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TwinDani
We are complete <3
Member since 3/11 1750 total posts
Name:
Danielle
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Endometriosis - PLEASE DONT MOVE
Does anyone have experience with endometriosis? I am looking for a specialist.
My gynecologist without doing any tests told me she thinks I have it and gave me birth control pills and said it can take 3-6 months to work. If it does not work she will do more testing. I am reading that is not a good course of action and to see someone who will be more proactive. This weekend I was in such pain I could barely move for 2 1/2 days. This has been happening for 6 months and after going to a gastro and ruling out stomach issues this is the solution my gyn. provided.
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Posted 2/20/18 8:53 AM  |
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Long Island Weddings
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amac27
LIF Toddler
Member since 8/09 471 total posts
Name:
A
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Re: Endometriosis - PLEASE DONT MOVE
It is not enough for a doctor to say that they think you have it. The only way to accurately diagnose endometriosis is through laparoscopy. I had laparoscopy in 2012 and had my left Fallopian tube removed and had endometriosis tissue removed/scraped off my left ovary. Since my surgery, I was able to get pregnant (after years of infertility treatments), my period cramps are so much less painful, and I no longer get painful cysts. The surgeon/specialist who I worked with was Dr. Michael Nimeroff, who is affiliated with North Shore OBGYN associates/Northwell Health Hospital in Manhasset. I highly recommend him.
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| Posted 2/20/18 9:09 AM |
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jellybelly79
LIF Adult
Member since 5/06 3389 total posts
Name:
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Endometriosis - PLEASE DONT MOVE
I have stage 4 endo
I am happy to answer any questions you have
My case is awful, I lost a kidney a year ago, I see an oncologist, Its a day to day struggle with pains
please feel free to message me if you would like to talk more
good luck to you
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| Posted 2/20/18 9:31 AM |
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lightblue
LIF Adult
Member since 1/17 2249 total posts
Name:
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Re: Endometriosis - PLEASE DONT MOVE
This is something I think I may have too. I get really painful periods and I had go to on BC pills since I was 15... and the only times I came off was when I wanted to get pregnant. I recently went off the pills for a month bc I was on antibiotics and I didn't want the pill to interfere w/ that but I was in agony once my period came. I get painful trapped gas and awful cramps. But like the PP said the only way to diagnose endo is a lap, I am just continuing to stay on BC pills for now.
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| Posted 2/20/18 9:34 AM |
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PhyllisNJoe
My Box Is Broken
Member since 6/11 9145 total posts
Name:
Phyllis
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Re: Endometriosis - PLEASE DONT MOVE
Posted by amac27
It is not enough for a doctor to say that they think you have it. The only way to accurately diagnose endometriosis is through laparoscopy. I had laparoscopy in 2012 and had my left Fallopian tube removed and had endometriosis tissue removed/scraped off my left ovary. Since my surgery, I was able to get pregnant (after years of infertility treatments), my period cramps are so much less painful, and I no longer get painful cysts. The surgeon/specialist who I worked with was Dr. Michael Nimeroff, who is affiliated with North Shore OBGYN associates/Northwell Health Hospital in Manhasset. I highly recommend him.
This
A Lap is the only way to really know if you have endo or not. Yes, birth control can help control it. But not just 3-6 months and once you stop taking it, it will continue to grow. What i'm thinking is your Dr. is trying to spare you a surgery. If your AF while on BCP is normal and you feel ok, you can suspect it is endo. If you are planning to have children, then you will need a lap (BCP and TTC don't mix lol) But if you're not planning to have children, the only "cure" for endo is hormones - I doubt you want surgery every few years to control it.
I had a lap done in 2012 and they removed/burned off some as well as adhesion's on my right ovary. I used to get the worst pain on my right side and for years, drs always suspected appendicitis. I almost had it removed by one dr. who as certain it had to be the problem. That was until my lap and she cut that adhesion. No more pain there at all.
