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Endometriosis: An Ignored Female Epidemic

Endometriosis.  It’s a long word for what is in short, a painful and mysterious disease.  No one knows what causes it, but approximately 6 MILLION women in the United States alone suffer from it.

“We now have staggering rates of endometriosis, fibroids, PID [Pelvic Inflammatory Disease], TSS and 1.7 million hysterectomies performed this past year–the most [ever],” she said. “Twenty-five years ago, these were rare illnesses for women.” Dr. Ilya Sandra Perlingieri, retired professor from San Diego State University and author of the recently released The Uterine Crisis.

Google “Endometriosis” and the first word that will jump out at you is INFERTILITY.  Many women with this disease can be rendered infertile, and yet doctors are still not mentioning it when you are describing your so called “phantom pain.”  Why is this?  Are doctors simply ignoring the disease?  Can 6 million women facing infertility really be that inconsequential?

Endometriosis is a disease where the cells from the lining of the inside of your uterus suddenly start appealing elsewhere in your body cavity.  They usually appear around the lower half of your body, but it has been found as far up as the lungs.

What do theses cells do?  They react just like your uterus.  When you get PMS, they get PMS.  When you get your period and bleed, so do they.  There is an internal bleeding every month from these cells.  So much so that over time the cells can form a cluster of blood, or a cyst, and attach to whatever is around.  They call these cysts “chocolate cysts” because of their color.   Yummy, right?  Not really.

These cysts can become quite painful.  In fact, even without a cyst the main symptom is PAIN.  For some women, it’s awful pain akin to the cramps you have just before giving birth.  It makes having sexual intercourse quite difficult, because if your partner hits one of those clusters of uterine cells, you are going to go through the roof.

You may have endometriosis and not even know it.  Maybe you just thought you got “bruised” inside somehow, or maybe you think you just have rough periods.  The disease doesn’t show on an ex-ray, the only way you can find out for sure is having bad enough pain that you need an operation to remove what they THINK is a cyst that shows on a sonogram, or surgery for a fibroid tumor.  That’s how I found out I had it.

A Fibroid tumor is a non-cancerous cluster of cells that latch onto your uterus.  I am lucky, I only had one but it became symptomatic, causing me lower back pain, bladder problems and pain during intercourse.  When they opened me up they found Stage 4 endometriosis.  They weren’t expecting it.  I was in surgery for 6 hours.  That was five years ago.  Now I have to go back in for another operation because it’s painful again.   I know a woman who has had 6 operations for this disease.  SIX.  To me, that sounds abusive.  Isn’t there something that can be done?

Here’s the skinny.  They say they don’t know how you really get it, but there is a good chance you got it from three places:

1) you were genetically predispositioned

2) you have an immense deficiency, perhaps caused by stress, a medical or (possibly) environmental condition

3) the menstrual flow backed up somehow.

When I read number three, I almost fell over.  Back up?  I didn’t think my uterus was capable of backing up blood INTO my body.  I thought the uterus was a contained system.  How could the blood get out any other way than through my vagina?  I was embarrassed to face my naiveté.  There is clearly a place between the fallopian tube and the ovary where they egg has to pop out and get sucked up by the tube to be sent down into the uterus.  What goes down… can go back up.

So what might cause this back flow?  A TAMPON perhaps?  Is it just possible that if you leave your tampon in ALL NIGHT like MILLIONS of women do, that a back flow of blood could occur?

I’m not the only person thinking along these lines.  Here’s a neat little quote from Vital Health.com

“It makes sense that if the tampon is not changed frequently, it can become saturated and may then act as a plug, increasing the back-pressure of blood into the uterus. “

Here’s another little tid-bit about tampons.  Your regular run-of the mill tampon contains DIOXIN.  A chemical that is a bi-product of bleaching.

Here’s another bit from the same article:

” In a 1993 case control study, Darrow et. al. compared tampon use in 104 women with laparoscopically confirmed endometriosis to 100 friends of the patients. Compared to their friends, women with endometriosis under the age of 30 were, on average, 3.6 times as likely to have a history of tampon use of greater than or equal to 14 years.”

and

“Clearly, there was an increased incidence of endometriosis with exposure to dioxin, and an increased severity with the dose of dioxin.”

Where else can you be exposed to Dioxin?  How about these fun facts from Energy Justice:

The major sources of dioxin are in our diet. Since dioxin is fat-soluble, it bioaccumulates, climbing up the food chain. A North American eating a typical North American diet will receive 93% of their dioxin exposure from meat and dairy products (23% is from milk and dairy alone; the other large sources of exposure are beef, fish, pork, poultry and eggs). In fish, these toxins bioaccumulate up the food chain so that dioxin levels in fish are 100,000 times that of the surrounding environment.

