1st laparoscopy is going to be booked... ... - Endometriosis UK

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1st laparoscopy is going to be booked... help...

Bethyxox profile image
8 Replies

hey, i was wondering what the chances of a normal urgent missing endo is ? i have had nothing show up on the scans .. so it can't be stage 4, im scared im stage 1 and they will miss it as I've heard stories ...

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Bethyxox profile image
Bethyxox
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I had no endo show up on my original scans done in general radiography at the local hospital. They found hydrosalpinx in the right fallopian tube and a few small cysts that they said were paraovarian cysts and nothing abnormal. They also had some trouble locating my right ovary but didn't think anything of it. They said everything was fine.

I have stage 4 endo with bells on and it would have been impossible to miss during the lap - in the photos, the visible lesions look like navy blue marbles and they're really obvious.

That said, I wish it was stage one and hard to see rather than the mess of stage 4 :/

in reply to

Jeez,how'd you come to find out you had eno if you dont mind me asking?my dr has asked for me to get tests for a few things including endo lol meant to type endo not eno and now i cant edit the mistake sorry.

in reply to

It was a long and difficult process. I'd always had horrendous periods right from the first one when I was 13, but they gave me mefenamic acid and told me it was normal. I regularly missed school b/c I couldn't manage the pain or bleeding. Spent my 20's on the pill or pregnant, then in my 30's the pain just got worse and worse, and I was also having all sorts of weird bowel symtoms (chronic constipation, bleeding, mucus in stool). Late 2014 the bowel symptoms were getting really bad (that's when the rectal bleeding started). GP did a few blood tests (coeliacs, chrohns etc) and told me it was IBS. Went back early 2015 as I was really struggling with my periods. He told me I was menopausal (I was 37 at the time). I asked if it could be endo and was told I didn't have the symptoms. May 2015, I collapsed at my son's swimming lesson with abdominal pain, but didn't go to the doc, as he'd insisted there was nothing wrong with me. July 2015 I had another bout of horrendous pain, this time at home, which was bad enough for my husband to call an ambulance. A&E doc ruled out appendicitis and ectopic pregnancy and said he thought it was gynaecological (ruptured cyst) and to ask my GP for an ultrasound. I went back to the GP who did the CA-125 blood test (the ovarian cancer test). It came back at 119 and he told us it was probably cancer. I waited 5 days for an ultrasound which ruled that out and was told to go back to the GP again. I decided not to see that (useless) GP again and went to see the practise nurse instead - she booked a colonoscopy as she said rectal bleeding is never IBS and it needed to be investigated properly, and booked me in with a different GP. The colonoscopy was clear and the gastro said endo was likely.

The new GP said straightaway that she thought it was endo as repeats of the ca-125 showed that it was persistently raised, but not climbing. I was then referred on to general gynae - saw him in November 2015 and he said he was sure it was endo. January this year I had my first lap and got a confirmed diagnosis.

in reply to

Wow,you really have been through it ,it makes a big difference if you have a decent gp doesn't it though?oh,!tell me then..,,did you go back to the gp and let them know of your diagnosis? Ive been at stage when bowels working getting ready to goto toilet cramping untill i felt as if going into full blown labour, clots had been back for 9months ,ive always had bleeding issuesi bleed for 6months yrs ago and have been on the same meds as you&i am again now,the pain is uunbearable though.

in reply to

I've refused to see that GP since and the other staff there all know why. I didn't put in an official complaint because TBH I just wasn't well enough and it was too much for me to deal with at the time. The biggest hurdle in my treatment has been getting someone at GP level to take it seriously. The level of ignorance and the willingness to dismiss anything period related as nothing just isn't right.

Hope it goes well for you. x.

Cupcake1617 profile image
Cupcake1617

I had nothing show up on scans either. Had my first lap done nearly two weeks ago and they found minimal endo but lots of scar tissue.

Bethyxox profile image
Bethyxox in reply toCupcake1617

Thank you .. I'm so nervous they won't find anything 😌

Don1980 profile image
Don1980

I had only a cyst show up in scans but then they found a small spot of Endo during my first lap

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