Feel Good Fridays!

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It’s FRIDAY!!!!!  Last night I had the pleasure of going to dinner with two very special EndoSisters.  One, Jenn, I’ve known for several years and we were friends long before I knew we were EndoSisters.  The second, Sara, who holds an incredibly special place in my heart.  She and I first got together for dinner in January 2015…and our support group meetings stemmed from that initial meeting.  Both ladies are incredibly strong and beautiful, inside and out.

And both were there for me yesterday when I needed them in a moment of pain.  They are my own pillars of strength.

So today’s quote is a shout out to all of you who are pillars of strength, whether you realize it or not.  Deeba Salim Irfan wrote,

“You make the world come alive. You make the world colorful. You are the inspiration behind all that happens. You are the pillar of strength to many around you, the centrifugal force of your own little world, called family. I love being a woman and celebrate being one everyday, hope you all do too!! And to all those who battle their various circumstances, the hurdles, the sacrifices and the compromises they make, wish them all inner strength!…”

Read it again.  Take it to heart.  And share it with others who may need to read it…

Have an incredible weekend!

Lisa

Does coloring my hair make my Endometriosis worse?

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My title is misleading.  I don’t color my hair…but it got you here! Do you color yours?

Why are we talking about hair dye on our Endo blog today?  Because it came up at one of our support group meetings.  While we were hurling out ideas and things we’ve heard can be toxic to our illness, someone asked about hair dye.  I mean, sure, it makes us look great, but it’s right up there close to the brain, but what does it do to our bodies?  It sure ain’t natural: full of chemicals!  Chemicals that could seep into your skin and…do what?

That’s what we’re here to find out.

Typical Chemicals in Hair Dye

There’s a whole slew of chemicals that make up hair dye and color products.  These few here stood out in my mind as the most relevant to our topic today.

Resorcinol may disrupt hormones and cause skin irritation.  It’s used in dyes, photography, tanning, glues, antiseptics, disinfectants, and skin creams (used to treat acne, eczema, psoriasis, and dandruff).  Some concerns people have regarding resorcinol in their hair dyes are it’s highly flammable; if inhaled may cause nausea, abdominal pain, or loss of consciousness; and may cause inflammation and pain when it comes in contact with skin.  It’s been shown to alter thyroid glands in rats.  In humans who have had high exposure to the chemical due to continued use of products containing it, it can affect the central nervous system, alter the thyroid glands, cause skin irritation, and cause chemical sensitivities.  The MAK Collective for Occupational Health and Safety does state; however, that “there are no data available from studies of reproductive and developmental toxicity, genotoxicity or carcinogenicity of resorcinol in man.”  There have been studies that show small amounts of resorcinol is absorbed into your scalp when you dye your hair, as well as some remains on the scalp to be absorbed later, but is excreted by the body in about 30 hours.

Phenylenediamine is one of the chemicals found in hair dye that may lead to an increased cancer risk.  You may also hear it referred to as PPDs.  It is found in hair dye, cosmetics, photographic developers, rubber, oils, and gasoline.  Some people have complained of dermatitis, redness, and swelling due to contact PPDs while dying their hair.  If someone has a severe sensitivity to PPDs, it can be life threatening.

Petroleum is considered a xenoestrogen and may increase estrogen levels.  Again, we all know Endometriosis loooooves estrogen.  A 2010 study showed that it may disrupt hormone receptors and estrogen levels.  Also, petroleum exposure may cause cancer.

Hormones & Hair Dye

A 2015 study of Japanese women found that long-term use (10 or more years) of hair dyes may increase testosterone levels, as much as 14% higher than women who didn’t dye their hair.   Past studies have linked an increased amount of testosterone to an increased risk of developing breast cancer; although the authors of the study suggest that the increase associated with hair dye is too minimal to affect the risk of breast cancer.

