Endometriosis UK
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What happens next?

Hello all, bit of a long story I suppose.

I've just been diagnosed today with endo. I have believed I've had endo for years now, I've been to the doctors with awful pain for many years, in my leg, which feels like a flushing pain where I want to rip out my muscle, a stabbing pain down there, which feels like I'm being impaled and I scream out, then a pain in my side, I also find it almost impossible to go to the toilet when I'm on too.

Anyway, I have been diagnosed through a bit of fluke luck. I went to my GP because I was sick of my bowel troubles and it's always just IBS. She did bloods and tests for coeliac, and because I mentioned bloating, she ticked CA125 levels.

Anyway, my levels were elevated (I went when I was on, I didn't know I was being tested for this), so I had to be put into ultrasound as precaution and the results were an ovarian cyst caused by endometriosis.

It's quite bitter sweet as I've known for a years and the doctors have said everyone gets pain when they are on, but at least it's diagnosed now, and quite easily I think, compared to having to have a laparoscopy.

I just wondered what happens next? I've been referred to a gynaecologist who I see in September, but I don't really know what to do now.

What happens next?

9 Replies
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Hey! I'm glad you seem to have had an easy diagnosis! But the only way to confirm diagnosis is a laparoscopy, has this been discussed?

I don't think they know they know the full extent of the endo until a lap and even then it can be missed like mine was.

I had a lap under a general gynae and said was all clear, I'm now pushing to see an endo specialist to do another surgery!

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Hi, thanks for the reply.

I've been confirmed as having it due to the cyst, which is a diagnosed endometriosis cyst.

They haven't confirmed where else or to what extent, but they have said I have it for sure.

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Oh right! You're lucky then!!

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Yes, I had thought I had had it for years, but always didn't like the thought of the stress of diagnosis.

As I said in my first post, I think it's a lucky fluke to be diagnosed in this way due to the cyst showing it.

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Also to add, does anyone know if they will want to remove the cyst surgically, or just leave it?

I'm in the UK, NHS patient.

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Removal of cyst will depend on its size, Ive now had both my ovaries removed in separate surgeries as they were engulfed by cysts (I'm 48, if you're younger they will try and preserve ovaries). I would highly recommend that you ask to be referred to a specialist endometriosis centre, I had assumed general gynaecologists had this expertise but it's not the case. I have seen an amazing endo team in Oxford and it's been so helpful to medal with a team who specialise in this, this is even more important if future fertility is a consideration for you.

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Thanks for this.

As I said, I've thought I have had this for years, but it's the cyst and what to do with it that is bothering me. I'm of child bearing age, not sure I'm going to have them though.

I thought it was every gyno was a specialist, thanks for telling me otherwise.

I live in London, in the outskirts, Waltham Forest.

Should I phone endometriosisUK and ask where would be best?

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Yes I think that could be a good idea

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Deal, it medal! Bad autocorrect!

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