Trump’s Environmental Policies May Hurt Women With Adenomyosis

I posted this comment today on my facebook page. I share it in an attempt to get this message to as many people out there as I can reach. This is vitally important!! Please share:

I have to speak up today. I will be doing this on all of my pages as this is an issue near and dear to my heart. I do not agree with Trump’s decision to pull out of the Paris Climate Accord. Although there are many reasons to be upset by this decision by Trump, my personal concerns have to do with adenomyosis and endometriosis. As most of you know, I have written two books on adenomyosis. I have done a ton of research (numerous scientific studies through the NIH) and have learned that xenoestrogens (man-made chemicals) in the environment have been implicated in many reproductive disorders. This is not speculation – this has been shown through well-controlled scientific studies. There is great concern that these xenoestrogens, which raise estrogen levels dramatically, are one of the possible players in adenomyosis and endometriosis. Trump’s decision today will more than likely lead to more and worsening cases of these two disorders. Chemicals in the environment are already linked to increases in cancer – ovarian, breast, and endometrial are just a few. I was so disturbed by his actions over the past couple of days that I posted my concerns on his twitter account. Within an hour of posting, my comments could not be found. I posted again, and again they could not be found an hour later. I have since learned that people are being blocked from his twitter account if they post something that disagrees with his views. I also wrote a letter to my Republican congresswoman, Barbara Comstock, detailing my concerns over this administration’s environmental policies and explained in detail how these decisions could adversely affect women with adenomyosis – hoping that since she was a woman, she might be more empathetic. Her response did not address either of these two abnormalities. So, I am posting this here and on all my pages to let women know that this administration does not seem to care one bit about women who are suffering from adenomyosis and endometriosis. They also don’t seem to care at all that there is science backing these concerns. They don’t want to hear it. I tried my best to get my point across, but they prefer to turn a blind eye to it. I am incredibly disappointed and upset that this administration has made it so much harder for women who suffer from adenomyosis and endometriosis by promoting policies that will increase xenoestrogen levels in the environment which may lead to an increased incidence of adenomyosis/endometriosis and worsening symptoms of those already suffering from these horrible disorders..

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Adenomyosis and Estrogen Dominance – Is There a Link?

Today I would like to delve into the links between estrogen dominance and adenomyosis. I have written previous posts on the subject, but in the past couple of days, I have seen things posted on a site regarding this subject that are misleading. I find this tremendously concerning because it is imperative that the correct information be available to all women who suffer from adenomyosis. Misleading or inaccurate information can do tremendous damage to the cause of education of the disorder.

The following is a portion of a discussion that I had with a member of the group (names excluded):

1.”*** posted a comment in a response to a post that estrogen dominance caused the adenomyosis. I stated it was not; could bring out symptoms for sure, no disagreement there.”

2. “I have yet to see any information which would indicate that estrogen dominance causes the endometrium to invade the myometrium. If it exists, I am open to reading it.”

3. “But linking an Amazon page doesn’t actually benefit the conversation that was taking place…” (this was the Amazon link to my book which discusses estrogen dominance in women with adenomyosis at length).

4. “Our admin, *** explained that the apparent disagreement was really a case of semantics: what causes adeno to occur vs. what makes adeno symptoms present themselves.

5. A different person told me that estrogen dominance and it’s role in adenomyosis was “controversial”.

I am going to address these statements one by one.

1. Is estrogen dominance the cause of adenomyosis?The short answer is that we don’t know. The statement that it was not the cause is false. It very well may be the cause, but enough research hasn’t been done yet to actually prove it. However, many studies have been done that point to the role of estrogen dominance in reproductive disorders and endometriosis, and many studies have been done on xenoestrogens and how they adversely impact the reproductive system. Margaret Schlumpf et al. found that the xenoestrogen 4-MBC applied to rat skin doubled the rate of growth in uterine tissue before puberty. Tyrone Hayes from the University of California at Berkeley found that with increasing exposure to atrazine (a xenoestrogen), some frogs began to show both male and female sex organs. Toxicologist Michael Fry found female cells in the reproductive tracts in male gulls after they were injected with DDT, DDE and methoxychlor (all xenoestrogens). These are just some examples. But the most relevant and damning study was done by Upson et al. in 2013. β-HCH, a xenoestrogen, was studied, and the women in the study with the highest levels of β-HCH in their blood serum were 30 to 70 percent more likely to have endometriosis than the women with the lowest levels of this chemical in their blood. This evidence should lead you to the logical conclusion that these dangerous chemicals may in some way be involved in adenomyosis. Also, please remember that very little is known about adenomyosis. If we only accept what is scientifically proven about adenomyosis, we pretty much wouldn’t have anything to help with the symptoms right now. In order to help women who are suffering now, it is advisable to come to some logical conclusion based on the very limited information that we do have. As far as the statement “could bring out symptoms for sure” while stating the estrogen dominance is not the cause, I would just like to see some studies that show that viewpoint (there are none).
2. This issue is addressed in #1. I did send her a list of several studies and urged her to research this topic on PubMed through the NIH. I didn’t receive a response of any kind.
3. If the topic was on estrogen dominance, the link to my book is quite relevant to the topic as I have written a chapter on it which includes research of actual scientific studies.
4. “What causes adeno to occur vs. what makes adeno symptoms present themselves” – this really makes no sense. Adenomyosis is a collection of symptoms. If the symptoms are there, then adeno is occurring. Maybe she meant what causes adeno to occur vs. EXACERBATION of the symptoms?? That would make some sense. But as you can see, her wording is quite ambiguous and confusing.

