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How Many Of Us Have Been Diagnosed With Endometriosis?
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Were you ever diagnosed with endometriosis?
No
47%
 47%  [ 22 ]
No, but I suspect that I might have it
4%
 4%  [ 2 ]
Yes
47%
 47%  [ 22 ]
Total Votes : 46

Author Message
Stanz
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 16 Oct 2009

Posts: 947
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2017 Sep 26 - 3:04 AM


Food Intolerances : Genetically GS via Enterolab, Tapioca
Location: Oregon

PostPosted: Thu Nov 24, 2011 12:29 am    Post subject: Reply with quote

Wow, don't know what anyone else makes of this survey, but from what I see, it's pretty damning as to whether we ever had "endometriosis" or that we just had scarring because of a gluten intolerance.

EastWestGirl, I don't know what to say about what you have been through. I am so sorry, I can only imagine how hard this would be and I know how inadequate that sounds to you.

I am just so sad that we have had doctors who never thought outside the box.
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sallee

United States

Joined: 18 Dec 2011

Posts: 3
User's local time:
2017 Sep 26 - 5:04 AM


Food Intolerances : Lactose

PostPosted: Sun Dec 18, 2011 9:25 pm    Post subject: Endometriosis DX Reply with quote

Deb, I am so sorry to hear that. My experience was 15 years of agony ending with total hyst at 26. There are such wonderful advances in treatment of Endo now; it is very heartening to hear success stores. My niece being one of them.

Sallee
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Stanz
Rockhopper Penguin
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United States

Joined: 16 Oct 2009

Posts: 947
User's local time:
2017 Sep 26 - 3:04 AM


Food Intolerances : Genetically GS via Enterolab, Tapioca
Location: Oregon

PostPosted: Sun Dec 18, 2011 10:04 pm    Post subject: Reply with quote

Sallee,
I'm wondering what wonderful advances in treatment of Endometriosis have happened since my days w/it in relation to your niece's experience.
Connie
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tex
Site Admin
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Joined: 24 May 2005

Posts: 30499
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2017 Sep 26 - 5:04 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Dec 23, 2011 9:56 am    Post subject: Reply with quote

Some recent research shows some worrisome statistics, associated with endometriosis.

Quote:
Overall, women with endometriosis had a 50 percent higher odds of developing inflammatory bowel disease compared to women in the general population, the study found. The increased risk lasted for up to 20 years after being diagnosed with endometriosis, report researchers led by Dr. Tine Jess, an epidemiologist at Statens Serum Institute in Copenhagen, Denmark.

The risk was even more pronounced among women whose endometriosis was verified surgically, the team noted. Among these women, the risk for inflammatory bowel diseases jumped to 80 percent compared to women without endometriosis in the general population.


The red emphasis is mine, of course.

http://consumer.healthday.com/Article.asp?AID=660006

Since surgery amplifies the problem so significantly, that suggests that the additional formation of scar tissue, (which surgery promotes), may be behind the increased risk.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Stanz
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 16 Oct 2009

Posts: 947
User's local time:
2017 Sep 26 - 3:04 AM


Food Intolerances : Genetically GS via Enterolab, Tapioca
Location: Oregon

PostPosted: Fri Dec 23, 2011 11:07 am    Post subject: Reply with quote

Wow, Tex, that's very interesting. Kind of makes you wonder if hysterectomy should EVER be done for endometriosis, but I know that for me the pain began when I first began menstruating and would be painful enough to cause me to literally pass out from it and my back would go numb for days. I welcomed the hysterectomy at 26, but it also kicked off the "obstructions" caused by scar tissue that also continued for years. I'm fairly certain I am full of scar tissue to this day.

So many ways to look at this aren't there? I've believed that I never had endometriosis since doing my own research post dx/w/MC, that it was just scar tissue because of gluten intolerance. As I recall, you have also had problems with scar tissue, as well as other men here. I can trace my episodes of intestinal pain back to at least the age of 8 or 9.

I wonder if there is also a pattern of frequent Urinary tract and other "weird" infections among these patients in the study, that could be traced to MAP, which I am also certain i had. Fascinating. Not claiming to have "the answer", but kind of makes you wonder how all these people can be so educated and never connect the dots, doesn't it?
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Zizzle
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Joined: 22 Jul 2010

Posts: 3483
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Food Intolerances : gluten, dairy, soy, sesame seeds, buckwheat, amaranth, walnuts, peppers, CORN!

