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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

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.

Fighting for Adenomyosis Sufferers

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!

My Seventeen Year Struggle With Adenomyosis

First of all, THANK YOU so much for the response to my previous blog post, “For a Moment, Imagine the Pain”. I was stunned when I learned that this post had gone viral! I can’t even tell you how much that means to me knowing that I have helped so many women in my own small way. Even though there is no cure for this disorder at the moment, we can all at least support each other mentally and emotionally. The fact that you know that you aren’t alone is HUGE in the battle against this monster of a disorder!

As I continue to push for more education and research for adenomyosis, I am so affected by all the stories that I read from women who are currently struggling with this uterine disorder. I read a lot of posts by women who just want basic information. These women are desperate to know that there are other women out there who are going through the same thing. Therefore, I have decided to write a blog post on my experience, hoping that this information will help others out there who are suffering currently. WARNING: Before reading any further, please know that this blog is graphic!

From the first day of my first menstrual period at the age of 14, I have had bad cramps and heavy bleeding. I remember coming home from high school because I was in so much pain and having to take Motrin to stop the cramps. I was told that this was all normal. All women have cramps and feel like hell during their periods. It was all just a part of being a woman.

When I went to college, I noticed that a lot of the girls in my dorm just seemed to breeze through that time of the month. Although it wasn’t a main topic of discussion, it seemed like some girls never slowed down…ever. They always felt pretty good and had so much more energy than I did. I really began to blame myself for not being a stronger woman. Why did I struggle so much during “that time of the month”? I was drained, moody, and had horrible headaches that didn’t seem to respond to ibuprofen, and I began to refer to them as “menstrual headaches”.

The real nightmare started in 1990. I woke up one morning to searing abdominal pain. Now, for comparison, I had a ruptured appendix in 1986, and obviously, I clearly remember that pain. The surgeon told me that I was very close to death after my appendectomy as my appendix was also gangrenous. I ended up with peritonitis (a very serious abdominal infection) and was on IV antibiotics for six days. My surgeon told me that if I ever felt pain like that again, I needed to get to the hospital as soon as possible. I never forgot that.

Back to the morning in 1990 – this abdominal pain was even more severe than the pain I felt from the ruptured appendix! It came in waves every few minutes, and when the pain hit, I thought I was going to pass out. Sweat poured down my face, and my shirt was wet. I felt like I had to have a bowel movement, but I was unable to defecate. At the time, I had just finished my period, which was horribly heavy and long (about ten days), and I was still spotting. I was petrified! I called my mom, and she came to pick me up to go to the hospital. I told her that I was in so much pain that I couldn’t even walk to the car, but she helped  me, and somehow I made it. As I compared this to the experience with the ruptured appendix, I was sure that I was on my death-bed.

When I arrived at the hospital, I felt like I needed to have a bowel movement again. I raced to the bathroom and had a huge bout of diarrhea. I felt a little bit better, but those waves of pain kept coming. The ER doctor ran a bunch of tests, but they all came back normal. He gave me some narcotic pain meds through an IV and told me I probably had food poisoning. He sent me home. I have to admit that I was a bit skeptical. This pain was more severe than the pain I felt after my ruptured appendix. Was this really food poisoning, or did he miss something?

Other than painful menstrual cramps, lengthy periods, and spotting, nothing really happened for about a year. During that time, I married and continued to work as I just put up with these difficult menstrual cycles. Then, suddenly, I awoke one night to the exact same pain. I sweated profusely, had excruciating cramping pain that doubled me over every few minutes, felt like I was going to pass out from the pain, and became very nauseated. Again, I felt like I needed to defecate but was unable to do so. After about five hours and having yet another bout of diarrhea, things settled down. Interestingly enough, this attack also happened at the very end of my menstrual period, and I was spotting at the time. I called in sick the next day to work, and I went to the doctor.

After explaining that this exact same thing happened twice within the year, the doctor was concerned that I had irritable bowel syndrome. He ordered a colonoscopy. Well, the colonoscopy came back completely normal. In fact, the gastroenterologist said that my colon looked so good that I didn’t need to have another colonoscopy for twenty years! I was frustrated. What was causing this horrendous pain?

