Hysterectomy Support Group

I had a total abdominal hysterectomy, ovary's removed to try to help with endo. I had endo inside my right ovary and that was found by biopsy otherwise they wouldn't have known so I'm glad they took them both. I am still in the same pain I was in before, just not the painful periods. I wake up in pain and go to bed the same way. It's still a living hell for me. I went to see an endo specialist today and they want me to try going through pain management first to try to determine the cause. If they cant I have to have another lap. My gyn that did my hysterectomy put me on estrogen and when I told him of my pain I am still having he just told me there was nothing he could do for me since I have no female organs left. That left me with trying to find an endo specialist to help me deal with the same pain. My sister in law had stage 4 endo and she under went a hysterectomy and to this day she has no problems and no pain. my gyn didn't know what he was looking for cause it wasn't till my biopsy after my hysterectomy I found out it was endo.
Good Luck and let me know how things go for you. I haven't found to many women who have went through this and the out comes they have.

I had a complete hysterectomy because of endo when I was 34-it did completely get rid of the endo for me-but I don't have my ovaries and I am not able to take hormone replacement therapy. Through my years of reading about endo while I was trying to get rid of it through treatments (Lupron, laparoscopies, etc.) my understanding is that if any endo was left behind (such as microscopic which they cannot see when doing the surgeries) that the hormones from your ovaries, or hormone replacement therapy can reactivate the endo and start growing again. There are many doctors who don't believe that, but my understanding is that it does happen. I would look into that if your hysterectomy did not get rid of your pain and symptoms. Also, were you saying that you also have pain in the rectal area? I did before surgery, and it was because there was endo in the cul-de-sac area near the rectum-they got rid of it while doing my hysterectomy and "presto" the pain there was gone too. I would do some research and really question the doctor about the pain and everything else-you shouldn't have to be in pain and I would want to know what is causing it. Even if the pain goes away-there can be endo present with no pain, and it can do some dangerous things to your organs-I'm really not trying to scare you, or make you think that you still have endo-I just wanted to share some of the info I've found, because, as I'm sure you probably already know, it's hard to find even two doctors that agree about endo, and if it's treatable, how to treat it, if it's curable and so on. I probably went to a good 30 gynecologists before I finally found one who knew what she was doing. Has anyone explored whether or not the tailbone pain is from something else? I hope you are pain-free soon, and hope I was able to help, Hugs, Sarasmile

Thanks for your reply Sarasmile. Right now I'm going thru various types of pain besides the one in my tailbone area. Been having "kidney-stone" like pain since I've experienced that before. And endo, as horrible as that is, is preferable to stones. I have my ovaries, so most likely the pain in my tailbone area is due to leftover endo. When I asked my OBG about any endo there in the bowel area when she did my hyterectomy, she said there was none. I had lots on the back-end of my uterus and a fibroid pressing against my rectum which she thinks was causing the severe back pain. Since I have heart problems and heart disease runs in my family, there's no way I'd have my ovaries removed. So I'm stuck with endo. I think the operation did help with the severity of my pelvic pain though, just not the daily lower-back cramping. This whole thing is pretty depressing I'll admit. I'm waiting on my pcp to refer me to a pain specialist. Thanks again.

I was 32 when I had my total hysterectomy. They took my ovaries, tubes, cervix. I was in so much pain before I had my surgry, but now I'm pain free. I encourage you to find a doctor who will listen to you and help you. I know the pain you are in, because I had endo. too.

I had complete abdo hyster apart from an 8th of my rt ovary, 4 yrs post op I had severe endo, so far very limited pain, I think sometimes its just adhesions , as its around my ovary, Im so glad i did this my quality of life changed, as my whole mood changed for the good, other people couldnt beleive how happy i look all the time, I can actullay go shopping and ENJOY it...Be patient you have just had major surgery and that will take a while to start to feel any different.
Cel :)