Could 'endo' on MRI be anything else?

[weekari]

I've just received a letter from a gynae and I could really do with some advice as my head is spinning. I'd seen the gynae 2 years ago due to very bad abdominal pain & bloating along with fatigue, they did a lap which didn't find any endo and so I was discharged. In the run up to the lap, they put me on a continuous pill which gave me a huge improvement in the symptoms. After the lap, I stopped taking it and the abdominal symptoms didn't return fully (i still have lots of pain but it is nothing like before). About a year after this lap, I started to get very bad back and hip pain, was referred to orthopaedics and after an MRI, was told that severe endo was found through out my pelvis. There wasn't any mention of it being a possibility- it was a direct 'you have endo'. The consultant admitted this wasn't his field and he'd refer to gynae but I went to my GP requesting to be referred to the specialist unit.

BUT today I have received a letter from the gynae I saw 2 years ago. It says "an MRI scan has raised the possibility of endo...I have asked out radiology specialist who deals with endo to review the films to see what they feel is going on". He's offered me an appointment in July which seems ages away!

So now I'm thinking, do I have endo? Is it possible I don't? If it's not endo on the scan, could it be something else (obviously my head is going to cancer- when all the gynae stuff was first mentioned to me it was from a GP telling me I had indicators for ovarian cancer). Is it possible I don't actually have anything 'wrong' inside me???

I feel like a bit of a fool for thinking I had been diagnosed and now it seems like I've not. I just don't know where I stand.

Any advice or information would be much appreciated.

[girli1111]

Take a breath..... I know how you’re feeling! My experience is that all types of scans can be inconclusive, but mine is a positive story. I had/have grade 4 endo. I had diagnosis and removal of an ovary, but almost two years after that an mri which was done for rheumatology team picked up a concerning mass on my remaining ovary. I had a bloodtest at GP, which set alarm bells as my CA 125 was over 400 (normal under 35). I was referred urgently to gynae oncology and had a further CT and mri scan done before surgery.... was scared witless, but was ‘just’ another large endometrioma, wrapped around ovary and attached to uterus and bowel. If you’re feeling very distressed waiting to be seen make gp appointment and request bloodtest... it won’t necessarily reassure you, but it may move things along a bit more quickly for you. Waiting on the unknown is horrible, but the lack of urgency I think should reassure.

[weekari in reply to girli1111]

Thanks for your reply. Taking a breath was actually great advice! I laughed because I realised I was holding my breath!

A raised CA125 level along with dodgy ultrasound 2.5 years ago was actually what triggered the cancer scare. It was then 'downgraded' to suspected endo and that's why I had the lap,which found nothing other than 2 large fibroids. So I was completely gobsmacked when I was told they found endo on the mri (especially as we were expecting arthritis--the consultant said he was shocked too) and now that I'm getting my head round having endo, I'm hearing that it's a 'possibility'.

I don't have much faith in my GP. I'm aware a raised CA125 can be found in endo and fibroids too so I'm not sure that would add much. Unless you think it might speed up my referral? I think I've already jumped the queue though as the wait time is 6 months and I'm being seen in 7 weeks.

It's not like everything else is all great. I've been off work sick for 7 months and just agreed that I'll be terminated on grounds of I'll health. And because of that I'm making myself bankrupt. And to make matters even worse, I started the endo friendly diet (which I may or may not need) and I can't even have chocolate or wine! 😂

At least the sun is shining.

[girli1111 in reply to weekari]

Oh dear! You’re having a very bad time of it! Yes, my point was speeding up referral. An elevated ca125 in the presence of any kind of ovarian mass (which you’ve possibly not got?) should, I believe, get you seen within two weeks. First time around my ca125 was 175, second time was 475 I think.

[SimplyDeeDee]

You have to stand your ground with your GP they don’t really know much about it hence why they like to send you off with pain relief. , I told mine I wasn’t leaving until I was referred to a specialist, this was after I think the 5 appointment, even though I’d had an op for this in the past.

I was the sent a list of options though the post a looked up the gynaecologists working in variois places and their specialisms. I picked carefully; there was no way I was ending up with the pervious consultant.

I was under a really good consultant who fast tracked my tests. My CA125 levels were off the chart too but they couldn’t see the endo, just multiple big fibroids.

I talk to everyone when I get tests, I take pictures of medical notes scans etc even when they tell me no, I find a way.

I was told cancer shows up differently on a scan and MRI so try and not think this is the case, your endo could be hidden like mine and the you also you have the fibroids on top of that.

[Littlebirdy34]

Just wanted to offer my support like you have with me.

Maybe they can not directly say it's endo because it can only properly be diagnosed via lap so they are just covering themselves.

Hope you are doing ok today x

[weekari in reply to Littlebirdy34]

Thank you. That's very lovely of you. I'm a bit better today but under the surface I'm just desperate to know. I think this is the universe's way of trying to teach me to be patient! 😂

X

[Littlebirdy34 in reply to weekari]

It's totally understandable though, you just want to know exactly what's going on with your body. I feel the same. Glad you're feeling better x