You can find them all throughout our atmosphere and wherever bleaching agents are sold.  Oh and BTW, YES.  IT CAUSES CANCER.

Dioxin Exposure Chart 
Chart from EPA Dioxin Reassessment Summary 4/94 – Vol. 1, p. 37
(Figure II-5. Background TEQ exposures for North America by pathway)

Doesn’t that just THRILL you beyond end?

WHAT TO DO:

Go vegan.  That’s it.  No meat, dairy, caffeine or alcohol.  No eggs, fish, butter, pork, poultry… SUSHI.  No ICE CREAM???  When they told me I almost fell off my chair.  ARE YOU KIDDING ME?  I’m a steak eating one martini a day gal.  What’s this shit?  I had to take a moment.

It seems this is my fate, my destiny to change.  If I want to live, if I want to have sex, if I want to not be in pain, not get worse (god knows what they are going to find when they open me up) I’ve got to give up all the foods I normally eat.  I have to become one of “them,” those “healthy people” who eat at Vegan restaurants and take B-12 and don’t smoke or drink, I have to do Yoga and meditate to lower my stress level, I have to learn to live entirely differently than I do now.

FUCK.

Well, I don’t have to give up swearing.  Thank christ.

Considering it’s becoming a world wide epidemic, I think I may just invest in a Vegan chain restaurant.  It’s not just me saying “world wide epidemic” btw.

It is estimated that there are over 70 million women worldwide who suffer from the symptoms of endometriosis making it a modern epidemic.

Endometriosis affects over one hundred million women worldwide and is more common than breast cancer and diabetes. Up to 10% of women in their reproductive years and a quarter to half of all women with infertility have been diagnosed with endometriosis

Then there is this:

The recent increase in the incidence of endometriosis coincides with the rapid increase of genetically modified (GM) foods in diets around the world.  He goes onto say that herbicide, such as the commonly used “Roundup” can also create an environmental estrogen toxicity.

There is much more to discover, but it’s a disease that is here and we need to get talking about it.  It’s changed my life already.  The frustration and shame over having something that affects my ability to get pregnant is a blog unto itself, but suffice it to say, it sucks.

Please share this article with any woman you know who is suffering from this disease.  All I want is for her to know she is not alone, and that there are people out there who care about how to help her get better.

 

 

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12 thoughts on “Endometriosis: An Ignored Female Epidemic

  1. I wonder if incidences of Endometriosis are lower in countries where tampons aren’t widely used?

    I have had awful period pains for the last fifteen years or so, and have wondered if Endo is the cause. I’ve known three friends with diagnosed Endo, but it seems to take an emergency (hospitalisation) to get a diagnosis. I gave up trying to gelp from a doctor years ago. I avoid all exercise for the first few days of my period, and manage the pain by taking a lot of ibuprofen (nurofen, advil) – I find that this only works if you take it just as the pain begins, once the pain has built to a high level, ibuprofen won’t help.

    1. Organic tampons are way better for your health, as most brand name tampons have bleached the cotton they use. However, it is really important to not wear a tampon for more than 4 hours, and to not use them overnight if you have or think you may have endometriosis.

  2. Loved this! Finally someone writing a passionate piece about endometriosis who actually did the research. It makes me so mad when OBGYNs do not recognize or acknowledge endometriosis. I mean didn’t they f**king go to medical school? This isn’t a rare disease. If anyone should know what endometriosis is it should be someone that went to med school. And if doctors don’t know what endometriosis then they shouldn’t be practicing medicine because the obviously did not pay attention in medical school and they are a danger to their patients. I mean it’s even on wikipedia for crying out loud!

    My sister has stage IV endometriosis and it took her 10 years of debilitating pain to even diagnosed. She had a moron for an OBGYN.

  3. I have also read that tubal ligations, c-sections and termination of pregnancies might be a cause, as they can perforate and damage the uterus. It is shocking to me as this can cause infertility for so many women and as for the medical profession or other, no one seems to really be alarmed! All so-called research is termed “inconclusive” yet this disease, and adenomyosis, is crippling women at an increasing and alarming rate.

  4. OMG..its about freaking time someone wrote all this information out like this!!! Having this “disorder” for the last few years, I’ve done a lot of researching & learning about all the alternative lifestyle adaptations I would’ve been doing. But Cady, I’ve finally found someone who can relate to all in the same way, w/ humor!
    ..sarcasm..witty satire..my kind of girl humor- Thank you! I hope you can get this manageable. Keep me updated!