As the years went by, these attacks became more frequent. They mostly occurred at the end of my menstrual period which clued me into the fact that this could be a gynecological problem. However, when I went to my gynecologist, he assured me that everything was normal and just told me to take ibuprofen. I was told that this was all “normal”.

My co-workers began to doubt that I was sick. People began to talk behind my back. Since the doctors couldn’t find anything wrong with me, they assumed that I was a hypochondriac.

My worst year was 1996. I had these attacks AT LEAST once a month, and all of them occurred before, during, or at the end of  my menstrual period. I decided to change gynecologists and get a second opinion. I traveled to a teaching hospital in Georgia at the recommendation of a friend, and I was super optimistic that I would get an answer there. This gynecologist scheduled a laparoscopy to investigate the cause of the pain. This surgery identified some endometriosis which was ablated during the procedure, and I hoped that this would finally be the answer. However, it wasn’t. Two months after surgery, the pain returned full force.

I returned to this doctor several more times, but she was unable to get to the bottom of the issue. The attacks continued and even worsened. I remember several nights in particular. One night, the pain was so severe that I was having diarrhea while vomiting in the trash can at the same time. On another night, the most severe cramp that I had ever had came across my abdomen, and I literally thought my intestine was going to rupture. On yet another night, I saw stars when a cramp hit me, and I thought for sure I was going to faint. I just grabbed onto the sink and told myself to breathe as I positioned myself so I wouldn’t hit my head if I fell. I remember lying on the bathroom floor in the fetal position, crying out of extreme frustration, begging God to deliver me from this nightmare. With each attack, I always felt like I had to have a bowel movement, but I couldn’t go. Some nights, I would become so frustrated that I would push as hard as I could, desperately trying to defecate. This led to the development of hemorrhoids.

Over the years, I began to notice that I would become extremely bloated just prior to the attack. In fact, if people didn’t know any better, they would think I was pregnant. Once the bloating began, I knew I was in trouble and that I better get home as soon as possible. I also began to pass incredibly large blood clots, some as big as the palm of my hand. I KNEW that this had to be some kind of gynecological disorder.

I began to have panic attacks. If I started to bloat or started to feel any kind of pelvic pain and I wasn’t at home, my heart would race, and I would start to feel faint. I would begin to shake and feel panicky, especially if I wasn’t near a bathroom. I remember a trip that my husband and I took to Las Vegas, and when we were in the airport on our way to go home, I began to bloat up. I became shaky and nauseated, and I began to have pelvic pain as we waited in line for our tickets. I went to the bathroom since I felt like I needed to defecate, but I couldn’t. Panic overtook me, and we had to stay in Vegas an additional two days before I could travel home. The doctor who I saw in Vegas was convinced that I had gastroesophageal reflux which I knew at the time was a bunch of nonsense. Honestly, I felt like telling him off because he wasn’t listening to me, but I was just too sick. He did give me some medication that made me sleep, and this is really what it took to get me home. I don’t think I would have traveled had I not been sedated.

Eventually, we moved to Virginia. I searched for a well-respected gynecologist and again had some hope when I found one that was highly recommended. I told her all that had happened to me, and she ran all the tests that had already been run on me in Georgia. Of course, everything came back normal. She suggested that I try birth control pills. These helped a little bit, but I still was miserable and still had the occasional attacks of severe pain.

I went back to her repeatedly, and I could tell that she was becoming more and more impatient with each visit. One time, I went with a detailed list of my symptoms and when I experienced them. As I started to read the list to explain things to her, she grabbed it from me, glanced at it a few seconds, and then threw it on the chair. As she performed my exam, I tried to ask her more questions, but I could tell she wasn’t interested in helping me. She told me, “I have to go. I have other naked women waiting on me”.

Extremely frustrated, I went to yet another gynecologist that was recommended to me. This guy was worse than the other. He actually closed his eyes while I talked to him, and I could swear he was sleeping. He did all the routine tests, the same as the other doctors, and couldn’t find any problems.

I continued to try to live my life as normally as possible. I had been prescribed a slew of different medications over the years, and none of them worked. At one point, I was prescribed Bentyl for irritable bowel syndrome, and this medication was completely useless. When one of the attacks started, I took that medication immediately with high hopes of it at least lessening the pain. This medication did absolutely nothing…no pain relief at all, and it ended up being one of the most severe attacks I ever had. Most of the doctors wanted to jump to the conclusion that I had IBS since they couldn’t find anything else. It is important to note that IBS is a diagnosis of exclusion. This means that if all other tests are negative, they assign the label of “IBS”…which to me means that they don’t know the real cause of the problem.

