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
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Lily1986
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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.
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
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
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
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.
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. 😅😅😅
it went ok, they did some blood tests and asked a lot of questions. They’re having the mdt discussion either tmrw or next thurs and after that I will find out what next steps will be. Hoping it’s tmrw so don’t have to wait as long. Interestingly he did state that the CA125 blood test is often high in Endo sufferers, so that’s more proof of how similar of a disease it is to cancer. Thank you for your support I will keep you updated xxx
Big hug 🤗 It’s really scary to get information like this full stop let alone then find action doesn’t swiftly follow … but there are experiences as those above and there are times when yes we do need more. I found some of the cancer charities support helplines really helpful. They aren’t there purely for when you have a diagnosis and they are brilliant at supporting those of us in the funnel for exploration. They will answer all manner of questions and will take alot of time to make sure you’re in a place to cope. I’ve found them exceptional when I’ve needed. Whatever you do keep talking and reaching out.
hi Lily, I went through a similar experience in 2017, and I’ll be honest, it scared me witless. I too had had already had an oophrectomy and tube removed by then, and was referred urgently because of blood markers and routine scans. I had an mri and the multidisciplinary team got involved. I was booked for urgent surgery, still scared witless. Result was it was all caused by the deep infiltrating endometriosis. I lost my second ovary, but also had amazing excision surgery which has changed my life for the better. The not knowing is the hardest part. With hindsight I’ve promised myself never to allow myself to be so frightened again. It’s easy for me to say now, but worrying doesn’t change anything, and only makes you suffer twice. The positive is that your doctors have jumped urgently on your results. Keep in touch if you would like to x
I should add, my investigations were a similar time of year and the bank holidays played havoc with the MDT meeting schedule. The waiting was so hard, you really do have my sympathy
ah thank you very much, that has reassured me and you’re right about worrying not making any difference other than making it harder.
So sorry you’ve had the same experience. Fingers crossed mine comes back the same as yours and may even get the Endo surgery I’ve been needing a little quicker!
What markers were up in your tests? I’m yet to have up to date bloods done.
My urgent appointment is tomorrow so I will post an update.
it was the CA125 result. I can’t remember the numbers now, and apparently they are very ‘individual’ anyway, but I do recall the gp having an audibly shaking voice as she read me my results and told she was making an urgent cancer referral. With hindsight it was a blessing as the surgery I received under the care of a specialist team was amazing. I was warned I’d likely need additional surgery because of the involvement of my bowel, and yes, temporary colostomy was mentioned too, but fingers crossed, I’ve been symptom free since then!
ah that’s very similar to me, I’ve been told I will likely need colostomy in future too. I’m yet to be tested for CA125, I guess they will do that today. Woken feeling a bit more positive about things but will see what this afternoon brings. Will keep you updated. Thank you again, it’s reassuring to know you had a good outcome xx
Thank you, I will definitely keep in touch. They did the blood tests yday incl ca125 and did say that many with Endo have high result. Appointment was quite a long one, he asked a lot of questions and did the blood tests. They’re having the mdt discussion hopefully tmrw, if not, it will be next thurs and will find out what next steps are from there. Xx
Hello it’s me again. I sent the secretary an email on Friday, she advised that I had been discussed at Thursdays MDT and a letter was due to be typed and sent out fri afternoon. I haven’t heard anything yet. Also was told I will have another appt to discuss mdt very soon. Did they do this with you? I wasn’t sure what I was expecting really with regards what happened after the mdt. Hope you’re having a nice bank holiday xxx
Im glad progress is being made and you’ve been given an update. Yes, I was called to an appointment following the MDT, it was an incredibly short meeting as I recall (which upset and frustrated me at the time as I felt I wasn’t any the wiser about what was happening with my body) all they basically told me was they were booking me in for surgery. I was then phoned and booked in quickly for surgery about two weeks later - the speed of which also panicked me…. But as I’ve said, all was eventually good. How are you doing? Are you feeling any calmer? I think the not knowing is so very hard. I think all you can do is tell yourself that whatever is or isn’t going on, you are in the system to get it sorted out, and that’s way better than being unaware of a potential problem. X
Thank you, did you get a letter about what was discussed in the mdt too? I feel ok just unbelievably tired. Then I have waves of intense and nauseating anxiety and then I’m ok again for a bit. That’s true, I do feel reassured that I’m being dealt with but then I keep worrying incase it’s anything sinister in the bowel (lot of my symptoms I’ve put down to my bowel Endo) and that it’s being looked into by gynae mdt instead of colorectal mdt. Thank you for replying so soon, I find your messages reassuring. Xxx
I think colorectal will have been involved in the MDT meeting. I don’t recall getting a letter about the MDT meeting, I think that’s what the follow up meeting was for.
I’m glad my messages are reassuring you a bit. 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
hello, so sorry for taking so long to reply. The good news is it’s not cancer but is severe endometriosis. They haven’t excised it but I’ve been referred onto Endo specialist centre to discuss treatment options (think I’ve tried them all and nothing helps but never know lol) dx
thanks for getting back to me. I’m so glad it’s not cancer that you’re facing, and hope the waiting hasn’t been too traumatic, I know from my own experience that time seems to stand still when you’re waiting on that sort of news. I really hope your referral leads you to something positive. Can’t recall how much of my story I shared previously, but my surgery with endo specialist team was an entirely positive experience, and worlds away from the frightening and excruciatingly painful recovery that I had following my first surgery with general gynae. Best of luck.
hey, sorry I’ve taken so long to reply. After a horrible few weeks, thankfully it’s not cancer but severe Endo. It hasn’t been excised but I have been referred onto Endo specialist centre at the Wirral so at least some progress has been made there. Phew, I never want to go through that again. Thank you so much for asking and your support, I really appreciate it xx
I'm so glad to hear back!. I'm very happy to hear it isn't cancer, but I know it's horrible still having pain and needing to wait for appropriate care. Hopefully you get what you need soon, we are all here to vent to one another, It really helps. xx
Hello, I just came across your post. You posted this 1 month ago, how are you feeling now and what was the outcome? In October last year I was told I may have a tumour in my lower abdominal area as I found a lump, after months of persuading gp to take me seriously I had finally been referred to a consultant. In January they told me it was a tumour showing up on scans. I had my surgery in April 2023 and the results were that it was a benign nodule, and in actual fact a endometriosis deposits. I have never felt endo over my skin but this was scary to know It can grow anywhere. It was growing on my stomach and was so painful. I'm now recovering and doing physio to get strong at walking up and down the stairs now.
hello, thank you for your message. So sorry it’s taken so long to reply. That sounds awful, was it like a very deep deposit that had penetrated through to beneath surface of skin? Incredibly painful! Also I can imagine how frightening it was too.
Thankfully mine came back as not cancer but severe Endo but it hasn’t been excised. I have been referred on to an Endo specialist centre so will see what they say. Apparently because of damage and level of scarring I have due to past excision surgeries further surgery is going to be very risky and complicated.
It decided to flare up on my Birthday this week I was shaking and sweating in pain and although I tried my best I just wasn’t able to full enjoy myself and very much limited what I was able to do.
a very cruel disease and the pain it causes seems to rule my life.
Best wishes to you, I hope your recovery is going smoothly xxx
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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 and not feeling positive 
MRI results clear
Uterus stuck to my bowel ,
Mri results 
Mri results - what next?
