My story – an interview with The Center for Innovative GYN care

https://innovativegyn.com/blog/one-womans-journey-through-adenomyosis/

Adenomyosis Fighters Presents: An Interview with Dr. Natalya Danilyants from The Center for Innovative GYN Care, January 19, 2021

Maria Yeager, Founder of Adenomyosis Fighters

Dr. Natalya Danilyants, Center for Innovative GYN Care

On January 19, 2021, I had the pleasure of interviewing Dr. Natalya Danilyants from the Center for Innovative GYN Care (CIGC).

CIGC is an advanced laparoscopic gynecological surgical practice. It is not a regular OB/GYN practice but rather one that specializes in innovative minimally invasive gynecological surgery. The surgeons have far more experience in this type of surgery than a regular OB/GYN. These world-renowned physicians specifically focus on the surgical treatment of fibroids, endometriosis, adenomyosis, and other complex gynecological conditions. Two surgical procedures, Dual Port GYN® and LAAM®, were developed by these surgeons, and their work has been published in well-known medical journals such as The American Journal of Obstetrics and Gynecology, The Journal of Obstetrics and Gynaecology Research, and The Journal of Minimally Invasive Gynecology.

The following are the questions that I asked Dr. Danilyants followed by a summary of her responses (these are not actual quotes):

Q:  What is adenomyosis, and how does it differ from endometriosis?

A:  Adenomyosis is basically endometriosis of the uterus. Endometriosis occurs outside of the uterus while adenomyosis occurs within the muscle of the uterus.

Q:  Two of the major symptoms of adenomyosis are heavy menstrual bleeding and pain. What are some of the other major symptoms that you see in your practice related to this condition?

A:  Fertility issues are a big problem. A lot of these women struggle with this issue, and many of these women suffer miscarriages. Bloating is an issue with adenomyosis, but this symptom is also seen in women with endometriosis and fibroids, so it is a rather nonspecific symptom.

Q:  What is the difference between an adenomyoma, focal, and diffuse adenomyosis?

A:  Diffuse adenomyosis is spread throughout the uterus. There are lots of endometrial glands found throughout the myometrium (uterine muscle). An adenomyoma and a fibroid can look similar; however, an adenomyoma doesn’t have a distinct border while a fibroid does. Because of this, it can be more difficult to completely remove an adenomyoma compared to a fibroid. As an example, if you spill paint on carpet, it seeps into the carpet, and the only way to fix it is to cut out a large portion of the carpet. If you drop playdough on the carpet, you can just pick it up without damaging the carpet. This is the difference between an adenomyoma and a fibroid. As a side note, it is very common for women with fibroids to also have adenomyosis.

Q:  Would you comment on risk factors such as age of patient and prior surgery?

A:  Multiple C-sections are a big risk factor for this disorder. If a woman has symptoms like heavy bleeding and pain, and she also has a history of multiple C-sections, I immediately think of adenomyosis. Although older women with a history of prior surgery are at increased risk of adenomyosis, it has recently been noted that younger women may also be affected. In fact, younger women without a history of prior surgery have also been diagnosed with this disorder.

Q:  What is the best way to diagnose this disorder?

A:  Magnetic resonance imaging (MRI) is the best way to diagnose adenomyosis. This imaging tool looks at the thickness of the junctional zone. A thickness of greater than 10-11 mm is generally diagnostic. Subendometrial cysts and/or pockets of blood may also be visible. Transvaginal ultrasound (TVUS) may be useful, but it depends on the extent of the disease and the experience of the sonographer.

Q:  Are any other abnormalities observed along with adenomyosis?

A:  Fibroids and endometriosis are commonly observed in patients with adenomyosis. Endometrial polyps are very common benign endometrial growths, and I don’t consider them to be commonly associated with adenomyosis.

Q:  Is adenomyosis considered to be an autoimmune condition?

A:  Not exactly. The body isn’t attacking itself but is rather having an inflammatory reaction to the presence of adenomyosis.

Q:  Would you please comment on CA125 levels in adenomyosis? (I explained that when I mentioned CA125 levels are elevated in adenomyosis in my support group, some of the members became anxious because elevated CA125 levels can be an indication of ovarian cancer.)

A:  CA125 levels are usually mildly elevated in adenomyosis; however, it is also mildly elevated in other conditions such as endometriosis and fibroids. I do not think the blood test is necessary in women with suspected endometriosis or adenomyosis. In these cases, CA-125 will likely be mildly elevated, and not only does it create anxiety for the patient, but it is also not helpful in the treatment or decision-making process.

Q:  Would you discuss the best treatment options for adenomyosis?

A:  The only cure for adenomyosis is hysterectomy. Other treatments are just temporary solutions. If a patient is young and wants to preserve fertility, pharmaceutical treatments such as birth control pills, GnRH analogs, aromatase inhibitors, progestins, and the Mirena are all options, but they are only temporary solutions. Eventually symptoms will get worse without hysterectomy. GnRH analogs and aromatase inhibitors also put patients in temporary menopause which results in significant side effects.

