What next 🙁

[anonymousunicorn]

Hi all, newbie alert!

After 9 years between appointments etc I have had my laparoscopy Thursday and now have an endo diagnosis.

I thought I was pretty well prepared for the potential outcome/findings however feeling so overwhelmed with where I am at now.

Has anyone else had a gynae diagnose but not fully treat?

Surgeon set pretty low expectations asif she wasn’t expecting to find anything but clearly that wasn’t the case..

The notes state my ovaries were stuck to the back of my uterus (released) and some endo cysts which were drained however she’s then said there is endo in POD and eterosacral ligament scarred/inflamed/thickened.

She’s said I need to heal for 4 months then go in for round 2 with an endometriosis specialist. Is this normal? Does the ligament involvement explain bowel/bladder symptoms? Should really focus on healing but am worried about what happens next..

[me94]

Sorry to hear that it's taken you so long to get diagnosis. 4 months for next surgery sounds good. For me my gynae couldn't remove my endo either on my last lap so said to be referred to a specialist. So I guess I will be on a long waiting list again to have excision surgery. Is yours on the NHS?

[anonymousunicorn in reply to me94]

Thank you, sorry to hear that but reassuring to know it’s not abnormal, I guess I was just hoping this would be it over and done with for a while! Yes all NHS. Am surprised with the quoted wait for a specialist as where I am it’s 12 months plus for a general gynae appointment.

[Starry1977]

Endo in POD can create bowel symptoms. I have it there and I get constipation and pressure in my bum.

[Mcyizml2]

if you have deep infiltrating endometrisos I believe they refer to a specialist centre so you can be seen by a multidisciplinary team including colorectal surgeons. If you google specialist centre it should come up. There’s an nhs specification which sets out the standards. Just to say though that surgery isn’t the only option - my specialist has helped me to choose to avoid it by inserting a coil and another mri in a year. For me that was possible because I went on a diet and massive exercise bing and it actually made the pain much more manageable (wasn’t the international was just trying to look better but it had that effect and the consultant said it did the trick 🤷‍♀️)

[Marcia71]

it sounds like this wasn’t done at a bsge centre and you need treating there as endo on uterosacral ligaments that shows thickening it rectovaginal endo and needs treatment in the multi disciplinary team at the centre. I don’t know how they’d know how long surgery would be - it maybe a minimum of 4 months away but could be longer and this is quite usual when more severe endo is found than they expect. Nowadays mri and scans should have been done first by someone trained in endo to map out your pelvis prior to surgery and the centre will want to do that to make sur they have right team ready for your surgery.

If you’re on Facebook then can I suggest you join a group called endorevisited as they can help guide you to appropriate treatment.

facebook.com/groups/1148144...

[anonymousunicorn in reply to Marcia71]

not sure what you mean by bsge will have to look into it, the hospital I am under is the regional endo specialist site so thought I was in good hands. This is the first I have heard of scans picking up endo, is this on the NHS that the receive this?

[Marcia71 in reply to anonymousunicorn]

bsge is British society of gynaecology and endoscopy but specialist endo centres are called bsge centres as it’s the bsge that give them accreditation.

And yes nhs do scans that pick up endo. The people that are trained to do it are usually at the specialist centres so do ask yours who their trained sonographer is.