Stage Four endo...

I was recently diagnosed with stage four endometriosis after a lap surgery. After receiving a second opinion, I am headed in the direction of having a hysterectomy in a few months after receiving Lupron injections. I am only in my twenties, so I am struggling with the thought of losing both ovaries at such a young age. I have several endo lesions on my colon and I may have to have part of it removed, as well. Has anyone else had to have such drastic measures taken at such a young age?

(((GreenB)))

Welcome to our site! I am glad you have found us, but sorry you need us!

I had my hysterectomy for stage IV endometriosis when I was 25 years old. Had I not been married with two children, I would have tried to postpone the surgery. A hysterectomy is not a cure for endometriosis and should be a last resort option. Additionally, it very much can depend on the skill of your surgeon as to what your outcome will be.

In my case, my uterus was covered with endometriosis so at some point it was going to have to be removed. Since I was also dealing with continuous bleeding, my DH and I decided we would be okay with two children--later we did deal with heartache as our family wasn't as complete as we thought--and decided when weighing the pros and cons that the hysterectomy was the right choice for us.

Due to our circumstances, I also chose to have surgery with my local OB/GYN. I made that decision knowing it meant he was going to be leaving the endometriosis on my bowel walls and he was not able to use an excision method to remove the other existing endometriosis. But at the time, seeing an endometriosis specialist seemed out of reach for us. Had we not children, we would have made different choices.

Years after my hysterectomy, I did make my way to an endometriosis specialist for excision surgery since I had continued endometriosis from the remaining endometriosis. He was able to skillfully excise the endometriosis from my bowel without having to do a resection. He was also able to clean up all of the other endometriosis implants and adhesions. Since then, I have been endometriosis pain and symptom free even with both ovaries.

My best advice for you is to see an endometriosis specialist if at all possible. Most general OB/GYN's simply do not have the skills to allow them to locate, recognize, and excise all endometriosis. Many of them also assume that removing the ovaries is the right choice for any woman with an endometriosis diagnosis since estrogen is the fuel for endometriosis. However, even after a hysterectomy with an oophorectomy (removal of the ovaries) endometriosis problems can persist. For one, endometriosis can create its own supply of estrogen, something not all physicians realize.

A specialist may be able to clean up the existing endometriosis and preserve your ovaries which provide critical hormones for your overall health. Additionally, a surgeon with exceptional skills may be able to remove the endometriosis from your colon without having to do a resection.

I wish I could tell you that Lupron and/or a hysterectomy were a cure, but I can't because they are not. In fact, some surgeons feel that prior to surgery using Lupron or any medication that may cause endometriosis to go into a remission type state is not wise as then some implants may be missed.

I know this can all seem overwhelming, but there is hope and there are options. If you can't see an endometriosis specialist, consider a gynecological oncologist or reproductive endocrinologist with experiences treating endometriosis. There are some stickies at the top of this forum with some helpful information about finding a doctor. You won't regret finding the most skilled surgeon you can find and it may allow you to make different choices. There is no going back once your uterus and ovaries have been removed, so learn what you can now to make sure removing them is the right choice for you!

Feel free to check out our articles and information about endometriosis and do post any questions you may have. We will all do our best to answer based on our experiences and we will support you along this journey!