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..
Barry Sears said it best in his book, The Omega Rx Zone:
“Fat has become a foul three-letter word in our society. We’ve become a nation of fat phobics, and some of us try to avoid this nutrient at all costs in an effort to lose weight and improve our health. Yet this war on fat has been completely misguided.”¹
During the time that I dealt with adenomyosis, the non-fat diet fad was quite popular. In my attempt to eat healthy, my ex-husband and I tried to buy as much non-fat food as we could, thinking at the time that this was the right thing to do. Boy, were we ever wrong!! My struggle with adenomyosis was at its worst during the time that I was on this non-fat diet – excruciating abdominal pain, very heavy menstrual bleeding with clots, severe bloating – it was just horrible.
After putting up with these monthly symptoms for several years, I read an article about the health benefits of flaxseed. I learned that this food contained high levels of omega-3 fatty acids and was found to be helpful in a slew of medical issues. I was intrigued. After years of different birth control pills, antispasmodics, and pain killers, I was ready to try just about anything.
I began to sprinkle ground flaxseed on just about anything I ate – yogurt, spaghetti sauce, salad…even a peanut butter and jelly sandwich. The taste was rather earthy if eaten on its own, but when added to these dishes, I couldn’t really taste it at all.
Several months went by, and I began to notice a significant decrease in my pain level and heavy bleeding. I still had problems, but it was definitely better than where I had been before I added flaxseed to my diet. This led to more research on omega-3s, and I quickly realized that a non-fat diet was, in fact, not healthy. I learned that some fat is necessary for optimum health. At the same time, I learned how the Western diet is overloaded with omega-6 fatty acids while deficient in omega-3s. Let me explain further.
Fat is needed for both immediate and reserve energy as it supplies two times as many calories per molecule as compared to carbohydrates or protein. It is needed for the formation of hormones, cell walls, enzymes and brain tissue. Fats are also needed for the proper absorption of many vitamins and minerals and for the proper functioning of nerve synapses.
Fats can be divided into two groups: saturated and unsaturated. Saturated fats are solid at room temperature and are known to increase cholesterol. Examples are lard and butter. Unsaturated fats can be further subdivided into monounsaturated and polyunsaturated fats. Monounsaturated fats are liquid at room temperature but cloudy when refrigerated. Examples include olive, peanut and canola oil. Polyunsaturated fats are liquid at both room temperature and in the refrigerator. Examples are fish, corn, soybean and sunflower oils.
Fats can also be found in their natural and unnatural forms. In their natural forms, the hydrogens of the fatty acid are on the same side of the carbon chain. Since these hydrogens naturally repel each other, the carbon chain will bend away from the hydrogen side. These kinks help the cell to be more fluid and flexible which allows a healthy exchange of nutrients in and out of the cell. Trans fats, widely regarded as very unhealthy today, are the unnatural forms of fats. These fats are made through a process called hydrogenation, and this process is known to destroy omega-3 fatty acids. The hydrogen atoms in trans fats are on opposite sides of the carbon chain, so no bending of the chain takes place, and they jam the “plug” for the natural fats. Examples of trans fats include partially hydrogenated vegetable oil, solid shortenings, hydrogenated lard, and solid margarine.
A specific group of unsaturated fats, called the essential fatty acids, are particularly important in overall health. These fats are called “essential” because they must be included in the diet as they cannot be made by the human body. Three classes of essential fatty acids exist: omega-3, omega-6 and omega-9. The omega-3s include alpha linolenic acid (LNA), eicosapentenoic acid (EPA), and docosahexanoic acid (DHA). The omega-6s include linoleic acid (LA), arachidonic acid (AA), and gamma linoleic acid (GLA). An example of an omega-9 fatty acid is oleic acid. It is a monounsaturated fat and can be found in olive oil, avocados, and nuts.
