LAVH stopped when found severe endometriosis

I went in today for a hysterectomy keeping my ovaries. But woke up in recovery to find they didn't do it because they found severe endometriosis. They were going to have to do abdominal hysterectomy and not sure if could keep my ovaries and they talked to my husband who said no we need to talk to her and let her deciede. I am very sad, frustrated and dont want to deal with anymore pain and bleeding but now I think they want to try and treat with Medication. I am feeling very disappointed in this I dont know how much more I can take. Anyone been though this? Any advice? Thanks for listening.

(((kimmy)))

I am so sorry you had this experience! My goes out to you today!

I do know what it is like to wake up and be told in recovery, "You have endometriosis!" I had never heard the word that moment, following a laparoscopy to figure out what in the world was going on with my body!

I am not sure how much you know about endometriosis, but unfortunately, a hysterectomy is not a cure for this condition. Any of it that is not removed during any surgery can continue to cause pain and issues. Thus, I am guessing your surgeon was afraid she would not be able to remove enough of the endometriosis to bring you the pain relief you were looking for since she was not prepared, besides the big decision regarding your ovaries.

We have several Endometriosis Resources you can read through to learn more about this condition. Additionally, we have an Endometriosis Support forum where you can post your specific endometriosis questions.

I did have my LAVH for the endometriosis. For one, we couldn't stop my bleeding with other options we had tried. Also, my uterus was covered in the stuff and the only way to remove that endo was to remove the uterus itself. However, my surgeon was not able to remove the endometriosis that was on my bowel walls. Hence, I continued to deal with endometriosis issues and increasing pain until I had surgery with an endometriosis specialist several years after my hysterectomy. Thankfully, I have done very well since then!

Based on my experience and knowledge of endometriosis, here is my best advice for you! Learn all you can about endometriosis and the treatment options available. If your doctor is wanting to treat the condition with medications, you might want to learn more about progesterone and progestin treatments including Depo Provera, GnRH agonists like Lupron, and possibly an aromatase inhibitor. To help with the bleeding for now, you doctor could also suggest a Mirena Coil or an ablation, depending on what is suggested for the endometriosis.

For your next surgery, you want the most skilled endometriosis surgeon you can find. You don't want a surgeon who is not going to be able to successfully remove all the endometriosis that can be found. If you can't find an endometriosis specialist, look for a knowledgeable reproductive endocrinologist, gynecological oncologist, or another gynecologist who is exceptionally skilled with surgery for complex issues such as endometriosis. Generally speaking, we are not talking about a general OB/GYN.

While you and your medical team are determining what your next step should be, ask about pain medications. If you can get your pain under some type of control, you could have a clearer head when making your decisions.

You also need to learn about hormones--how important they are important for our overall health and their impact on endometriosis. Whether or not you keep your ovaries with an endometriosis diagnosis is not a simple black and white decision and you will find some contradictory opinions!

Feel free to post any questions you have and we will do out best to help you! You are not alone and there are many of us who have had to deal with complex issues and pain who are willing to support you the best we can!

My doctor made me sign 3 forms for options so when he went in he could do what needed. It really was nice of him to give you the option. My doctor stopped to and didn't take an ovary. I had to go back & have that taken out. But at least you know he's thinking of you & not just doing a job.

Diane