Endo - Should I consider Hysterectomy?

Hi All,

I am soon to be 35 in February. I had my first surgery when I was 18 years old to remove a cyst from my ovary that was the size of a softball. In total I have had 5 surgeries. I have endometriosis, cysts, horrible periods, sometimes painful sex. Last year my GYN tried the ablation and it was unsuccessful as she could not enter my uterus. I am currently on birth control and it helps control the bleeding and pain. She has suggested removing my uterus.

I am scared because I know that recovery could be long not to mention painful. I have two children, 3 years old and 18 months old. Both are adopted and my youngest has been home 4 months and we are finally at a point where attachment and adjustments all around are going good.

Should I stay on the pill since it seems to be helping even though I am close to 35 and am not using it to prevent pregnancy. I am not a smoker, nor overweight.

Thanks.

HI guatemam. Mind if I ask what you mean by the doctor could not enter your uterus? I had my ablation on 12/3 and my doctor said he could not distend my uterus and therefore the ablation was not successful.

I'm not 100% sure why. I know that my uterus is really flipped and I have the endo.

I had a tah/bso for endo. But, nothing I was using worked to control the pain or the bleeding it was my last resort.

Have you considered seeing a endo specialist or getting a second opinion?

My is that I would stay on what is working. It would be a different story if you were having alot of problems.

Another reason I'm saying that is just removing the uterus endo can return. Because your ovaries would produce the estrogen which could cause the endo to grow. But, removing your ovaries doesn't guarantee that your endo wouldn't come back then it also brings the issue of hrt.

Your kids are a little young for you to have your uterus out now. I just had mine taken out and so glad I did but my kids are 3 yrs and 5yrs. Both are adopted too and our older child is still in preschool due to a fixed hearing problem so I am temporarily homeschooling them while healing and I can't take them out in the car alone for six weeks because I can't lift over 10 pounds. I would get your uterus out to prevent cancer in it when you are in your 60's. I am 45 yrs old and wish I had my uterus out when I was in my late 30's or at age 40. It has given me so much more energy with it out. I would ask your doctor if delaying the surgery would be harmful to you and it if would be possible to have it when your kids are older.

Hi guatemam!

The decision to have a hysterectomy is a big one that should not be made lightly! It is a major, irreversible surgery that is not without risks. You are doing the right thing asking questions and looking for answers!

First, endometriosis is a complicated condition with no absolute treatment plan that will work for all of us. And there is no cure. Thus, even if you have a hysterectomy and/or oophorectomy you could still have issues with endometriosis down the road. Consequently a hysterectomy should be more of a last resort treatment plan for endometriosis, especially if the treatment plan you are using now is working.

I did use birth control for years to help with my cycles -- before I knew I had endometriosis. I had a hysterectomy when no other treatment options were helping with my specific issues. I was one who ended up with complications and a long recovery. It was difficult enough on my family with 3 and 5 year old boys. My MIL ended up having to care for me and the boys for weeks while DH worked as I could not care for myself or them. Though I was young when I had the hysterectomy, it wiped me out and I suffered numerous health issues for many years. And I have had surgery since my hysterectomy for more endometriosis and adhesions.

If you have not been able to do so you may want to consider consulting with an endometriosis specialist about what might be best for you.

I do want to say that I do not recommend having your uterus out to prevent cancer. Unless your medical team feels you are at risk for cancer, and then your medical team should include an oncologist and/or gynecoligical oncologist. Endometriosis itself is rarely ever a cancer issue and is not a life threatening condition.

I do wish you all the best for whatever you and your medical team decide is best for you. Seeking at least a second opinion and learning all you can about Endometriosis could help you with your decision! s