The omega-3 fatty acids help to keep cell membranes fluid and flexible which allows for effective exchange of nutrients in and out of the cell. These fatty acids in general produce good eicosanoids, a type of hormone. Good eicosanoids prevent blood clots, dilate blood vessels, reduce pain, enhance the immune system, and improve brain function. Since these fats are polyunsaturated, they tend to oxidize and turn rancid easily. To overcome this problem, the food industry came up with the process of hydrogenation as discussed earlier. Hydrogenation makes the fats more stable, but it also destroys the effectiveness of omega-3s. As a result, the Western diet is now dangerously deficient in these important fatty acids.
The omega-6 fatty acids are the most common polyunsaturated fat found in food. In general, they lead to the production of bad eicosanoids. These eicosanoids promote blood clots, constrict blood vessels, promote pain, and decrease immune and brain functions. Although this seems like a bad thing, it is necessary to have these fatty acids present for optimum health.
Both omega-3s and omega-6s need to be present in the human body in the right ratio. The National Institute of Health recommends the following daily intake of essential fatty acids:
EPA/DHA – 650 mg.
LNA – 2.22 g
LA – 4.44 g
With today’s Western diet that is predominant in processed food, our intake of omega-6 fatty acids is too high whereas our intake of omega-3 fatty acids is lacking. I found that when I added flaxseed (high in omega-3s) to my diet, my symptoms of adenomyosis reduced significantly. This makes sense as these fatty acids make the good eicosanoids which reduce inflammation. To reduce adenomyosis symptoms, I recommend getting the balance of omega-3 to omega-6 fatty acids back into a healthy range. Reduce your intake of processed foods and eat more natural and organic fruits and vegetables. In addition, get a good omega-3 supplement such as flaxseed or fish oil. You might be surprised at the results!
For more information, please check out my book, Adenomyosis: A Significantly Neglected and Misunderstood Uterine Disorder.
¹Barry Sears, The Omega Rx Zone: The Miracle of the New High-Dose Fish Oil (New York: Harper Collins Publishers, Inc, 2002) 20.
Interesting post from Endo the World? blog. Glad to see these workshops!
A few weeks ago I had the privilege of taking part in the James Lind Alliance priority setting workshop for endometriosis, which took place in London. The aim was to bring together a mix of healthcare professionals, patients, family members, and carers to decide on the top ten questions to be prioritized in future endometriosis […]
I recently started the Adenomyosis Fighters Support Group on Facebook, and I have noticed that a lot of women seem to have fears about having a hysterectomy. I want to alleviate some of these fears by sharing my own hysterectomy story.
I suffered from debilitating pain and very heavy menstrual bleeding for about seventeen years. During that time, I never received a definitive diagnosis. After a failed endometrial ablation, my OB/Gyn finally gave me the option of hysterectomy. I jumped on that option immediately because I was just so sick of dealing with all the pain and bleeding.
I was terrified. I was terrified of the surgery itself, but I was also terrified of what would happen after the surgery. Would the pain actually be gone? After all, I still didn’t know exactly what was wrong with me. Would I immediately go into menopause with those horrendous hot flashes, night sweats, and mood swings?
My doctor explained to me that she would only take my uterus. This would be done laparoscopically instead of a vaginally. She explained that the laparoscope would go in at my belly button so they could view my abdominal cavity. There would be two tiny incisions on either side of my lower abdomen where she would insert two instruments that would remove small pieces of my uterus until the majority of it was gone. She explained that with this kind of surgery, the very bottom of the uterus just above the cervix would probably remain, and this very small part may still bleed, so I may still have some very light periods after the surgery. She did not want to take my ovaries since that would send me into premature menopause. I agreed to this type of surgery.
Even though my doctor explained all of this to me, I was still scared to death. Again, I didn’t have a diagnosis, so I wasn’t sure if this surgery would take away the pain or not. By this point in my life, I had many surgeries, so I kind of knew what I was facing – signing in at the desk, filling out all the insurance paperwork, waiting until the nurse called me back, getting into a hospital gown, having the nurse start the IV….and then that long wait. Just sitting there, waiting, with my family members. This was always the hardest part for me. My heart raced, and my stomach was queasy. The only thing different for me was that the nurse came in a put tight stockings on my legs. I asked why, and she said “to prevent any clots from forming in your legs”. This just added to my stress…one more thing to worry about.
