MRI results... Cysts and CT scan - Endometriosis UK

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MRI results... Cysts and CT scan

weekari
weekari

Hi all,

Some may already know, I've had a bit of a run around with the doctors. I have been very ill for 4 years, mostly with debilitating fatigue but also abdominal pain & bloating and back & hip pain. I've had to stop working it's so bad. I don't feel I'm really living. I had a clear lap 2 years ago so was discharged from gynae. orthopaedics did an mri in May, thinking I had arthritis but I was told I had severe endo throughout my pelvis and was referred back to gynae and the specialist endo centre has been involved, looking at my scans and advising. They wanted another more specific mri so I had that last month and was waiting for the endo team to review and recommend. Today I spoke to the consultant about that. He said that there appears to be a cyst behind my womb, but not attached to it. It looks like it is coming from my ovary. He said the team now want a CT scan to again have a better look and to plan for surgery. I asked if there was more endo other than this cyst and he said that's what the CT scan will tell us.

I just don't know what to think. I feel the information is being drip fed to me. No one has ever mentioned a cyst before. Plus, I thought cysts were fairly common in endo and I wouldn't need all of these scans before surgery to remove it.

I feel they're still not telling me something.

Has anyone got experience with anything like this?

It'll be another 2 week wait to get my CT scan but he said I'll know quickly after that what the plan is.

Any help/advice/information would be much appreciated.

Thank you.

3 Replies
oldestnewest

Hi Weekari

Sorry you are going through a difficult time, I know how you feel as your story sound pretty similar to mine. I’d put pressure on them every week for results and how they plan to proceed. I think if you don’t push they’ll go with the person shouting the loudest so to speak.

I got down to what I thought was my consultant to discuss my operation appointment only to be told another test with the colon surgeon should be made due to my symptoms. This was supposed to be at least 3 weeks ago and i’m still waiting even though I have an operation date in September. I called today and was told i’d Down as urgent but they didn’t know what the hold up was and the gynae team are therefore pressing for an appointment for this.

They do all these tests to make sure nothing surprising pops up but to me the CT scan just confirmation what I already knew. It does feel like the run around and It’s highly frustrating but hang in there and keep chasing them.

Thank you for replying. I've just never heard of it being like this. I would obviously rather they know all they can before surgery but it's just like the goal pays keep moving.

Hopefully I'll get a surgery date soon. At least then you know something will be happening. I hope you find that some kind of comfort?

I didn't think I was a very patient person but I'm needing to be now!

X

Yes it does seem like a lot of information is being fed in drips and drabs but I think this is due to the current strain on the NHS; If information is fed this way everyone gets seen.

It’s very annoying for us but if it’s not life threatening they have to do everything within a timescale.

To be honest my moto is ‘it is what it is’. All hope is on the next operation just like the one I had in March. If I’m still feeling the same after this one I don’t know what I’ll do.

Keep at it xx

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