Hello.
I have stage 4 Endo and adeno for which I’ve had multiple surgeries including two excision and removal of left ovary and both tubes. My bowel and bladder are involved as well as ligaments and everything stuck together.
I’ve suffered worse than usual pain and bloating for the last 18 months and this reoccurring nausea and terrible intestinal pain by belly button too.
My latest MRI came back as requiring URGENT ESCALATION AND MDT DISCUSSION TO PLAN TREATMENT.
I’ve had a real battle with secretaries trying to coordinate everything as well as having to wait 5 weeks for these urgent results.
Friday morning my GP called and said they need to refer me on the Urgent 2 Week Cancer referral pathway. I’m really scared and worried about this. Has this happened to anyone else?
My MRI results showed moderate lymphadenopathy on pelvic side wall (enlarged lymph nodes), as well as multiple ‘abnormal signal’ deposits deep within pelvis and on ligaments.
All of which had ‘restricted diffusion on dwi/ adc mapping’ .
I already knew my uterus and bowel stuck together with dense adhesions but I’m really concerned and don’t understand the above.
Has this happened to anyone else? Has any one had enlarged nodes relating to Endo?
I’d hoped the nodes were related to Endo inflammation but my specialist has advised this would be very unusual.
Thank you in advance for any help you can give. Xxx
as I’ve said before, ‘worrying just makes you suffer twice’. Keep yourself informed and chase where it’s reasonable, but also try and distract yourself in the meantime with some pampering perhaps x
MRI results clear
Got results from MRI but what do they mean?!? Has anyone else been through the same that could help me? 
MRI results lead time? Diaphragm endo removal?
endo and failing immune system 
Go to hospital or wait 2 weeks for lap?
Hi
Try not to worry, most of the two week pathway checks come back normal. I went through similar in 2020 due to massive weight loss, pain, inflammation. All came back clear. When I had hysterectomy and Endo removal that was all clear as well. They know now that Endo acts like cancer cells, look up the Endinburgh Uni research, but isn’t fatal. They are testing cancer drugs and it looks successful so far in their studies. There is so much unknown about Endo, but we know it causes damage that isn’t understood.
How is your pain at the moment? I’ve found Duloxitine quite helpful but still subsidised with Oramorph and Diclofenac.
They do the pathway to make sure they don’t miss anything. Let us know how you get on. Here if you need to rant, etc., this is crap and causes no end of issues.
I've read the same about it behaving like cancerous tissue. Would be nice if it was distinguishable on MRI so as not to scare the shit out of people.
That would be great, be nice if adhesions showed up properly as well. The things we need most they can never find properly 🤦♀️
Right? My MRI showed up hardly any compared with what was actually in there.
same here prior to being diagnosed all my scans came back pretty much clear and then when they did first lap the consultant was horrified by what he found. Xx
hi
Sorry to jump in.
Do you think an mri is a waste of time. As I’ve had so many scans and cameras. Countless drs poking and prodding. Have both endometriosis and adenomyosis. They think the endo is in the bowel
What was your stage and they had found nothing on your MRI, right? Where was your endo located? Thank you! 💕💕💕
Definitely, also doesn’t help that some radiographers are more specialised than others in spotting Endo on scans. I’m hoping it was an unspecialised one reporting on mine and that they’ve got it wrong. Xxx
What was your stage and they had found nothing on your MRI, right? Where was your endo located? Thank you! 💕💕💕
Thank you so much, that’s reassuring and very helpful.
Pain is pretty bad but the exhaustion is worse I’ve always suffered but I literally can’t get enough sleep. Diclofenac is a medication I’d be interested to try Ive read good things about it. I’m on Zapain, naproxen and pregabalin at moment. I used to have tramadol but the GP stopped prescribing it (very “helpful” of them).
Hospital rang and I have an appointment regarding referral tomorrow afternoon, I will update.
I remember my old consultant describing Endo as cancer that wouldn’t kill me, so fingers crossed it’s that as Endo is definitely enough to be dealing with
Thank you again for replying - I will keep in touch 😊xxx.
Hi
How are you feeling? Did appointment go ok?
hey, I’m ok thank you still very worried. Appointment was very thorough, a lot of questions asked and info gathered, they took bloods and told me of process. MDT discussion either tmrw or next Thurs, and from there will know what next steps are.
The doctor did mention that the CA125 (which I was tested for yday) often comes back high in Endo sufferers, more evidence of how similar the disease must be to cancer.
Thank you for your support, I will keep you updated xxx
That’s great the appointment went well and you understand a bit more, it’s not easy though. They are moving quickly so that’s good 🙂
I’ve read that as well with the test. I wish the disease was recognised as being like cancer to all drs, they might be more empathic to the pain and provide better care and meds quicker.
Keep us posted and here to chat if you’re having a rough day.
It depends on people. Some despite cancer or endo don't get a higher CA125 and that's really annoying! You always get rare people and I'm fed up of being part of these people. 😅😅😅