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Endometrioma Help - Scared, cancelled surgery
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10-04-2009, 07:24 PM
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HysterSister
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Posts: 2
Hysterectomy: October 8th, 2009
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Endometrioma Help - Scared, cancelled surgery
long...sorry!
Hi All, Glad to have found this forum. I am scared and lost...and hoping that someone else has been in a similar situation.
By December 2006, I had 6 months of annoying right side, little pains, that would come and go, mild lower back pain every morning, and gastrointestinal stuff on/off. Then bam...one day of excruciating, appendix like pain, that took me to ER, along with massive migraine. Couldn't walk. They didn't even do a pelvic exam, or scan of any sort...sent me home w/pain killers..."probably a ruptured cyst or constipation"....pain resolved in two days. Then had swollen, hard belly. Went to Gyn for annual 2 weeks later....found complex adnexal mass 5cm, on right ovary, elevated CA-125....a Gyn/Onc did surgery a few days later...turned out to be an endometrioma that had infarcted, and ovary/tissue was necrosis. They cleaned up some endometriosis, did tubal-ligation of left ovary....and have been fine ever since.
Fast forward three years, to a month ago....lower pelvic pain around ovulation, was quite bad for 4 days. Period came at 19 days i/o the usual 28. Swollen belly was back, gastrointestinal stuff, and feeling full in pelvis. Off to Gyn, had exam...u/s...and now there's another complex, adnexal mass 4.4cm, on the remaining left ovary.
Dr. says four options: 1) Lupron to shrink it (but will not go away, and can re-grow...and I have read nightmare stories about Lupron). 2) Remove just endometrioma if possible, but likely it will regrow, and more surgery. 3) Do nothing and it will continue to grow. or 4) DaVinci radical hysterectomy (what he recommended, and wanted to do this week), and then hormone therapy, as I am 42yrs.
I have hypertension (take two medications - developed 8 months after 2nd pregnancy), had pre-eclampsia in 1st pregnancy....stroke scares me, the non HRT symptoms scare me, HRT?...don't know since I am endo? Lupron scares me, doing nothing leaves me with this bloated stomach that feels really full, and like I'm about to start my period all the time. Also wondering, if they are able to tell "for sure", that it is not cancer, just by looking at the u/s or an MRI?? Also, I've read here that there can still be problems w/endo after a hyst??? So confused!
I cancelled surgery for this week, as I feel I need to research my options, better....
Anyone experience something similar? Should I have surgery, no matter what?...just to make sure it is not ovca?
Thanks so much....Lisa.
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10-04-2009, 07:53 PM
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HysterSister
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Posts: 37
Hysterectomy: September 22nd, 2009
Surgery Type: SAH
Ovaries: Removed both
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Re: Endometrioma Help - Scared, cancelled surgery
Lisa, I had an endometrioma with a Ca125 of 435. Had a TAHBSO due to ovarian cysts and an endometrioma the size of a canteloupe. It ruptured when he took it out. Had my surgery about 2 weeks ago and am getting around pretty well. I have some hot flashes. They did a frozen section and found it was benign, no cancer. I feel sooooo much better, I have been having bleeding problems for years and pain for the past 6 months. I am not planning to go on hrt, but will see what happens. Don't be scared. I am so glad this thing didn't rupture, there was some torsion of the ovary going on.
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10-05-2009, 08:26 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: Endometrioma Help - Scared, cancelled surgery
((Lisa))
My story is different than yours but maybe I can help a bit! I had my hysterectomy for endometriosis several years ago. I have had two different complex adrenal masses, both found via CT scan--the first measured 5.8 x 5 x 5.4 cm and the second measured 4.5 x 4 cm. Both resolved on their own with no medical intervention.
I definitely believe taking more time to research and be sure before you have surgery is wise! Once you have a hysterectomy, there is no turning back so you want to be 100% sure your pros outweigh your cons before going forward! It is not a risk free surgery an there can be long term consequences.
Have you had a second opinion about what might be best for you? Having you considered consulting with a gynecological oncologist about your concerns? Would it be possible for you to consult with an endometriosis specialist?
It is true that endometriosis can persist following a hysterectomy. There is no cure for a hysterectomy, not a hysterectomy and not even an oophorectomy (removal of the ovaries). Thus, it is very important that if you choose surgery, you find the most endometriosis skilled surgeon you can find! The key for treating endometriosis is skillfully removing the actual endometriosis. If any of the endo is not removed, it has potential to grow and spread.
As far as your concerns regarding Lupron, some women have found it a blessing and some a curse. There is no way to know in advance how well it would work for you. You would have to do your research and weigh all of the pros and cons and cons for you. You could also ask if there are other alternatives for you besides Lupron--maybe Depo Provera, an aromatase inhibitor, progesterone, etc.
When it comes to hormones, those of us with endometriosis get thrown into a unique situation! The very estrogen that can be essential for our overall health can stimulate any endometriosis! Thus, we each have to individually weigh our pros and cons to determine if we will be better off with our own ovaries and hormones, no ovaries but HRT, or no ovaries and no HRT. We will not all make the same decision as we are all unique individuals with different circumstances and overall health situations. In my case, it was determined by both my GYN and later my endo specialist that keeping my ovaries and thus my own hormones was best for me, even though I have had the adrenal masses.
My best advice for you would be to continue your research, seek at least a second opinion before making your final decision, and keep asking questions. In your shoes, I would be asking specific questions about the skill of the surgeon to remove the endometrioma and any endometriosis found (my own GYN could not remove all of my endometriosis during my first lap and hysterectomy and thus I had to have additional surgery with a specialist several years later). I would also want to talk to someone who was very knowledgeable regarding hormones and ask about the pros and cons for you and your medical history.
My goes out to you as you work through this process! in there!
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10-05-2009, 09:06 PM
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HysterSister
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Posts: 2
Hysterectomy: October 8th, 2009
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Re: Endometrioma Help - Scared, cancelled surgery
Thank you, so much, both of you, for your replies. I am feeling more comfortable, that I didn't just jump in and agree to this week's surgery.
I was actually in the ER, last night. Had stomach pain going to bed (came in waves)...and woke up at 3am, with really bad abdominal cramping/gnawing around navel. Went in....it progressively got worse. They did a CT scan, blood work, and urine...all came back fine (just noting the "cystic lesion" on the CT scan...but everything else, organ-wise, was fine)....then had several bouts of diarrhea....and although stomach is still making crazy noises and just a little crampy....I feel better.
They said it was gastroenteritis.
It was a gyn/onc that I saw on Friday....he doesn't seem to think it's anything more than another endometrioma...that's why I'm inclined to get a second opinion, and try to not have surgery, if possible.
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