Finally, out of desperation, I looked to natural alternatives. I read up on the benefits of flaxseed, and I was intrigued. I began to incorporate ground flaxseed (very high in omega-3 fatty acids) into my diet, and my symptoms reduced. I was absolutely amazed! This propelled me into alternative medicine, and I now have a Master’s degree in Holistic Nutrition.

Although dietary changes did bring some relief, I still struggled with prolonged menstrual bleeding that lasted up to fourteen days, spotting for several days after that, bad menstrual cramps, digestive problems during menstruation, passing extremely large blood clots, infertility (we tried for ten years with no luck), menstrual migraine headaches, and terrible PMS (mood swings in particular). I was eventually diagnosed with a uterine polyp via hysterosonogram. The actual procedure was not bad at all (I expected it to be painful). However, on our way home (about 15-20 minutes later), severe cramping started. We were stuck in horrible traffic, and I told my husband to pull over. The car next to us wouldn’t let us over which obviously made both of us mad. I thought I was going to vomit from the pain, but there was nothing my husband could do. Finally we were able to pull into a McDonald’s restaurant, and I had a huge bout of diarrhea which lessened the pain enough that I could get home. After this experience, I was convinced that my uterus was the problem. The polyp was removed through hysteroscopy, but even after this surgery, the symptoms continued.

Several years later, we moved to Texas. Finally, I came across a gynecologist who was empathetic to my situation. She suggested that I have an endometrial ablation to see if that would ease my symptoms, and I agreed to do so. This surgery is supposed to stop all bleeding as it burns the endometrial lining of the uterus. However, 24 hours after surgery, I began to bleed. Since this isn’t supposed to happen, I went to the hospital.

Emergency room physicians are sometimes not very good at performing gynecological exams as I found out later. During the exam, I was torn which caused me even more pain. I was fuming mad, and I can’t even describe the amount of stress and frustration that I felt at the time. Of course, the ER doctors couldn’t find any problem other than I was bleeding when I shouldn’t be bleeding. A lot of good that trip did for me!

The next day, I went back to see my gynecologist. When she examined me, she was very concerned. I remember her words: “Wow, this is way too much bleeding. This has never happened with any other ablation that I have done.” At that time, I asked for a hysterectomy, and she agreed.

I really was quite happy on the day of the hysterectomy in 2007. Finally, this uterus that has put me through hell is going to come out! The ovaries were left as I was still in my early forties, and my gynecologist didn’t want me to go into early menopause.

The follow-up visit with my gynecologist is one day I will never forget. She came into the room and FINALLY explained to me why I had so much pain over all those years. I had severe diffuse adenomyosis with fibroids. She went on to explain that this condition cannot be definitively diagnosed prior to hysterectomy and that it could explain all of my issues over the past seventeen years. Needless to say, I couldn’t have been happier. The next day, I sent her flowers, thanking her for finally finding the cause of my pain.

Since my hysterectomy, ALL of my symptoms have completely resolved. I have not had any attacks since that day.

If you would like to read more details of my adenomyosis journey, I have written a book called “My Hormones are Killing Me: My Struggle with Adenomyosis and Estrogen Dominance” by Maria Yeager. It is available for purchase on Amazon. I hope my story will help other women out there by letting them know that they are not alone. For more information on adenomyosis, please visit my website at http://www.adenomyosisfighters.com. Also, please feel free to contact me via my website if you have any questions. I am very passionate about this cause, and I will do my best to help you as much as I can 🙂

Hugs to all those adenomyosis and endometriosis fighters and survivors out there!

You are all heroes!

Rebecca’s Fight Like a Girl Story

Please click on the link below to read a fantastic story that discusses adenomyosis and endometriosis and the difference between the two disorders. What struck me most was that she gave birth naturally (no pain killers) after suffering from endometriosis for many years, and she said that the pain from childbirth paled in comparison to endometriosis pain. It is important that the general population read stories like this so they can understand the degree of pain associated with these uterine disorders. Thanks, Rebecca, for telling your story!