PostPosted: Wed Dec 28, 2011 12:44 pm    Post subject: Reply with quote

Thought you all might be interested in this article. I posted the whole abstract becuase MedScape required a subsription. Nothing eath-shattering, but they are noticing the association between Endo and IBDs. I suspect the association would have been stronger if they included MC in the list of IBDs.

Quote:

Endometriosis Linked to Later Inflammatory Bowel Disease
Ricki Lewis, PhD


December 20, 2011 — Endometriosis is associated with an increased risk of developing inflammatory bowel disease (IBD), according to a large-scale, long-term study by Danish researchers published online December 19 in Gut.

Both endometriosis and IBD present with abdominal pain, typically begin in early adulthood, and are chronic inflammatory disorders. In the past, diagnosis of one has precluded diagnosis of the other. However, Tine Jess, MD, and colleagues from the Statens Serum Institute in Copenhagen, Denmark, examined national registers to investigate the possibility that instead of being mutually exclusive, perhaps endometriosis predisposes a woman to developing IBD.

The researchers examined the medical histories of 37,661 women hospitalized for endometriosis at any time between 1977 and 2007. Of these women, 320 developed IBD (228 women developed ulcerative colitis, 92 developed Crohn's disease). The women with endometriosis had an increased risk for IBD overall (standardized incidence ratio [SIR], 1.5; 95% confidence interval [CI], 1.4 - 1.7), as well as for ulcerative colitis (SIR, 1.5; 95% CI, 1.3 - 2.0), compared with women in the general population. Stratifying the patient groups by those who underwent surgery that verified the endometriosis led to an increase in IBD risk of 80% (ulcerative colitis: SIR, 1.8 [95% CI, 1.4 - 2.3]; Crohn's disease: SIR, 1.7 [95% CI, 1.2 - 2.5]).

The increased risk persisted for 2 decades after diagnosis of IBD, and the average lag between endometriosis diagnosis and development of IBD was approximately 10 years. The fact that the association persists argues for its strength.

The researchers hypothesize 2 explanations for the association between the 2 disorders: that they share a common underlying inflammatory problem, or that treatment for endometriosis (oral contraceptive use) increases the risk for IBD.

Strengths of the study, the authors write, include that the population has free, universal health care and excellent diagnosis registries that collect data prospectively, minimizing recall bias. The study covered many years and adjusted for age and period-specific IBD incidence in the general population.

Limitations of the study include omission of mild endometriosis cases and risk of ascertainment bias, as both types of diagnoses came from the same register. Another confounding factor might arise from the fact that the mean age at endometriosis was elevated (38.6 years), suggesting that some women may have been diagnosed when seeking infertility treatment.

The researchers conclude, "there is still a need for large-scale unselected cohort studies to confirm the influence of oral contraceptive use on the short- and long-term risk of IBD, not least in the context of concurrent endometriosis."

_______

The lead author was supported by a grant from the Danish Council of Independent Research. The researchers have disclosed no relevant financial relationships.

Gut. Published online December 19, 2011.
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tex
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Joined: 24 May 2005

Posts: 30499
User's local time:
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Dec 28, 2011 1:52 pm    Post subject: Reply with quote

Zizzle,

That's the same research project that the article I posted about was based on. The problem with the origin article is that they base the results on risk ratios, (they call it standardized incidence ratio, to make it sound more sophisticated Rolling Eyes ), rather than percentages of increased risk, so it's more difficult for most people to visualize the relative effect, (if they even notice the risk ratios in the report).

Of course, that's the standard way for research articles to be formatted, but there's a question in my mind as to whether that practice is followed for clarity and brevity, or simply for the sake of making it more difficult for anyone without a scientific background to read such reports and understand them. I suspect the latter, because researchers love to pretend that there is something mysterious and complicated about their work, and the medical community in general, adheres to their own unique dialect, as much as possible. Of course, that's somewhat common with most of the other professions, as well.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Sharaine
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Joined: 28 Jun 2011

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Food Intolerances : Gluten, dairy, some soy, legumes, almonds
Location: Colorado

PostPosted: Thu Dec 29, 2011 7:17 pm    Post subject: Reply with quote

I was diagnosed with Endometriosis in 1982, had laproscopy that month, then again in 1986 with yet another laproscopy to clean it up. This went on for years and years. I finally had a radical hysterectomy when I was 43. It was very necessary for many reasons. I had endo all over my other organs; each one had to be cleaned off with a laser. Not fun!