Here is what we know for sure through scientific studies:

1. Both adenomyosis and endometriosis are both estrogen-dependent disorders. This is a known fact. These two disorders cannot progress unless estrogen is present.
2. Xenoestrogens are dangerous man-made chemicals that are known to be endocrine disruptors. What does that mean? Basically, it means that these chemicals mess with your hormones. The following chemicals are just a few of the known endocrine disruptors: 4-MBC (banned in the U.S. and Japan), alkyl phenols (restricted in Europe), atrazine, BPA (debates persist on safety – banned from use in baby bottles in Canada and Europe), BHA, DDT (banned), dieldrin (banned), endosulfan (use currently being discontinued), hepatachlor (restricted in the U.S.), methoxychlor (banned), parabens, PBBs, PCBs,  and phthalates (restricted use in children’s toys in the U.S. and Europe). As you can see, the regulatory authorities are very much aware of the dangers of these chemicals as many of them are restricted or banned. It is important to look at these chemicals as many of them do not break down easily and are still prevalent in the environment even though their use has been restricted/banned. So, the point is that the estrogen-like activity is well-known and very well-documented. We know these chemicals to be very dangerous and have estrogen-like activity in the human body.
3. Estrogen dominance does appear to occur in a lot of women with adenomyosis and endometriosis. Estrogen dominance DOES NOT mean that you just have a high estrogen level. I have seen quite a few women say that they are not estrogen dominant when talking about adenomyosis, and they seem to immediately come to the conclusion that since they are not estrogen dominant, it can’t be the cause of adenomyosis. Two things here: First of all, to be truly estrogen dominant, you must have a special test run – not one that is readily available at your OB/Gyn office. A ratio of Pg/E2 must be calculated (progesterone to estrogen ratio). It is possible to have estrogen and progesterone levels that fall into the normal range but have an abnormal Pg/E2 ratio. My levels were a perfect example of this. I always had normal estrogen levels and normal progesterone levels each time my OB/Gyn tested them. When I finally sent out my saliva to have the ratio calculated, it came back abnormal and indicated estrogen dominance. My estradiol was 2.3 (normal is 1.3-3.3), my progesterone was 154 (normal is 75-270). My Pg/E2 ratio was 67 (normal is 100-500). As you can see, the ratio was abnormal. Anything under 100 indicates estrogen dominance. The second thing – please remember that medicine is not black and white. When these studies show links such as estrogen dominance with adenomyosis, that does not mean that all women will be estrogen dominant. It only means that there is a significant link between the two. Think of it this way – there is a very clear link between smoking and lung cancer. Does that mean that every single person who smokes will get definitely get lung cancer? Of course not! There are many other factors at play with genetics being one of the big ones. Also this disorder could very well be multifactorial. There are many gray areas in medicine – it is not black and white.

In conclusion, it is imperative that correct information is given to the women who suffer from this disorder. I urge everyone to do their own research and read up on the actual studies. If someone makes a claim but can’t back it up, question it!! In particular, I do not like the term “controversial” when discussing estrogen dominance and adenomyosis. As you can see from the above information, the role of xenoestrogens and their effect on the reproductive system is well-documented and known. It is not controversial. Presently, physicians are prescribing progesterone for women with adenomyosis and other disorders such as fibroids because they are increasingly becoming aware that estrogen dominance is playing a role in these disorders. “Controversial” is very misleading and highly inaccurate.

Bulayeva and Watson stated their concerns over xenoestrogens in a study done n 2004. “These very low effective doses for xenoestrogens demonstrate that many environmental contamination levels previously thought to be subtoxic may very well exert significant signal- and endocrine-disruptive effects, discernible only when the appropriate mechanism is assayed.”

 

 

Bulayeva and Watson (2004). Xenoestrogen-induced ERK-1 and ERK-2 activation via multiple membrane-initiated signaling pathways. Environmental Health Perspectives, 112(15), 1481-87. Retrieved from http://www.bvsde.paho.org/bvsacd/ehp/v112-15/p1481.pdf

Fry, M. (1995). Reproductive effects in birds exposed to pesticides and industrial chemicals. Environmental Health Perspectives, 103 (Suppl 7), 165-171. Retrieved from http://www.ncbi.nlm.nih.gov/PMC/articles/PMC1518881/pdf/envhper00367-0160.pdf

Hayes, T. et al. (2003). Atrazine-induced hermaphoroditism at 0.1 ppb in American leopard frogs (Ranna pipiens): Laboratory and field evidence. Environmental Health Perspecives, 111(4), 568-575. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/ PMC1241446

Schlumpf et al. (2008). Developmental toxicity of UV filters and environmental exposure: A review. International Journal of Andrology, 31(2), 144-51. doi: 10.1111/j.1365-2605.2007.00856.x

Upson et al. (2013). Organochlorine pesticides and risk of endometriosis: Finding from a population-based case-control study. Environmental Health Perspectives, 121, 11-12. doi: 10.1289/ehp1306648

 

 

 

 

 

Adenomyosis, Endometriosis and Trump’s Policies – Disaster in the Making

Since January, I have become increasingly disturbed by Donald Trump’s policies and how they will adversely affect women who suffer from adenomyosis and endometriosis. In recent years, we have made some great progress regarding better research and treatment regarding these female disorders of the reproductive tract, but since Trump took office, he and his administration have taken actions that will significantly impede this progress.

