Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Uerteral Endometriosis?

Jessye
Jessye
So...I told you guys about my lap on 3 June...& how the doc said I had Endo on that tube between kidney & bladder, etc etc? Well, after researching it, I found out that 'tube' is called the Uerter...& holy crap. In this link (among other websites explaining Uerter Endo) it says that having Endo there can cause some really extreme issues, even renal failure or kidney removal if undected for a long time or not treated!! It says this is rare, but I wonder if it is a possibility that I can devlop these issues if I do not get that Endo removed soon. Has anyone else had Endo in this area? If so how was your pain & did you have it removed?

http://www.home-remedies-for-you.com/articles/2266/diseases-and-ailments/ureteral-endometriosis.html

It's funny, because when describing my pain to my doctor I would say that the pain is sort of high up, like near my kidney, and what do you know? I was pretty damn close!! Haha...not bad considering I haven't a clue excatly where most of my organs are located beyond a general area! Strange huh?
iworry
iworry
I also have endo on my ureter. My doctor did not remove it because she said that it was tiny enough that as of right now, it is a higher risk to remove it than keep it. She told me that scar tissue would build-up much faster and be more likely to cause a blockage than the endo in it's current state. Mind you, she does have me follow up about every 3 months to check up on things and sometimes ultrasound. I was diagnosed with that three years ago, and I have not had any kidney issues (that I know of, anyway). I guess it would depend on the extent and exact placement of the endo growth. Make sure that you are with a great doctor that you trust, and I think it will really put your mind at ease. I really trust my doctor and it makes it a lot easier not to worry :)
felana
felana
I don't know if it's quite the same but I have 'deep fibrotic disease surrounding the ureters.' So maybe it's not ON them, just all around them? I know my surgeon had to perform ureterolysis in order to make sure my ureters were safe during surgery. My pain was lower than kidney level so I don't think it was symptomatic on the ureters...I have had several kidney stones in the past though I believe that is unrelated.

I would certainly keep a close eye on anything kidney related though as obviously it can be serious - kidney pain, changes in urine color, pain with urination, etc. Also I know it's possible in severe cases to put in stents.
Jessye
Jessye
iworry-Your situation sounds pretty similar to what my doc said..well, she just said that the uerter Endo was kind of "small" right now (plus with her lack of experience, I'm glad she didn't f*** with it). Also, I am going to a new doc on Tuesday so hopefully I can keep him & build a rapport!! Would be nice to have a good stable doctor!

felana-Wow that souonds extreme! Isn't that pretty much the same thing, just a scary name? Hmm. Yeah you probably know what kidney issues feel like!! I can't imagine what a kidney stone is like. & so far I haven't had any kindey issues (like blood in urine or discoloration) so hopefully it just stays dormant!!! Thanks for the advice guys!
deleted_user
deleted_user
I also have endo on my ureters. My endo has gotten so severe in the last few years I have finally opted for the full hysterectomy with removal of both ovaries. During my last laparoscopy the surgeon found endo covering both ureters and one ureter was partially stuck to my bladder with adhesions. My doc says during my surgery he will put stents in the ureters and then try to remove as much of the endo as possible from them. He says it is quite risky but he thinks its more risky to leave them in that condition. He told me if I left it much longer, I could end up with permanent kidney damage. So yes, I would definitely keep an eye on it! If you notice any bladder or kidney symptoms I would have it checked ASAP!
Jessye
Jessye
candyrae-Ouch!! I'm sorry that the pain is so bad that you are getting a hysterectomy!! I also didn't realize how risky it can be to remove Endo in that area. I guess that explains why my doc was extra afraid to touch it! Did it work even a little when yer surgeon removed it? I will also keep an eye out for kidney troubles..hopefully there won't be any!!! Thank you for sharing & I hope you get some pain relief soon =D
endowife
endowife
By endo, did they mean adhesions or actual endo cells? I had adhesions all over that area and had it removed by a surgeon. He was happy my first doc didn't try to remove it because in his words 'I have had to fix problems OB/guns cause in that area by slicing it too many times.'

I went with a surgeon who specializes in ovarian cancer surgery and the like. He did a fantastic job. :-)

I had frequent uti's for years, and what do you know, I haven't had any since (knock on wood). Other than that, I cannot claim any other symptoms specific to this condition.

Hope this helps.