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Old 04-16-2007, 01:27 PM   #1
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eggysbrain HB User
severe endo...now what?

I had my first lap about 2 months ago..as the doc suspected, they found endo. I didn't realize how bad it was until I went to see her for my post op appointment. The nurses at the hospital told me it was a 'textbook' case, which I assumed meant, like a standard type of endo, whatever that means. But the doctor told me it was bad. I said "How bad is bad?" and she made this face like :| "Its bad". She started telling me about how if I wanted children my husband and I should consider the possibility of doing it asap....there was a large patch on a blood vessel which she couldn't remove during the lap..and I am still in agony now, even afterwards. Is this how its going to be forever? I dont want to live the rest of my life on painkillers, hugging hot water bottles. The doc put me on birth control but its turned me into a hormone monster. I'm so...ugh..I dont even know. I dont even know why I'm writing this. Can anyone relate? ...

 
Old 04-16-2007, 03:33 PM   #2
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willo1980 HB User
Re: severe endo...now what?

I can relate. Endo sucks. You can burn it off and it just grows back! It's like a den of roaches that keeps on coming and coming. And it hurts! My advice, if you want children do it now, before it's too late. Having a child won't cure endo but it will make it shrink. You may even remain pain free for several months after the birth. I am currently using the Mirena IUD. Had it put in on Friday. I had a TERRIBLE time with s/e from the pill and nuva ring. In my case, it was either hysterectomy or try the mirena. So far I haven't had any problems with the mirena! *knock on wood*

Good luck finding something to help you. Don't let the doc bully you into narcotics or bc's, if you don't want them.

 
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Old 04-17-2007, 10:20 AM   #3
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Posts: 170
declansmom HB User
Re: severe endo...now what?

HI there,
I too was just diagnosed with severe endo. I am just two weeks post op from my lap, hysterscopy, ablation. I had a one week follow up and she explained the endo is on some major organs and blood vessels that most of it was not able to be cut out. One good thing is it has not reached my tubes or ovaries as of yet. Just my bladder, vessels, apprendix and covering my uterus. I also have a lot of scare tissue and thick adhesions. My Dr too made a point that it was a bad case of severe endo. I have one son already....it did take us about a year and a half though. But we did it on our own. My Dr said we need to make our decision in the next few months if we are going to have any more children or be treated with an endocronligist to keep it from spreading to my organs. Another problem i have is i am hypothylamic suppressed so my body is not producing hormones correctly.

I feel clueless and shocked...but releaved after reading info about endo that it is exactly what i experience. Horray, I am NOT crazy!! My Dr gave me percocet to help with pain and it helps alot. I also have cataflam which helps take the edge off. But I do feel like to be happy and pain free (my pain is all the time no matter what time of month) i have to be on drugs.

I am considering a hysterectomy but my Dr and everyone else on this board says it may not be the way to go. So i really need to reach out and learn more about endo.

I am here for you!
Lisa

As i understand it, this is our life from now on.

 
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