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Endometriomas
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05-26-2010, 01:59 PM
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HysterSister
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Posts: 7
Hysterectomy: November 29th, 2010
Surgery Type: TAH/SAH
Ovaries: Removed both
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Endometriomas
Hi! I am new to this website. I am 43 years old and for some time now my periods have been awful. I have alot of bleeding with huge clots and terrible pain. In the last 6 weeks or so, I have been having tailbone pain. I contacted my ob/gyn for an appointment. To make a long story short, he did several tests one of which was the CA-125 which was 159, vaginal ultrasound, hysterposcopy, and a CT. I have a mass on my right ovary the size of an egg and an even bigger one on my left ovary. They have moved my uterus 4 inches and it is laying on my tailbone, which is causing the pain. He says they are Endometriomas and he is recommending a complete hysterectomy. I do not want to do that at all so he says to wait 3 months and then we will do another ultrasound to see if they have changed any at all. He says that if I can endure the pain, then we can wait. But they will have to come out eventually. My question is this; can they not just remove the endometriomas? ? without a complete hysterctomy?? at least save one ovary. Is there any danger of them bursting? Also, from the research I have found on the internet, there is no definitive way to know for sure if it is cancer or not without a biopsy. Should I trust what he says and wait or should I get a second opinion? Does anyone have a similar situation?
Thanks so much
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05-26-2010, 02:11 PM
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HysterSister
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Posts: 155
Hysterectomy: April 13th, 2010
Surgery Type: DvH
Ovaries: Removed both
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Re: Endometriomas
Hello, I have a history of endometriomas. They removed them the first time from my ovaries via laprascope. Unfortunately they grew back right away. My ovaries were functioning minimally. There is a risk of rupture and if it happens you don't want to be out in public. It can be extremely painful. I finally opted for hyst in april because the docs wanted me in for surgery every year to get rid of the endometriomas on my ovaries. I have a life to life and was tired of dealing with surgery. They will not go away on their own and will continue to grow with each period. SO yes they can be removed safely from your ovaries but most likely will return, from my experience. You could always have them removed and see if they do return.
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05-26-2010, 02:22 PM
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HysterSister
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Posts: 7
Hysterectomy: November 29th, 2010
Surgery Type: TAH/SAH
Ovaries: Removed both
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Re: Endometriomas
Thank you for the info niece! Do you feel better now after your hysterectomy?
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05-26-2010, 02:31 PM
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HysterSister
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Posts: 155
Hysterectomy: April 13th, 2010
Surgery Type: DvH
Ovaries: Removed both
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Re: Endometriomas
yes, I feel soooo much better! The endometriomas were pressing on my intestines, uterus and bladder. One was so big they mistook it for my uterus on ultrasound! It's sooo nice being able to sit down like a normal person. I used to have to sit on my hip because sitting on my rear made my cervix press into my uterus and the endometriomas. SO, it was well worth it. I am 28 w.o children but sooo glad for freedom from pain. ;-)
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05-26-2010, 02:37 PM
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HysterSister
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Posts: 7
Hysterectomy: November 29th, 2010
Surgery Type: TAH/SAH
Ovaries: Removed both
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Re: Endometriomas
Bless your heart! I am so glad they took care of it. I know what you mean about sitting down.....very painful. I have to sit on my hip as well because it hurts so much. I am glad you responded, it is nice to get positive feedback. Do you have any negative feedback about the hysterectomy?
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05-27-2010, 12:56 PM
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Posts: 36,890
Hysterectomy: November 14th, 2000
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: Endometriomas
Depending on your specific circumstances, sometimes endometriomas can be removed while leaving the ovary intact. In my opinion,you should get a second opinion before consenting to a hysterectomy and oophorectomy for endometriomas.
Also, consider that if you have endometriomas, you could have endometriosis in other areas and it would need to be carefully and skillfully removed as well. Not all GYN's have the ability to recognize and remove all endometriosis. Any of it that is missed can continue to cause issues down the road. Neither a hysterectomy or oophorectomy are cures for endometriosis.
I would suggest consulting with an endometriosis specialist and go from there. The CA-125 can be elevated for those with active endometriosis and the specialist may have a pretty good idea of whether or not the issue is endometriosis and endometriomas or if a gynecological oncologist should be consulted. Remember, the CA-125 can be unreliable for pre-menopausal women.
As far as negative feedback from a hysterectomy, I could write more than you would want to read! I did have my hysterectomy for endometriosis and we all expected I would sail through surgery with flying colors! And I did! But the day I was to be released from the hospital, internal bleeding was found and my health went downhill from there! It was a very long, complicated recovery with so many doctors and tests it was unbelievable! If I had not had a supportive DH and MIL, I don't know what I would have done! Additionally, I required future surgery with an endometriosis specialist because my GYN had not been able to remove all of my endometriosis and it had continued to cause pain and symptoms following my hysterectomy.
Do your research, get at least a second opinion--preferably from a specialist, weigh your pros and cons, and then do what is best for you, hoping for the best but aware of the risks!
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05-27-2010, 01:58 PM
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HysterSister
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Posts: 7
Hysterectomy: November 29th, 2010
Surgery Type: TAH/SAH
Ovaries: Removed both
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Re: Endometriomas
Thank you so much for the great information Weiser....sounds like you have had a really tough time. I hope everything is better now.
Sending Love and prayers
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06-09-2010, 09:23 PM
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HysterSister
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Posts: 502
Hysterectomy: March 30th, 2010
Surgery Type: DvH
Ovaries: Removed both
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Re: Endometriomas
my endometrioma grew in my fallopian tube and pushed it out of place and adhered itself to my intestines... i was able to have a laproscopic surgery to just have the endometrioma removed... unfortunately my pain came back 2 weeks later and i chose to have a hyst 7 weeks after my lap...
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06-10-2010, 07:20 AM
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HysterSister
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Posts: 7
Hysterectomy: November 29th, 2010
Surgery Type: TAH/SAH
Ovaries: Removed both
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Re: Endometriomas
I am so sorry to hear that....do you feel better now?
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06-10-2010, 12:37 PM
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HysterSister
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Posts: 1
Hysterectomy: December 16th, 2008
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Re: Endometriomas
I have also had my uterus removed last year 2008 and was wondering if its normal that sometime in a month at least 2 times to 3 I feel a heavy feeling just on the upper left side of my uterus. This happens when I think I am so stressed out. My friend thinks this could be due to the over-stressed thing. Was it really?
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