Q:  Is uterine artery embolization (UAE) helpful?

A:  No. This procedure is not helpful, especially in diffuse adenomyosis. UAE cuts off blood supply to portions of the uterus. For example, UAE can cut off the blood supply to a fibroid which will cause it to shrink. However, in women with diffuse adenomyosis, the blood supply would have to be basically cut off for the entire uterus. This is just not possible.

Q:  Is there any reason for a woman with adenomyosis to undergo an endometrial ablation? (I explained to Dr. Danilyants that I failed an endometrial ablation and have learned since that time that in general, an endometrial ablation is not recommended in women with adenomyosis.)

A:  No. This procedure has been noted to cause severe pain in women with adenomyosis, so I would not recommend performing an endometrial ablation on women with adenomyosis.

Q:  In general, what type of hysterectomy is recommended for women with adenomyosis?

A:  It depends on the patient. If the woman with adenomyosis has a history of ovarian cancer in her family, for example, I would remove the ovaries along with the uterus and fallopian tubes.  If the patient only has adenomyosis without any other history of reproductive issues, I will take the uterus and the fallopian tubes only.

Q:  In your opinion, is there any use for bioidentical progesterone cream in the treatment of adenomyosis?

A:  Not really. This is generally produced by compounding pharmacists, and there are many times problems with dosage. It’s not a good idea to try these alternative hormonal treatments without supervision by a doctor. There was a woman I knew who tried using testosterone pellets to help treat her reproductive issues. She eventually developed male-pattern baldness. Little did she know that she was creating this problem herself by taking these pills!

Q:  Have you heard about any benefit of using omega-3 fatty acids to help reduce symptoms of adenomyosis? (I explained that I had success in reducing pain by taking flaxseed.)

A:  No, I haven’t. But alternative therapies and diet changes can help. Our wellness center uses alternative therapies to help women with reproductive disorders such as adenomyosis. It is important for women to maintain a healthy weight because obese women produce more estrogen. Testosterone (woman do produce a small amount of this hormone) is converted into estrogen in fatty tissues; therefore, heavier women will produce more estrogen which can exacerbate adenomyosis.

Please note: Nutritional counseling is available through CIGC and can be done virtually. In order to take advantage of this, the patient needs to have a consultation with Dr. Danilyants so that a treatment plan can be developed.

Q:  Please explain the Dual Port GYN® procedure that is done at CIGC.

A:  The Dual Port GYN® refers to laparoscopic retroperitoneal hysterectomy. During a regular laparoscopic hysterectomy performed by an OB/GYN, three incisions are made – 1 near the belly button (this is where the camera is inserted), and two on each side of the abdomen. The two incisions made on each side of the abdomen cut through muscle and may cut small blood vessels. This results in pain and bleeding. The Dual Port GYN® uses 2 incisions – one at the belly button and one low on the abdomen. The cuts are made in between muscles instead of through them. This results in less pain and bleeding and a shorter recovery time. In addition, this outpatient surgery had a 0% conversion rate to open surgery in a recent study.

Q:  Please explain the LAAM® procedure that is done at CIGC.

A:  LAAM® stands for laparoscopic-assisted abdominal myomectomy. This surgery is performed for the removal of fibroids. It is a combination of a laparoscopy and open surgery. LAAM® is like the Dual Port GYN®, but the incision low on the abdomen is a little bit larger. Through this incision, I can feel the uterus to locate all the fibroids. Surgeons are not able to do this during a regular laparoscopy. In fact, many fibroids are missed during a regular laparoscopy whereas most if not all fibroids would be able to be located and removed during the LAAM® procedure. In addition, many women with very large uteri are often told that surgery is not an option for them. We can operate on a large uterus with the LAAM® procedure, so surgery is now available for these women.

Q:  Would you comment on your Second Opinion GYN Program?

A:  We are always willing to give second opinions to patients who are unsure of their diagnosis. This can be done virtually or in person. Our goal is to provide women with the information that they need to make the best health care decision for them, even if that means not having their procedure with us.

Q:  Would you comment on advanced procedures that are done at CIGC?

A:  We can remove bowel adhesions that have formed as a result of these complex gynecological problems, and we also can perform bowel and bladder repair.

I confirmed the location of CIGC office with Dr. Danilyants. They have four offices:

                Rockville, MD

                Reston, VA

                Manhattan, NY

                Montclair, NJ (just across the state line to New York)

For more information and/or to set up a consultation with CIGC, please visit www.innovativegyn.com or call 1-888-SURGERY.

I want to thank Dr. Natalya Danilyants, Mysba Regis, Andrew Tran, and the rest of the CIGC team for setting up this interview and for partnering with Adenomyosis Fighters to bring more awareness to adenomyosis!

