Just diagnosed, lots of questions - Endometriosis UK

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Just diagnosed, lots of questions

Daisy3t profile image
2 Replies

Hi ladies, 

I went for an ultrasound on Wednesday for a suspected hernia as I have a lump on my abdomen just left and slightly lower to my belly button. Not visible to the eye and I say lump but it's more like a hard area in my tummy. The first GP I saw totally missed it. Anyway the radiologist said straight away that it was not a hernia and he suspects an endometrioma but wasn't quite sure as he didn't know too much about endometriosis.

He also found another 3cm mass in my liver and seemed more concerned about that as he spent quite a while investigating it. Injecting me with ink to see how it reacted on the ultrasound etc. He said he thinks it's a benign hemangioma and "thinks" it's ok.So of course I have been worrying myself sick.

Since presenting these symptoms of severe pain, cramps and constipation almost 3months ago,I have now had 3 different "suspected" diagnosis so of course went in to panic mode because of how unsure he was about it all. 

I have been frantically trying to read up about endometriosis and found quite a lot of comfort knowing that this community/ forum exists and gathered as much info as I can. I was fortunate to get a speedy appointment with my new GP (who has been great) and she told me that yes they think it's a 3cm endometrioma on my abdominal wall & that she thinks the mass in my liver could also be an endometrioma. I had kinda told myself not to be concerned with the mass in my liver as I thought he said it was the benign Hemangioma. So surprised and a little concerned that I'm being referred for an MRI scan for that?? Also being referred to gynae for lap for the abdominal  endometrioma. 

My concerns are if I have the  endometriomas how bad is the endometriosis that doesn't show on the ultrasound. I have always had bad periods with fainting, vomiting and diarrhoea (sorry for tmi) and have just kind of accepted them and got on with it. So wondering what on earth the damage is like. What stage I am?? And what that means for me fertility wise?? I am a single mum of 1 turning 30 next month. I would still like more kids so this is really concerning me. What my options are going to be? 

Also has any one else had an endometrioma in the liver? And how has it affected you?  

Will they be able to remove the endometrioma on my abdominal wall by lap or by another method? Iv heard some ladies went through belly buttons and c-section scars or have bigger incisions on their tummies?

Also really concerned about any of this being cancerous which I have been reassured that it probably isn't but still quite scared. 

Sorry for the ramble. It's just been quite a lot to take in and my brain is all over the place. 

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Daisy3t
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AnnaB1979 profile image
AnnaB1979

Hey, glad you've found this site, everyone is brilliant. I had a similar diagnosis background to you and the worry is awful. Your symptoms certainly sound consistent with endometriosis and endometrioma but you do need a lap to confirm. The MRI scan will be a further "confirmation" to make sure everything else is ok but the definitive diagnosis for endo is the lap. Whilst you're under and if they find it, they will remove it there and then, through key hole or leave if it's in a difficult position and wake you up to discuss options. Don't worry, it sounds like you're edging towards a proper diagnosis which for some poor people can take many years. Keep pushing for that lap...xxx

Stresshead24 profile image
Stresshead24

Hi not sure if you still come on here but I've just been diagnosed of abdominal wall endo (hard lump by my belly button) and cant seem to find much info about it. Did you get yours removed and how are you since etc. Thank you x

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