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View Full Version : At 23 had endo,at 55 its back


CowBone Chris
10-18-2008, 12:44 PM
This is scary stuff to me geeez
I am usually on Spinal Disorders Forum. I have Degenerative Disc Disease like many folks. I am now 55 and having endo like pain with pelvic floor pain.
At 23 I had huge cyst removed in left ovary, then pain subsided.
At 27 after months and months maybe a year or two of complaining I had bad pain, I had investigation by surgeon and as he was removing the laproscopic tube/camera/needle what ever, it ruptured my then huge cyst in the other ovary without knowing it. Of course I did not go home same day and got worse. Ended up in emergency surgery to save my life as it turned out.
They took out remaining ovary w/cyst, (chocolate cyst I was told) and tried to clean out the "Crime Scene" as I call it and clean up the endometriosis that had spread to bowel also. Part of fallopian tubes were removed and had to close me up due to I was failing fast. So the uterus was left behind.
I remained in intensive care for 3 weeks and fought hard but got out and never looked back. I had a 6 year old daughter and husband helping me fight.

1995, I begin lots of bleeding and pain. In surgery dr. removes uterus which is now attached to my bladder. So he has to peel the bladder off the uterus and staple the bladder as he goes.
Again, I get out and never look back, things are a OK.

2008 lots of ab/pelvic floor pain. I try to ignore it. To me I think it could be lower disc trouble so I back off doing more work around in hopes of avoiding another spinal surgery. ( I have had 5 spinal surgeries by now after the battle with endo)

My Pain dr. tells me to go get a bladder check from my gyno surgeon, if anything to rule out bladder is cause of pain and not spine. She advises me that this is something I need to do. I respect her opinion and go for it.

Last Wed. I had the bladder scoping done and I saw a very very red bladder and all of a sudden a very red spot, almost flat some variation in elevation to its formation but for the most, just red, maybe the size of a dime? I am shocked, my surgeon points it out and then says he is going to have to test my urine and see me in two weeks that something is wrong.

Away I go.

Well, I am going nuts with questions now. I think it could be the endo back and its outside the bladder wall and coming in through the wall. What do you think?

I also looked high and low for pictures on the web of what an infected bladder would look like.......no luck.....I did find one pic and it was close to what I saw but this picture indicated that it was cancer.

So you can imagine how anxious I feel now.

Now, I have had way too many serious surgeries to just stop here. I have been a member of this forum since the old orginal forum in 98/99.

I research everything like a mad dog because I learn from it and retain it well and help my family with advice sometimes when its helpful.

I am still on the hunt for any pictures that would show a bladder with infection in it.

Has anyone any knowledge of say endo going into the organ from the outside???? Could this be occouring to me.


I was put on estrogen replacement therapy since I was 27,,,,am still on the gel daily. My GP says stay on it, my gyno says it feeds endo, I have tremendous symptoms without it to the point I am miserable.

Any and all comments are accepted, I know its your opinion and I appreciate your time.

My surgeon (gyno) did confirm to me that endo can come back at anytime. In my case I don't think it ever left due to the spillage of rupture on top of existing presence.


Thanks for your time,
Your Spiney Friend
CowBone Chris

stef80
10-22-2008, 08:02 PM
Wow you have been through the wringer hey?? :eek:
well i am no expert on endo really since i only have a mild case of it (but extremely painful)....i do however know a bit about bladders....
i have interstitial cystitis and it sounds like you may have a version of that with ulcers....
also i go on the IC network all the time and there has been some ladies where the endo goes right through the bladder....and therefore causes IC symptoms...
heres the link for you and check out all the posts and such....
i think it could really help you out....
all lot of the ladies have had to have hysterectomies and such and have had some similar experiences....so even if its not exactly IC but you have endo going into the bladder then they can help you out....
the two people to look out for is ICNDonna and Kara29 (you can see ICNDonna's responses in a lot of the posts and Kara29 is under the bladder removal a lot since she had to get that done....you can send them a message if you register....and just check out all the forums on there....there are good ones in the End stage section since the posts are to do with ulcers and whatnot and also in the related diseases there are a lot to do with endo and so its definitely something to look at anyway and also people know the best docs around to treat you so thats good too and also SandyRN is a nice lady and she has had troubles too and she is under the PMS section that is underthe self help area....) http://www.ic-network.com/forum/index.php
well its something to look at anyway and there are ladies with similar stories to yours on there so i would say check it out and talk to them....
but you know now you are not alone....since i definitely have read similar posts on that forum so i hope it helps you out...
take care
*hug*hug

Lil E
10-29-2008, 10:15 AM
They took my uterus at age 31 and now I'm having pain in my left ovary. I had lots of endo attached to my insides so it could be back. My gyn says having a 2 to 5 centimeter cyst isn't enough to go in and take a look.