Help !with seeing a specialist - Endometriosis UK

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Help !with seeing a specialist

Afrohair profile image
7 Replies

Hi there I wondered if you could help I saw my general gyn again today he said what would you like me to do I said refer me to a specialist for a lap so he starts writing up paper work and it looks like it’s diagnostic where they open you up it does say treatment of endo but I thought general gynaecology aren’t skilled enough we don’t have a specialist here !my gyn already said he thinks I have recto vaginal endo which is stage 3/4 but it was the worst appointment ever he had lost his voice and wispered through the whole appointment and didn’t even recollect our last meeting asking me things like why am I on the pill ?when he put me on it.then had some other lady saying diet won’t help your endo what should I do is it standard to have this diagnosis lap I really just want it treated they said that would happen but I have signs of severe endo but not on paper !only gynaecologist word for it I do have a private specialist booked at end of month for his feedback but so worried with all this I know some people would be happy for a diagnosis lap but I’ve had 2 open surgeries on my abdomen and then will probably need 2 surgery cause of my bowl bleeding and I plan on having another baby which then will be c section I’m not allowed to have a natural birth .sorry for the long winded post

Ps letter says agreement to investigation or treatment

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Afrohair
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7 Replies
luthien profile image
luthien

Ahh nooo :(

If you're expected to have recto vaginal endo you need an endo specialist and a colorectal specialist present not one general gynae.

If you'd like excision of endo that should also be carried out by the endo specialist.

Your notes mention benefits of finding out, so seems investigatory. Mine said reducing pain and symptoms.

Be careful with the proposed procedure as it looks like they may decided on hormones (+/- treatment with a diagnostic means they cannot remove endo); I've heard women wake up to be told they have a coil, that would freak me out. So pay attention to the notes as you'll sign that when you go in for your lap so it should be as clear as possible. I'm not keen on the +/- as it suggests they may do those not they will do them if they find reason; I get that some things like with mine it was +/- biopsies but that's more specific.

Also bear in mind that it is subjective; your gynae may not be the one doing the actual lap so another surgeon could think differently and read some things as maybe.

Your private specialist will be the one to do your lap, as that's how they work. You can still go privately for the initial appointment and then have the same private specialist do your lap on the NHS - not sure if it will be excision though.

Afrohair profile image
Afrohair in reply to luthien

I wondered what those + minus meant.im so stressed with this outcome but all my family think it’s positive. I’m sure it’s just a general gynaecologist.i tried to explain in the pre op appointment but she said that a lot of people are trained in endo now so can remove it and I didn’t believe her.thing is my general gynaecologist has now dismissed even seeing me before which is frustrating when I only had an appointment 5 weeks ago .he forgot he put me on pill or even mentioned bowl bleeding and has referred me for a ultrasound again rather than mri I’m thinking of pushing for the mri or just hoping the specialist can help me.the stress is getting to me now cause my partner Dosent want me to spend money on surgery he thinks I should have this lap

Afrohair profile image
Afrohair in reply to Afrohair

Also he mentioned Mirena I said I’m ttc for the 3rd time I’ve said that

luthien profile image
luthien in reply to Afrohair

I would see what your private specialist says, at least treat that as a second opinion for now.

Just keep your options open, personally though I wouldn't want that general gynae from what you've said anywhere near my insides thanks!

Go with your gut feeling, if you don't like them then that's fine, just push for a different one, preferably endo specialised. Of course they call "all treat endo", that's just putting a coil up you, that's not the treatment you have in mind so keep pushing for what you want :)

It's your decision, not your partners, he may be looking at the quick options rather than the longer term, which is what you're considering. I guess he's worried that if you decline that gynaes offer you won't get it again, but you know from reading here that you can be offered better options than that.

Perhaps take your partner along to your private appointment; my hubby found it really useful, my specialist even took the time to explain things to him, like how things are, what it affects, what he can do to help, and what the operation can involve plus longer term outlook. My hubby said it gave him a clearer picture of whats going on.

Afrohair profile image
Afrohair in reply to luthien

I read his profile and he has only been practicing just over a year worried me

luthien profile image
luthien in reply to Afrohair

perhaps he's not the one for you then, yours isn't a simple case so you need a specialist

obviously they all start somwhere but a more straightforward case first so if perhaps yours was a 1 or just "not sure so take a look" but it's more than that

Afrohair profile image
Afrohair in reply to luthien

Yes I’m bringing my partner to this private one as knew I would have more time my partners not great at understanding these things thanks for your support

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