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!

50 Years Is Too Long To Wait Petition

I urge everyone to please sign The Lupus Alliance of America LI/Q Affiliate ‘s Petition – “Help those with Lupus! Half a Century is too Long to wait for new medications!” Petition .

May is Lupus Awareness Month and what better way to help those plagued with Lupus fight for better medications than to sign this petition that targets the United State Senate and Congress.

You don’t need to have Lupus – I don’t. Or even know someone who has Lupus. I just ask for your signature. As someone who suffers from chronic illnesses, I know the need for new medications to combat them.

Please give this petition and the cause of Lupus your support. It will only take a few minutes of your time. Less than it took me to write this post.

The day of the Doctors

Yesterday was a whirlwind day. It was crazy, but good.

To begin:

Endocrinology:

I arrive and park my car. I plug the ear phones into  my ears and put the jack thingy into my cell phone and hit random on my music player  and what comes up? The Imperial March from Star Wars, which I had no idea why it was in my phone, but sort of fit the occassion and gave me that extra boost I needed to barge into Dr.’s office and demand the attention I needed.

Turns out I have autoimmune thyroid disease and he doubled my dose of thryoid medicine. Hopefully this will help me to feel somewhat normal soon. I also mention the smoke odor I keep smelling on occasion that no one else is smelling. He, too, was concerned. He did say he’d heard it before. My other doctor said it could be tied to migraines and seizures. He was going to look it up. My tests all came back and pointed to further testing for Diabetes Insipidus so he is scheduling the water deprivation test. I am to call Thursday morning and find out when that will be – it will be soon.

Urology:

Yeah, so, this was pretty much a waste of time but needed to close my case with the pee docs. 🙂 It was nice, I might add, to cross a doctor off my list for a change instead of adding one to the list. But there really wasn’t anything the urologist could do for me. He couldn’t give me any bladder control meds because that would render the water dep test pointless. So, all in all, it was a quick visit.

So I have another autoimmune disease because scientist are already thinking endometriosis may be an autoimmune disease. Lovely. They also think all of this is tied to my migraines.

During my second trimester of pregnancy with my daughter I started passing out – sort of like I’ve been doing recently. I was refered – reluctantly – to Cardiology for a holter monitor because of my heart murmur. I was then diagnosed with dysautonomia and told to wear compression stocking, increase my salt intake and water intake. I was to take every measure possible to avoid extreme heat and dehydration. My delivery of my daughter was nothing short of traumatic. I had contractions, five minutes apart for a week before they would admit me. They finaly had to admit me because her heart rate was unstable. When they broke my water there was meconium in the fluid and was given 4 hours to deliver before a c-section. Literally 4 hours later she shot out of me like a canon ball. No one was prepared. The doctor was literally pulled from another delivery – he had to leave in the midst of sewing up a woman and they dressed him enroute. My daughter was practically out by the time he got there and he almost dropped her. She came out with one arm stretched out like under dog coming to save the day.

Holy freakin’ crap – When I looked up dysautonomia for that link above I was reading and I quote: “In other cases, the heart may race (tachycardia) for no apparent reason (known as Inappropriate sinus tachycardia),the patient may experience severe migraines regularly, or the kidneys may fail to properly retain water (diabetes insipidus).” WOW.

It’s like one huge Pandora’s box has been opened. Am I about to be cursed with another summer suffering with the compression stockings? Oy.

(I edited this post because I am finding myself jumbling things in the past days and not making sense. Doctors appointments are jumbling together. Forgive me and bear with me. I will get it all straight, eventually.)