Does it have to mean a life of misery (long + kids mentioned)

I have a bit of a unique situation. Although it is not unheard of it is rare. I had a emergency c-section in 07 to deliver my very handsome baby boy. Endometrial implants were transferred to my abdominal wall. They grew causing a mass that caused extreme pain. Surgery was done 9 months after I had him to remove the implants (biopsy confirmed that was what it was). The pain did not stop. Surgery was done again when he was 18 months old b/c the pain was unbearable. They only removed scar tissue. Biopsy did not show endometrial tissue in the area removed. Continuous bcp makes the pain go away. However 6 to7 weeks after they put me on bcp I develop blood clots. 3 times this happened! Not in the deep veins but in the smaller ones closer to the surface in my legs. So those are a no go.

I got pregnant w/ my little girl who was delivered via section 8 weeks ago. Drs try again to remove anything in the area that was causing pain. Bad news was that there is a mass of it inside my muscle. Now, they say removing that much of my muscle is bad news. The option they are giving me is hysterectomy with removal of ovaries as well (can’t spell the oo word lol). I have had a 2nd opinion on this and get the same thing told to me. Problem is I’m not sure how bad the after effects of the hysterectomy are. I only see bad stores on the net which I do realize most folks who are not having problems are not spending there life talking about how good they feel b/c they are enjoying how good they feel.

I have severe pain for a total of 15-18 days a month. Eight of those 15-18 days I can barely move the muscle hurts so bad. I’m worried what if I can’t do hrt since I have problems with bcp. I don’t understand if these are different. I have Crohn’s disease and was diagnosed with osteoporosis at age 17. No, that’s not a typo age 17, due to high doses of pred for over a year. Now I have just in the last two years moved up to the osteopenia group (yay me!) but the dr says I will have to do hrt or I will be right back in the osteoporosis group in no time. (Oh I forgot to tell my age. I just turned 32 less than a week ago.) Then there is the increase of heart disease if I do take them. Which is a bad ordeal for me, seeing how I already know I will have to have an aortic valve replacement due to a congenital birth defect. The cardiologist is trying to wait for as long as possible b/c I’m not a candidate for a mechanical valve b/c I can’t do blood thinners b/c of the risk of bleeding out b/c of the Crohns. Also, some with endo say it don’t help the pain if you use hrt but I wonder if my case is a bit different since being on continuous bcp stop this pain. I do have endo else where (bowel area) but this pain is nothing compared to that implant sewed into my muscle. If I was only dealing with the endo inside the pelvic area I would not even be considering this b/c that pain is NO WHERE close to the pain of it trapped inside my muscle.

So in your experience or in the experience of someone you know directly (not just someone you have heard about) does having a hysterocomy have to mean a life of misery, depression, weight gain, headaches, etc. Should I be happy I have 12 days a month I can function reasonably well b/c if I don’t I will just end up with 30 days a month I can’t. I am missing everything. Playing with my little boy even holding my baby b/c those 8 days its so bad I can’t hold her b/c her little feet are right where it hurts.

I am so sorry that you are going through all that. You sound like you have had to be a strong person. I don't think that the surgery means you have to have a life of misery at all. I didn't gain any weight & now I am loosing some. I still have my ovaries but for some reason my headaches got better. I love not having that terrible pain each month. I can not tell you what is right for you but for me it has helped my problems. I had a textbook surgery & recovery. So it can all go just fine. & Now I can focus on the other things in life other than pain. I am glad you are getting all the information that you can to make a good decision for you.

Bad news travels fast, that coupled with the need to "vent" when you are feeling down and out, and you're frustrated with progress, or lack of it, you will find those stories much faster. I will tell you, I HAVE seen alot of stories of encouragement, and women who are happy with their decisions that they have made for a hysterectomy. I am now 4 wks 3 days post op,,and I already am happy that I made that decision. BUT, I was also at the point where I needed to take this next step. I agree that we need to do as much homework as possible when considering such life altering procedures and the impact it can and/or may have on our life, but you ultimately need to make sure that you have made the decision for yourself (so long as medically it is not urgent). Search hard for the negative, and search harder for the positive stories, they are out there....even here. I wish there was a "magic ball" that could predict what your life would be like but there isnt. We know when a decision is ok for us when we are willing to deal with what comes from it. PLEASE PLEASE PLEASE keep looking for the positive stories so you can see that like anything else,,,,GOOD can come out of it. (sometimes too much info is just as bad as too little)