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Yes that would be me... endo for about 8 yrs that I knew of before actually having hysterectomy, bowel resection, scraped ureters, etc etc..... just getting that and... MCTD started 11 mths later... how happy am I ????:(
 

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Discussion Starter · #7 ·
Scary! Makes you wonder about the connection..considering they are now saying that endo is also an auto immune disease! So many of my endo "symptoms" i've had forever mimic lupus..........
 

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me too..
severe endo diagnosed at 22 (after years of painful periods) every kind of hormone drug treatment going multiple surgeries for it & then finally diagnosed with lupus & raynauds last year at 34,funny enough though since Ive been on the plaquenil the endo has calmed down somewhat,my periods are still painful - though this is to be expected Im told because all of the internal scarring from the endo adhesions & all the surgeries but other than that it has settled quite a bit,Im convinced the two are linked I think more research needs to bo done concerning the two conditions as it seems too much of a coincidence that so many of us have it
 

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tbirdpie;556194 said:
Scary! Makes you wonder about the connection..considering they are now saying that endo is also an auto immune disease! So many of my endo "symptoms" i've had forever mimic lupus..........
Really????? I did not know that Endometriosis is a Auto Immune disease. I learned something new today.........Wow, I started with my problems at the age of 9 years old.:mad::mad::mad:
 

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My sister has severe endo too, in fact before I knew I had it.. I have had the most invasive surgery for it but then she hasn't had children so?? Anyway she told me it is considered auto immune but I couldn't find any info on that.. still it does seem strange that so many have both.... or one then the other doesn't it? :(
 

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Hi all, Endo is a horrible disease. I have a good friend with it and have watched her suffer.

I wonder how many of you had hormone treatment during the course of your endo? Just thinking out loud that there might be more of a connection there to developing Lupus later on. So many people have Endo and yet they don't get Lupus.

So maybe in some individuals it's more the hormonal treatment uproar that kick starts something like Lupus...........bearing in mind it wouldn't be the cause, just another strike against someone who had the potential to develop Lupus anyway :(

love and hugs,
Lily
 

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Lily what your saying actually makes sense and really puts another spin on things, at least food for thought anyway.

I had more then my share of very strong hormonal type treatments to try and keep my endo at bay and yet nothing really worked, thus a total hysterectomy at the young age of 36 and a surgically induced menopause that almost killed me!!!:lol::lol::lol:

Interesting thought, thanks Lily.:wink2:
 

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Hiya..I had no treatment for it apart from surgery and NSAIDS...over the counter.. there were times when it felt like somebody was sticking a knife in my side/back etc and I was in extreme agony, but I refused to go on hormonal preps.. oestrogen can make the endo worse. The rest of the treatment looked pretty severe too!! It is alot better in that dept since such major surgery two years ago, thank goodness:)
Claire X
 

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oestrogen can make endo worse
Very true Claire. I was thinking more along the lines of Lupron and similar drugs- not a hormone treatment per se but something that zaps your hormones quite viciously in an effort to calm the endo down. Hormonal shifts seem to have a role in stirring Lupus up, as does stress on the body. I reckon that Lupron and Synarel (sp) and the likes are a pretty nasty trip! Sorry didn't phrase it that well......... ;)

love
Lily
 

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The worst part of Lupron for me was being so young and having to inject needles into myself while my friends were outside being kids.:mad::mad::mad:
And of course the lack of estrogen and the effects that follow that as well. Thank god that is all behind me now.;););)
 

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I had endo first then Lupron injections... then lupus. At least that was the order of diagnosis and if I had lupus before the endo then it didn't affect me very much or very often (some pleurisy, some slight joint pain).

Lupron is associated with a lupus-like illness, and my rheumatologist (2nd one) initially questioned me to see if that might have been a contributing factor. But a few years has passed since my last Lupron injection, and while I then went onto Depo-Provera injections to hopefully control the endo apparently that is not a concern (& over a year had passed since my last depo-provera shot too when I was diagnosed with lupus).

I was doing some reading the other day and a study said that multiple surgeries has been found to be a risk factor for lupus. I had 5 by the time I was dx-d with lupus (tonsillectomy at 17, two elbow surgeries for cubital tunnel syndrome, and 2 endo related surgeries). No way to know if a predisposition for lupus causes a person to need surgeries... or if surgeries causes lupus. But I found that interesting - so some of it could be that so many people with endo require multiple surgeries too... in addition to hormone therapy being so recommended.
 

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Discussion Starter · #18 ·
Welll..this is all very interesting! So much of this I have wondered about for YEARS........ for the record, I, too was on Lupron - for about a year. Didn't do anything so we stopped it.
I believe more research should be done for the link between the two -FOR SURE!! Endo, in itself is a horribly misdiagnosed disease...and also so many doctors treat it differently- and wrong! Very scary..............
 

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My Endo started very young as did menstruation too. I had 2 older sisters and mine monthly came first.:eek::eek::eek: Oh my poor mom!:lol:

Anyway, I find what Maia said more then interesting. For me it was also Endo, then Lupron then total hysterectomy and then Lupus. I had 17 surgeries for the Endometriosis alone and they were all done laproscopically through the belly button. Only 1 of my Endo surgeries was done by way of major surgery, a Laparotomy where they cut all the way across the lower stomach.

Also 3 sinus surgeries, one knee, one carpal tunnel in the hand, one breast, one lower back lypoma, appendectomy, hysterectomy, gastric bypass and then total gastrectomy. My God when you write it all down and take a step back it is reliving a past you would just love to forget.:eek::eek::eek:

Anyway, I also wonder now if maybe there is not a correlation between the two?????:rolleyes::rolleyes::rolleyes:
 
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