Here’s some of the proposed budget changes:

1. The Environmental Protection Agency (EPA) will be cut by an astonishing 31 percent and will eliminate 3200 jobs which is about 20 percent of the department. The proposal eliminates all funding for the enactment of the Clean Power Plan.
2. The NIH spending will be cut 18 percent (5.8 billion). This will significantly damage our chances of more research for adenomyosis/endometriosis.
3. The Department of Health and Human Services budget will be cut by 16 percent.
4. Spending will increase for programs where oil and gas are drilled on public lands (see below for reasons why this is important).
5. This budget proposal will cut or eliminate programs that support research of clean energy technology. In addition $120 million will be spent to restart the licensing of the Yucca Mountain nuclear waste storage facility in Nevada. This program had been stopped under the Obama administration (see below for more information).

Why is this all important when it comes to adenomyosis/endometriosis? Studies have shown that man-made chemicals called xenoestrogens play an important role in the development of these disorders. Where do xenoestrogens come from specifically? Here is a short list of some of the most important sources of these dangerous chemicals:

1. Petroleum products
2. Herbicides/pesticides
3. Adhesives
4. Lubricants
5. Fire retardant materials
6. Fuels
7. Oil field chemicals
8. Epoxy and plastic resins
9. Insecticides
10. Food coloring
11. Coolant fluids
12. Plasticizers

In short, many of the chemicals in our environment today have been labeled as xenoestrogens and have been linked to the development of these reproductive disorders. So, the defunding of the EPA in particular is a huge blow to those of us who fight for women with these devastating and incredibly painful disorders.

The following research studies solidify the concerns that I have regarding the defunding of the EPA:

1. Bulayeva and Watson, 2004 – “These very low effective doses for xenoestrogens demonstrate that many environmental contamination levels previously thought to be subtoxic may very well exert significant signal- and endocrine-disruptive effects…”
2. Atrazine is a herbicide and xenoestrogen. Tyrone B. Hayes from the University of California at Berkley reported that with increasing exposure to atrazine, frogs began to show both male and female sex organs.
3. DDT, an insecticide and xenoestrogen, is currently banned in the U.S.; however, it is known to persist in the environment. Michael Fry, a toxicologist at the University of California at Davis found female cells in the reproductive tracts in male gulls after they were injected with DDT, DDE, and methoxyclor (all xenoestrogens).
4. Lindane and Mirex are both organochlorine pesticides (OCPs) and xenoestrogens. B-HCH is a by-product of lindane, and this chemical has been linked to an increased risk of endometriosis. Upson et al. report that women with the highest levels of B-HCH in his study were 30 to 70 percent more likely to have endometriosis than women with the lowest levels of this chemical in their blood serum.
5. Phthalates are substances that are added to plastics to increase flexibility. A 2001 study by Moore et al. showed that the phthalate DEHP affects the development of the male reproductive system in rats and caused severe reproductive toxicity in five out of eight litters.

I became so concerned about Trump’s policies that I decided to write to my Congresswoman, Barbara Comstock in January. She is a Republican, so I wasn’t sure what kind of response I would get from her. I specifically explained my concerns regarding the defunding of the EPA and how this will adversely impact our fight against adenomyosis and endometriosis. This is the response that I received:

Dear Ms. Yeager,           Thank you for contacting me about the Trump administration and their actions regarding federal agencies.  I appreciate hearing from you on this important issue. I understand there is disagreement with certain actions taken by the executive branch.  It is important to bear in mind the nature of our system of government and where authority is vested.  The further investiture of power in the presidency in recent years is concerning and part of the reason why I have supported efforts to rein in executive agencies and restore greater lawmaking authority to the legislative branch as prescribed and articulated in our Constitution.  Members on both sides of the aisle have increasingly recognized the issue of overreach and under appropriate circumstances the need to employ checks and balances accordingly such as legislatively limiting discretion given to the chief executive over federal bureaucracy. At the same time, we must also consider the legality of actions taken and not necessarily whether or not they are objectionable when pursuing stronger responses and/or sanctions.  In addition, I respect the authority granted to the different relevant bodies including the Judiciary Committee. Please be assured I will keep your thoughts in mind in my service to the 10th District. Thank you again for contacting me.  It is a privilege to serve you in the Tenth District.  I may also be contacted at my Sterling office at 703-404-6903, or my Washington, D.C. office at 202-225-5136.  By visiting http://comstock.house.gov, you can sign up to receive my email newsletters and follow my efforts to serve you.  You can also follow me on Facebook and Twitter for real-time updates on my activities in Congress and in the District.  If I may ever be of service, please do not hesitate to contact me. Sincerely, Barbara Comstock Member of Congress

Huh?? Um, what is all that jabber about?? As you can see, there was absolutely no mention of either adenomyosis or endometriosis in that response. Did she even read my letter?? Probably not. This is probably some kind of automatic response or form letter. Clearly she didn’t address my issue at all. Since sending my letter, the situation has gotten even worse with the President not only defunding the EPA but also cutting NIH spending dramatically. We desperately need funding for the NIH so that more studies can be done on adenomyosis and endometriosis to find better treatment for all those poor women who are suffering from these disorders on a daily basis.

