A link between chemical sensitivity & endometriosis? A reader wants to know…

Sara has asked:

With the more research and experimentation I do, I have found that I am extremely chemically sensitive.  I hadn’t linked this to endo until I started to find articles linking the two.  So I slowly removed as many chemical exposures in my life that I could.  And gradually, I have felt better and better.  But as my endo gets worse, I seem to be becoming more and more chemically sensitive.  So I am wondering if this is something you’ve explored?  And if so, any good ideas?

The link between chemical sensitivities and endometriosis was something that had never occurred to me until recently. Over the years of blogging, I have been privileged to hear from women with varying stories, varying paths on their road to diagnosis or coping with endometriosis. And then, as more accounts poured in and I met more and more of these women, a realization occurred: those stories were not as “varied” as I had once thought.

Sifting through the comments, emails, interview accounts, I saw common illnesses. Thyroid, arthritic conditions, autonomic nervous system dysfunction (POTS, dysautonomia),  too many to even list here. Then this one – MCS – multiple chemical sensitivity – sprung up.

Personally, I didn’t think much about the condition. But as a recent run-down of newly acquired drug and food sensitivities have changed my life, I started wondering if there was a connection.

My endocrinologist has noted that in the last 3 years, I have become allergic to three medications and highly sensitive to food additives. One of these food additives is high fructose corn syrup. If you’ve seen the documentary Food, inc. you will know how this corn alteration has proliferated the food industry. It’s cheaper than sugar. It’s sweeter than sugar. And it’s destroying our health… but that’s a post for another day.

What started off several months ago as a sensitivity to HFCS is now also a sensitivity to plain old corn syrup. I’ve found if corn syrup is within the first three ingredients in a product, it will make me sick. Recently a family member thought a dish was HFCS free. I ate a LARGE portion of this, and within 30 minutes my stomach was distended to the girth of a four month pregnant woman! Looking at the label, not only did it have HFCS, but corn syrup was the second ingredient with HFCS being the FIRST!

This left me thinking, in a world whose food industry is corn dominated, if I become sensitive to even corn syrup, what is going to be safe for me to eat?

Then I started to look into this link between endometriosis and multiple chemical sensitivity. Since there seems to still be debate on diagnosing MCS, it is hard to find good research looking into the link between that endometriosis. And we know research into endometriosis is already lacking, so, yeah! But, yes, there are articles, even doctors, linking chemicals and food additives (which are chemicals!) to endometriosis. And there is a link to these and autoimmune disorders, which is why my endocrinologist is in the endometriosis is an autoimmune camp. And I agree with her.

But if I were to just survey the endometriosis population, I see a very prominent theme: multiple illnesses of an autoimmune nature. My endocrinologist views endometriosis as an autoimmune disease – and being just one of many illnesses existing under the “autoimmune umbrella”.

I have a condition called autonomic nervous system dysfunction. I have had it since I was a child. There is a link between this and autoimmune diseases.

My endocrinologist has attributed the following to an autoimmune condition where my body is, in essence, fighting itself –

autoimmune diabetes insipidus

Hashimoto’s Thryoiditis

endometriosis

autonomic nervous system dysfunction

And now… drug and food chemical sensitivities

I cannot say there is a researched link between MCS and endometriosis, but it’s almost as if we all have pieces of the same treasure map and each piece leads us to the same fixed point: chemicals and additives that have been flooded into our daily lives, whether we want them there or not. They are in the air, the water, our food, our products!

In my opinion, getting a good doctor who will listen and investigate is the key to understanding how all this craziness is connected.

Years ago when I was first diagnosed with diabetes insipidus, about a year after being diagnosed with Hashimoto’s, and a few years after being diagnosed with endometriosis, and SEVERAL years after being diagnosed with autonomic nervous system dysfunction… (see a common link here – it just keeps piling up!), I was told, “it’s all a big umbrella”. And now… medicines (all of which I have had before!) and food (crap I grew up on) are crowded under this umbrella.

And… I’ve noticed… I smell things others can’t smell. I’ve changed bathroom products because the smell gave me a headache. None of this seemed not-normal to me until I’ve talked with other women who have endometriosis and thyroid issues and a host of other things we have in common,  and it has made me wonder – just how stinking big is this darn umbrella?

To me – there is a link. And it just shows how important research is, because we need to find that fixed point on all of our treasure maps. We need the research community to find that X.

Sara, thanks for your question!

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7 responses to “A link between chemical sensitivity & endometriosis? A reader wants to know…

  1. Endochick,

    Like Sara… I have endometriosis and chemical sensitivities. I was officially diagnosed in 1992 with multiple chemical sensitivity (MCS). I just posted a good research link about MCS today on my Facebook wall.

