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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 […]
Today I would like to address some common misconceptions about adenomyosis/endometriosis and how these misconceptions dramatically impact the emotional/mental well-being of its victims. I have heard and read so many comments – ignorant comments – by those who don’t have the disorder that dramatically add to the depression and anxiety that these women have to endure. Here are some examples:
- You need to go to a psychologist. You just need an antidepressant.
- They’re just bad cramps. All women go through it. Why can’t you?
- You’re just being a baby about it. You’re weak.
- It’s all in your head.
- Just get more exercise. Go to the gym and it will all get better.
- Your diet is to blame. If you ate better, you would feel better.
- It’s all stress related. You just need to relax.
OK, so let’s address these comments one by one.
- Adenomyosis is not a psychological problem. Anyone who tells you that it is doesn’t know what they are talking about. Years ago, this belief was prevalent, but today we know that adenomyosis and endometriosis are NOT normal, and these disorders can be pathologically proven. Endometrial implants have actually been visualized in multiple places outside of the uterus in the case of endometriosis, and adenomyosis can be visualized as invading the uterine muscle. These disorders can be seen and are real!
- Adenomyosis and endometriosis are not just “bad cramps”. These disorders also cause very heavy menstrual bleeding with large clots, bowel and bladder issues, prolonged menstrual bleeding (many times up to 14 days), anemia, and infertility.
- There is absolutely nothing “weak” about dealing with adenomyosis and endometriosis. This comment many times is made by men, and they have absolutely no idea what it is like to live with an “angry” uterus. Until the day that a man is born with a uterus, the following comment by Rachel from the TV show Friends stands – “no uterus, no comment!”
- Adenomyosis is not in your head. Refer to #1.
- Adenomyosis involves endometrial tissue growing into the uterine muscle. Endometriosis involves endometrial tissue migrating outside of the uterus. No amount of exercise will change this process. This misplaced endometrial tissue will not magically return to its proper location just because you exercised for an hour. Don’t get me wrong – exercise is always a good thing. But exercise will not cure these conditions. In addition, during the height of an adenomyosis or endometriosis attack, women do not feel well enough to exercise. It is very easy to say “just exercise” when the person saying it doesn’t deal with either of these disorders.
- Now, this one has a bit of truth to it. Diet has been shown to reduce symptoms in some cases. However, diet is not a cure. Again, nothing dietary has been shown to definitely change the course of either disorder. Even so, there are some changes that can be made that seem to help some of the symptoms. Refer to my page, http://www.adenofighters.com, for more information.
- Again, relaxing may help reduce some of the symptoms, but it is not a cure. These endometrial implants will not just disappear just because a woman “relaxes”.
It is so important to understand that both adenomyosis and endometriosis are pathological processes, and the cause is currently unknown as is any cure. People who are around women who suffer from these disorders need to be acutely aware of this. Please don’t make these kinds of comments as they seriously impact their emotional and mental health. It is hard enough to deal with these disorders on a daily basis – the last thing they need is someone who doesn’t deal with adenomyosis/endometriosis to tell them how to “cure” themselves. There is no known cure at the current time except for hysterectomy in the case of adenomyosis. A hysterectomy will not cure endometriosis.
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 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.