Source: Rebecca’s Fight Like a Girl Story (Endometriosis, Adenomyosis)

Endometriosis and the Bowel

This is a great article from the site, Bloomin’ Uterus. Great information!

As you may know, Endometriosis is not limited to just your reproductive bits & pieces.  It can implant, grow, and fester in many places; the bowel included.  But what does that mean? How do you…

Source: Endometriosis & The Bowel

Advice to Adenomyosis Sufferers: Try Chemical-Free Makekup

Did you know that adenomyosis has been linked to estrogen dominance? Estrogen dominance occurs when there is not enough progesterone in a woman’s body to counter the effects of estrogen. This is a fairly recent finding. In the past, doctors would do simple hormone testing and as long as the estrogen and progesterone levels fell into a specific range, the assumption is that everything was normal. However, research has shown that the ratio of progesterone to estrogen is vitally important. These two hormones can be in the “normal range” while the ratio between the two can actually be abnormal.

So, why do some women have estrogen dominance? Well, there can be many reasons, but one important one is the excessive exposure to dangerous chemicals in the environment that act like estrogen in the body. These chemicals are called xenoestrogens. They are referred to as endocrine disruptors as they can easily disrupt the delicate hormonal balance in a woman’s body.

There are many different xenoestrogens in the environment, and it is virtually impossible to avoid all of them. Some examples include petroleum products, pesticides, and herbicides. About a week ago, I walked into an office building and saw a sign in the grass which said that the lawn had been treated. So, we literally get bombarded with them the moment we walk out the front door.

However, we can reduce our exposure. Pthalates and parabens are commonly used in cosmetics, and these two chemicals are known xenoestrogens. Since I love makeup and wear it all the time, I decided to do some research on chemical-free makeup. I have found that Bare Minerals does not contain pthalates or parabens, so I ordered their foundation and lipstick. I absolutely love it! It covers my blemishes and sunspots so well, and I have actually had strangers comment on how good my face looks! The Moxie lipgloss is my absolute favorite – I can just feel the moisture soaking into my lips. So, I have thrown away all my Maybelline and CoverGirl cosmetics and have become a loyal customer of Bare Minerals.

I was super-excited when I saw a segment on Fox News several days ago in which a doctor urged women to explore using chemical-free makeup. He explained how these xenoestrogens were endocrine disruptors and how it would be in the best interest of our health to go chemical-free. I have a feeling that this line of thinking is going to become quite popular as people begin to realize the dangers of parabens and pthalates.

There are so many choices for makeup out there. If you suffer from adenomyosis, it would be a good idea to check out makeup that is pthalate- and paraben-free as this will reduce your exposure to the dangerous xenoestrogens. For an in-depth discussion about estrogen dominance, xenoestrogens, and adenomyosis, be sure to look for my upcoming book which will be out by the summer of 2016.

Big hugs to all my adenomyosis sisters and warriors out there!

I Hear You

I hear you.

I know what it is like to have abdominal pain that is so severe you can’t stand up straight…pain that feels like someone is reaching right into your abdomen and squeezing as hard as he/she can….pain that causes intense nausea and vomiting…relentless pain that doesn’t let up for hours. I feel your pain.

I know what it is like to bleed continuously for over two weeks…bleeding that is so heavy you soak a maxi pad in less than an hour….bleeding that causes you to become so weak that you can barely get out of bed to go to the bathroom….so much blood loss that you get migraine headaches and pass clots as big as the palm of your hand…bleeding that causes so much fatigue that you can barely make it through the day, many times skipping meals because all you want to do is sleep. I feel your weakness.

I know what it is like to go to a doctor and being told that it’s all “normal”….being told that you need to see a psychologist….being brushed aside because you’ve been to the doctor multiple times with the same complaint…having people think you are making it all up because the doctors can’t find a cause of your pain…hoping that the doctors find cancer – just so you can finally have a diagnosis…living without a diagnosis for over ten years or even longer…living with people around you that have no sympathy for your situation. I feel your frustration.

I know what it is like to never know when an attack will hit you….wondering if you will make it to your destination before the pain starts…waiting in an airport and looking around to see if a bathroom is nearby in case you need it…getting stuck in rush hour traffic and having a panic attack because you are afraid the pain might start while you are stuck…trying to “suck it up” so you can get through your day and not take more sick time. I feel your anxiety.