Finally, the time came to go to surgery. This was always a time of relief for me. When they gave me the drug to make me drowsy, all the stress just melted away. I was suddenly so drowsy that I didn’t care what they did to me. Finally, my heart stop racing and my stomach settled. The stress was gone. Before I knew it, I was asleep.
When I woke up, I don’t remember feeling any pain at all. This was probably because I was so drugged up. I dozed on and off for a while. Next thing I knew, my family came in to see me. I don’t remember much at first, but gradually, I woke up. I still don’t remember much pain at all. A little while later, a nurse came in and removed my catheter. I was nervous, but I really didn’t feel much at all – it was quite easy. Later, the nurse asked me if I thought I could walk to the bathroom. I said yes, and I got up and slowly walked to the bathroom while the nurse walked next to me, holding my IV bag. I was able to urinate on my own without a problem other than being a little bit dizzy. Several hours later, I was discharged and sent home. I slept most of that day. I still don’t recall much pain at all. More than anything, I remember being a little weak and dizzy from the anesthesia, but I still had no problem walking as long as someone helped me.
The next morning, I got out of bed and walked into the kitchen where my mom was sitting at the kitchen table. She couldn’t believe how good I looked and commented over and over again about how well I came out of the surgery. I sat down at the breakfast table to eat, feeling pretty darn good. I was a little sore at the incision sites, but it really was minor. I ate breakfast, and a few minutes later, I had some abdominal cramping.
I need to stop here and give a little more background information on my ordeal with adenomyosis.
I had a retroverted uterus which means that it leans backward toward my bowel. During my ordeal with adenomyosis, one of the main symptoms that I had was excruciating pain with bowel movements during menstruation. The pain was so bad that at times, I actually had to crawl to the bathroom because of the pain. There were times I almost passed out from the pain, and at times I would end up vomiting. As my abdomen cramped, I would be unable to have a bowel movement. I could swear that at times, my bowel was obstructed from my adenomyotic uterus.
So, when I had this abdominal cramping after breakfast the day after my hysterectomy, I was really disappointed. It was the same type of pain that I had before the surgery. I thought that the surgery didn’t work, and anger, disappointment, and frustration just took over. The pain was fleeting, however. I went to the bathroom and had a bowel movement, and the pain dissipated rather quickly. Overall, it lasted maybe two minutes or so, and then I was back to my normal self.
That was the last time I had any abdominal pain! The last! I assume that this last bout of fleeting pain was a result of inflammation in that area as a result of surgery.
A few weeks later, I had a follow-up with my OB/Gyn. My mom was with me. She walked in to the room, sat down and looked at me. “Well,” she said, “I have some interesting news for you. The pathology report came back. You had a disorder called adenomyosis.” She also told me that I may have also had fibroids. There was some question as to whether or not the problem was all adenomyosis or adenomyosis and fibroids. I have since learned that adenomyosis and fibroids are commonly confused by doctors.
I was so happy to finally have a diagnosis that I sent roses to my OB/Gyn thanking her for finally giving me an answer. Months went by with no pain, and I started to realize that this whole nightmare was actually over. Hysterectomy was the best thing I ever did!
For about five years after the hysterectomy, I continued to have extremely light periods as my doctor had told me. The periods lasted one to two days only, but there was no pain associated with them. About four years after hysterectomy, I began to miss periods. I knew I was in perimenopause, but I was told that I wouldn’t be in complete menopause until I didn’t have a period for a year. My periods were sporadic for several years. Finally, my periods stopped completely, and at age 51, I am in menopause.
I did not take any hormones while going through the change. I had minimal discomfort during this time. I did have some sleepless nights, some night sweats, and some hot flashes, but all that was just annoying rather that really disruptive to my life. Adenomyosis was hundreds of times more disruptive that menopause. I would take menopause any day over adenomyosis. Of course, that’s just my experience. I clearly can’t speak for all women!
