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Could it be just endometriosis? Could it be just endometriosis?

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Unread 01-04-2006, 06:10 PM
Could it be just endometriosis?

I was originally pre diagnosed with "classic" endometriosis but an u/s showed bilateral ovarian cysts filled with debris that would not go away. The left ovary even had a solid area with papillary projections that sent me to a gyn/onc. I had my preop u/s today and found that both cysts have ruptured recently and the fluid is left in my pelvis collecting in the cul de sac. I am scheduled for hysterectomy but since this has occurred I am not sure what they will do next. If my issue was ovarian cysts only then my pain should be ogne but it is not. Could anyone share an ex[erience they have had?
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Unread 01-04-2006, 07:22 PM
Could it be just endometriosis?

xrayu, I am so sorry and you will be in my prayers.......I don't have any advice, but I will be thinking of you and hope it all works out for you!!!!!
Unread 01-04-2006, 07:34 PM
Could it be just endometriosis?

You can't see endometriosis on ultrasound! Sometimes there are large "endometriomas" that are like cysts but form from endometriosis, but endo is usually something very small (sometimes even microscopic), and an ultrasound OR cat scan OR mri usually won't pick it up. Surgery (either exploratory or when having the hysterectomy) is the only way to diagnose it for sure. It's possible you have both, or it could be just the cyst. Talk to your doctor about it and see what he/she suggests. FYI I have had ovarian cysts that would repeatly grow and then rupture, but it was ultimately the pain from my endometriosis (diagnosed one year prior in an exploratory laproscopy) that made me finally get a hysterectomy.
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Unread 01-04-2006, 10:59 PM
Could it be just endometriosis?


Yeah, it might be.

I had big old cysts on my ovaries for quite a while that caused abnormal bleeding between periods. My gyn guessed they were probably endometriosis and we just ultrasounded them every three months for a while. One actually shrank, then got bigger again.

Then I changed boyfriends and needed birth control pills. After the first three months on oral contraceptives didn't shrink the cysts, my gyn got all freaked out and started saying "cancer, cancer, cancer." Which annoyed me, because if I'd really had ovarian cancer for over a year, I should have been a good deal sicker, I thought! But then I got all freaked out, too.

I transferred to MCV where they gave me a Doppler ultrasound, which isn't 100%, but showed low potential for malignancy. Then they operated and found a NASTY case of endometriosis that took them 4 hours to put right!

So, yeah, these things can be endo, but if there are solid areas in them, especially if they think they're leaking, probably best to make sure! The Doppler ultrasound was helpful in my case, but there is still no 100% foolproof way to know what you've got without them taking a look, either by opening you up or by laparoscopy.
Unread 01-05-2006, 01:14 AM
Could it be just endometriosis?

You could still be having pain from the irritation caused by the debris from chocolate cysts. There's inflammation when you absorb a hematoma in that area, and endometriomas typically have old blood, etc. in them.

I would still think that your surgery would go forward. If there is any concern about cancer, exploratory and possibly clean-up surgery, including a LOT of irrigation to clean out all the debris from the cysts, seems even more important now! You need to know what has been going on.

My original surgeon told me that he couldn't remove the endometriomas without them rupturing. The GYN-oncologist was able to remove it without that happening, and told me that it could have "seeded" endometriosis, just like cancer (if it was malignant), had it ruptured.

I see your surgery is very soon, and if I recall correctly it is being done by a GYN-oncologist, right? That's truly your best bet even if it is endometriosis.

BTW, although endometriosis is not a technical malignancy, it shares many characteristics with malignancy, such as abnormal blood vessel growth, the ability to migrate and implant at will (I have a spot in my lung ), and no real cure. I have witnessed some discussions in the GYN community about the term "benign" to define endometriosis. It, too, can have some far-reaching, systemic consequences -- and the only available, not always satisfactory treatment, is to cut it all out.

I do hope that you're right, though, and that endo is responsible for your cysts. And a number of women with endo have found relief for their pelvic pain with the hyst, using various HRT strategies. You and your doctor will know what to do when the time comes, once you have a firm diagnosis. I've had mostly good results with my surgery, for what looked like ovarian CA (complete w/elevated CA-125) but turned out to be stage IV endo. I knew I had it bad when I asked the chief resident, a guy with eight years of post-doctoral GYN training under his belt, how things looked, and he says, "you had the worst case I've ever seen." It wasn't so much what he said, but the sad look he got in his eyes that got to me .

I'll be thinking of you! BTW, noticing your username -- I'm a sonographer (cardiac, though, not GYN) ...

Big s

Unread 01-05-2006, 05:00 AM
Could it be just endometriosis?

my dearest friend complained of pain and heavy bleeding for a year, When she finally got her ultrasound they found grapefruit size tumors/cysts on her ovaries. They were solid, and growing. When she had her surgery they took one ovary and cleaned up the other, they were very concerned with cancer, but she was fortunate. The tumors were filled with bone, teeth, hair, and tissue. The doctor said if they had ruptured it could have turned to cancer in a few months. I did some research for her and found a lot of articles supporting this.
Her body was reacting as if she was pregnant, she was starting to lactate, had severe migrains, and pregnancy abcesses on her teeth. All of the symptoms went away after surgery, she did not realize how much strain her body had been under until it was over.
From what I have read, the foreign matter from the cysts can cause pain until it is absorbed into the body.
Please push your doctor for answers. Sometimes they overlook things if you don't continually persue it.
Let us know what happens.
Unread 01-05-2006, 11:06 AM
Could it be just endometriosis?

The tumors were filled with bone, teeth, hair, and tissue.
Those are called "dermoid" cysts and are not malignant, thank goodness! They sure are ugly though...


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