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Endometrosis... Endometrosis...

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Unread 09-19-2004, 04:35 PM

Hello Sisters, it has been a long while since I was on here. Been reading trying to get caught up some, there is so much valuable information on this site.

Has anyone heard of the endo coming back after a complete hysterectomy? I have heard several women tell me yes, but what I can't understand is how?

I appreciate any help on this that you can give me.

Thanks, Deb aka...kentucky woman

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Unread 09-19-2004, 06:13 PM

I still have one ovary and the endo keeps coming back. The Dr tells me even when I lose the ovary and take hormone replacement it will feed the endo. I guess we just can't win with this horrible disease. I have had it cut out more times than I can remember and it always comes back (or is in places the Drs can't see and it continues to grow) I think that is what happens to a lot of women. The Drs think they get it all, but there is still microscopic endo in there and the hormones feed it.

I hope that helps some. I am waiting for the "miracle" cure for endometriosis!

Unread 09-19-2004, 08:08 PM

Hey Becky, thanks so much, I guess I really hadn't thought of it like that, feeding off of the hormone replacement therapy. I just figured that as long as no more periods, no more endo....duh....Oh well, I guess we can't win for losing with this terrible disease.
Thanks again.

Take care and God bless, Deb

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Unread 09-19-2004, 09:32 PM

I had not even thought about my endo coming back after my hys. What are the symptoms? When I had my surgery there was a lot of endo outside my uterus. It had almost strangled one of my kidneys. Maybe I should look into this further. Thanks for the info.
Unread 09-19-2004, 09:42 PM

Hi ya .

Im making a laymans guess but if its possible there are residual hormones then yeah I guess the endo can come back .

I had my hysterectomy in jan and kept my ovaries whic were normal back then

Months passed and I kept puking .

I finally opted for a BSO to remove th eovaries and they were grossly enlarhed with chocolate cysts and endo I think . The pathology report isnt out yet
Likewise my gut adhesions needed work too and Im not able to eat again

I know it isnt the endof the road yet but IM happy that Im feeling abit better and able to eat

Unread 09-22-2004, 03:19 PM


Count me in as someone who has had Endo come back...and my Dr's think I'm still doing battle with this monster.

There are so very many 'theories' about Endo. I'll try to keep this brief but I want to share my experiences with you.

I had an LAVH/BSO in Nov/00. Approx 3 months after the surgery, I started having the same pain. All of my docs just shook their heads and (I'm sure) thought me to be a crazy woman. Believe you me, I really thought I was going to lose it at one point. I was sitting in my Rheumy's office (other health problems) and just started crying / shaking etc. I told her what was going on and how no one was doing anything about it. She then referred me to another Gyn. I had a lap done approx 8 months after the Hyst. and quite a bit of active Endo was found. She removed what she could, but had to leave quite a bit of it behind - due to its location, and her fear of hurting my bladder.

I still have Endo pain - just like I did before the hyst...except I no longer have those dreaded periods! I have been on and off of HRT (mainly off) and am planning on having another lap when my new Gyn comes back from maternity leave. They think that I may have an Ovarian Remnant, or that perhaps the Endo is back with a vengeance. No one will really know until they get in there. I have been hesitant on having another surgery due to pain from nerve damage, but I think it is time. I'm coming up to my 4 year hysterversary I do manage somewhat of an existence with pain management, with wonderful specialists that continue to run tests on me...

Sorry this is much longer than I had planned...But one theory is that any Endo left behind (even microscopic), can produce its own estrogen...So even if you don't have ovaries, are not taking any estrogen...those little monsters can hypothetically keep growing. But, again I want to stress that these are 'theories.' I don't think anyone really knows all of the answers when it comes to this horrible disease.

I want to wish you all of the best on this road...Sending you many S
Unread 09-23-2004, 06:53 PM

Hi! I have been reading this thread with dread! Nice rhyme... Anyway, I had a TAH/BSO Feb. 17, 2004. I have been doing really great. My abdominal scar has keloided but other than that have felt great Taking .05 Climara patch. Anyway, yesterday I started getting this pelvic pain. The first I have had since the Hyst. At first it was like twingy and then on and off sharp. Back again today but more intense than yesterday to the point of wincing and sucking breath at times.... The pain is in the exact same place as the pain I had before the Hyst. By the way, did I mention I am and Endo girl too! 3 laps before the hyst and 2 adopted kids later. - The Blankety blank disease has cost me so much and I have to say that right now... I am scared! If this pain I am feeling is endo I am going to bleeping scream!!!!!! I am 36 years old!

Here's the ironic thing. Had my 8 month post op check up last week. Doc said "any pain?" No, I said - I feel great!

I was hoping this might be a bladder infection but I don't having a burning feeling or urgency..... God help me if its back. Sorry to vent.
Unread 09-23-2004, 07:23 PM

Don't worry about venting. This is the place for it. I hope it is not your endo coming back.
Unread 09-23-2004, 08:01 PM

Just another story to add about endo. I had a hysterectomy in 1996. They found much endo and adenomyosis. I went on ERT (had to since the symptoms were intolerable). Five years later I had slight vaginal bleeding and some cramping. The endo had returned on the vaginal cuff. I have since had two surgeries to remove it. Yes, it is an awful disease.
Unread 09-24-2004, 05:19 AM


How did they diagnose it on the cuff? I am assuming it was on the outside (i.e. Gyn could not see it through tradition speculum exam) but you never know with endo. Did an ultrasound show it????

Just curious...

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