Endo above the pelvic area

Hi there - I was wondering if anyone out there has experience with having endo appear above the pelvic area. I had my gallbladder removed in May 03 due to a multitude of adhesions (it was only working 1%) and then I had a lap in July 03 to remove endo and found my uterus to be enlarged and unhealthy. The uterus was removed in Sept 03. I am continuing to have gastro problems that occur with my "cycle" time and now they believe my bile ducts are blocked. I have a strong suspicion that endo could be up high causing the blockage and I also believe that endo caused the gallbladder to go. I'm very interested to hear from anyone who has experience with endo up high and if anyone knows of any surgeons in the NC area who can both recognize and treat endo that is outside of the pelvic region. The doctors I have experienced just keep saying that endo doesn't go up high and they can't treat it anyway since they are gyns. Thanks, in advance for any help!

hi I had endo in by bellybutton, not quite as high as the gall bladder. I had an umbilical hernia repair and the surgeon found it in the hernia sac. That is actually how I found out I had endo, I have always had a LOT of pain and 2-3 week periods but my old gyn used to tell me thats just how it is for some women. The surgeon sent me for a ct scan and it show a large endometrioma in my ovary and fibroids in my uterus. I then had a lap and had all the endo removed (after finding a new gyn) and 4 mos later it was back so I had the hyst. When they were explaining endo to me they said they once had a case with it in someones eye, YUCH! Good luck.

Perhaps they did pathology on your gallbladder? THat might indicate if there was endo.... just a thought. I think they do pathology on anything that is removed during surgery.

I recently had surgery and the Gyn/Onc removed what he thought was an ovarian remnant only to find out that next day that the pathology report came back as cystic endometriosis.

I have heard of endometriosis in many places far from the pelvis. I have an acquaintance who had endo in the back of her knee. My doctor had a patient with endo in her calf. I have also heard of endo in the lungs... that even has a name... something like pulmunary endo.

It could be endo or it could be something else that is triggered by the hormone changes.

Best of luck!

Sarah

Thanks very much for your responses. They did do pathology on the gallbladder, but unfortunately, it said nothing about adhesions. The surgeon said he "meticulously took down the adhesions" but he didn't actually say he removed them and then the pathology only talked about the gallbladder. It has been really frustrating because I think that surgeon could have helped in figuring everything out had he been more detailed in his report. Now that he has moved to Texas, there is no way to find out anything more from him. It's just hard to figure out if the hormonal issues have been causing the gastro sypmtoms or vice versa. Maybe I'll get lucky and have the ERCP by the gastro dr and then be cured and won't need any more surgery. Wouldn't that be great!!! Thanks, again!

I had some adhesions taken down from my most recent surgery and they did not do pathology on them (one from the fatty sack around my stomach to my pelvis...some others adhering my omentum to my abdominal wall)... I think they must have just lysed them and left them in there... I know when my bladder was adhered to my uterus the doctor just left the scar tissue on the bladder.... and the pathology of my uterus talked about the adenomyosis...which is probably what caused the adhesions to form.

If you had endometriosis on your gallbladder causing the adhesions I do think it would have shown up in the pathology. If your gallbladder was inflamed from another disease process that could have caused the adhesions (for example, I had adhesions all over my appendix from chronic appendicitis... there was no endo found in/on it even though I had endo also in my pelvis).

Best of luck. Do let us know what you find out.



Sarah

Wow! Thanks - that makes a lot of sense that there should have been some evidence on the gallbladder of endo even without the adhesions as evidence. I hadn't really thought of it that way, but I did feel like if the surgeon had seen something really wacky certainly he would have told me even though he was going out of town. I guess I've seen some not so good doctors, so I wasn't quite sure what to think when his report had so many errors in it over little things (my age, referring doctor, how long I'd had the symptoms - he even said he examined me and I had a positive Murphy's sign and he didn't even touch me). All that was rather disturbing, so it made me wonder about things. What you wrote makes me feel much better. After my gallbladder was removed, my whole system was working differently, so I suppose it is possible that the gastro stuff affected the hormonal stuff and not the other way around. It really would be nice to only have to deal with one issue. I'll let you know what I find out. Thanks, again!

I have been having some problems with what i believe is my gallbladder, I have been on and off nausated upper abdominal pain! I have trouble eating and the fatigue is horrible, my hair is coming out in handfuls!!! Ok i went into the hospital in Jan of this year for a bowel blockage and they did and ultrasound and a Ctscan they said my gallbladder was fine, which i proceeded to tell him it was not....but guess what they found a growth/tumor on my liver....which was not there 21/2 month ago and that is about the time the fatigue and the nausea set in! So they did a tagged RBC scan thinking that the tumor was a hemangioma well its not and now i'm awaiting an MRI...we have no idea if its begnin or not....ok now i'm wondering since i'm on estrogen if it is endo? And after this test he is gonna do a hida scan to see if the gallbladder and liver are functiong properly!!!
All this makes me nervous but i want to know!!! Ohh and my doctor told me that the tumor is nothing don't worry about it...needless to say i'm the one pushing the MRI because that was not a good enough answer LOL
colette

Colette -

This may be a silly question, but what symptoms do you have when you have a bowel blockage? In trying to figure everything out for me, I have a few different scenarios. One thing I've been wondering is if my problem is that I have a hernia squishing my intestines that is then causing a partial blockage making going to the bathroom difficult and making my duct be blocked causing the liver tests to go up. It may be far-fetched, but at this point, I'm just trying to figure things out.

I know exactly what you are talking about with the extreme nausea, fatigue and it being so horrible that you constantly feel like you're going to barf. When everything first happened to me last year in early Feb, I was a complete mess with so much stomach acid and stuff coming up making me feel just awful. They put me on the acid reducers, which took a while to work, and I think they just masked the problem of the gallbladder until it was so bad it just couldn't function at all. My hair also started falling out in June/July after I had the surgery in May. In my case, I'm thinking my body was so stressed that the anesthesia caused the hair to fall out. My endocrinologist thinks it could be that I have Polycystic Ovarian Syndrome, but I'm wondering if the timing of it is more from the surgery. I also noticed last Jan before the "explosion" that I was super, super tired. If your liver is stressed it can cause a lot of fatigue. I sent you my home e-mail address via PM, hopefully we can converse more. I've come across some good websites and can pass them on if you like. I know in my case, that HIDA SCAN is the only thing that figured some things out. Talk to you soon!