Representative Comstock, I voted for you in the last election. But you have lost my vote in the future. I am disgusted by the lack of attention that you have given to this incredibly important matter. These new Trump policies regarding the EPA and NIH will have dramatic and long-term damaging effects on so many people, especially those women who suffer from adenomyosis and endometriosis. If these policies are approved and go into effect, not only will research be slowed or even halted but it is also highly probable that the rates of these disorders will increase dramatically. I hope you can sleep at night knowing that you are putting millions of women in harm’s way by going forward with these damaging policies under the Trump administration.

My fellow endometriosis and adenomyosis sisters – keep on fighting. I will not stop, and nor should you. This blog post will also be sen t directly to Representative Barbara Comstock’s office. Please feel free to copy and send to your representative as well if you live in the United States 🙂

Looking for clean products that may help in your fight against adenomyosis? Check out these great products (click on images to purchase through Amazon):

Parabens & Endometriosis — Bloomin’ Uterus

Another excellent article from Bloomin’ Uterus. She mentions flaxseed also in this article and how she avoids it. I have always promoted the use of flax with endo and adeno as I had tremendous symptom relief during my struggle. However, as I recently discovered, there are some concerns with its use. After reading all the evidence, I still personally do promote the use of flax, and I will get into this in much more detail in a future blog. In the meantime, read up on parabens – it is really important to avoid the use of this type of xenoestrogen as much as possible! Thanks, Lisa, for another informative article!

What are Parabens? Parabens are chemicals used as preservatives in consumer products. Why are they Bad for Us? If you happen to suffer from Endometriosis, or any other estrogen-driven condition (like breast cancer), please be aware that parabens mimic estrogen. Just like soy. Just like flax. Parabens are an “endocrine disruptor,” which alters our body’s hormone […]

via Parabens & Endometriosis — Bloomin’ Uterus

Emotional Aspects

The physical toll of adenomyosis is very clear – severe pain, heavy bleeding, infertility, etc.  This is much easier to see than the emotional toll these women have to face on a daily basis.  The following are some of the issues I was faced with during my 17 year struggle:

1.  Co-workers and friends not supportive due to the fact that the doctors were unable to diagnose the condition.

2.  My own doctors telling me I needed counseling/antidepressants because they were not able to come up with an accurate diagnosis.  I was told that my condition was probably stress related.

3.  Having to struggle with severe abdominal pain and not having an accurate diagnosis – wondering all the time if I had something deadly (such as cancer) and the doctors were missing it.

4.  Being afraid to leave my house for fear that an attack would hit me at anytime.  Being afraid to not have access to a bathroom.

5.  Constantly trying to get people to understand that I was in severe pain.  I could not get them to understand the degree of pain that I was dealing with.

6.  Taking Midol or ibuprofen constantly even when I was feeling good, “just in case” an attack happened.

7.  Going through medical tests to have the doctors tell me that they found nothing – so I still didn’t have an answer to the cause of my pain.  Knowing that I was going home and nothing was going to change.

As you can see, all of this can severely impact the emotional health of those struggling with adenomyosis.

Since doctors cannot diagnose adenomyosis easily, some of them are likely to tell you that it is stress related and may be quick to try and prescribe an antidepressant.  My suggestion is to get a second opinion….or third or fourth!!

I remember watching Montel Williams one day discuss the problems when getting his correct diagnosis.  It took 9 doctors before finding out that he had multiple sclerosis!!  We now know through the show Mystery Diagnosis that a diagnosis by a doctor can be wrong.  Thank goodness for Discovery Fit and Health and this show for bringing this fact to the forefront!

As far as my experience, I was told that it was “all in my head”.  I was told that I needed to go to counseling for stress management.  I was given a slew of antidepressants over the 17 years that I struggled with this disorder.  Actually I probably did need the antidepressants for the stress I was going through in not getting an accurate diagnosis!!  Everyone who is involved with an individual who is sick and not getting properly diagnosed needs to remember this one vital piece of information:  the person going through it is suffering not only physically probably on a daily basis but also mentally.  Treating a real disorder such as adenomyosis as if it is “in their head” just compounds the mental suffering and leads that person deeper into depression!!

“When you hear hoofbeats, think of horses, not zebras”

This is a popular saying among physicians.  It means that when diagnosing someone, look for the expected and not for the unusual.  This may be true in most cases.  However, there are “zebras” out there!  If someone has been complaining about any kind of problem for an extended period of time and has been tested for the usual disorders with normal results, it is time to look for the zebra!  It certainly should not take 17 years (as in my case).  During my research, I have found that the average time to get a diagnosis of adenomyosis is 9 years.  In my opinion, this is completely unacceptable.  Under no circumstances should a woman have to undergo severe abdominal pain and very heavy bleeding for that period of time.  I’m asking for the medical profession to start looking for those “zebras” sooner than later.