My endo has changed throughout the years. After my lap, I had light AF and normal cramping up until about a year ago. It all came back. So lap lasted about 5 years. Now, at 40, my dr. is telling me to go on the pill until menopause. The more laps you have, the more scar tissue you can get so he is against another lap especially this late in the game.
Best of luck. I know the pain of endo. I used to take narcotics for 2 days every month the pain was so bad.
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| Posted 2/20/18 9:35 AM |
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babydreams21
LIF Adult
Member since 12/12 3656 total posts
Name:
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Endometriosis - PLEASE DONT MOVE
I had a lap to remove endo a few months ago. A lap is the only way to really find it. PM me with any questions. I'm glad I did it.
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| Posted 2/20/18 9:52 AM |
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jellybelly79
LIF Adult
Member since 5/06 3389 total posts
Name:
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Endometriosis - PLEASE DONT MOVE
I would like to add just like the above posters have said endo can only be diagnosed by a lap surgery
A few years ago I had a blood test done after my gyno saw a 6cm cyst and it is called a ca125. the normal numbers are about 30, mine was over 200. I had cat scans done and an MRI then surgery
Originally they suspected cancer throughout my body. It was frightening....I had masses all over my body (uterus, ovaries, colon, appendix and bladder). I was also sent for a colonoscopy...so the lap confirmed endo, I had a stent put in my kidney tube, 6 months later my kidney failed and had to be removed asap, the endo went into the tube and completely blocked it.
I live on pain pills
I am constantly calling out of work because of pains, my endo is verly pelvic related
I have been on bc pills and am the 2% that has no relief from them
I wasnt able to get pg
its been insane
I am currently havingmore tests done and most likely having a lap done next month..but my dr fears more scar tissue will form and that is also very painful
I hate my body :(
I love my drs, I am happy to share them
I use both winthrop and nslij drs
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| Posted 2/20/18 10:25 AM |
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Millie3
LIF Adult
Member since 7/13 1280 total posts
Name:
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Re: Endometriosis - PLEASE DONT MOVE
I am one who has undiagnosed pain on my left side. I literally drop to the floor in a ball, it's awful. I am 40 and I'll be on the pill for many many more years bc it's the only way to control the pain and heavy bleeds. I've already had 3 c sections with bad scarring, I don't want to know what it looks Like in there and will just stay on the pill.
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| Posted 2/20/18 7:01 PM |
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Millie3
LIF Adult
Member since 7/13 1280 total posts
Name:
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Re: Endometriosis - PLEASE DONT MOVE
Posted by jellybelly79
I would like to add just like the above posters have said endo can only be diagnosed by a lap surgery
A few years ago I had a blood test done after my gyno saw a 6cm cyst and it is called a ca125. the normal numbers are about 30, mine was over 200. I had cat scans done and an MRI then surgery
Originally they suspected cancer throughout my body. It was frightening....I had masses all over my body (uterus, ovaries, colon, appendix and bladder). I was also sent for a colonoscopy...so the lap confirmed endo, I had a stent put in my kidney tube, 6 months later my kidney failed and had to be removed asap, the endo went into the tube and completely blocked it.
I live on pain pills
I am constantly calling out of work because of pains, my endo is verly pelvic related
I have been on bc pills and am the 2% that has no relief from them
I wasnt able to get pg
its been insane
I am currently havingmore tests done and most likely having a lap done next month..but my dr fears more scar tissue will form and that is also very painful
I hate my body :(
I love my drs, I am happy to share them
I use both winthrop and nslij drs
Omg I'm sorry to hear this has happened to you, 
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| Posted 2/20/18 7:04 PM |
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jellybelly79
LIF Adult
Member since 5/06 3389 total posts
Name:
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Re: Endometriosis - PLEASE DONT MOVE
Posted by Millie3
Posted by jellybelly79
I would like to add just like the above posters have said endo can only be diagnosed by a lap surgery
A few years ago I had a blood test done after my gyno saw a 6cm cyst and it is called a ca125. the normal numbers are about 30, mine was over 200. I had cat scans done and an MRI then surgery
Originally they suspected cancer throughout my body. It was frightening....I had masses all over my body (uterus, ovaries, colon, appendix and bladder). I was also sent for a colonoscopy...so the lap confirmed endo, I had a stent put in my kidney tube, 6 months later my kidney failed and had to be removed asap, the endo went into the tube and completely blocked it.
