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!