Xenoestrogens

Xenoestrogens are synthetic (man made) estrogens that mimic the effects of estrogen found in the human body.  They disrupt hormonal activity and can be extremely dangerous.  These xenoestrogens can lead to the condition of estrogen dominance in which there is “unopposed” estrogen present in a woman’s body (see “Hormonal Imbalance?”).  This condition has been linked to adenomyosis.

Some examples of xenoestrogens include:

PCBs – banned from use in 1979

PBBs – can be found in plastics

Pthalates – provides durability and flexibility to plastics

Petrochemicals – byproducts of oil and gasoline

Organochlorides – dry cleaning products, chemicals used in the bleaching of paper

BPAs – used in the lining of food and beverage cans

DDT – pesticide banned from use in 1972; however still present in environment

Dioxins – released during pesticide manufacturing and combustion processes

Endosulfans – insecticide

Atrazines – herbicide

Bisphenol A – food preservative

Parabens – lotions

Ethinyl estradiol – component of birth control pills

In women with known or suspected adenomyosis, it is strongly suggested that exposure to these chemicals be reduced as much as possible.  Although it is impossible to completely get away from these chemicals, a few things can be done to reduce exposure such as:

1.  Do not store or heat your food in plastic containers.  Use glass whenever possible for food storage and heating.  Avoid drinking from plastic water bottles.  To drive this point home, let me tell you a true story.  I have worked in a medical lab for about 22 years as a lab technologist.  At the beginning of my career, I ran the acetylcholinesterase test.  Acetylcholinesterase is a very important enzyme in the body that plays a key role in the functioning of the nervous system.  The test that I ran was used to pick up possible neural tube defects in unborn children (spina bifida and anencephaly).  Sometimes the test worked fine, but at other times it did not.  After trying to figure out the problem and getting quite frustrated, we were finally able to identify the problem.  When we mixed the reagents in a plastic container, the acetylcholinesterase band did not show up on the gel and therefore the test failed; however, when we mixed the reagents in a glass container, the test worked just fine.  So, something in the plastic container was reacting with the acetylcholinesterase!  Kinda scary to think that a chemical in plastic can react with such an important enzyme vital to the nervous system!

2.  Buy fresh and organic food whenever possible.  Avoid as much processed food as you can.

3.  Buy hormone free meats.

4.  Avoid farm raised salmon because this can be a source of PCBs.  Buy wild salmon instead.

5.  Use natural/organic lotions or even make your own homemade lotions.  Avoid lotions that contain parabens. Try to use makeup that is paraben and phthalate-free.

6.  Use natural pesticides.  I use a 50/50 mix of vinegar and dishwashing detergent, and it works beautifully!!

7.  Try to stay away from birth control pills.  This one is a hard one, though, since birth control pills do give some relief for patients with adenomyosis.  Just keep this in mind as you go through your treatment.  I did have to take birth control pills to control my symptoms during my 17 year struggle.  You may benefit from taking other steps first before resorting to taking bcps.

8.  If you are considering hormone replacement therapy (HRT) for menopausal symptoms, try using bioidentical hormones.

9.  Invest in a good quality water filter.

Types of Estrogen

It is important to understand the different types of estrogen that we are exposed to on a daily basis.  There are basically three types – xenoestrogens (man-made/synthetic), human estrogen (that our own body produces) and phytoestrogens (estrogen like substances found in plants).

Xenoestrogens

These estrogens are powerful and very dangerous.  They can increase the estrogen levels in the human body leading to the condition “estrogen dominance”.  Steps should be taken to avoid these substances although complete avoidance is impossible because they are in the environment.  They can be found in products such as plastics, gasoline and pesticides.  I have devoted a whole page to this subject – please check out that page for more information.

Human (endogenous) estrogen

This is the natural estrogen produced by the ovaries.  The levels in the body are regulated by the pituitary gland through the action of lutenizing hormone (LH) and follicle stimulating hormone (FSH).

Phytoestrogens

These are weaker estrogen like substances that are found in plants.  Please see “Helpful Diet Tips” for a list of foods that contain these substances.  Phytoestrogens actually help to reduce the level of estrogen in the human body, and many studies have shown a link between these substances and a lower cancer risk for estrogen dependent tumors

So What Does This Mean?

Here is a very simplified explanation.  Remember that this is basic – many more hormones are involved in the proper functioning of the reproductive tract!

Adenomyosis has been shown to be estrogen dependent meaning that it needs estrogen to grow.  The body has a certain number of estrogen receptor sites and constantly “fills” these sites.  If they are “filled” with too many xenoestrogens, the resulting condition is estrogen dominance.  Too much estrogen can lead to adenomyosis or estrogen dependent tumors.  If the sites are “filled” with a lot of phytoestrogens, the estrogen levels are lower.  Not enough estrogen, adenomyosis can’t survive or at least won’t progress as fast.

