oh hun im sorry for what you are going through..you have so much thinking to do. i think the main thing is that you a pain free so you can have a happy life and to be able to enjoy your family...i hope every thing work out for you...goodluck...goodluck...

Having endo must be really tough; I feel for you! I didn't have endo but did have a hysterectomy 6 years ago and regret it daily. Read my profile to see how it turned my life and health upside down and I was almost 50 (OLD compared to you).

I don't know if you've tried Lupron but the negative effects on health can be so detrimental that it's recommended that it not be taken for more than 6 months. Female organ removal is worse than permanent Lupron. Taking estrogen MAY make life more tolerable but can also be like miracle gro for any remaining endo implants (it's almost impossible to remove ALL endo).

There are also anatomical / physique changes that are permanent and progressive after hysterectomy. The severing of those uterine ligaments will cause your rib cage to gradually fall towards your hip bones causing a big belly and back and hip problems.

Here's a video about the lifelong functions of the female organs -
http://www.youtube.com/watch?v=Ff5IOSj1l7w

Some of the women here on DS have had some success controlling their endo symptoms with diet and supplements.

A holistic, integrative, or functional medicine doctor may be helpful. If you go to surgeons, they'll likely recommend surgery including hysterectomy.

Regardless, make 100% sure that you're comfortable with a decision to have organs removed since there's no going back.

Hope this helps!

Thanks for the advice! Not sure what I'm gonna do. The endo is horrible but I also have this vein issue. They would leave at least one ovary in if they did the hysterectomy but I will have to do some reading on what you sent me. Thank you! I can use allof the information I can get!

Fighting4change - it's nice that you've educated yourself abit on endo. But unfortunately a hysterectomy is one of the only options left. When you're in pain everyday it becomes something you seriously need to consider sometimes. While a hyst. is not a cure for endo, it does amazingly help some women, so far it's about 50/50 with the women I've met.

I know you're fighting for a change and I commend you for doing this for your cause, but when we reach hysterectomy stage we have done EVERYTHING, we don't make this decision lightly at all. And while its amazing what you're doing, sometimes this is what we need to do....our doctors do fight for our organs too. Its great your giving us info, but untill you've lived this life its hard to tell us we shouldn't do it...

I have decided to have a hysterectomy, because I have severe pain that requires pain meds everyday. I am not just dealing with endo, I have cysts, 5 uterine fibroids, and possibly scar tissue from previous surgery. I have already taken 2 6 months treatments of lupron and will not be doing it a 3rd time. At this point, I don't know what else I can do. I'm taking aygestin, but my pain is so severe that it may not work anyway. I can't continue on the pain meds every single day. I am hoping to keep at least one ovary.

I say go for it! It helped me!

Oh I definitely feel for all of you with endo. I can't imagine living with daily excruciating pain. I'm not trying to tell anyone not to have a hyst but just want to be sure they understand the trade-offs.

Ironically, I only had one day of unrelenting pain before my hyst (from an ovarian cyst) but now live with pain in my back and hips that I know will only get worse. And I now have the not-so-attractive figure (no waist and thick midsection). These consequences of hysterectomy are rarely acknowledged and/or understood. People think that the hormonal sequelae are the only issues.

When it comes to endo in young women, most doctors do try to preserve organs but in older women and women who're done having children, this doesn't seem to be the case.

Good luck with your decision!

kl31 - Do you have varicose veins in your pelvis (pelvic congestion syndrome)? I recall someone posting about this and that their surgeon did something to the veins to stop the pain.

Also, something I've always wondered about as far as endo and birth control - Does birth control that reduces the number of periods to 4 per year help endo symptoms?

Check out the Adhesion discussion here. The poster had a hyst for endo in April and debilitating pain returned well before one year post-op and she was back in the operating room last month..

I'm on the 4 month pill. They told me to stop taking any of the sugar pills now and have no period at all and see if that helps. I do believe I have varicose veins. I think they call it Pelvic Congestion Syndrome. I also have scar tissue. A huge problem with me is that when my endo flares up my gastritis will also. Then I feel horrible all around. Not sure what I'll be doing at this point but I'm not jumping into anything yet.