondering if anyone else has had referred pain where its on the opposite side of their endo?

[me94]

Hi, I had lap surgery done a few weeks ago and they found endo on left side but I get right sided pain. I haven't got an answer to this yet as haven't got a post op follow up at moment. Keep me posted if you found the answer to this as I'm confused also to why there was no endo on right as that's where I get the pain. Did your consultant say why that might be the case for you?

[ocke2030 in reply to me94]

hi i have endo stage 4 they cleared the right side with nout they could see in the ieft side had to get another mri as my left side was given me pain etc now waiting for a plan for next surgery so wierd eh....

[me94 in reply to ocke2030]

Where is your endo? In both sides? Did the mri show endo?

[ocke2030 in reply to me94]

endo is stage 3 around ovaries stage 4 everywhere else so hoping for some info soon as to what they will do next mri showed ademyosis endo and fibroids and cysts and attachement of uterus to colon

[me94 in reply to ocke2030]

Aww you got a lot going on 😫 which side do you get pain?

[Hermi_t in reply to ocke2030]

I feel like so much in endometriosis doesn’t make sense…each case is so different! I hope you get answers soon!

[Hermi_t in reply to me94]

I’m glad you’ve had the lap and i hope the follow up is promising!

So my consultants main theory is that i have Endo further up than my pelvic MRI showed. My pain is often like sciatica so she thinks it may be on or around my sciatic nerve. Hopefully the next MRI will give some clarity on that.

She said that its also a possibility that it’s just referred pain.

Or it could be as simple as, the person who read the MRI got mixed up with which side was which 😅.

[me94 in reply to Hermi_t]

Im glad you got answers too. it's weird how my pain is the opposite side to the endo. So it could be reffered pain radiating to other side? Is your pain lower right or higher up? Glad you got answers too. Also you seeing a specialist? Did you see specialist on nhs or private x

[Hermi_t in reply to me94]

My pain is generally lower down on the right side, radiating around my hip and down my leg both at the front and back. I saw an Endo specialist osteopath yesterday and she said that she couldn’t really believe that the endo was on the left as she could feel so much tension all on the right! She also told me that it is pretty rare to have the pain referred to the opposite side and that we’ll only really know what’s going on after the laparoscopy.

I probably should have put this in my original post but I am seeing specialists in France having lived here since i was 5. I was contemplating coming back to the UK at one point as i wasn’t getting anywhere with the doctors here but i have finally found the right team of doctors who took me seriously and finally got me diagnosed x

[me94 in reply to Hermi_t]

Some of them symptoms are the same for me. So glad you're already under specliast. Hope they can do surgery for you soon. You could have it on right and maybe it was missed on mri? I guess I'll have to wait for further surgery to see if they can see it on the right side this time but know the wait will be years 😫 x

[Hermi_t in reply to me94]

I think it’s quite possible that it was missed on the right, yes. As soon as I’ve had this next MRI they will start planning the surgey. Hopefully it will be in the next few months. I hope you get answers and that they sort your surgery out as soon as possible x