Should my endo be removed : This is the... - Endometriosis UK

Endometriosis UK

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Should my endo be removed

buddyhorse
buddyhorse

This is the kind of endo I have .docters report.spots of endometriosis on the left uterosacral ligament left ov fossa and pelvic peritoniem over the right ureter because of thetyhe proximity of the endo on the right ureter it was decided not to treat it .so my doctor is saying they can't remove it is he right

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Hidden
Hidden

Are you with a regular gyn or an endo specialist?

There is a possibility that it's risky to remove because of the location being the ureter.

buddyhorse
buddyhorse in reply to Hidden

Not with any really if I get problems they refer me back

Hidden
Hidden in reply to buddyhorse

Did the speacilist do your last lap?

I can see reasons why they wouldn't want to though because the ureter gets rid of toxins and if they cut endo there, there could be damage and further complications. But still endo causes scare tissue so I wonder why they didn't do it. I would ask the doctor who operated on you to find out because if it's just a matter of 'they couldn't reach it' I would push for another lap.

buddyhorse
buddyhorse in reply to Hidden

Yep he did the doctor I saw yesterday said if I keep haveing problems he will send me back to him

Hidden
Hidden in reply to buddyhorse

Hopefully it gets better:) Best wishes, I understand about not that much specialty out of UK, I live in Canada and my gyn doesn't even want to do the initial lap and there are 2 speacilist sun the city.

buddyhorse
buddyhorse in reply to Hidden

It sucks when you can't find people that should be able to help you

Because of the type of endo you have, you should be referred to a bsge specialist centre, unfortunately GPS and some gynes don't know this, nhs protocol states that the uterosacral ligaments should only be dealt with by a specialist,

Have a look on the bsge website, find a centre near you and get referred, they can and should remove all endo, otherwise it will get WORSE,

Your gp can refer you,

Have a look at a lady called Lindle on here, read her posts, they are great, and will explain everything about the nhs contract ect,

Don't delay, get your refferal today, xxx

buddyhorse
buddyhorse in reply to Tboag

That's what I thought dumb doctors don't no anything

I had endometriosis in the places you mentioned and I had a laparoscopy to get it removed. My specialist was very good and there were no problems with the surgery. This was in Canada with an endo specialist. I am now under the care of a BSGE centre as the endo has come back. I would say an endometriosis specialist would be able to remove your endo with no problems, so try to get a referral to a BSGE.

I'm in nz and they don't no mutch where I live I was put on the depo and it helps but the last three weeks it's been playing up with palvic pains and needing to pee a lot and my bp was up to

Is it ok if I ask what your symptoms are to see if it's the same as me

Of course. My symptoms are very bad pain during menstruation, very heavy bleeding with lots of clots, pain during sex, back pain radiating down my legs (mostly right leg, but during my period also my left leg, very like sciatica). I also have pain when I empty my bladder, which is worse during my period.

Sounds different than me you must have it in more places than me I only have it in the places I have said in my post nothing on the overies or any of those parts so it's strange

I don't have it on my ovaries either, mine is in my utero-sacral ligaments, peritoneum near my uteters and Pouch of Douglas. I think the back pain/sciatica comes from the endo on the Pouch of Douglas.

please make sure you are referred to & managed by one of the UK''s nationally recognised & accredited specialist BSGE centres. I am very fortunate in that my GP did a rotation with the the team so she referred me straight there last year. I have stage IV with RV & Ureter involvement + extensive Adenomyosis & massive fibroid. I've been receiving a monthly Prostap injection for 10 months now which has bottomed out my Estrogen & stopped my periods & the Endo has shrunk right back. It's a temporary non-surgical way of managing it & has given me immense relief. I will be having a hysterectomy & extensive endo excision surgery next year & will likely need a hopefully temporary ileostomy. All of this was diagnosed through various scans & invasive investigations at my BGSE centre. my consultant gynaecological surgeon is fabulous. I also take 'add-back' bio-identical hormones to protect against bone mass density loss, increase my libido & just generally give me energy & stamina - daily Estradiol gel, daily Testosterone gel (Testosterone is ace!) & Progesterone pessary at night every 4th night. it all works well for me. I've also had a bone mass density scan & I take a calcium & D3 preparation daily that I've been prescribed. dreading having to come off the Prostap prior to surgery but I'll deal with that when we're at that place. hope this help a bit x x

buddyhorse
buddyhorse in reply to uplivity

I wish I was in the uk you have so mutch help for endo over there but I live in nz and where I live the doctors are a bit crap that's why I go on this site because people are so helpful and it helps to see other people's stories and comments so thanks so mutch everyone

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