Although many hair dyes contain petroleum, I’m not sure how much of it is in hair dye and how much exposure is needed to increase estrogen levels.  But, if you’re conscientious about estrogen increases, it may be something you want to look into and avoid. Cretinnen_aus_Steiermark,_1819_gez._Loder,_gest._Leopold_Müller

A 2016 study found a “significant association” that women who used hair dyes were more susceptible to goiters.  A goiter is an indication that something is abnormal with your growth of your thyroid; it is producing too much, too little, or just the right amount of hormones.  Again, a 2012 study of rats proved that resorcinol exposure altered their thyroid glands, too.  Why does this interest me?  Because I’ve once read that 50% of women with Endometriosis suffer from a thyroid disorder, mostly hypothyroidism.  Hypothyroidism is an autoimmune disorder.  And many people consider Endometriosis to be an autoimmune disorder.  Connection?  Coincidence? Who knows…but interesting, nonetheless.

The Dreaded C-Word

Cancer.  If you live in California, you’re used to seeing the signs and labels on everything that everything causes cancer.  It sort of desensitizes you to the C-Word…until someone you know and love announces they have it…Ugh.

Some studies have shown that repeated and long-term exposure to the chemicals found in hair dye may lead to a higher risk of developing non-Hodgkins lymphoma, a cancer of the lymph system, or Leukemia.  These results were more prominent in women who dyed their hair at least 8 times a year, for at least 25 years, using permanent dyes versus non-permanent dyes, and chose darker colors.  Yale’s study found that most of the results were because women dyed their hair prior to 1980, when a lot of carcinogens were found in hair dye.  Changes in the industry and health standards since 1980 have supposedly lowered that risk.  However, the authors note that these results may have been better simply because “recent users are still in their induction and latent period” and the effects haven’t yet surfaced.  But of course, a 2015 study found no true increased risk of developing cancer, but did find an increased risk of developing malignant melanoma.  And, not to be outshone, a subsequent 2015 study found that the hair dye is cytotoxic (toxic to living cells) to humans.

But if hair dyes have been linked to an increased risk of cancer, why is it still allowed to be sold on the shelves?  Is the hooplah and hype really all that bad?  The National Cancer Institute stepped up and put together a nice little webpage on hair dye and the risk of cancer (you can read it here).  The studies are conflicting, yes it causes cancer, no it doesn’t – the International Agency for Research on Cancer deemed it “not classifiable as to it’s carcinogenicity to humans.”  It’s indeterminate.  Insufficient evidence.  The choice, and any potential risks, are yours.

 

Alternatives

Still want to dye your hair but get way from all the chemicals?  You can try henna dye for reds, browns, and blacks.  Or you can look into organic hair dyes, to which there are plenty available online.

My Two Cents

I couldn’t find anything that jumped out at me and screamed dying hair is horrible for Endometriosis.  It just comes down to our own personal choice : the potential for toxic exposure and increased estrogen.    To color, or not to color…that is the question.

Happy dyeing…and no dying allowed!

 

Resources:

American Thyroid Association

AnnaMarie Gianni Ingredient Watch List: Resorcinol, the Hormone-Disrupting Chemical in Hair Dyes

ANW Health NewsletterDangers of Hair Dye

Beauty Editor5 Scary Reasons to Avoid Petroleum and Mineral Oil in your Skincare Products

DermNet NZAllergy to Paraphenylenediamine

Ecotoxicology and Environmental Safety – (Abstract; Oct. 2015) Anaylsis of cytotoxicity and genotoxicity on E. Coli, human blood cells, and Allium cepa Suggests a Greater Toxic Potential of Hair Dye

Environmental International – (Abstract; April 2016) The Use of Personal Hair Dye and Its Implications for Human Health

Environmental Toxicology and Chemistry – (Abstract; July 2010) Specific In Vitro Toxicity of Crude and Refined Petroleum Products: II. Estrogen (a and B) and Androgen Receptor-Mediated Responses in Yeast Assays

International Journal of Nursing Education and Research – (Article; 2016) A Case Control Study on Exposure to Hair Dye and the Goiter Among Women Attending Thryo Care Clinic, Karur District, Tamilnadu

National Cancer InstituteHair Dyes and Cancer Risk

Natural Progesterone Advisory NetworkChemicals in our Environment that Mimic Estrogen

OpEdNewsSave the Males and Females from Estrogen Overload

PLOS – (Article; Aug. 2015) Does Hair Dye Use Increase the Risk of Breast Cancer? A Population-Based Case-Control Study of Finnish Women

Serenity OrganicsWhat are xenoestrogens?

