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endometriosis on organs scared
Hi. Had laproscopy..was told endometriosis spread too much to remove. Starting shot to try to control. I am mortified. Any success stories with this type? Is there any hope for a future for me or is this a death sentence? Not so worried about having kids as my life I'm really young and terrified
Thank you so much for replying. I just had surgery and had been trying to recover. It means a lot that you are such a passionate advocate..as well as you taking time to help. Let me do a little research on questions that you asked and I will get back to you today. Thank you
Welcome to the Endometriosis community. I can try to help and reassure you the best I can. I am not a doctor, I am a patient and advocate for this disease and have lived with it for 24 yrs.
1) Getting pregnant will not stop the Endo from growing, the only thing it may help with is stopping some of the symptoms as you don't have a period during that time for the most part.
2) The key to have symptoms and pain levels lowered is through excision (cut out) laparscopic surgery from an educated, skilled surgeon that specializes with Endometriosis. There are about 10 top surgeons world wide and many other surgeons that are getting up there with their skill and have made a good name for themselves. I can get you some names if you'd like so that in case you start to have problems again you can see someone else that you might get better care from. I am not saying change doctors at all just that I can give you some names if you need some. I just need the country and city that you live around so I can narrow it down.
3) Does Endometriois cause death? Not per say but there have been deaths associated with Endometriosis due to complications during surgery, suicide, organ failure for some but very rare. The problem for most (like myself) is that it took 14 yrs to diagnose so I have irreversible organ damage and its not fun. However that doesn't mean that its the same for you as everyone's journey's are different.
4) When you were told spread too much, what does that mean? Is it on your bowels? Bladder? etc.. This can be removed but only with a skilled surgeon. Most surgeons will make a comment like "This is the worst case of Endo I have ever seen" and that usually means they do not have the skill to properly remove the Endo which like I mentioned earlier is to cut out the disease through excision surgery so it takes the root out. If it is not removed it will just continue to grow and you will still be in pain not just from the surgeries but from scar tissue as well. Laser causes more scar tissue to form where as excision the scar tissue is a lot less.
5) How is your diet? What do you eat? where is most of your pain?
Let me know if you have any more questions or if you need me to clarify something.
:)
1) Getting pregnant will not stop the Endo from growing, the only thing it may help with is stopping some of the symptoms as you don't have a period during that time for the most part.
2) The key to have symptoms and pain levels lowered is through excision (cut out) laparscopic surgery from an educated, skilled surgeon that specializes with Endometriosis. There are about 10 top surgeons world wide and many other surgeons that are getting up there with their skill and have made a good name for themselves. I can get you some names if you'd like so that in case you start to have problems again you can see someone else that you might get better care from. I am not saying change doctors at all just that I can give you some names if you need some. I just need the country and city that you live around so I can narrow it down.
3) Does Endometriois cause death? Not per say but there have been deaths associated with Endometriosis due to complications during surgery, suicide, organ failure for some but very rare. The problem for most (like myself) is that it took 14 yrs to diagnose so I have irreversible organ damage and its not fun. However that doesn't mean that its the same for you as everyone's journey's are different.
4) When you were told spread too much, what does that mean? Is it on your bowels? Bladder? etc.. This can be removed but only with a skilled surgeon. Most surgeons will make a comment like "This is the worst case of Endo I have ever seen" and that usually means they do not have the skill to properly remove the Endo which like I mentioned earlier is to cut out the disease through excision surgery so it takes the root out. If it is not removed it will just continue to grow and you will still be in pain not just from the surgeries but from scar tissue as well. Laser causes more scar tissue to form where as excision the scar tissue is a lot less.
5) How is your diet? What do you eat? where is most of your pain?
Let me know if you have any more questions or if you need me to clarify something.
:)
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