There is no such thing as an absolute in medicine…..

Although many studies show that the phytoestrogens in flaxseed to be beneficial, a study done at the University of Pittsburgh has shown that the phytoestrogens in flaxseed oil actually stimulate the growth of breast cancer cells.  Please keep in mind that studies on any disease/disorder can have conflicting results.  Based on my research, I have found many more studies showing the benefits of phytoestrogens in reducing cancer risk.  However, if you have a family history of estrogen dependent cancers (uterine, breast, ovarian), please keep this in mind and talk to your doctor before supplementing your diet with flaxseed oil.

Estrogen Dominance

In doing research for my book, I was particularly interested in the fact that adenomyosis had been linked to a condition called estrogen dominance.  This term has been coined by Dr. John Lee.  It refers to a condition where there is insufficient progesterone in relation to estrogen in a woman’s body.  This results in “unopposed” estrogen which has also been shown to play a role in other gynecological conditions, particularly breast cancer.

Some of the symptoms of estrogen dominance include:

Breast cancer

Endometrial cancer

Fatigue

Insomnia

Foggy thinking

Mood swings

Irritability

Polycystic ovarian syndrome

Uterine fibroids

Fibrocystic breast disease

Endometriosis

Premenstrual syndrome

Irregular or heavy periods

Spotting between periods

Infertility

Cold hands and feet

Headaches (including migraines)

Depression, anxiety

Weight gain in the hips, thighs, and abdomen

ZRT Laboratories now offer an at home saliva test that measures estrogen and progesterone levels and also gives a ratio of estrogen to progesterone.  I was intrigued by this, so I decided to have my levels tested.  Sure enough, my ratio came back at 67 indicating estrogen dominance (normal range is 100-500).  Others who are suffering from adenomyosis who are interested in ordering this test and learning more about Dr. Lee/estrogen dominance should refer to his website, www.johnleemd.com.

Adenomyosis and Endometriosis can be Pathologically Proven

After recently listening to Dr. Drew’s ill-informed comments on endometriosis, I find it extremely important to set the record straight. I suffered from adenomyosis, a condition somewhat similar to endometroisis, for 17 years before obtaining a correct diagnosis. I find Dr. Drew’s comments damaging to the cause of bringing more awareness and education to endometriosis and adenomyosis.  It is vitally important for people to know the truth about these disorders.

So let me begin by giving you some background information for those of you who haven’t heard the actual call and remarks.  A young man called in to Dr. Drew on his radio show, Loveline.  His girlfriend had been diagnosed with several seemingly unrelated medical conditions, one of which was endometriosis.  After listening to this guy talk about his girlfriend’s diagnoses that took him probably less than one minute to describe, Dr. Drew made the statement that she had a somatoform disorder and needed a trauma specialist.  He called these pelvic pain disorders “garbage bag diagnoses” and said that they could not be pathologically proven.  In addition, he made the comment that endometriosis is linked to sexual trauma.

Needless to say, many women were outraged by these comments.  But even better, some nurses and doctors got in on the action.  Dr. Drew really ended up taking a beating over these remarks.  Most significantly, Dr. Tamer Seckin, co-founder of the Endometriosis Foundation of America called in to Dr. Drew’s show, and the two of them had about a 30 minute conversation about this topic.  Dr Seckin did a beautiful job on setting the record straight, giving accurate facts about endometriosis in a very professional manner to Dr. Drew.

I have listened to both the initial call/remarks and the conversation with Dr. Seckin in full.  Although Dr. Drew did apologize at the beginning of the call with Dr. Seckin, he still made some remarks that I find disturbing and inaccurate, so I would like to address these comments here.

Dr. Drew made the following comments:

“Everything you mentioned, EVERYTHING you mentioned are things that actually aren’t discernably pathological.” (This comment came after the caller told Dr. Drew that his girlfriend had been diagnosed with endometriosis, interstitial cystitis, lactose intolerance, and no stomach lining)

This is false.  Endometriosis is very much a discernably pathological condition. Even more interesting, IC is commonly seen in women suffering from endometriosis.

“When people have unexplained pelvic pain, it’s called somatoform dissociation.”

Not necessarily.  These two remarks are the ones I want to discuss further.

First of all, what he fails to understand here is that many women have had multiple diagnoses and are later proven to have endometriosis or adenomyosis.  Many of these women have diagnoses that appear to be unrelated, as was my case.  Any doctor can easily say that “endometriosis sucks”, as Dr. Drew so eloquently put it, if they have multiple visits to a doctor confirming  pathologically that the woman is suffering from endometriosis.  However, it takes a TOP doctor, and expert in his field, to be able to determine that a woman is actually suffering from this disorder after receiving multiple diagnoses that are seemingly unrelated.  I would love to know if he has seen the Discovery Fit and Health program, “Mystery Diagnosis.”. The problem of receiving multiple diagnoses that are seemingly unrelated are evident in many different diseases, not just endometriosis!