Stronghair.orgOrganic Hair Dyes and Organic Hair Colors, Best Brands and Products

The European Journal of Public Health – (Abstract; March 2015) Association of Hair Dye Use with Circulating Levels of Sex Hormones in Premenopausal Japanese Women

The MAK Collection of Occupational Health and Safety – (Article; 2012) Resorcinol

US Food & Drug AdministrationHair Dyes

YaleNews – (Article; Jan. 2004) Hair Dye Use Increases Risk of Non-Hodgkins Lymphoma

YumYuckyMineral Oil: A Toxic Evil Lurking in Your Beauty Products

 

Please let me know if you’re interesting in reading any full versions of the abstracts.

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

 

 

Feel Good Fridays

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It’s FRIDAY!

Today’s quote was inspired by what happened to me this morning…Catherine Gilbert Murdock once wrote,

“When you don’t talk, there’s a lot of stuff that ends up not getting said.”

This morning I was having my blood drawn for lab work.  The nurse and I were talking about…I don’t remember what…oh, I had told her I recently had a CT scan and she asked what for.  When I said, “Endometriosis,” she perked right up and started asking all kinds of questions, “Do you still have it?  Where you able to get pregnant?  Are you still in pain?”  It turned out that about 30 years ago, she learned she had Endometriosis while living in the Phillipines, suffered the usual terrible symptoms, missed days off of school, etc.   Her physician put her on a medication, which relieved her symptoms and took away her migraines.  AND she also immediately was able to become pregnant.  She’s one of the lucky ones whose symptoms subsided after having children.

But, if she and I hadn’t talked, I never would have learned about a different medication (which I’ll be researching), we never would have bonded over our common illness, and never would have shared stories.

It was awesome.

Never be afraid to talk about it (whatever it may be). Ever.  Think of all the opportunities you’ll be missing out on if you don’t.

 

Endometriosis & Wine

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So, we’ve all heard that a glass of wine can be good for you.  Healthy, actually.  Then we’ve all heard that it can be harmful.  Throw in the mix that some of us suffer from Endometriosis…and that many women try to cut alcohol out of their lifestyle to prevent flare-ups and symptoms.  Alcohol is not only harmful to our bodies and livers, but contains a lot of sugar, as well as wreaks havoc on our system.  But I like me some vino!

Cutting out alcohol all together is likely your safest bet if you’re wanting to live cleaner and healthier.  The liver filters out toxins, as well as estrogen, from the body.  As you may have read elsewhere, Endometriosis is an estrogen-fed and reliant disease.  If our livers cannot properly filter out estrogen, we are simply empowering our illness.  Alcohol is also high in sugar …and we’ve previously discussed how sugar may increase your Endometriosis pain and flare-ups (read more here) .  Studies have shown that alcohol may also increase estrogen levels due to phytoestrogens in alcohol…plant estrogens that  mimic human estrogen (…wait…I didn’t know that. Crap.)

But, if you’re like me and you don’t want to cut it out, what can you do?  What further harm are you causing? I like drinking wine, but how does it effect Endometriosis?  Is it harmful?  Helpful?  What’s the difference between red and white wine? Seeing as I enjoy a glass of red or white (or two) with dinner or before bed, I got curious…as did a gal in our Endo Support Group.  So, the research begins!

The American Heart Association recommends that if you must drink alcohol, women should limit themselves to one glass a day…that’s a 5-ounce glass of wine .  Moderation, people (yeah, yeah, practice what I preach).

Wine snobs will tell you that red wine boasts more minerals and antioxidants than white.  A 5-ounce glass of red wine has 0.9g of sugar (compared to 1.4g in white wine), as well as more iron, magnesium, phosphorus, potassium, choline, lutein, and zeaxanthin than white wine.  And whenever you hear about a study of the health benefits of wine, it’s regarding red wine; not white.  Prevention Magazine put out a fantastic graphic that shows the differences.

