Finally spoken to someome today--my consultants secretary about my results!!had my first ever lap 3rd April. He took away multiple pockets of 'stuff' the biopsy results said "could not confirm endometrosis" what does this ACTUALLY mean?
Ive been crying my eyes out since 8am. This cannot be happening. I am so so so sure it's endo but wgy couldn't it confirm??! Myself and the hospital and doctors have exhausted every other option
What can I do?? I feel like im going crazy. My follow up appointment isnt until 28th of JUNE x
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DM14
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Just give yourself a moment to breathe. Give yourself a long moment to let out whatever you're feeling.... Frustration, fear, anger, anxiety... Allow yourself to let it out.
It's a really difficult process all of this and when you're waiting on crucial information like this, it's even harder. And when it's dripped to you like this, using really unhelpful words like "stuff"... Then omg your really being pushed!
I feel I'm in a similar boat. I had a lap 2 years ago that didn't find any endo. That was the end of the road for me trying to find out why I was so constantly fatigued. I also had terrible abdominal pain & bloating. Then 8 months later I started to have bad back and hip pain and was referred to orthopaedics. A few months ago, I had an mri with the thought I had arthritis but I saw the consultant 2 weeks ago and he said severe endo was found. He admitted he knew nothing about endo and just read out the mri report, which was all pretty technical and as my head was spinning, I didn't really take much in. I went to my gp the following week (the earliest appointment I could get) to get it all explained to me and she didn't have any info about it, couldn't access the mri results and basically said until she got a letter from the consultant, it's not been confirmed. So I've been in limbo all this time, been told I have severe endo totally out the blue but with no idea what to do with all of this. I just got a letter the other day from the surgeon who did my lap saying he's not sure what's happened but will give my mri to the endo specialist radiographer and will meet with me 3rd July to discuss. Ages away! So that means 2 months of having been told I have severe endo, but told no more than that. My employer is currently terminating my contract on grounds of ill health as I've been off so long it seemed like my illness was psychological (that's what I was told as they couldn't find anything wrong, it seemed to be stress) I thought I'm never going to be able to get back to work & I'm making myself bankrupt due to it all. So a diagnosis and treatment is kind of a huge deal!
I really think there needs to be better guidelines for how they give people results from procedures. When you've been ill for years, these results, whether they find something or not, can have a huge impact on people.
I think like me, you've got a bit of time to wait until you hopefully get some answers. You've just got to find a way that you won't get too obsessed and caught up in it all. It's 5 weeks, it could fly in if you're not counting the minutes. It's important to give yourself time to feel how you're feeling bit also make sure it's not all you're thinking about.
I was just wondering, Have you had an mri? That might be a useful step to check for deep endo that wouldn't be visible in the lap.
That’s is so bad! That’s all they can tell you! I would ask call bk the secretary and ask if you can speak with your consultant or ask a report sent to your gp... this is so bad! There been something there that shouldn’t be they’ve obv took away ... you need to know what they have took from your body! I agree with @weekari give yourself a moment to let it all out whether it’s talking to your parents or partner or friends ... so sorry to hear this I wouldn’t stop until I find out what exactly is they have taken out... xx
weekari LolaLo3 thank you for your replies! I just feel lost for words. I dont know what to do. These symptoms have been getting progressively worse for 13 years...and I thought finally I have a diagnosis to tell my friends my family my boyfriend my jobs!!.
Do you think this response is a yes.or no or neither??? No I havent had an MRI but will definatley bring it up with my consultant. With regards to speaking to him I have tried and tired and he never ever rings me back. I am going to contact PALS about my follow up being so far away xx
I totally get that just wanting to have a name for it. It's so frustrating especially when you've been suffering as long as you have.
From what you've said, my guess is that endo is still suspected but the just didn't have enough to actually confirm it. It doesn't sound like it's ruled out completely. I would try hard to not look into it all so much right now. I know it's really hard not to but you will get a chance to find out more in 5 weeks when the surgeon can explain it. It's really not the secretary's place to tell you these things, I don't think they really should have because what's written in the op notes may be easily misunderstood or taken out of context and the secretary can't know this or explain it further. I work in a medical setting and if a secretary read out my notes to a patient, I'd be really concerned and unhappy about it!
I think going to your GP is a good idea. They could maybe look into it for you and try to get some accurate info.
I think that amount of time for follow up is pretty normal. I was told in the recovery after my lap that no endo was found but my actual follow up with the consultant was a long time after surgery, I'm sure it was about 2 months.
Do you know if it was a bsge surgeon you had? Was it in an endo centre or general gynae?
I have insisted the consultant tp rong me tomorrow just for a little more insight...and after thag phone call (if or happens) O am not going to talk about appointments, my symptoms, my pain or hospitals to my family or boyftiend because your right im practically torturing myself and I am so so miserable recently. It not good for my mental health
Does everyone just jave tissue lying around inside that can be removed..or the fact is what there means its something?
Only the surgeon can explain what that means. It's great if you get to talk to them tomorrow. I suggest you write down everything you want to ask them I really hope you get some clarity. Let us know how it goes. X
No need to apologise! I got letter from my surgeon last week and was in a similar position. It made my head spin. I'm so grateful l for this site and how many people are able to support us through such a tough process.
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Feel lost
Is it common to feel so tiered and lethargic with Endo condition?
Feel so depressed
I feel alone
worsening pain just feel lost 
