Mri scan

[Shazmo]

So after years of pain even after a total hysterectomy 20 years ago got referred to a specialist endometriosis hospital mri came back not showing any evidence of any gynaecological pathology or endometriosis so where do I go from here surely there must be a reason for the excruciating pain in in on a daily basis

[Linley]

That's the trouble with us ladies all our bits are in the same place🙄. Bowel probs poss?

[Moon_maiden]

Hi

I’ve had hardly any Endo/adhesions show on any scan, yet loads there inc Rectovaginal Endo. It doesn’t mean you do or don’t have Endo or other adhesions. The likely only way to find out is an op unfortunately. It’s also worth getting a referral for Gastro to look at other things.

Did they remove Endo during your hysterectomy?

Potentially there could be nerve damage if you had it, I’ve found Duloxitine works best.

[Steve2357]

Adhesions from your previous Surgery.

[Shazmo]

Thanks for taking the time to reply, I had the hysterectomy because of the endometriosis after around 7 surgeries previously. Adhesions and diverticular was mentioned but who/where do I push for a look inside I cannot go on with this pain indefinitely tia

[MyStar86]

a clear MRI only means you don’t have DIE but even then you might and the mri didn’t pick it up. MRI is not enough to exclude endometriosis you should push for a laparoscopy you could have surface level endometriosis that is impacting the nerves causing pain. Also some people with surface level endometriosis have excruciating pain but this wouldn’t show on an mri. The endometriosis specialist should know this, what did they say when they talked you through the mri? Keep pushing as that’s not the end of the endometriosis road for you x

[MyStar86]

iceaps.com/patient_resource...

[Jupiter2]

Hi Shazmo,

I really sympathize, I had a hysterectomy for endo 13 years ago and still have ongoing pain. I have really struggled to get help in the NHS even though I have now had a private MRI scan that shows deep endo.

Are you on HRT? I have found that coming off HRT has helped the pain somewhat, but the flip side is that I now have terrible menopause symptoms.

Good luck with getting help.

[Charliebh12]

I'm in the same situation and they say scar tissue is causing it. Also when you have a hyster your pelvic area can be either too tight or too slack. Pelvic physio can really help ( a good one !).

Also look at pelvic congestion syndrome. I wish you well. Unfortunately hyster doesn't cure endo and after you've had one it's like they put us out to pasture !!! X

[Busy-Lizzie]

I really feel for you, to have gone through major surgery then been left in limbo with pain unresolved.

You'll have realised that hysterectomy won't cure endo, though it will resolve adenomyosis by taking away the uterus.

Likewise, unless the ovaries were infiltrated by endo and all other endo deposits were excisedat the time of surgery, removing them won't take away the root cause of pain.

Did you have disease on the pelvic sidewalls, ligaments, or pouch of Douglas? Because these are areas where endo grows, areas beyond the organs that were removed.

MRI scans are less than ideal for picking up areas of endo, even deep infiltrating disease that can sometimes be seen at laparoscopy but not on a scan.

That said, there can be multiple generators of pelvic pain.

You need to discuss this with a specialist.

Pelvic physiotherapy may help, but you need a skilled opinion about what is going on.

I also recommend joining Nancy's Nook on Facebook, which is a valuable source of education about endo and pelvic pain.

I will be thinking of you xxx