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Let’s pretend that we’re not swayed from the phtyoestrogens, and we’ll continue drinking.  Wine is rich in flavonoids, which have antioxidant and anti-inflammatory properties.  Okay, that’s a bonus.  Most wine is also preserved by using sulphites (as is most of our food products)…which many women say increases their Endometriosis pain and flare-ups.  That’s not good.  Wine has resveratrol, a phytoestrogen from the skin of the grapes, that has anti-inflammatory and antiangiogenic (inhibits the growth of new blood cells) properties.  It may  also act as a natural aromatase inhibitor.  Aromatase is one of the body’s ways of producing estrogen, and if these levels are lowered, it may help with Endo growth and symptoms.  Could be good.  (Curious?  Read the “SCIENCE” section below).

Let’s talk more about resveratrol.  It’s found in red-skinned fruit, like red grapes or cranberries.  It’s also in blueberries, pistachios, and peanuts.  Red wine has more in it than white wine.  Resveratrol has been found to reduce inflammation and lessen Endo lesions, as well as adhesions…but nobody knows the exact dosage people should take to experience benefits.  On average, red wine can contain approximately 12.60 mg of resveratrol per liter.  Some authors suggest you’d need to drink 3-40 liters of wine per day to reap those benefits.

Let’s put this in terms I understand : a typical bottle of wine is 750 ml.  There are approximately 148 ml in 5 ounces, which is the recommended size of a glass of wine.  If I had to drink 3 liters of wine per day to get the supposed health benefits of resveratrol, doing the math (thank you Google!) that’s about 20 glasses of wine…per day.  Yeah, no.

20wine

Okay, scratching resveratrol off as a selling-point purely for drinking red wine.  I tried.  I really did…BUT…do scroll down and read about the studies between resveratrol and Endometriosis, it was fascinating!

SCIENCE!

The only study I was able to find that studied the effects of resveratrol on humans was published in 2012.  It’s goal was to see if resveratrol was an effective aromatase inhibitor…patients had been surgically diagnosed with Endometriosis, and all were on oral contraceptives.  They were prescribed their usual birth control pill, but were also given 30 mg of resveratrol per day.  At the end of two months, many women stated they had “a significant reduction” in their pain, some had a complete resolution of pain.  The authors of the study feel that the use of oral contraceptives and natural aromatase inhibitors may be an effective treatment of Endo pain.  Of course, further studies are needed, as well as clinical trials.

Three separate studies in 2013 found that mice which were surgically implanted with Endometriosis, then treated with resveratrol, had less Endometriosis lesions and growth than mice that were not treated.  These results may be because of the anti-inflammatory and antiangiogenic properties.  These studies each stressed that animal models may react differently than human models and further studies are required; however, it may prove to be a “promising candidate” and “will assist the development of novel natural treatments” for Endometriosis.  Dosage amounts also need to be further studied.

Another 2013 study found that resveratrol may make Endometriomas better because of its inflammation suppression.  Two similar studies were conducted in 2014 and also found a reduction in the amount and size of Endometriosis lesions.  These studies state that further studies are required, especially to determine appropriate dosing.

A 2014 study focused on resveratrol and adhesion prevention.  It found that rats that were given resveratrol both before and after abdominal surgery had fewer adhesions present than rats that were not given anything prior or post-op.  It suggests that resveratrol might be a pre- and post-op strategy in the prevention of development post-operative adhesions.

Another study conducted in 2014 found that “high doses” of resveratrol had the potential to benefit Endometriosis treatment.  I don’t think a glass of red wine a day will get us to those “high dose” levels…

In 2015, another study was conducted on rats implanted with Endometriosis, this time comparing resveratrol to three control groups : one group was given Leuprolide Acetate (Lupron Depot), a second group was given resveratrol AND Leuprolide Acetate, and the third group was given just resveratrol.  It found that the rats that were given resveratrol and the rats that were given Leurpolide Acetate both had a reduction in lesions; however, the group that was given the combination of both showed a reduction in anti-inflammatory and antigiogenic properties.  It cautions the use of resveratrol with other medications as it may lower efficacy.