I know what it’s like to wait for yet more gynecological tests….waiting to see if they will find something life-threatening….waiting for hours for your surgery to begin…staring at the ceiling all night before the surgery, unable to sleep…the mild nausea and racing heart as you wait for the surgical techs to bring you back for yet another surgical procedure. I feel your fear.

I hear you. I hear you loud and clear because I’ve been through it. Women who suffer from adenomyosis and endometriosis are true warriors. They know real pain. They know real frustration. They know real anxiety. They know real fear. When you are in the presence of these amazing women, know that you stand among some of the strongest women alive. There is nothing or no one who will be able to take these women down after struggling with adenomyosis. We will defeat this disorder. It’s going to be a long and tough mountain to climb, but I am determined to climb it and won’t stop this fight against adenomyosis until my final breath. We will find a cure! Hang in there, warriors!

*Adenomyosis: A Significantly Neglected and Misunderstood Uterine Disorder is now available on Amazon. See my author website at http://www.mariayeager.com for more information.

Questioning the Results of a Sonohysterogram

Due to many requests, I am currently working on publishing my book, “My Hormones Are Killing Me – My Struggle With Adenomyosis and Estrogen Dominance” as an e-book. I have to re-format the book for Kindle, so I am basically reading it as I re-format. It was originally published in 2012. This book is a re-cap of my seventeen year struggle with the disorder which finally ended in 2007 after my hysterectomy. Since writing this book, I have done a lot of research on the disorder and have recently published my second book which looks at all of the current knowledge and research. So, today I know much more about adenomyosis than I did back in 2012.

As I was re-formatting today, I read my ultrasound, sonohysterogram, and hysteroscopy notes that were done when I had a uterine polyp in the early 2000s. The ultrasound, which was done first, noted an endometrial thickness of 5 mm. Thickness of the endometrium varies throughout a woman’s cycle, but in general, this falls into the normal range. Please note, as I discuss in my current book, that it has now been found that it is of utmost importance to look at the thickness of the junctional zone, or JZ, in particular on MRI to identify adenomyosis. I’m quite sure that at that time, they didn’t look at the JZ.

My sonohysterogram report (done after the ultrasound) stated that my endometrium appeared normal with a thickness of 1-2 mm. A thickness of 1-2 mm usually is seen during menstruation, and I wasn’t menstruating – I was mid-cycle. That was a big red flag to me as I re-read the report. Other than the polyp, the report stated that everything appeared normal.

However, about a month after the sonohysterogram, I had a hysteroscopy to remove the polyp. The hysteroscopy report stated that I had a bicornuate uterus, and the surgeon was not able to accurately visualize the left horn of my uterus. The polyp was successfully removed but it begs the question: Why wasn’t the bicornuate uterus picked up by sonohysterogram? A sonohysterogram is touted for being about 90% accurate for picking up uterine abnormalities of all kinds, including a bicornuate uterus.

So….1-2 mm endometrial thickness and no mention of a bicornuate uterus? Hmmm. As you can see, I question everything. I have learned to do this not only because of my ordeal with adenomyosis, but also because I worked in the medical field for about twenty years. Although people in this field are quite diligent, we are all human. Mistakes are made in the medical field, and doctors and radiologists are not immune to this problem.

This also drives home the point that I have made in previous posts and on my website, Adenomyosis Fighters. The ability to be able to properly diagnose adenomyosis is entirely dependent on the skill of the doctor or radiologist. If the doctor who performed the sonohysterogram failed to pick up a bicornuate uterus, do you think he would be able to pick up adenomyosis? A bicornuate uterus is a rather large and  much more obvious abnormality compared to adenomyosis.

It is imperative that doctors and radiologists update their current knowledge on adenomyosis. Even though I’ve said this over and over again, to this day, I STILL hear patients tell me that their doctors don’t know much about adenomyosis. In my most current book, I point out the following statement made by researchers Owalbi and Strickler:

    “Adenomyosis is the addendum to textbook chapters on ectopic endometrium: it is a      forgotten process and neglected diagnosis.”ª

To learn more, please visit http://www.adenomyosisfighters.com.

ªOwalbi, T. O. & Strickler, R. C. (1977). Adenomyosis: A Neglected Diagnosis. Obstetrice and Gynecology, 50(4), 424-7. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/904805