Abdominal wall endometriosis

[Brittany1989]

Hey well I had a ct scan with iv contrast done a couple months bc I had microscopic hematuria which is blood in urine only seen under a microscope they wanted to look at my abdomen and pelvic areas for abnormalities, tumors, etc. Well they found a abnormalty growth in my subcutaneous fat and the appearance is suspicious for abdominal wall endometriosis I'm sure it's this big round knot that has been on the left side of my csection scar for years now won't know more til tomorrow when I go see my gyno but I have been complaining about it for years and all they would say is its scar tissue. I had 3 c sections. They symtoms from it so far is its sore and hot during my period I can feel it pull when I cough and I have lower back pain sometimes constantly and sometimes only when I bend over I have striking pain at the bottom of my back I cant wear tight pants either or anything near there it hurts it bad. I researched this and there isn't much on it I would love to know other people's experiences with this please

[EmJo33]

Hi, I have exactly the same thing! Have been told it is extremely rare and not the norm from the average endometriosis. But it is just as painful.

All my symptoms are the same as yours. I am currently trying to find a surgeon that can help in this field. Although there are many endometriosis specialists out there I can't seem to find one that has experience in 'abdominal' endometriosis.

I see you put up this post 7 months ago, do you have any updates?

EJ

[juliechilli in reply to EmJo33]

Same here. I just found this board. I have suspected AWE. I've had excrutiating pain for the last 8 weeks around the clock. The only thing that helps me is a nerve blocker and my heating pad. My pain is burning, stabbing, searing nerve pain. My ultrasounds and MRI showed a small 2.5 cm mass in my right, lower abdomen near my C-section scar. The first surgeon I saw is booked for the next 3 months so I'm going to another one in a couple of days to see if he can take me on and we can get this mass removed. This is the most pain I have ever been in in my life!

[EmJo33 in reply to juliechilli]

I'm so sorry to hear you are going through this. It sounds very similar to mine. When did you have your c section? The first surgeon you saw, did he say how he'd remove it?

I hope you get better luck with the next surgeon.

[juliechilli in reply to EmJo33]

My two sections were in 2006 and 2007 so this has been brewing. I also had my tubes tied laporscopically (sp?) in 2009.

I would have a burning pain with my periods for the last few years but it wasn’t bad and it was only once a month.

Recently it’s all the time which prompted my first ultrasound.

The first surgeon said he would open up my old scar and remove the mass.

I have always had very heavy flirty cramps periods but never had endo to my knowledge until now.

I’m also on a continuous pill to keep everything from flaring up which is annoying as I am retaining fluid and gaining weight esp because I haven’t moved much in the past couple of months. Just trying to get this taken care of without losing my mind.

[Stresshead24 in reply to juliechilli]

Hi did you have this removed ... I've just been diagnosed with abdominal wall endo (hard painful lump near my belly button on a previous scar) and cant find my info about having it removed and what it's like after etc. Any info would be really appreciated xx