A 2015 study suggests that women with Endometriosis may want to consider resveratrol in their diet, as well as Omega 3s, n-acetylcysteine supplements (which may reduce endometriomas), Vitamin D, fruits, veggies, and organic whole grains.

A 2016 study about angiogenesis and Endometriosis states, “currently, it is not a question whether angiogenesis is involved, but how it is involved. So far, the knowledge of how endometriotic lesions acquire angiogenic ability remains unknown.”  If resveratrol can prevent Endo from forming or growing, holy hell, that’s awesome.  Let’s hope research continues.

MY TWO CENTS

After reading about all of this, I’d like to reaffirm my desire to refrain from hard liquor, cut back on my beer intake, and just settle on a glass of red wine.  Yes, just ONE glass.  And white wine?  Seeing as it doesn’t appear to have too much resveratrol, I should hurry up and finish the bottle in the fridge so I can buy more red wine… 😉 Or not. Depends on my tastes for the day and what I’m eating for dinner, I suppose.

Also, prior to today I’d never heard of resveratrol, nor it’s properties.  So, I’d like to thank the curious minds for pointing me in a direction I’d never heard of.  Here’s to hoping that science and medicine can further research the benefits and risks of resveratrol usage, as well as appropriate dosage, so women with Endometriosis may one day consider taking it as an alternative treatment.  If you’d like to talk to your doctor about resveratrol, please do so.  But don’t run out and start anything without first consulting with your physician.  We still don’t know the side effects of long-term use or drug interactions.

An article put out by Harvard states that high doses of resveratrol have been shown to increase estrogen, but others have shown it reduces estrogen.  It’s still a large unknown…Harvard’s article suggests that if you do want to partake of resveratrol, get it from your food and wine, not from supplements.

A subsequent Harvard article two years later stated resveratrol in your usual diet didn’t do much difference as far as health benefits go.  It quotes Dr. David Sinclair as saying, “You would need to drink a hundred to a thousand glasses of red wine to equal the doses that improve health in mice.”  Granted, this article is leaning more toward overall health, and not Endometriosis.  It does discuss how best to purchase supplements, though, if you were interested.

I think I’ll still enjoy partaking of minuscule amounts of resveratrol in my red wine, berries, and pistachios.  No need to run out and buy supplements, or praise an unproven miracle…but, I will keep an eye out for ongoing studies of resveratrol and Endometriosis.  It’s an interesting development.

Will I stop drinking alcohol? No.  Fewer things are more relaxing than a glass of wine after work or an ice cold beer on a hot summer day.  But I will think twice before indulging in a second or third glass now knowing that it may increase my estrogen production.  Sneaky, sneaky phytoestrogens.  Is wine more helpful than harmful for my Endometriosis? It’s likely more harmful with the sugar and phytoestrogens.  The cons outweigh the benefits, but seeing as I don’t have flare-ups after moderate use, I don’t want to stop.  Excessive use? Oh yeah, that’ll be nipped in the bud.

What are your thoughts?  And cheers!

 

Resources:

Alcohol Health & Research World – (Article; 1998) Alcoholic Beverages as a Source of Estrogens

EHealth Forum Are you Making Your Endometriosis Worse, Every Day, Without Even Realising It?

Endometriosis SupportDrinking Red Wine May Slow Endometriosis

Endometriosis UpdateThat’s an Awful Lot of Red Wine

European Journal of Obstetrics & Gynecology and Reproductive Biology – (Abstract; Jan. 2015)

FloLivingHow to Stop Alcohol from Messing with your Hormones

Gynecological Endocrinology – (Abstract; Nov. 2014) A Potential Novel Treatment Strategy : Inhibition of Angiogenesis and Inflammation 

Harvard Health Publications – (Article; May 2014) Diet Rich in Resveratrol Offers No Health Boost

Harvard Health Publications – (Article; Feb. 2012) Resveratrol – the Hype Continues

