Outcome of first appointment: I had my... - Endometriosis UK

Endometriosis UK

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Outcome of first appointment

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I had my first appointment yesterday with a specialist gyne - turns out he is also an Endo specialist - good start!

He actually listened to everything I had to say, my partner kept quiet most of the time and only piped up when I forgot something.

Luckily no internal (as I was already in pain) but he had a good feel of my tummy, lots of prodding and poking!

Anyway, he said it might be Endo, but he suspects adenomyosis due to being in pain 24/7, in his opinion Endo only gives you pain 2/3 weeks of a month. He also thinks the burning/stinging when I have a wee coupled with the dizzy spells could be a very bad bladder infection (I've had countless antibiotics and that doesn't make any difference!)

I am booked in for a scan on the 22nd to check bladder and if they can see anything relating to adenomyosis. He is going all out as well and arranging a lap to have a good look around inside.

He asked about family plans, he might try hormones for 3 months to see if that helps, I told him I wasn't keen on a coil and he thinks it wouldn't be the way forward if looking to start a family.

The only thing I don't understand, he said I shouldn't/wouldn't be in pain all the time if it was Endo, but doing the research on adenomyosis that also says you only get affected by your cycles - has anyone else been given adenomyosis as a diagnosis? Any advice?

X

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Tboag profile image
Tboag

Hi, that's great, does he work in a BSGE centre, and on the BSGE list,

I was diagnosed in March last year with endo and Adenomyosis, I was/am in pain daily some worse than others and my period week being the worse, I had a hysterectomy for my Adenomyosis in July I am older than you 40 and gave children, unfortunately my endo hasn't been dealt with properly and I'm still in pain most days, my gyne said he had a interest in endo, but I beleave he isn't experienced enough to detect endo in certain areas,

I'm glad you gyne is doing a lap, but please read up on the nhs contract, there are certain areas/forms on endo that a genral gyne shouldn't be dealing with as per the contract, look up a lady on here called Lindle and read through her posts,

Good luck and I'm here if you have any questions

Xxx

in reply to Tboag

Hi, no he isn't on the list, but works very closely with the 'top dog' in my area!

Having my scan next week and he is sure it will show andenomyosis but I am not convinced!!

X

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