    Sara, I react to everything from “air fresheners” to dryer sheets to gas fumes to cigarette smoke to lighter fluid fumes. The list goes on and on.

    If you’d like to meet others who have both endo and chemical sensitivities, feel free to check out blog posts I’ve written about all this. You can also send me a friend request on Facebook, if you like. If you click my name on this comment, you’ll find my blog (which will also lead you to a link to find me on Facebook).

    If you do send a FB request, please include a message with it so that I know you are the Sara who commented on Endochick’s blog.

    You are not alone and there are many women with both chemical sensitivities and endo!

    Jeanne

  2. Yes, there is a definite link between chemical sensitivities and endo. The international headquarters of the Endometriosis Association is fragrance-free! We’re hoping the fragrance-free movement becomes what the cigarette smoke-free status is today. And that it happens a little faster than a generation! Our children’s health depends upon it.

  3. I do not know why I have seen no discussion of the effects of the pill, morning after pill and the termination pill on this condition. This is a serious condition with serious consequences, but it is contentious, there are a number of factors in causing it and no one has discussed whether it is a build up of the pill. There are no conclusive reports on the long term use of the pill that I have seen or have had access to. All of the pills above bring with them important freedoms for women, however if endometriosis is a long term side effect of poor prescription by G.Ps and pharmaceuticals companies then this would bring about a gargantuan class action. All of these pills are can be taken from a young age and the same dose is given regardless of weight at my lightest 81/2 stone I would have taken the same dose as someone of 12 stone, this is equally true of Levonelle.

    I can understand that any discussion of the effectiveness and side of effects of various forms of the contraceptive pill has be handled sensitively, however, whenever I have been prescribed it in attempt to control my condition it has made all of my symptoms worse and accelerated my bleeding. I no longer take any sort of hormone but was refused to be allowed to see an endochrinologist by my consultant gynaecologist as follow up to ablation and removal of a polyp because she said it had nothing to do with my condition. I have endometriosis, I have been diagnosed with it, it is in my notes from three different consultants. It is all so conflicted. I am due for a scan on Monday as the pain and bleeding have been accelerating, I have had 9 reasonable months of getting my life back and re-establishing myself as a reliable freelancer. I do not want to go back to where I was as I may loose everything this time.

  4. I should add that I live in the UK and I do not feel that the discussion has moved to asking why this is happening, and if it is a common as is suggested that there must be an interplay of factors in causing this, both environmental and genetic, therefore, why is it not being investigated. Equally if it is so widespread, it is having an economic effect in that there are lost working days to business and potentially a whole group of women of working age forced into sickness/unemployment benefit.

  5. To add to my previous comment, I have been thinking about the long view of this condition. Is it a late 20th century phenomenon? Or was it something that existed unnamed for centuries and sat squarely under the label of women’s problems? Is it a condition whose thread has only been able to be extricated from a knot of symptoms and owing to developments in technology? Would this be something that could be worked out or are medical records too vague? It really feels like it is hard to sit endometriosis in a context, why is this? If it is the case that it is something that has always existed but has accelerated in prevalence in the last 25 years then there could be a number of factors, better ability to diagnose, but then has it also become more prevalent due to environmental triggers? If this evident, what are they? A problem is periods are visible and invisible, every woman experiences them. They are the only irrefutable everyday visible marker of the consequence of hormonal changes in the population at large, but they are still a taboo. In every woman’s toilet in almost every public bathroom there are bins. In every supermarket, chemist, corner shop there are whole aisles devoted to products related to periods, yet people do not talk about them, are squeamish, but evidence that they happen is there. I am talking about this because I think highlights cultural attitudes to this and why the questions are not being asked. They need to be. I am starting to think that perhaps, if there is a genetic predisposition to endometriosis this should be found out before women are given the pill and birth control should be worked out accordingly.

  6. Ladies I have had great sucess with symptoms by not eating or using products that contain Gluten,nightshade plants, Legumes,Dairy,and not use hormone replacement therapies.Stevia powder instead of sugar too.Home made food takes time and its hard at first becouse of the low energy and pain that we suffer from; but it will get better promise. This diet change will take off the pounds too.Double win.Get some great gluten free cook books and take charge of the situation.It takes time to heal your body from the inside out .Make sure you talk to your doctor to let them know what you would like to try so they can track your sucess and monitor your blood.Good luck and God bless.

  7. i agree there is some connection, i also have endometriosis, MVPS aka disautonomia, MCS multiple chemical sensitivity, fibromyalgia, gastrointestinal issues, tinnitus, insomnia, and infertility issues.

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