So, I hope that this blog helps to alleviate fears in women who are facing a hysterectomy due to adenomyosis. Although each woman has their own experience, my gut tells me that if you can get through the pain of adenomyosis, you should be able to breeze through a hysterectomy. In my life, I have had ten surgeries – ruptured appendix, adenomyosis surgeries, three back surgeries, and a coiled brain aneurysm. By far, the worst pain I have ever felt is from adenomyosis. The only thing that has come even close to this pain is my ruptured appendix. The back surgeries and coiled brain aneurysm were a breeze to me. Women with adenomyosis truly are some of the strongest women walking the planet. If you can get through the pain of adenomyosis, you truly can get through anything!
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:
- 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.
- The NIH spending will be cut 18 percent (5.8 billion). This will significantly damage our chances of more research for adenomyosis/endometriosis.
- The Department of Health and Human Services budget will be cut by 16 percent.
- Spending will increase for programs where oil and gas are drilled on public lands (see below for reasons why this is important).
- 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:
- Petroleum products
- Fire retardant materials
- Oil field chemicals
- Epoxy and plastic resins
- Food coloring
- Coolant fluids
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:
- 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…”
- 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.
- 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).
- 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.
- 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.
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):
Yes, you read that right! There are a few rare cases of endometriosis that have been found in men. I read an article the other day that addressed this issue, and I was shocked! Before I wrote this blog, however, I wanted to verify that this is actually true. Well, it is. It’s rare, but it has happened.
A study published in 1985 by Martin and Hauck¹ looked at an 83-year-old man who had an endometrioma on his lower abdominal wall. The researchers reference several other cases that have been reported in the literature. The theory for the development of endometriosis-like tissue in the male at that time was that it developed from remnants of the prostatic utricle, or remnants of the uterus. They discuss how female remnants may be present as some men may be genetically mosaic – that is, they may have some female cells (46,XX) along with the normal male cells (46,XY). However, they point out that in this case, the 83-year-old man had only 46,XY cells (a normal male karyotype). The researchers go on to say that this man was thought to have prostate cancer but was later found to have adenocarcinoma. He had been placed on 25 mg. TACE which he took for ten years. It is extremely interesting to note that TACE, also known as chlorotrianisene, is a type of estrogen. It has since been discontinued from use.
A more recent study done in 2014 by Jabr and Venk² addresses a case of abdominal pain in a 52-year-old man with a history of cirrhosis and hepatitis C. He had two previous surgeries for an inguinal hernia within a two-year period. He presented to the emergency room with excruciating pain in his right lower abdomen and pelvis. A mass was found attached to the urinary bladder, and it extended into the inguinal canal. The mass was removed and tested, and it was found to be positive for both estrogen and progesterone receptors. The findings were consistent with endometriosis. The researchers note that cirrhosis is known to be associated with high estradiol levels.
Jabr and Venk go on to discuss several other previous studies. Endometrial-like tissue was discovered in two men with prostate cancer, both of which had been treated with estrogen for several years. The researchers also point out that another man was diagnosed with endometriosis after inguinal hernia surgery. They hypothesize that inguinal surgery coupled with high estrogen levels may increase the risk of development of endometriosis in the male. They also state induction appears to be a likely pathway for the development of endometriosis. Induction is the formation of endometriotic-like tissue as the result of unknown factors, endogenous or exogenous, inducing change in undifferentiated mesenchymal or embryonic cells.
Most people think of endometriosis as a disorder that affects women only; however, it has been seen in men. It is important to note this as it may give us much-needed information as to what factors play a role in the development of this disorder. According to these few studies, it appears that estrogen (estradiol) may play a pivotal role in the development of endometriosis and adenomyosis. I hope that more studies in men are forthcoming.
¹Martin, JD Jr., and Hauck, H.E. (1985). Endometriosis in the male. Am Surg, 51(7):426-30. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/4014886
²Jabr, F.I., and Mani, V. (2014). An unusual case of abdominal pain in a male patient: Endometriosis. Avicenna Journal of Medicine, 4(4):99-101. doi:10.4103/2231-0770.140660