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Surprise...endometriosis! Surprise...endometriosis!

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Unread 05-04-2012, 01:24 PM

Hi, all -

I just had a TLH on Tuesday, due to cervical cancer and recurring ovarian cysts, along with VERY painful menstruation and a family history of uterine fibroids.

My surgeon got in and...surprise...endometriosis! My right ovary was just destroyed, no wonder it was giving me such a hard time!

Now, I feel like I'm doing things backward...I don't have the endo anymore, but I wanted to educate myself on it. It makes total sense! It's most likely the root cause of my painful menstruation, as well as some lower GI pain that nobody could figure out over the last few years!

I feel very fortunate that I had my TLH when I did! Has anyone else gotten the "surprise" endo diagnosis?

All the Best -
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Unread 05-04-2012, 02:47 PM
Re: Surprise...endometriosis!

I didn't have a surprise endometriosis diagnosis, I had my hysterectomy because of it, but I wanted to drop you a bit of information since you now have this diagnosis!

One, your TLH doesn't necessarily mean you "don't have the endo anymore." Sorry to be the bearer of bad news. So, it is actually good that you want to learn more about this condition. I don't suggest you plan on having future issues, but you do need to be aware that most doctors are not able to thoroughly recognize and remove all existing endometriosis. If you had surgery with a gynecological oncologist because of your cancer concerns, you may be in fairly good shape. If you had a general OB/GYN, there is more of a risk that some endometriosis was missed.

We have a lot of information stickied to the top of this forum you should find helpful. You might want to start with the articles. Try not to get overwhelmed! Endometriosis can be confusing and complex so take your time and don't expect to understand or remember everything right off.

Hopefully your recovery goes well and you have many happy, healthy and pain-free days ahead. But if endometriosis does rear its head again, we will be here!

Unread 05-06-2012, 10:10 PM
Re: Surprise...endometriosis!

Thank you for the info. Because my surgeon did not go in for the endo, and rather reacted to what he found...what should be my next step? I've read a lot about endo over the last week, and it seems to me that I may still have some endo in my body. Do I actively seek some way to make sure that it's all gone, or do I wait to see if I have any symptoms once I heal from my TLH? I'm just totally lost...the surgeon told my husband as if it was no big deal, and when I saw him the next day, he said he got it all. Now, I wonder if "got it all" means anything after reading all of these articles!

Thanks for any advice you have. I just need someplace to start, if I need to take action.
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Unread 05-07-2012, 07:17 AM
Re: Surprise...endometriosis!

I'm in the same position as you - we suspected it may have been there, but we didn't expect my uterus, right ovary, and bladder to be stuck together! I'm nervous about whether or not it has all been removed! I guess time will tell.
Unread 05-08-2012, 06:27 AM
Re: Surprise...endometriosis!

I had surgery on 4/30/12 to remove a ruptured ovarian cyst and to everyone's surprise extensive endometriosis. An even bigger surprise because I had already had my uterus and cervix removed due to fibroids three years ago today. My OB suspects that my borth control was masking the endometriosis and once the other surgery was done it took over. Amazingly I really wasn't in a lot of pain "proir to the rupture" then YIKES.
Unread 05-08-2012, 06:38 AM
Re: Surprise...endometriosis!

I had that "surprise" as well after my hyst. in January 2010. When I looked back on it, though, it should not have been a surprise at all--I had most of the symptoms.

I have recently read "Endometriosis for Dummies" and if you can get past the title, it's a very good resource without a lot of complicated jargon.

At the time of my hysterectomy I did not know that endometriosis can come back. In my case, it did--that's the reason for my recent surgery. This time, the surgeon did warn me that even without ovaries, endo can make its own supply of estrogen to feed itself and grow. I had all kinds of scarring--both ovaries were attached by scar tissue to the top of the vaginal cuff; my appendix was covered in it, and there was a section in my lower left abdomen that would basically "dam up" the fluid that is supposed to float freely in the abdomen. It would look like a cyst on ultrasound, but was actually just a fluid collection.

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