I live on pain pills
I am constantly calling out of work because of pains, my endo is verly pelvic related
I have been on bc pills and am the 2% that has no relief from them
I wasnt able to get pg
its been insane
I am currently havingmore tests done and most likely having a lap done next month..but my dr fears more scar tissue will form and that is also very painful
I hate my body :(
I love my drs, I am happy to share them
I use both winthrop and nslij drs
Omg I'm sorry to hear this has happened to you,
thank you, its def not an easy disease :(
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| Posted 2/21/18 8:11 AM |
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TwinDani
We are complete <3
Member since 3/11 1750 total posts
Name:
Danielle
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Endometriosis - PLEASE DONT MOVE
Thank you for all of the replies. I called my doctor yesterday and I am waiting on a call back. I knew tests should be done before just saying you have this. I am upset that I have to even request the tests instead of her offering to see whats going on. I have been in pain for 6 months seeing other doctors and thought this doctor would actually see what was going on and not just prescribe me medicine and send me on my way. I am sorry to hear some of you have gone through this for such a long time.
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| Posted 2/21/18 8:34 AM |
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Leb
LIF Adult
Member since 12/09 4166 total posts
Name:
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Endometriosis - PLEASE DONT MOVE
I suspect I have it. I “think” I’ve always had painful periods. I remember in high school crying to my mom and she wouldn’t let me stay home from school. I would sneak a heating pad and in study hall put on my stomach. Advil and Tylenol do nothing. However I never thought this was abnormal until later 20s when I tried to get pregnant. Period was perfect, I feel ovulation pain and couldn’t get pregnant. All tests pointed to unexplained infertility and every test was perfect. I did ivf and it worked the first time.
There were times when preg I imagined the baby growing and stretching and ripping the endo apart. I would get pains that felt like rips. An easy birth and was shocked how my periods free birth didn’t hurt anymore! I am 5 years out from being pregnant and notice how my periods slowlyyy get a tiny bit more and more painful. Like it’s growing back.
I had a vaginal birth and don’t really want a lap to confirm. I will say I am generally healthy and thin but whenever I decide to go on a diet and get skinny lol my periods feel better. Like when I eat 1100/1200 calories a day and stay consistent I don’t get ANY pms type bloating, swollen painful boobs and periods don’t bother or hurt me. Not sure if it’s related! I’d love if there was a test or way to see if I have it.
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| Posted 2/21/18 9:39 AM |
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Endometriosis - PLEASE DONT MOVE
Enzo is such a scary thing. I went through the surgery with Dr. vidali check him out on FB. The stuff he shares is shockingly amazing! Also, I shared my story with a Work friend who was TTC and had kidney and urinary problems. I told her to run to this doctor... low and behold it was ENDO not her kidneys! Check him out!
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| Posted 2/21/18 11:48 AM |
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jellybelly79
LIF Adult
Member since 5/06 3389 total posts
Name:
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Re: Endometriosis - PLEASE DONT MOVE
Posted by 2BirdsofaFeather
Enzo is such a scary thing. I went through the surgery with Dr. vidali check him out on FB. The stuff he shares is shockingly amazing! Also, I shared my story with a Work friend who was TTC and had kidney and urinary problems. I told her to run to this doctor... low and behold it was ENDO not her kidneys! Check him out!
My endo killed my right Kidney
It’s crazy
My drs describes is like a spider making cobwebs in your body
Sucks :(
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| Posted 2/21/18 4:59 PM |
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canwhit
LIF Infant
Member since 12/10 79 total posts
Name:
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Re: Endometriosis - PLEASE DONT MOVE
I have endo. I had horrible pain. It got really bad that everytime I went number 2 I was crying. I went to the obgyn they said I was constipated and sent me to the GI doctor. The GI agreed but gave me a colonoscopy. When I woke he told me that the colonoscopy was unsuccessful because I was blocked. He sent me to a colon surgeon. He looked at the info and xrays provided and had a suspicion because of the area it was in that it may be endo. I had duel surgery with the colon surgeon and a endo specialist. The endo had penetrated my colon wall. On top of that I had multiple cysts and lots of other problems they fixed.
