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Endo/adeno - if so common why did we not know about it before?
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10-22-2008, 03:55 PM
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Guest
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Posts: 197
Hysterectomy: October 30th, 2008
Surgery Type: TVH
Ovaries: Kept 1 or both
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Endo/adeno - if so common why did we not know about it before?
Somewhat stupid question but it just hit me. If endometriosis, adenomysis, etc are seemingly so common why are we not given more information about it before it is to late?
I guess because I hear the same kind of stories as what I have dealt with most of my life. As young women getting our first period, having these horrible periods that as time goes on they continue to get worse. Why then are our Doctors not giving us information on all of these things at that time?
Or is it that endo, adeno, etc are rather new to the medical field. Did doctors recently figure out what the problem was and give it a name?
Sorry if it seems I am rambling,
Cristy
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10-22-2008, 05:40 PM
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HysterSister
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Posts: 15
Hysterectomy: November 20th, 2008
Ovaries: Undecided
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Endo/adeno - if so common why did we not know about it before?
No it's not a stupid question. I don't really have an answer tho...I know when I started having problems at 17 my dr at the time told me about endo, but then changed his mind, then told me it was all in my head, so fast forward thru a few more doctors and finally found one who believed it was endo and could prove it by the time I was 18. I was lucky it only took about a year.
It was first believed that endo could only affect older women (30 yrs +) who didn't have kids, and that belief, tho very false, is still held. There's also beliefs that endo is "just bad cramps, take some Motrin" or birth control pills will fix it, but as many of us know, that's not true. They're not even sure what causes it. There was a recent study about how some enzyme might be responsible for endo, but no one knows for sure. It could be autoimmune. There's really not many answers out there.
Endo and adeno are also very confusing since there is no cookie cutter list of symptoms. Some women have pain, some don't, some infertility, some never have a problem, some heavy bleeding, and it goes on and on, and the only way to prove that it is endo is having a lap done, and even then a lot of doctors don't have the knowledge and/or equipment to identify it (such as microscopic endo). Also, during a regular lap, endo is only lasered off, allowing it to grow back. Adeno is only proven after the uterus is removed and sent to pathology.
There are only a handful of endo specialists in the US (I have no idea about the rest of the world). These doctors are specifically trained to recognize all forms of endo and remove it via excision.
I guess to sum it up, endo/adeno are horrible and life altering and life interrupting for so many of us, and we just don't have many answers yet, just a lot of speculation. Frustrating is an understatement.
*steps off soapbox*
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10-22-2008, 05:44 PM
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Guest
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Posts: 197
Hysterectomy: October 30th, 2008
Surgery Type: TVH
Ovaries: Kept 1 or both
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Endo/adeno - if so common why did we not know about it before?
duckling that makes a lot of sense. I guess we need research for this and teaching for all the docs out there.
You're lucky it only took a year for you. I have had people telling me my period isn't that bad since I was 11. It wasn't until about a year ago I FINALLY had a doc listen. and I will be 34 in Jan!
Cristy
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10-22-2008, 06:58 PM
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HysterSister
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Posts: 845
Hysterectomy: January 14th, 2008
Surgery Type: TAH
Ovaries: Removed both
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Endo/adeno - if so common why did we not know about it before?
Hi Cristy! I'm like you but it took til I was 50-something to find that doctor that listened!! Thankfully, we DID find a doc that listened!!
I wish you the best! I look forward to seeing more of your postings!
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10-22-2008, 10:20 PM
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HysterSister
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Posts: 121
Hysterectomy: November 28th, 2007
Surgery Type: TAH/SAH
Ovaries: Kept 1 or both
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Endo/adeno - if so common why did we not know about it before?
I know what you mean. I remember at 12 going to the Dr complaining of severe cramps. The Dr (a male) told me and my mother it was all in my head. I remember missing 1 day a month my 7th grade year due to severe cramps. I could not get out of the bed. At 21, I was told that I had alot of fibroids. I had my daughter by C- section. I just knew my cramps would get better. It did not, every time I complained to a doctor( male) he would say just deal with it. Finally at 41 I went to a new internal medicine (female) complaining of cramps. She sat down and listened. I started having pelvic ultrasounds. She would prescribe pain pills. Last June, I went for the annual ultrsound when they talked me into doing a vaginal ultrasound. My new Dr called the minute she got the results and sent me see a GYN. Because the result of the ultrasound revealed mulitiple fibroids.We ruled out endometrial cancer. I was sent to see a radiologist. For a cat scan to see if I would be a good candidate for Uterine Fibroid Embolization. The results revealed that I only had I fibroid and adenomyosis. The little bit of research I found stated that it is a form of Edno except it is like small tears in the uterine lining. You can also possibly get from having had a C-section. However the only true diagnosis is to have the hyster. And get the results from the lab. I hope that there could be a better way to diagnosis adenomysis. I was 44 when I finally had a name for the years of pain that I had suffered. Now I am almost a year post op and feeling soooo much better.
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10-23-2008, 12:41 PM
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Guest
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Posts: 197
Hysterectomy: October 30th, 2008
Surgery Type: TVH
Ovaries: Kept 1 or both
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Endo/adeno - if so common why did we not know about it before?
I wonder if it might be a case of doctors not wanting to give a label to any woman who complains of cramping etc. I guess if they did we would have a much higher rate of hysterectomies under an incorrect diagnosis.
It would just be nice if all doctors would take the time to really listen and explain ALL possiblities for the problem instead of telling us its all in our head.
Thanks for all the input,
Cristy
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10-23-2008, 01:20 PM
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HysterSister
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Posts: 45
Hysterectomy: October 28th, 2008
Ovaries: Undecided
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Endo/adeno - if so common why did we not know about it before?
I'm not even sure most people in the medical profession know what adenomyosis even is. When I went for my preop visit this week, and the nurse practitioner asked me why I was having the hysterectomy, I told her fibroids and adenomyosis. She gave me a blank stare, asked me to repeat it, then couldn't spell it. I guess its just easier for them to think all the problems are caused by fibroids.
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10-23-2008, 03:10 PM
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HysterSister
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Posts: 480
Hysterectomy: October 27th, 2008
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Endo/adeno - if so common why did we not know about it before?
I've been a nurse for 15 years and never (that I can remember) heard of Adenomyosis before my diagnosis. And I would have noticed if something in school would have explained my pain. Mind you, I have worked Orthopedics and psychiatry, so my exposure to gyne stuff was mostly limited to my own experience.
As I was reading this, I was reminded of something my BF said. "If men had this much pain it would have been cured 100 years ago".
Go figure...
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