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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 […]
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.
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).
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).
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.
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:
Polycystic ovarian syndrome
Fibrocystic breast disease
Irregular or heavy periods
Spotting between periods
Cold hands and feet
Headaches (including migraines)
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.
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.
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.
Have you every heard of adenomyosis? If not, you may want to learn about this condition since it affects so many women of childbearing years. Even young men need to learn about this uterine disorder since it may one day affect their future wife or daughter. I know, it isn’t fun to talk about reproductive health in women, but it is imperative in order to help these poor women who have to deal with it on a daily basis.
Adenomyosis used to be called “endometriosis interna”. It is similar to endometriosis in that the endometrium, or the layer of the uterine wall that is shed every month in the form of a menstrual period, is misplaced. In endometriosis, the endometrial tissue is found outside of the uterus, such as on the ovaries, or rectum. In adenomyosis, the endometrium actually invades the muscle of the uterus and can be found throughout the entire uterine wall.
Both of these conditions cause extremely heavy and painful menstrual bleeding, abdominal bloating, severe fatigue due to excessive blood loss (anemia), migraine headaches, infertility, and a host of other problems. Clearly, these disorders can significantly impact the quality of a woman’s life.
Thankfully through the help of many great organizations such as the Endometriosis Foundation of America, endometriosis is finally coming to the forefront as a serious medical condition. This disorder has recently received a lot of attention due to the efforts of these wonderful groups. However, adenomyosis continues to be a significantly neglected disorder. Very little research has been done on this disorder, and the criteria for accurately diagnosing adenomyosis continues to be problematic.
I had adenomyosis for 17 years before I finally obtained relief through a hysterectomy (currently, the only “cure” is hysterectomy). Since that time, I have dedicated a large part of my spare time to education on this disorder – writing a book on my experience and starting my own website, Adenomyosis Fighters. I have also authored and sent a petition to the National Institutes of Health which was acknowledged by Dr. Alan Guttmacher, Director of the National Institute of Child Health and Development. He informed me that adenomyosis has recently been included in the scientific research that is being done at the Eunice Kennedy Shriver Institute and told me that they are always ready to accept excellent applications from outside academic institutions for more adenomyosis research.
I have started another petition that will be sent out to over 20 academic research institutions asking them to develop more studies on adenomyosis and to apply to the NIH for funding. As of now, the petition has 244 signatures, and we are looking for many more. The petition will officially close on September 30, 2015. In addition to this new petition, I am working on my second adenomyosis book which will have the most up-to-date information available on this disorder. It should be available for purchase by the end of 2015.
For more information on adenomyosis, please check out my “Adenomyosis Fighters” website at http://www.adenomyosisfighters.com. On the homepage, you will find the link to the petition on the Care2 website. Please consider signing this petition as it will help so many women who are suffering from this terrible uterine disorder. Information on my published book can also be found on this site.
I hope with all my heart that we will be able to learn what causes this disorder and effective ways to treat it soon!