Total hysterectomy & endometriosis is still here!

by Allison
(Monroe, LA)

First of all, I am so glad I found this site. Hearing other women's stories & their struggles let me know that I am not alone. I've dealt with endometriosis for 27 years. Because I've never had any children, having a hysterectomy was a very difficult decision to make.


I contemplated having a hysterectomy for years & after dealing with excessive bleeding & severe pelvic pain for so long, I finally decided to have the surgery. Over the years, I've had a D&C & 2 laparoscopies. I have also been on every birth control pill known to man with little relief.


Like many women, I was under the impression that a total hysterectomy would alleviate the bleeding and the pain. My doctor advised that I had a great deal of endometriosis present during the hysterectomy & that I would need to wait 6 weeks before beginning HRT. After 6 weeks, I began HRT, & it was like someone threw gasoline on an open flame.


At first, I thought I was just imagining it...having been dealing with the pain for so long. However, I quickly realized that I was not & that this pain was all too familiar. I went back to my doctor, & she told me to get back off the hormone for 8 weeks, which I did. The pain still remained.


I started back on the hormones a couple of weeks ago, & again it feels like someone threw gasoline on an open flame. My doctor kept telling me I "shouldn't" have any endometriosis left...that it "should" have gone away after not having any hormones for 8 weeks. She then told me that a hysterectomy is not a guarantee that the endometriosis won't come back.


I was so upset...just sat there & bawled. I told her that this pain is not something that I can just deal with for the rest of my life. She told me to start HRT again & follow up with her again in a month. A week or so later, I called her office because I was in so much pain. The nurse told me that my doctor was referring me to pain management. WTH?!


I felt like a red-headed stepchild being passed off. What is pain management going to do? Load me up on drugs??? Great solution! I am getting a 2nd opinion with another gynecolgist, but I am extremely frustrated. I should have done better research before going through with the hysterectomy, but I was so desperate for relief.


Also, my doctor should have discussed the possibility of the endometriosis coming back after surgery...or it never going away to begin with. She said that she did, but I know that she did not. It doesn't seem like there are any options left, & I'm feeling quite hopeless. Being in pain all the time takes its toll on a person...not only physically but mentally as well.