Endo in Strange Places?

Just wanted to say Hi! to everyone. I've been lurking and reading for a couple of weeks, and you've already answered a lot of my questions and eased a lot of my concerns. I'm 44, never able to have children, and was diagnosed, via lap, with endometriosis about 12 years ago. I've toughed out the pain and several different hormone regimens, always hoping to get pregnant, but DH and I have now accepted it isn't worth enduring this any longer. Plus, an U/S last week shows that I now have fibroids and multiple complex cysts on my right ovary. Dr. gave me choice of another lap followed by Lupron, or TAH/BSO. DH and I have decided I'll be a punctured princess! I had my endometrial biopsy a couple of days ago, and I see the doctor again to make the final decision and schedule surgery on 1/17.

I'm ready to get this mess out, but the only thing that may stand in my way is some unrelated (maybe) problems I've had lately. I have episodes of racing, pounding heart, sweating, severe headaches and feelings of anxiety. My blood pressure was severely high for several weeks, and I'm now on three different meds to control it. I still have the episodes, though, just without the high blood pressure. I've been tested once for pheochromocytoma (an adrenal tumor), but I wasn't having symptoms at the time of the test and it didn't show anything. I had another episode this morning, so I'm now collecting urine for 24 hours for another test. If this one is positive, that's going to affect the scheduling of the hyst. Surgery can be very dangerous with one of these tumors if the surgical team isn't prepared to deal with wild fluctuations in blood pressure.

Both I and my OB/GYN nurse practitioner have a theory, though, that all those symptoms might be caused by an endometrial lesion on the adrenal gland. Most of my episodes come near the beginning of my periods (which are coming every 2 weeks now and lasting 10 days - UGHHH!) And, to add to the misery, in the past couple of weeks, I've developed really bad pain in the right upper abdomen, right under my rib cage, that radiates around to the back and sometimes up to the right shoulder. Dr. thought it was my gallbladder, but that checked out fine. I've read of a few cases of endo on the diaphragm that causes these symptoms.

Has anyone here ever had or heard of endo in such strange places?

Interesting theory... I s'pose it could happen... Here's some info I found with a little late night web surfing:

Note- this is a DOC file, not HTML, so it will launch Word on your computer:
http://www.library.uthscsa.edu/ms2/P...ndometrium.doc

Here's a quote:
"B. Endometriosis: Defined as endometrial glands and stroma occurring outside the uterine corpus. ... Rarely endometriosis may occur above the diaphragm (pleural and nasal cavity). These foci, in contrast to foci of adenomyosis, usually cycle with the intrauterine endometrium. ...

Etiology of Endometriosis: This disease is ascribed to implantation in most cases. ... Lymphatic or hematogenous spread could account for distant foci of endometriosis in lymph nodes and above the diaphragm. "

Here's a good general endo paper,
http://www.hekim.net/~erenus/endometriosis.htm
And a quote from that:
"Lymphatic and Vascular Metastasis
The theory of endometrium being transplanted via lymphatic channels and the vascular system helps to explain rare and remote sites of endometriosis, such as the spinal column and nose. Endometriosis has been observed in the pelvic lymph nodes of approximately 30% of women with the disease. Hematogenous dissemination of endometrium is the best theory to explain endometriosis of the forearm and thigh, as well as multiple lesions in the lung."

Here are some CT images of what doctors thought was appendicitis, but turned out to be endo on the appendix:
http://home.earthlink.net/~radiologist/tf/052101.htm

MRI images of "extensive endo" (in the usual places):
http://home.earthlink.net/~radiologist/tf/072301.htm

Just a good general endo site:
http://www.obgyn.upenn.edu/IVF/endom...treatment.html

Best of luck!

Lou I too had endo and can relate to some of the pain that you are having. I was a mess before my hyst and swore I was falling apart. First, yes endo has been found in many parts of the body. They have found transplants all over the place.
I too was having signs of gallbladder problems before surgery and had the very pain you are talking about. I was sent for an ultasound which came back fine. Then had an endoscopy that showed I had some kind of bacteria (cant remember the name of it) in my stomach. Treated with 2 antibiotics and prilosec for 6 solid weeks. Still had the pain. Then had an colonoscopy and everything looked good. Doc was stumped and diagnosed me with GERD and IBS. I was also having heart palpitations, chest tightness and sometimes felt like something was blocking my windpipe making it alittle difficult to breath. Had EKG, and a couple other tests, sent me to a cardiologist and everything looked good with the exception of them saying my mitral valve was alittle floppy but that that would not cause the palpitations. He diagnosed me with Mitral valve prolapse syndrome. Anyway, these thing continued to happen and I was not getting any difinitive answers. My Gp had thought it might be a thyroid problem and once again tested my TSH levels. (had been checked about 4 times previous) It came back within normal ranges so he wrote that off. My last TSH test was done in NOV of 2000. My hysterectomy was in DEC. Within 2 months of having my surgery everything decided to take a turn for the worst. First we thought it was hormones but then some of the symptoms just were not hormone related. My GP ordered a slew of tests trying to see if maybe the hyst brought an underlying problem like diabetes to the surface. My thyroid test (TSH) test this time came back way out of normal ranges. The surgery was enough to make it just go completely into failure since it was already weak. I started seeing an endocrinologist and ALL the symptoms I had were symptoms of a thyroid problem. THyroid disorders can cause all kinds of gastrointestinal problems. So can gallbladder disease though too. I have Hashimoto's thyroiditis. It is an auto immune disease. It is where there are antibodies that attack the thyroid until it is virtually useless. It does take some time though for it to finally fail. My doc said that if someone had done a full thyroid panel including testing for antibodies, that they would have found this years ago. Since treatment, I have NONE of these problems anymore. All have subsided. I did however have some gallbladder problems after my hyst when I was using oral HRT. Had a terrible gallbladder attack. Since starting the creams, I havent had any problem with that either. I'm not saying that this is your problem but it is worth checking to see.
A full thyroid panel would include a TSH, Total T4, Free T4, Total T3, T3 uptake and of course testing for the antibodies. It couldnt hurt anyway.
Here are some links to articles and one to a site that gives some info on all the symptoms that you might see with a thyroid or adrenal problems. Hope they help some S
http://www.drrind.com/symptoms.asp
www.hormonejungle.com/thryoid.php
www.hormonejungle.com/janie.php

go to www.endometriosis.org

It's been found on the diaphragm, aorta, nasal passages, on the leg..you name it...it's been found there.

The video here has all the "strange places" mentioned and one lady who does have it on her aorta speaks...