Adhesions no endo found but said could be in the muscle?!

[Jb_x]

In 2017 I had my first lap. Found adhesions. Was my ovary stuck to pelvis or something like that. They asked if I had surgery before as that could possibly cause it but this was my first surgery. She said it could be in the muscle and/or could be adeno it wouldn’t be able to say for sure unless it got removed And put under microscope.

I have all the symptoms of endo. I bleed so heavy it goes through 2 pads, 2 pants and through jeans just siting and not running/moving about too much. The pain is unreal, even jus lying in bed and trying to get up, it’s like someone stabbing me and pulling my womb down. Like I feel bruised inside if that makes sense? Also painful during sex at times.

I’ve had scans before op and after op which has never picked up anything apart from in 2014 when I had a large cyst on my right ovary. I was in so much pain with it I had to get my husband to help me get up, go to toilet etc and had to stay off my work. About 2 weeks later it settled down and then 6 weeks after the initial scan it went away itself.

I have been on and off pills, jag, mirena coil etc for years. I don’t know if this has helped keep it at bay a bit.

I have now just recently came off the coil and pill. I was on both as the coil only worked for me for about 2 years. I’m in so much pain with all symptoms above.

Through the years I’ve had this constant pain in my left pelvis that does not go away. No scans picked up on anything apart from that one in 2014. I got a colonoscopy 2017, again when they went to a certain bit round that area I nearly jumped off the bed.

My left side atm which was the one that had the adhesions on has been agony even just lying in bed, anytime I move or still.

The right side I feel pulsing and going into my leg. Also feel quite sick at times with the pain.

I’ve had a colonoscopy before I had lap. They put it down to severe ins. I was on medication for this but had this under control and no medication for a good 2 years now.

The reason I came off the hormones is my mum had bc due to hrt and is no longer here due to that.

Any advice, help, your own story or similar situation would soo appreciated xx

[Heloo85]

First and fore most, a diagnosis of Endo can depend on who did you first Lap! Was it someone who actually had an interest in Endo, not necessarily an Endo specialist is needed but best to go with one with interest!

Secondly, Endo isn’t the only disease that can cause adhesions, and not just surgery.. An infection can, and I’m not saying an STI! I have had 2 severe non-sti pelvic infections and more chronically low level infections that have complicated my insides.

Also, no one knows what causes the most pain! I have diagnosed stage 4 die, currently active, proven by scans... My symptoms, are daily! They effect my ability to walk, stand for long periods or sit for long periods.. They do not wax or wane with my circles... So what is causing my pain? The Endo or the adhesions sticking my organs together? I would say, because it’s daily and doesn’t change with cycles, it’s likely the adhesions...

You can also get an unknown adhesion disease, where adhesions form for no known reason! Probably autoimmune.. but no one knows...

I say, focus your attention on your pain and get that properly diagnosed, and not a disease you may or may not have! Write down your symptoms daily, then take them with you to the gp or gynea.

Best of luck xx

[Jb_x in reply to Heloo85]

Thank you. I have had other causes of pain looked into, seen different specialists over the yeas to rule out other things, my mum has this history too. I’ve seen a few people on here same situation as myself, had a 2nd lap and been diagnosed then. I’ve never had pelvic infections, stis etc. Literally been tested for everything over the years and it seems to be the only thing it’s pointing to. Xx

[Heloo85 in reply to Jb_x]

I’m actually not saying it isn’t, but I’m saying if you go to the Drs with a symptoms diary, they will fingers crossed look into it! If you go saying what that you have endometriosis, they will say they’ve tested you for that, and you don’t! I’m under BSGE and have been for 4 years since excision surgery, and at every appointment been told my scans are clear, and it has just turned out it was all lies....... But if you say ‘I’m suffering from x,y,z and I want that sorting out, then the least they can offer is surgery to deal with your adhesions which may discover Endo! Xx

[Bex23007]

This looks like I could have written this!! I am in exactly the same boat. Daily pain, but lap said no endo but stuck ovary (oddly my right was stuck but left is where I have the pain!) after you healed from your lap did the pain go away? Thank you x