Secondly, in my opinion, any doctor who thinks he can accurately diagnose a patient without ever talking to her or physically examining her is not one worth pursuing.  No one, and I mean NO ONE, can accurately diagnose someone without doing a thorough exam on the patient.  I have run into this problem during my struggle with adenomyosis, and the doctors that felt they were able to diagnose my condition without a thorough exam were unanimously wrong in their assessment of my condition.  I realize that this is just a radio show, and there is limited time to respond to caller’s questions.  However, in my opinion, and more responsible answer to this young man’s question would have been something to the effect of, “Well, it’s hard for me to say for sure, but there are several things that could be going on here.  She COULD certainly have a somatoform disorder.  However, some conditions do have seemingly unrelated diagnoses as the doctors are trying to determine the cause of the pain.  My advice would be to pursue a top of the line gastroenterologist/gynecologist and see if they can narrow down a diagnosis.  If they are still unable to find a discernably pathological condition, you may want to consider discussing the possibility of a somatoform disorder.”

Having been through the agony of adenomyosis, I know what these women are going through.  You have no idea the number of these women who have not been able to get effective treatment for these disorders because of the lack of the medical profession to accurately diagnose these conditions.  While going repeatedly to physicians over many years, a lot of these women, including me, have been told by doctors that it is “all in our head” when it, in fact, is not.  This is a major reason why there was such an uproar over Dr. Drew’s comments. This is also one of the main reasons I started http://www.adenomyosisinformationnetwork.com as I want the general public to be educated about misconceptions about this disorder.  Just because the doctors are unable to diagnose the cause of a woman’s pelvic pain DOES NOT necessarily mean it is a somatoform disorder.  Could it be?  Sure.  Does it have to be?  No!

In my case, I suffered from chronic severe pelvic pain for 17 years, and no, I have no history of sexual trauma.  Over that time, I was put on antidepressants because I was so depressed about not getting a diagnosis and having to deal with chronic pain.  I was treated many times as if the condition was in my head.  But lo and behold, when my hysterectomy was finally done in 2007, I had a discernably pathological condition called adenomyosis.  Once the uterus was taken, all of my pelvic pain stopped.  During the years that I suffered from this condition, I had a slew of unrelated diagnoses, including peptic ulcer, irritable bowel syndrome, celiac disease, endometriosis, uterine polyp, and possible complication from a ruptured appendix.  All seemingly unrelated – but I never even heard the word adenomyosis until after it was found during the pathological examination of my uterus.

Am I convinced that this girl has a somatoform disorder?  Based on the call I heard, absolutely not.  Again, I can’t say for sure what the problem is, but I am not convinced that Dr. Drew has the correct diagnosis because I’ve been down that road.  Could she be suffering from endometriosis, a pathologically discernable condition?  Absolutely.

Endometriosis and Suicide – an Excellent Article by Rachel Cohen

WEDNESDAY, MARCH 12TH, 2014 / RACHEL COHEN

I wanted to die last night. There, I said it. Ugly thing to say, right? Might even make you want to inch just slightly away from me. Feel free to. Sometimes I want to inch away from myself as well. But before you judge, try to listen to what I have to say. Assess my words with an open, empathetic heart, and think about the way you would feel if you were in my shoes. It may sound as though I am trying to pull at your heartstrings, to make you feel depressed for me and my life, but I am not.  I just want you to understand what it’s like to be a woman who suffers from endometriosis. I just want you to understand. These are the realities of living with endometriosis.

Dealing With the Physical Reality of Endometriosis

Pain. Imagine your abdomen and pelvis are encased in barbed wire so that the spikes of the wire are actually piercing them, stabbing them sharply every time you move. Now imagine that the barbed wire is actually attached to some sort of electrical current that shoots electricity through the spikes, increasing the intensity of each penetration. Next, add a machine that alternates shooting the electrical spikes into the body and pulling them out again in random intervals, thus adding a surprise and shock factor to the pain. Lastly, in addition to the shocking electrical stabbing pain, there are deep, underlying waves of pain that crush and release the muscles, causing a cramp so excruciating it takes your breath away. Imagine living with that agony on an everyday basis.

I live with a veil of pain draped over my body. Not stubbed toe pain, sprained ankle pain, or even broken heart pain. The pain that I feel every day is an all-encompassing event, specially formulated to break both my body and my spirit. It is a visceral and animalistic torture that brings me to my knees in surrender. That is the reality of living with endometriosis.

Fatigue. I want you to try to recall a night during which you slept very little. Maybe you had a party the night before, or perhaps you were up doing work. Now think about the way both your body and mind felt the following day. Did you function as well as usual? Were your movements as fluid, your mind as sharp? Or did it feel as though you were moving through quicksand, your brain wrapped in cellophane? How would you deal if you felt like that every day?

I live with a crushing form of fatigue that makes my every move devastatingly cumbersome. I often feel as though I am nine months pregnant with quadruplets, constantly carrying around an enormous weight that is attached to my body, sucking whatever strength I have left.  My limbs feel like they are wrapped in lead, and my eyelids covered in cement. All my body wants to do is sleep, every minute of every day, but it can’t. My life doesn’t take a nap when I do.

The Emotional Reality of Endometriosis: Depression 

I wish I could say the physical aspects of endometriosis are all that plague me. Unfortunately, this is not the case. You see, for every physical malady that plagues women with endometriosis, there is an emotional component that is equally, if not more, devastating.

