So I’m sure my Endo has come back. I had an mri recently and just spoke to a gynae secretary who said she’d speak to a dr regarding the results, she was gone for roughly 5 mins then came back to say that she’d shown them the results and said there was no obvious concern but there was scar tissue and my consultant would look at the results then call to discuss.
Could this be Endo? I’m not stressing that maybe they haven’t seen anything and I won’t get any further forward. Getting the diagnosis in the first place was difficult enough!
Please advise anybody? Anybody had similar or know of Endo being referred to as scar tissue?
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Chloelouise92
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Unless they biopsy they might not be able to tell on a scan if Endo is within the adhesion, that’s the scar tissue. You can get a copy of the report and pictures from the hospital, although it’s interesting to see pics hard to decipher. The report might say where you have adhesions.
If you speak to consultant first, check where the adhesions are showing, they can be removed, but surgeons will always say an operation can cause them as well.
Apologies for my naivety! So in theory it could still be Endo adhesions? I’m just concerned that if it’s scar tissue will they just kind of leave it at that or will they investigate further?
I guess I need to wait for the call with my consultant first to find out in more detail what they’ve found etc. I know when I was pregnant they mentioned a cyst really early on…but I’d kind of forgotten about it until recently. It was only because I was bleeding pretty much every day for approx 3 months that I thought I wonder if it could be related to the cyst that they’d mentioned. But the secretary didn’t mention that so I’m assuming nothing like that was found on the mri…
It’s all a bit stressful isn’t it. In a weird way I’d rather them find something so I had a definite answer
Don’t apologise, I’ve only learnt from experience in last few years. Could be, sometimes it can be a biopsy to tell. I didn’t have Endo show on any scan but had loads and adhesions. Although I had surgery first instead of scan first, so had some removed, then MRI to check if it was in the bowel, nothing showed but next surgery he took more out and adhesions with hysterectomy. I was 51 so it was for the best at that point. Surgeon didn’t think any issues just by looking at scan 🙄
You can still have scar tissue removed, they can still cause issues and pain, I had them round liver/gallbladder.
Cysts tend to be related to Endo, be interesting if cyst has shown up.
I decided on surgery after initial appointment and consultant pretty sure it was, I’d gone to see him about fibroids 🙄 I wanted to know for sure either way.
The secretary wouldn’t have said much in case she got it wrong, don’t worry too much. It is very stressful, too little information about Endo unfortunately. One day it’ll be better recognised in everyday life and others will acknowledge how bad it can be.
Thank you so much for your reply. Honestly it’s more helpful speaking on here than to the professionals sometimes!
Oh wow so in effect the MRI wasn’t that useful anyway…I was slightly annoyed I only ended up having a pelvic mri as I’ve been saying all along my legs are one of my main issues I have so much pain in my legs that some days I can barely walk. If I’m sat on the floor with my little one playing on occasion I get stuck as my leg is in so much pain it feels as if something will snap if I move so I have to wait dor the pain to pass.
But yes a cyst was definitely picked up during an early pregnancy scan…never been mentioned again but I suppose once I’d had baby that was it I had one follow up pelvic examination and then you just go on your way!
That was my hope that the secretary hasn’t said too much incase of making a mistake. Will just have to be patient and wait for the call with consultant now. I’m hoping that even if adhesions weren’t picked up that a lap would be my next route…not ideal but cannot live like this forever.
I truly hope so 🤞🏻 I feel for women that have to go through this and fight for a diagnosis
A few years ago lap was standard, then it changed to scan first. I saw a colorectal surgeon in 22 and they said they don’t go by scans. Personally I think the whole area was getting swamped and they couldn’t cope. My experience is op showed stuff but scan didn’t. Potentially adhesions are an issue, I had adhesions before any op and I know in the main they haven’t come back, potentially I still have some.
If you look up practical pain management endometriosis you might come across an article where someone had a trapped nerve that affected the legs from Endo and they received nerve block. I can’t find the link.
Maybe having your baby helped the cyst, it’s hormone based.
See what the surgeon says, let us know how you get on 🤞
The specialist doctors nowdays do not recommend diagnosis via lap because the more surgeries you have, the worst it can get concerning the adhesions. You should see a proper specialist who is able to do surgery and remove anything at the same time. Adhesions form after surgeries as well, not just because of endo. I recommend you to be assessed by a private surgeon such as Dr Peter Barton-Smith in London. He works with a professor specialising in endo scan who can tell you what is going on with a simple scan. Based on your symptoms then, you will be able to receive the appropriate advice. All the best!
The only thing is I already have had a diagnosis so I’m hopeful that will encourage another one to find out what’s going on.
My consultant before was a specialist so I’m hoping I will see the same one 🤞🏻
Makes it so much harder because getting answers is hard enough without having to find somebody who actually knows what they’re talking about to make sure it’s the correct diagnosis as well.
Thank you ☺️ got my fingers crossed for some positive news 🤞🏻
Hi - the thing is, try to avoid surgeries that only diagnose and not treat at the same time. Pain in leg means there is some nerve affected as far as I read. Hopefully, NHS, if you are in the UK, will be able to offer you the right advice if private care is not an option.
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