Endometriosis UK
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consultation today

Consultant said that he thinks there's over a 50% chance I have endo. Couldn't feel any nodules in the physical examination; said may be higher up/in the area between bowel/uterus. Went through the hormonal treatments with me, but cautioned me that they are not great for those who have migraines (me) and depression (also me).

Has said I need a CA 125 blood test, MRI, and stage 1 laparoscopy. :( The NHS wait is massive so I don't know how to manage these upcoming months without having a meltdown.

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I’m in a fairly similar boat at the moment. I’ve just seen a consultant, they refused to do an internal examination, and straight away booked me in for a laparoscopy. They are also limited what they can give me due to migraines also. So they want to put a coil in. I got given all the pre op stuff however I’m on the verge of a breakdown as I’ve been told the wait is 3-4 months. Hope things get sorted with you x

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why did they refuse an internal examination? i felt like a bit of a fraud when he said he couldn't feel any nodules... I've had the coil before and it hated me but I really hope it helps you in the mean time. xxx

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Because of the symptoms, the length of time they’ve gone on for and they are pretty sure it’s endo. I felt like an idiot sat in there, just in case previous doctors are right and it’s nothing, and it’s all in my head xxx

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oh gosh I'm worried about that too. My main pain is during my period, so I just feel like a fraud. I also get myself wound up when I know my period is coming now because I anticipate the pain which makes it worse

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That’s my problem too, I have extremely heavy periods and the pain makes me bed bound for days. I get so worked up towards my period mainly cause I know what to expect

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mine is due Friday and every cramp/twinge has me freaked out :(

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Mine is so irregular so when it should be due I start freaking out then it just surprises me

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Hi, they couldn’t feel anything on a internal exam with me either. But on my first lap I was diagnosed with stage 3 endo. I think whether or not they can feel it all depends on where it is located. So please don’t feel like a fraud, the consultant clearly thinks it worth investigating further.

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Thank you xx

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It sounds like you are in good hands. Im in similar boat except scan showed an 8cm chocolate cyst. On waiting list too. Managing endo is largely coil or pill... unless surgicall removing large bits of it probably worth starting the hormonal treatment now. My husband and I are trying for a baby so not an option for us at min. With any luck, getting pregnant will help symptoms.

Good luck! I hope we don't wait too long. I suppose the nhs needs to prioritise cancer ops, especially over the winter months when operating lists get cancellef. They will get to us!

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thank you x

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