Has anyone else had this and if so where'... - Endometriosis UK

Endometriosis UK

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Has anyone else had this and if so where's your endo?

Emma5397 profile image

Iv been diagnosed with endo in December (14th 2016) I had two patches. Two bits of the ovian fossa and one bit of the left pelvic wall

They apparently removed to all and got told it will never come back...💩💩

I was pain free for three weeks and the all the symptoms have started to come back. Iv recently been getting pain up my private part, and feel like presser and everything was trying to get out. It's so pain full and uncomfortable, it's only happened a few times. I don't no if it's endo related?



11 Replies

I believe if it was diagnosed by a general gynae there's every chance they missed some they burnt two patches of mine away but were honest said it would grow back also said they wouldn't go near the band I had which was going from belly button to near bowel as they were not confidnt enough they said with my symptoms it's most likely due to endo sitting on large bowel I had a sigmoidoscopy to confirm it's not penetrated xx

The patches they burnt were on left side pelvic walk, xxx

Yeah that's were mine was but also on the right ovian fossa. I'm worried it's grown somewhere else xxx

How you being treated. Have you got another lap booked in xx

Not being treated atm, I'm on the pill and finally seeing the gynaecologist again next month after months of stress and pushing gps to refer me back. I'll find out then if I'm going to have another one x

Ok I guess your gynae isn't a specialist as they said it won't grow back did you have it lasered before? Don't let them fob you off xx

Funny thing is, she is a specialist😂 a very crap one. When I first saw her she told me it doesn't sound like endo, she's meant to be a top gynaecologist in my area😂 she apparently lasered it off in December xx

Is she bsge accredited? Wow that sounds shocking xx

If she was an endo "specialist" in my opinion, she wouldn't have simply lasered the endo (as there is far more chance of it returning quicker as it doesn't get totally removed that way, it needs to be fully excised i.e. cut away) and secondly, if she were a specialist, she wouldn't have said endo won't come back after surgery... it does. I'd see another consultant and ask a few key questions to determine if they are the specialist they proclaim to be. The hardest thing I've found with this illness is that it is down to you to be on the ball, ask questions until there are no questions left and only have surgery when you are convinced the surgeon will help and not hinder your journey. It is a horrible illness and made far worse if you land in the wrong hands. All the very best x

Emma5397 profile image
Emma5397 in reply to Sez73

Thank you xx

Sez73 profile image
Sez73 in reply to Emma5397

It’s taken you eight years to get diagnosed, I know how hard that is, I had over 20 years of endometriosis before I was finally operated on & diagnosed, no GP in the Uk believed I was ill & just said the pain was in my head, it was a chance chat with a GP in Sydney that started the long process to me finally tackling this illness. I can sympathise greatly but you owe it to yourself to find someone you trust, there are far too many general gnaes who are utterly hopeless and that’s putting it mildly! Try and do as much research as possible, get the right person and it can pay dividends, get the wrong one and you can be back at square one which is far too demoralising when it’s taken too long for you to get a diagnosis as it is. All the very best and trust your gut instinct. I finally researched one of the best surgeons (unfortunately now retired) and the best thing he said to me...”no question is a silly question, you are silly not asking me lots of questions and if I can’t answer them I’m not right for this job” good surgeons are very thin on the ground but they do exist. Get the treatment you deserve and lots of luck x

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