  5. Didn’t Kirsten Storms had this disease that caused her to leave GH temporarly since last fall and to be recast for a while by Jen Lilley?

  6. I am reading this from the UK, and having my first operation on my endo in 2 weeks time. I was admitted in hospital last month because the pain was so severe I couldn’t walk. They released me, after being thankful it wasn’t appendicitis! Two weeks later I was back again with the same crippling pain. So they decided they better actually pull their fingers out! (Not the best phrase I could have used considering the amount of physical examinations I’ve been through this month) I really enjoyed reading your blog. My big sister has endo, so I think I inherited the pleasure, I have also done some research regarding my diet, and which foods do I need to give up. CARBS! I have to give up pasta. I’m Italian. This is not possible.

  7. This editorial should appear in either a national news magazine or a major women’s issues journal. No condition this prevalent should be so low on the national radar. Some of those statistics were very sobering.

    Some additional thoughts (clustered in no particular order):

    1. It seems like one of the major problems here is that it’s so hard to screen for this disease. After all, if it doesn’t show up on an X-ray and can only be discovered after an operation has been performed (due to what they think is a cyst appearing on a sonogram), how can women integrate awareness of this into their regular check ups? I don’t know the answer, but considering that this is such a major cause of infertility, this is a question that the medical community needs to start asking.

    2. I wonder if there is a correlation between the use of tampons with high levels of dioxin and cervical cancer rates. It would hardly be the first time that a commonly used household product was found to have had carciongenic effects. The FDA was created by Theodore Roosevelt to investigate these sorts of things.

    3. I’ve read about the health benefits of veganism before (as a committed carnivore, no less), but usually they are placed within the context of cardiovascular health. It’s intriguing how nutritional science is increasing the complexity of what we understand about how foods interact with our bodies.

    4. On a more personal note, Cady… I don’t know when you’re having your additional operation, but I hope everything goes well for you. Surgery is terrifying, and while I agree that six sounds downright abusive, two is bad enough. Zayt gezunt shnel.

  8. I also had this “disease” for many years.I apparently inherited from my mother, she had all the same pain when she was younger.Of course, they told her it was in her head and to get over it. When I started to have knifing pain up my butt during my period, she said “oh that’s normal that’s what I had”.And every other severe pain symptom after that as well. Years later we finally found out that these things weren’t “normal”, except in the fact that they were some of the normal(common) symptoms of endo. I was put on birth control pills for years to control the pain, they put me on cyclamen to stop my periods for 6 months and give the uterus a break from the hormones. And, i also found a herbal blend that did wonders…it had liver detoxifiers in it, and a few other things. It contained dandelion root, (liver cleanser),beet leaf or root(can’t remember which),cascara sagrada, uva ursi, and a few others I can’t recall right now.
    Then I finally found a gyno that went in there and burnt it all off…and I had alot of it, it was on the uterus, the ligaments, the ovaries, the back of the bladder, the bowels, the cul-de-sac ( that’s the area that will cause pain during sex..ouch).
    After, that I still had some cramps, but they were manageable with mild painkillers.
    One thing that I often wonder about now is, I was on the birth control pills for over 20 years, and i went off them after having the endo surgery(I had him tie the tubes at the same time)My periods never did get back to normal and I went into menopause after a few years.I think my body gave up trying to figure it out. I am now 46 and 3 years post menopause. I thought that I years to go before that happened. And the symptoms that go with that is another long list of nightmare…….now I’m taking hormones again..ugh.
    Hope you can solve your battle Cady……try some dandelion root…talk to a good health food/vitamin person.
    there are many good books on the subject with having to cut out all the good stuff 🙂 Good luck.

  9. Those are some really alarming facts and this sounds so painful. I’m sorry you are suffering with it and I hope the operation and diet changes help. I will be thinking good thoughts for you! I hardly knew anything about endometriosis so I thank you for sharing your experiences. I’ll definitely be sharing this post with the women in my life.

    In hopes of making you feel slightly better about the vegan thing, I assure you it’s not all super healthy and boring. It must be awful to be forced into such a huge diet change but, as long as you’re here, you should know we have awesome cupcakes! It’s a good time, I swear! If you cook and/or bake much, I highly suggest checking out The Post Punk Kitchen at http://www.theppk.com for absolutely amazeballs vegan recipes if you have not done so already. (I’m vegan food blog obsessed so, if you need recommendations for such things, I would be happy to give you some!) Also, So Delicious coconut milk ice creams are a thing of beauty.

    Good luck with everything!

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