Guilt. Guilt is like an itchy woolen sweater that is two sizes too small: suffocating, uncomfortable, and in desperate need of being shed. It permeates the many aspects of my life and makes me miserable. I feel guilty for having endometriosis to begin with, as I sometimes wonder what I did wrong to deserve it. I also feel guilty that I cannot give my husband the emotional or physical attention he needs. I feel guilty that my close friends and family have to spend their days taking care of me when I am incapacitated and that I spend my days idling around the house while they work hard. I feel guilty for canceling plans that I made weeks ago and the lack of ability to make plans to begin with.  Guilty that I cannot be a good friend to others. And guilty when I think of my children who I cannot take care of the way they deserve to be taken care of. Finally, I feel guilty that I cannot give my husband any more precious children due to the hysterectomy I had that was not even successful.

Inadequacy. Due to the symptoms of endometriosis, I often feel inadequate and obsolete. I feel like I lack the ability to do anything important, like my job, or household work.  Relationships with my spouse, kids, parents, siblings and even my friends are often placed on the back burner as I struggle daily to merely exist. This inability to maintain relationships, keep my job, take care of myself or family members or even be intimate with my spouse overwhelms me with the feeling that I am incompetent, useless, and valueless. Sometimes I even feel as though my existence on this earth is pointless if I can’t be a functioning member of society. These feelings of incompetence sometimes also lead to depression, embarrassment, guilt, and rage.

Anger. Imagine being told that the agonizing pain you feel every second of every day is not real, that you are making a big deal out of nothing. How would you feel?  Anger? Rage? Imagine being told that you are a “druggie” when you ask your doctor for pain medication to ease the misery you are dealing with. Anger again? Or how would you feel towards “God” or “The Universe” if you let your mind wander to the opportunities you would have if you didn’t have endometriosis? It’s hard not to be furious when you think of everything you are missing or losing due to this disease. What if you’ve tried for years to get pregnant with no success or just miscarried the child you’ve wanted all of your life. And imagine being so debilitated by your symptoms that you are unable to perform your everyday activities. How would you feel? Frustrated? Angry? That’s exactly the way I feel.

Jealousy. For me, jealousy rears its ugly head when I see other people performing activities that I am too sick or fatigued to perform. It is hard not to be jealous of a healthy person when I am stuck in bed, too exhausted to move, or lying on the couch, writhing in pain. Just seeing someone go food shopping without discomfort causes jealousy within me, as I would do anything to be able to perform everyday activities without pain. Jealousy is also inevitable when we I see other women, basking in their pregnant glow, and I know that I will never again carry a living being inside of me.

Loneliness. Yes, I am extraordinarily lucky to have a wonderful support system in my life, and I am enormously thankful for that support, but there is a profound, hollow loneliness that sometimes overwhelms me when it occurs to me that despite their best efforts, my loved ones cannot fully understand what I am going through. Even my sisters with endometriosis cannot completely comprehend my individual suffering, as every person suffers uniquely. Therefore, I am sometimes led to feel as though no one understands me, and there is no thought lonelier than that.

Loss. Endometriosis is a disease that is full of loss and mourning. On a basic level, I mourn the loss of a “normal”, illness-free life. A life that is chock-full of boring, everyday activities and errands. I am no stranger to mourning or to loss. Having a miscarriage created a deep, inconsolable hole within me that will remain with me forever.  But most of all, having a hysterectomy has caused a ubiquitous feeling of loss within me as I mourn, not only the loss of potential children, but the loss of a part of my womanhood.

Depression. Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. For me, depression is caused by many different things. Being alone all the time, not being able to spend time with family and friends due to pain, fatigue or other symptoms is depressing. Excruciating pain is depressing. Feeling like my illness is misunderstood is depressing. Feeling like I need to be embarrassed of my illness is depressing.  And lastly, the thought that there might not be any hope for my recovery because there is no tangible hope for a cure, that I might have to deal with the incapacitating symptoms of endometriosis for the rest of my life, is the most depressing thought of all. That is why I wanted to end my life. Yes, I contemplated suicide. Like so many of my sisters with endometriosis, I hit bottom. I was tired of the pain, tired of the despair, tired of the guilt, and tired of being tired. But mostly, I was and am, just tired of the pain.

Living with Endometriosis is Horrendous

Now that I have exposed my vulnerable and aching heart to you, my friend, you have a choice to make. I will never blame you if you choose to stay away from my complicated and sometimes depressing life. Like I said, if I had the choice, I would probably do the same. But let me say one last thing before you make your decision. Life with endometriosis is horrendous, but women with endometriosis are not. We are strong, determined women who fight fiercely and love fiercely. We try our best. We are not lazy or pathetic and we don’t give up. We may not sugarcoat the painful emotions and terrifying symptoms that we deal with. Our honesty may even frighten you. But when you meet a woman with endometriosis, you are meeting a proud, indomitable warrior. A soldier who goes into the fire on a daily basis and emerges with a thicker skin time and time again. A woman who should not be pitied for her pain, but admired for her ever-present resilience and strength. That, my friend, is who I am. Take me or leave me. It’s up to you.