The pill will not cure you. What I have learned is there are several specialists. A lot of regular gynocologists cannot recognize all of it in you. Some try to burn it off. It should be cut out! A hysterectomy also will not cure you. If you choose to do a lap. Get it done with a doctor that specializes in endo.
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| Posted 2/23/18 6:31 AM |
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jellybelly79
LIF Adult
Member since 5/06 3389 total posts
Name:
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Re: Endometriosis - PLEASE DONT MOVE
Posted by canwhit
I have endo. I had horrible pain. It got really bad that everytime I went number 2 I was crying. I went to the obgyn they said I was constipated and sent me to the GI doctor. The GI agreed but gave me a colonoscopy. When I woke he told me that the colonoscopy was unsuccessful because I was blocked. He sent me to a colon surgeon. He looked at the info and xrays provided and had a suspicion because of the area it was in that it may be endo. I had duel surgery with the colon surgeon and a endo specialist. The endo had penetrated my colon wall. On top of that I had multiple cysts and lots of other problems they fixed.
The pill will not cure you. What I have learned is there are several specialists. A lot of regular gynocologists cannot recognize all of it in you. Some try to burn it off. It should be cut out! A hysterectomy also will not cure you. If you choose to do a lap. Get it done with a doctor that specializes in endo.
Agree
i had the same issues in my colon (and still do) :(
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| Posted 2/24/18 8:39 AM |
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springchick
make a wish
Member since 5/08 3566 total posts
Name:
justask
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Endometriosis - PLEASE DONT MOVE
I just had my second laparoscopy done first one was less than two years ago and a cyst came back also they found some fibroids and and scar tissue and they were all removed. I tried 2 cycle of Ivf and we think this might be the cause of why they didn’t work.
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| Posted 2/27/18 3:15 PM |
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Hope2009
Thankful
Member since 1/09 4429 total posts
Name:
A
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Re: Endometriosis - PLEASE DONT MOVE
Posted by TwinDani
Does anyone have experience with endometriosis? I am looking for a specialist.
My gynecologist without doing any tests told me she thinks I have it and gave me birth control pills and said it can take 3-6 months to work. If it does not work she will do more testing. I am reading that is not a good course of action and to see someone who will be more proactive. This weekend I was in such pain I could barely move for 2 1/2 days. This has been happening for 6 months and after going to a gastro and ruling out stomach issues this is the solution my gyn. provided.
There's a FB group called Nancys Nook, they have a list of specialist on there according where you live, they also have a ton of educational information about he disease. I'm in the process of making an appointment with a specialist for a lap. It's the only of knowing if I have it for sure.
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| Posted 3/1/18 5:54 AM |
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jellybelly79
LIF Adult
Member since 5/06 3389 total posts
Name:
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Re: Endometriosis - PLEASE DONT MOVE
Posted by Hope2009
Posted by TwinDani
Does anyone have experience with endometriosis? I am looking for a specialist.
My gynecologist without doing any tests told me she thinks I have it and gave me birth control pills and said it can take 3-6 months to work. If it does not work she will do more testing. I am reading that is not a good course of action and to see someone who will be more proactive. This weekend I was in such pain I could barely move for 2 1/2 days. This has been happening for 6 months and after going to a gastro and ruling out stomach issues this is the solution my gyn. provided.
There's a FB group called Nancys Nook, they have a list of specialist on there according where you live, they also have a ton of educational information about he disease. I'm in the process of making an appointment with a specialist for a lap. It's the only of knowing if I have it for sure.
thanks I will check that out
I love my dr if you want a second opinion
I see a gyno Oncologist
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| Posted 3/1/18 7:42 AM |
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