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I have to make some big decisions and I don’t know what to do. I have had endometriosis since I can remember, but it was confirmed 7 years ago. I have lost track of how many doctors I have been to and they have sent me away with “I can’t seem to find anything wrong with u" answers. I can say it is a relief to finally know what is wrong with me, but what do I do now. In the past 7 years, I have had two operations to clear out the endometriosis as much as they could but its keeps coming back, even in the same spots they cleared and it has gotten worse. I have done the lupron shots, I have done the birth control methods, I have tried yoga, and endless pain meds. The pain some days is unbearable; the hormones are running threw me like a mad man on a rampage. I cry for no reasons sometimes, stuff like the can won’t open or I burnt dinner simple little things that would frustrate normal people make me cry and cry hard.
Sorry for going on and on but Tomorrow i will go see the Doc and its time to make the final decision....Take out the uterus or continue the endless surgerys.
Posted on 01/25/13, 12:10 am
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Reply #11 - 01/27/13  3:40pm
" The first link posted by felana compares endo recurrence in women after hysterectomy with and without ovary preservation. Those with ovary preservation had a higher risk for recurrent pain and reoperation.

I'd be curious to know if any of the women who had their ovaries removed took estrogen. As has been discussed, estrogen can fuel endo growth. Yet estrogen deficiency after pre- or post-menopausal ovary removal has been shown in many studies to increase risk for heart disease, stroke, hip fracture, lung cancer, Parkinsonism, dementia, cognitive impairment, depression and anxiety. Progesterone or a progestin taken with the estrogen may reduce this risk of endo recurrence. "
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Reply #12 - 01/27/13  6:01pm
" PoisonedApple its fine if you enjoy hearing the negatives all the time.

The fact is, there are positives and they need to be voiced on an equal scale.

Hysterectomy is not a cure, but for some women it tremendously helps, and for others it doesn't.

It is a hugely personal decision and it is very different coming to that decision instead of it being taken away without choice. Someone is responsible then if it's not your choice to have it taken, when you CHOOSE all that blame is placed on you then if it doesn't work out. Hence why you need to be 100% ok with it.

I know more women who wished they had of had it done, even if they have pain afterwards the comparison is far better. I know (and mostly on here) women who have had it done and hated it.

I'm glad my sources of a hysterectomy go beyond here, because I'd hate for anyone not to be able to 100% feel comfortable with their decision based on all the negatives placed on here of a hysterectomy.

I'm sorry you may find it informative, but it'd be a lot more balanced if the people posting showed both pro's and con's instead of plastering all the cons.

It's always a 50/50 but its 10X more scarier if all you want to focus on is all the bad that MIGHT (but not necessarily) happen.

Sorry this is begining to infuriate me. I've seen it happen everytime someone comes here for help on this decision and their flooded with negatives. "
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Reply #13 - 01/27/13  7:25pm
" I've seen women on here who have had a positive experience with their hysterectomies. There was just a woman a few threads back who spoke positively about her decision for a hysterectomy. And someone in this very thread expressed that they were happy with their decision. So it's really not all negative posts around here. It seems pretty balanced to me.

Solely focusing on the positives is a great way to feel comfortable, but it doesn't erase the negatives. It's always good to be prepared so you're not blindsided later.

Well, good luck with whatever you decide, Trudince! I think The Endometriosis Foundation of America has some lecture videos/transcripts about hysterectomies (both the pros and the cons) on their website. You might have to dig around though because it's not organized well. "
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Reply #14 - 01/27/13  8:05pm
" NO ONE should make this decision based solely on posts here on the DS boards or any one forum for that matter. Gather information from multiple sources including forums of women's experiences as well as medical studies. Pay especially close attention to the experiences of women who're years post-op. Observations of women who've had hysterectomies (especially if you knew them before their surgery) can be quite telling.

Clarification on previous post -
"Progesterone or a progestin taken with the estrogen may reduce this risk of endo recurrence." This wasn't part of the medical study findings that found increased health risks of ovary removal. I added this statement based on what I've learned about HRT after hysterectomy for endo.

Also, one thing I meant to mention on my previous post is that I also have some back, hip, and rib cage pain from the loss of pelvic integrity. The changes to my figure are distressing too. These anatomical and skeletal changes don't occur overnight and are seldom acknowledged or understood. "
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Reply #15 - 01/27/13  8:15pm
" Trudince - Some women here have had some relief from pelvic floor therapy. I don't know if you've tried or considered that. You can find those posts via a search for "pelvic floor therapy."

Best of luck to you! "
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Reply #16 - 01/30/13  6:58am
" trudince, I guess you don't need a thousand people telling you the same thing, but I am also in the EXACT same boat as you. I am on my last option before having a hysterectomy-the mirena. My doc said it could take up to six months to know if it is working so if I can wait that long, I am going to see if it works. If not, I will have a hysterectomy. For me, the problem with the hysterectomy is that it is just so FINAL. Like, no matter what, I will NEVER have any more biological kids. It frightens me how final that is. I am an Orthodox Jew and in my community people have lot of kids. The thought of not being able to have is so scary for me. I don't want to sound like a pig, and I probably do, because I already have two wonderful children, but in my community people look at me like I'm an alien to "only" have two. And that hurts so much! So the thought of the finality of the hysterectomy brings me to tears every time I think of it. But I know that if it can help my pain and give me my life back I HAVE to do it. Sorry to make this post all about me. My point is that I am with you and completely understand the hardship in making this decision. "

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