Hormones MatterResveratrol from Red Grapes Blocks Endometriosis

Human Fertility – (Abstract; Sept. 2012) Resveratrol Inhibits Postoperative Adhesion Formation in a Rat Uterine Horn Adhesion Model

Human Reproduction (Abstract; 2013) Natural Therapies Assessment for the Treatment of Endometriosis

Human Reproduction – (Abstract; Jan. 2013) Resveratrol is a Potent Inhibitor of Vascularization and Cell Proliferation in Experimental Endometriosis

International Journal of Women’s Health – (Article; Oct. 2012) Advantages of the Association of Resveratrol with Oral Contraceptives for Management of Endometriosis-Related Pain

Life ExtensionEndometriosis : Targeted Natural Interventions

Live StrongHow Much Red Wine Do You Need to Drink for Health Benefits?

Live StrongHow Much Red Wine Do You Need to Get Enough Resveratrol?

Medical News TodayWine : Health Benefits and Health Risks

Pathology Discovery – (Article; Jan. 2016) Role of Angiogenesis in Endometriosis

Peace with EndoAlcohol and Endometriosis

Prevention MagazineRed Wine vs. White Wine

Reproductive Sciences – (Abstract; Oct. 2013) Regression of Endometrial Implants by Resveratrol in an Experimentally Induced Endometriosis Model in Rats

Reproductive Sciences – (Abstract; Nov. 2014) Resveratrol and Endometrium : A Closer Look at an Active Ingredient of Red Wine Using In Vivo and In Vitro Models

SciFlo – (Article; Dec. 2015) Nutritional Aspects Related to Endometriosis

The Journal of Cancer Research and Therapeutics – (Abstract; July 2014) Resveratrol Successfully Treats Experimental Endometriosis Through Modulation of Oxidative Stress and Lipid Peroxidation

The Journal of Obstetrics and Gynaecology Research – (Article; Dec. 2013) Resveratrol Suppresses Inflammatory Responses in Edometrial Stromal Cells Derived from Endometriosis : A Possible Role of the Sirtuin 1 Pathway

The World’s Healthiest FoodsFlavonoids

Vital Health InstituteWhat does Aromatase have to do with My Endometriosis?

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

 

My “After Sex” Routine.

Sharing this in case it helps any of you EndoSisters!

EndoGab

Today I’m writing to share my “After Sex” routine that I have found to be extremely helpful with reducing pain. Before I go into detail I just wanted to take a minute to let you all know that posts here may be infrequent due to not feeling the need to post articles that I feel are just wasting space, in other words I write only when I feel that I have valuable information to share. I started this site because I realized that there really weren’t any good places for women to go for sex and relationship advice while living with a chronic illness/pain. As we all know, the advice that’s given to a woman without these conditions often differs from the advice needed for those of us who do have painful pelvic conditions. My goal is to create a space for women with Endometriosis, Adenomyosis, Pelvic Floor Dysfunction, and…

View original post 762 more words

Feel Good Friday

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We made it through another week!

Today’s quote is from Mary Ann Radmacher:

“Courage doesn’t always roar, sometimes it’s the quiet voice at the end of the day whispering ‘I will try again tomorrow.’”

At our support group meeting this week, we talked a lot about courage.  Not only the courage to come to the group, and to find others going through the same thing, but the courage to challenge a doctor’s opinion, to seek another, to refuse medication (or even to accept it).  The courage to move forward with a surgery or find alternative treatments.  And the courage to move forward each day.

Tammy, this one’s for you.  And thank you for being so amazing.

 

 

Iceland : Endometriosis Care & Support

It’s that time, again!  Time to pick a random country and analyze how they deal with Endometriosis.  Today we’ve chosen Iceland (as of today, we’ve had 13 views from Iceland).

Iceland is a little bit smaller than Cuba (40,000 sq. miles) and sports roughly 329,000 people and has a 5% unemployment rate.  I also learned that Iceland doesn’t charge for upper secondary education (think of this as a junior college with most attendees between 16-20 years old), nor does it charge tuition for university attendance!  That’s just so awesome!

