Newly Diagnosed with Endo - Need advice for my next steps & options.

Hello,

I was just diagnosed with Stage 4 Endo on Monday 10/9 from a lap.

The endo covered my whole pelvis, ovaries, bladder and behind my bladder. She also said it's been there so long it's turned into scarring which meant she was not able to get all of it out. She said I still have a lot of endo in me. She also performed a D&C & hyster which showed MORE polyps (had polyps removed from uterus in July of 2016) and my uterus was covered in "fluffy" tissue. She removed the polyps and flushed my uterus out 3 times to remove all the fluffy tissue. She also removed several cysts from both ovaries.

I guess I went into surgery with the mind set that this is normal and nothing is wrong. I was actually telling my family that I'll be in surgery for 30 minutes and it should be a breeze. 3 hours later.... I was diagnosed.

I've been researching all my options. I'm 28 - have a genetic disorder which my doctor recommends NOT having kids with this disorder. So kids are not in the books for me.

I am just scared. My doctor wants to completely shut off my ovaries and stop my periods.

Is this something that you ladies would recommend?
Is the shot better? I have been on the pill and Nuva ring both did not help.
Can you be on hormone therapy forever and never have to get another surgery?

I have been dealing with this pain since I was 11. My doctor said she thinks I "downplayed" the amount of pain I was when I expressed my concerns to her. She stated I have a very severe case of Endo. I think like many women on this page we just think this pain is normal and to just deal with it. I am happy to finally have an answer to all this random bits of pain I'm in that I can't explain. In the past I have changed my lifestyle so much to work around this pain (diet, exercise, work ect...) because I've never had an answer. Now that I do I want to be proactive and get as much advice from my fellow sisters on what the best option is for someone my age.

Going into menopause so early scares me and it's very frustrating to have to make this decision at this age. I am just so very thankful I found this website.

Any advice is appreciated!
Thank you!

Nicole

I am sorry to hear you have been diagnosed with endometriosis but I hope we can offer you some helpful information and support.

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Originally Posted by faymaster My doctor wants to completely shut off my ovaries and stop my periods. Is this something that you ladies would recommend?

No, especially not at your age.

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Is the shot better?

What shot and what would be the purpose of it?

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Can you be on hormone therapy forever and never have to get another surgery?

What do you mean by hormone therapy and what types of surgery are you asking about? No hormone therapy cures endometriosis if that is what you are asking -- none, not Lupron, not aromatase inhibitors, not progestin (Depo Provera), etc. and many of those come with significant side effects.

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Now that I do I want to be proactive and get as much advice from my fellow sisters on what the best option is for someone my age.

The best advice we can give you is to find an endometriosis specialist before making any decisions. Based on your questions, it seems you are not seeing one.

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Going into menopause so early scares me and it's very frustrating to have to make this decision at this age.

Menopause at your age is scary and comes with some long term, even permanent, health risks.

I was diagnosed with stage IV endo at the age of 25. Because my uterus was covered with it and I had some bleeding issues we couldn't resolve, I did have a hysterectomy. However, I did not have my ovaries removed. My local OB/GYN knew that hormones were important for my overall health, in spite of my endometriosis. As he was not an endo specialist, he was not able to remove all of my endo -- specifically, he had to leave some on my bowel walls. He was an excellent surgeon, but he didn't use an excision method.

Some years later, I traveled to a nationally recognized endometriosis specialist for surgery. He used an excision method to clean up all the existing endo -- both the old and the new as well as what was on my bowel walls. Again, my ovaries were not removed as hormones are so critical to overall health. That surgery was in 2008 and today I am still endo pain and symptom free with two functioning ovaries.

The key to treating endometriosis is having the endo itself skillfully removed. Unfortunately, most doctors simply can't do that and too many assume no hormones means no endo. But it doesn't. For one, endo can create its own estrogen and survive just find in women who have no ovaries and who use no hormone therapy.

I would suggest you take some time to learn more about endometriosis and do your best to consult with an endometriosis specialist. There aren't many, which is one reason why many of them do phone consultations so that women can "meet" them before choosing to travel for treatment. My own specialist will even do video conferencing so you can have a "face to face" meeting long distance.

To get you started, we have several Endometriosis Articles you can read through with a lot of information you could find helpful as you move forward. It's not simple -- endometriosis is a complicated condition with many misconceptions about it that many can't treat as well as we need them to. But taking some time now to learn all you can will help you make better decisions for yourself for now and the long haul.

Thank you so much for your quick reply!

I am going to do my research and speak with my doctor. I have an appt on the 23rd and I am going to mention some of the things you say above.

I do see an Endo specialist so I am thankful that she did mention I am able to have another surgery, but it won't be her doing it. Her partner would perform it to get the rest of the endo off which makes sense to me now after reading your story.

The only question I have for you is ...

I know all your endo was removed in 2008 and you still have your ovaries, but how are you preventing it from coming back? Just like you said it can create it's own estrogren so if I do get all of the endo removed is there still a chance for it coming back? Is that why doctors recommend a hormone or pill to prevent it from coming back?

All I can say is ... WOMEN ARE STRONG! hehe

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Originally Posted by faymaster Thank you so much for your quick reply!

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I know all your endo was removed in 2008 and you still have your ovaries, but how are you preventing it from coming back?

I don't do anything. I don't need to. My surgeon was a nationally recognized endometriosis specialist who was able to locate and excise all of my implants so my endo is gone. Period.

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... so if I do get all of the endo removed is there still a chance for it coming back?

Absolutely, especially since most surgeons are not able to locate and remove all endo. Many unintentionally leave some behind and it then becomes a problem. Often there's a 50/50 chance of recurrence of endo, but many true endometriosis specialist have recurrence rates of less than 10%.

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Is that why doctors recommend a hormone or pill to prevent it from coming back?

Non-endometriosis specialist often do for that reason, yes.

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All I can say is ... WOMEN ARE STRONG! hehe

I would agree, but I also know men can be strong as well. I have watched my DH go through some significant health issues -- including cancer -- and handle it better than I!