Sharaine
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Stanz
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 16 Oct 2009

Posts: 947
User's local time:
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Food Intolerances : Genetically GS via Enterolab, Tapioca
Location: Oregon

PostPosted: Fri Dec 30, 2011 4:00 am    Post subject: Reply with quote

Hi Sharaine,

Thank you for answering this survey. 40% of us have now answered yes, a pretty astounding percentage, IMO. So my question that led to this survey was whether we actually had scar tissue caused by gluten intolerance, or if it was endometrial tissue that somehow "escaped" from the uterus. I don't believe that I ever had endometriosis. I also had scar tissue throughout my body. Men here have also had scar tissue that has caused obstructions and problems. I'd be curious to see results of the examination of this tissue as to whether there is any biological difference between male and female. I believe I had scar tissue related to gluten intolerance.

I hypothesize that this scar tissue is caused by leaky gut due to gluten sensitivity and bacterial infection, specifically MAP - mycobacterium avium paratuberculosis. http://www.crohns.org/map_env/problem.htm It has been directly linked to Crohn's Disease. My paternal Grandfather died of this.

So many questions.

Connie
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tex
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Posts: 30499
User's local time:
2017 Sep 26 - 5:04 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Dec 30, 2011 9:52 am    Post subject: Reply with quote

Connie,

I didn't vote in this survey, since I obviously can't have endometriosis, but in my case, the problems included not only a severe stenosis in my sigmoid colon, but in my second surgery, (4 years later), adhesions - my guts were growing together in numerous places where they made contact, and had to be surgically separated.

Tex
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cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Stanz
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United States

Joined: 16 Oct 2009

Posts: 947
User's local time:
2017 Sep 26 - 3:04 AM


Food Intolerances : Genetically GS via Enterolab, Tapioca
Location: Oregon

PostPosted: Fri Dec 30, 2011 1:35 pm    Post subject: Reply with quote

Tex,

What my surgeon described seeing when I finally had "the obstruction that wouldn't clear", was that I had adhesions throughout. One was the thickness of a leather shoelace that had bound loops of my intestine together. He didn't use the words "scar tissue". I was in so much danger of having the intestine burst, that he didn't dare do much beyond releasing the inflamed kink. I am pretty sure that I have at least 2 places in my gut where the intestine remains restricted by adhesions, as I can feel a pull there if I am in particular positions, almost as if there is a hernia, but it is never painful - just kind of weird - and always in the same places.

Considering that we here are but a small percentage of those who would actually be genetically Dx/w GS, should they be tested, I think the 40% we see here in this survey is pretty significant. Other than checking for cancer cells, post surgery, I doubt that surgeons would have even requested tissue be checked as to possible source. It would seem there would be ways to prove if the source is the uterus or gut, as endometrial tissue has blood supply, whereas I don't think scar tissue does.

http://www.alternativesurgery.com/education/endometriosis

Quote:
How common is endometriosis?
The true incidence of Endometriosis is not really known, but it is thought that 10-15% of all women of reproductive age will develop Endometriosis and 25-35% of all infertile women have Endometriosis. The risk of this disease is seven times greater if a mother or sister have had the disease.


If this is true, then the survey results here are pretty unusual, and the genetic link that is attributed to give the predisposition for females in a family to have endometriosis, may just be GS.

I was always told that I probably had a tendency to produce scar tissue, which is how they explained the obstructions post hysterectomy, however I have never had problems with scar tissue forming anywhere else and I clearly had a history of stomach aches, appendicitis, typhlitis, etc. from early childhood. I also have a history of possible traumatic injury.

Perhaps we should create a survey asking if men have had intestinal adhesions.

Connie
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tex
Site Admin
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Joined: 24 May 2005

Posts: 30499
User's local time:
2017 Sep 26 - 5:04 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Dec 30, 2011 2:00 pm    Post subject: Reply with quote

Connie wrote:
Perhaps we should create a survey asking if men have had intestinal adhesions.


The problem is, the only way to discover it is through surgery, or a truly unusual scan, so most of them wouldn't know.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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