Healthcare in Iceland is a universal healthcare system which all residents support through their taxes.  All legal residents are covered and most visits are free (hospital and outpatient visits), although General Practitioners and Specialists charge fees.  Patients don’t need a referral from their GP to go to a specialist, either.  They can just…go!

The Icelandic Endometriosis Society was founded in 2006 and has been busy with events to raise awareness and show support for EndoSisters in their country and recently celebrated their 10-year anniversary!

Iceland has an incredibly detailed gene pool database, paired with medical records and medical histories.  In 1998, amid public outcry, Iceland’s government decided to sell that gene database to a company known as Decode Genetics.  As a result, Iceland has been involved in numerous Endometriosis research studies over the past few decades:

2001: a study ruling out at the GALT gene was related to Endometriosis development

2002: a team found that women were five times more likely to develop Endometriosis if their sister had it, and 50% more likely if their cousin had it.  With this data, the team planned on looking into DNA tests to help identify at-risk women, develop non-invasive diagnostic tests, and to try to discovery new treatments.

2005: a team studied the numbers of p53 (aka tumor protein; a gene study) in Endometriosis among American and Icelandic women.

2010: a study looked at the detailed medical histories of Icelandic women from 1981 to 2000 across the nation and discussed the annual incidence rate of Endometriosis.

2012: a Congress was held in Iceland involving many Nordic countries to discuss Endometriosis and support.

In late May, I emailed nearly a dozen facilities in Iceland to find out more about how they deal with Endometriosis and heard back from one : Dr. Reynir Tómas Geirsson, the Professor Emeritus of the University Dept. of Obstetrics and Gynecology, Women´s Clinic of Landspitali University Hospital/University of Iceland in Reykjavik, Iceland.  If you live in Iceland and have additional questions, Dr. Geirsson has shared his email address, and would like me to share it with you.  You may email him at reynirg@landspitali.is.  He was gracious enough to answer my questions:

* Do have you many Endo patients that treat at your facility?   Yes, about 100 per year have operations (the population of Iceland is 330.000) and probably 2-300 outpatient consultations which does apply to those treated in the hospital here who are those who are symptomatic and with more severe disease. There are women who have operations in 3 other facilities, but they are fewer. Women will also attend private gynecologist practices, but I do not have figures on those. Many patients will also be seen privately. This includes the one ART-IVF facility which we have here in this country.

* What is the standard way(s) of treatment?  I know here in the United States, excision surgery is considered the golden standard, followed by hormonal treatments (birth control pills, GnRH agonist, etc.).   It is the same as in the USA.

* Many women in the states go 8-10 years without a diagnosis; is it similar in Iceland?  I know our healthcare varies greatly (socialized versus private), and I’m curious if Iceland’s healthcare system providers for a faster diagnostic rate. No, we have looked and it was 7-8 years probably at the same time as the US assessment was made (10-20 years ago), however, I would like to think that awareness efforts in recent 10 years from us at this hospital and through the Icelandic Endometriosis Society formed in 2006 (www.endo.is) we have gone some way towards reducing this delay. The delay is now probably largely within general practice, but it would be less among gynecologists, either hospital-based or in private practice.

* Which theory do you believe to be the cause of Endometriosis?  Retrograde menstruation (Sampson theory) is an essential pre-requisite, but there is no doubt a genetic susceptibility of varying penetrance (this is the case also with many other common diseases/syndromes) which is probably modifiable by environmental factors (food, obesity, smoking and alcohol, use of hormones, early vs. late childbearing, use of the contraceptive pill or intrauterine contraception are potential factors). There is a possibility that some cases are endometriosis may arise in some cases from aberrant migration/activation of stem cells). Ovarian and other pelvic endometriosis also behave somewhat differently with regard to presentation/timing in the woman´s life-course.

* Are there any Endometriosis excision specialists in Iceland? Yes, one or perhaps two now (one is robot-surgeon).

* Do you have any words of advice for any Icelandic women who think they may suffer from Endometriosis?  I’d also like to point any women to your facility, if I may. Yes, and I have expressed this often publicly. It is to go to a specialist who knows specifically about endometriosis and only to be operated upon where there is someone who has sub-specialist knowledge on the disease. In practice this means to come to the university hospital in Reykjavik for anything more than a diagnostic laparoscopy. Please note, however, that we like to channel information through our own patient organization, see www.endo.is.

* Is there anything myself or our readers can do to help you, the Medical Community, with the fight against Endometriosis? I am not sure that so much is presently needed. Icelandic women are quite computer-literate and will be able to google your site for general information.

I would like to thank Dr. Geirsson for taking time out of his busy schedule to lend a helping hand to our little blog.  I’ve learned so much reading about Iceland and have a friend who has had the pleasure of traveling there a few times.  It looks to be such a beautiful country steeped in culture and history.

It appears that Iceland is pretty much on par with the US when it comes to treatment and awareness, which is fantastic!  And I’m glad that the gene pool database may be used to help further research efforts with our illness.  If you live in Iceland and would like to share your thoughts on treatment or your favorite specialist, please feel free to leave a comment below!  We’d love to hear from you!

Resources:

American Journal of Epidemiology – (Article, July 2010) Pelvic Endometriosis Diagnosed in an Entire Nation Over 20 Years

Bioinformatics.comPrimary Information of p53 Gene

Decode GeneticsGenetic Link to Endometriosis – Unique Icelandic Study Provides Further Proof

Endometriosis Association of Iceland

Endometriosise.no – Convention in Iceland September 15th

Fertility & Sterility – (Article, Nov. 2001) Endometriosis is Not Associated with or Linked to the GALT Gene

Fertility & Sterility – (Article, Nov. 2005) Quantitative DNA Perturbations of p53 in Endometriosis: Analysis of American and Icelandic Cases

Human Reproduction – (Article, 2002) Genetic Factors Contribute to the Risk of Developing Endometriosis

Iceland.is

InternationsHealthcare, Education and Safety in Iceland

Lonely Planet

Michael Specter – (Blog, Jan. 1999) Decoding Iceland

The New York Times – (Article, Feb. 1999) A Country Unveils Its Gene Pool and Debate Flares

The Reykjavik GrapevineEndometriosis

The Reykjavik GrapevineIceland’s Healthcare System: How Does It Work?

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Feel Good Friday

 

We made it to another Friday!  Today’s quote is from Vironka Tugaleva.  And it’s perfect.

“Yes, it’s okay to be afraid. It’s okay to hesitate before plunging from your comfort zone.

It’s okay to have scars, pimples, insecurities, moles, cellulite, tremors, debts, redness, regrets, loneliness and uncertainty.

It’s okay to have no idea what you’re doing.

It’s okay to struggle with some things, while enjoying others. It’s okay to find joy in the beauty in life, even after a great loss. It’s okay to change. It’s okay to move on. And it’s okay to fear changing and moving on.

Wherever you are, and whatever you are experiencing, is okay. You didn’t invent the universe and you didn’t invent the human condition.

You don’t need permission to live whatever you’re living, even if it looks and feels different from anyone else’s life around you. And it’s okay to feel like you need that permission anyway.”

“E” is for “Endometriosis”

Endometriosis from a husband’s perspective. This was a truly wonderful read.

Adoption Expectant -- Hubby Edition

On Wednesday I sat in a waiting room all day while my wife underwent her 3rd abdominal surgery. And I sat there the whole 3.5 hours, never knowing what was going to happen, how bad things were, if we were looking at yet another surgery.

See, we’re all raised to believe that women’s periods are supposed to be painful. We’re raised to believe that men should be fearful of the words “period.” That we should be awkward in certain aisles. That men are expected to want to spend our time getting into women’s pants, but when the actual words like “ovaries” or “fallopian” or “uterus” are used, we should close our eyes, cover our ears and hum. That acknowleding menstruation existing should only be in our complaints about their “attitude.”  And if a woman is anything but smiling, it’s a certain time in a month (never mind that some get…

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