Dr. Natalya Danilyants

Natalya E. Danilyants, M.D., is board-certified in gynecology. Along with Paul MacKoul, M.D., Dr. Danilyants developed and perfected the DualPortGYN^® and LAAM^® advanced gynecological surgical techniques used to treat complex GYN conditions such as endometriosis and fibroids. Dr. Danilyants received her fellowship training in advanced retroperitoneal laparoscopic surgery through the exclusive Johnson & Johnson/Ethicon Endo-Surgery (EES) fellowship program, which offered fewer than 10 positions nationally. Dr. Danilyants was accepted into the EES program after completing her residency at the George Washington University in Washington, D.C., where she served as chief resident. Through the fellowship program, Dr. Danilyants practiced an additional three years at the Women’s Surgery Center (WSC). At WSC, Dr. Danilyants was the director of advanced retroperitoneal laparoscopic surgery and developed a very successful practice, performing more than 4,000 GYN surgeries for all indications.

Experience

Dr. Danilyants is a co-founder of The Center for Innovative GYN Care^® (CIGC^®). She is also the former division chief of minimally invasive GYN surgery at Inova Fair Oaks Hospital in Fairfax, Virginia, as well as a former assistant clinical professor in the Department of Obstetrics and Gynecology at George Washington University Hospital in Washington, D.C. She received numerous awards for her exceptional surgical skill and care, including the Outstanding Laparoendoscopic Award in 2007, the AAGL (American Association of Gynecologic Laparoscopists) Award for Special Excellence in Endoscopic Procedures in 2008, and the Center of Excellence in Minimally Invasive Gynecology Designated Surgeon in 2012. She was honored to receive a Patient’s Choice Award and Compassionate Doctor Recognition by her patients for her excellent care and compassionate bedside manner. She was named a Rising Star in the 2013 Super Doctors Edition of The Washington Post Magazine.

Education

• Medical School: Louisiana State University School of Medicine, New Orleans, 2004
• Residency: George Washington University Hospital, Washington, D.C., 2008
• Fellowship: Ethicon Johnson & Johnson Fellowship in Minimally Invasive Surgery, Washington, D.C., 2009
• Board Certifications: Gynecology 

Publications

Our board-certified GYN surgery specialists have been published in national and international scholarly journals and have proven the effectiveness of their innovative DualPortGYN and LAAM techniques.

Supracervical Hysterectomy

I decided to write this blog because I have had several people who were confused as to how I could still have light bleeding after my my hysterectomy. The reason is because I had a supracervical hysterectomy. Let me explain.

There are many different types of hysterectomies. Below are some examples:

1. Total abdominal hysterectomy – the uterus and cervix are removed. Fallopian tubes and ovaries may or may not be removed depending on the individual case.
2. Radical hysterectomy – this type is more extensive than the total because it also removes the upper part of the vagina. It is usually done if cancer is present.
3. Oophorectomy – removal of the ovaries. It is usually done if there is a history of cancer or if cancer is present.
4. Salpingo-oophorectomy – removal of the ovaries and the fallopian tubes. It is usually done if there is a history of cancer or if cancer is present.
5. Supracervical hysterectomy – the uterus is removed, but the cervix, ovaries, and tubes remain.

So if someone has told you that she has had a hysterectomy, it is important to know what kind of hysterectomy it is if you plan on having an in-depth discussion about it. I don’t think I made that clear in my book, so I am sorry about that!

So let’s get into the details of a supracervical hysterectomy. This is the way it was explained to me:

There is no definitive “line” between the uterus and the cervix. The two tissues kind of intermingle with each other at the top of the cervix/bottom of the uterus where they meet – the cervical tissue and the uterine tissue are not clearly separate. So, when doing this kind of surgery, there is really no way to tell if all of the uterine tissue has been removed or if some of that tissue still remains at the top of the cervix which will remain. If uterine tissue is left at the top of the cervix, that tissue will continue to respond to hormonal stimulation from the ovaries since the ovaries still remain. This means that the uterine tissue left behind will continue to bleed.

Now, since the majority of the uterine tissue is gone, the bleeding is greatly reduced. In my case, I went from flooding for 3 days and regular bleeding for a total of 10 to 14 days before my supracervical hysterectomy to just spotting for about 3 days after the surgery. There is a HUGE reduction in the amount of blood lost after this kind of surgery.

Personally, if I had to do it over again, I would have told my surgeon to take my cervix because the spotting became annoying to me. The spotting wasn’t bad at all…it was just annoying. Little things like that annoy the crap out of me, so it got on my nerves quick…lol! But some women prefer to keep the cervix intact, and if that is what you want to do in your case, please know that the light bleeding/spotting after a supracervical hysterectomy is minimal. If you are used to flooding, this small amount of light bleeding should be a cake walk for you 🙂

Hope that helps to clear things up a bit!

Have a great day!

Brand New Book on Adenomyosis!!

New for 2020!!

Now available on Amazon:

Adenomyosis: The Women Speak

by Maria Yeager

This book contains the results of questionnaires that were posted in the Adenomyosis Fighters Support Group on Facebook over the course of 1 1/2 years. Hear what adenomyosis is really like from the women who are forced to deal with it on a daily basis!! Paperback and Kindle versions available.

 

 

 

 

Trump’s Environmental Policies May Hurt Women With Adenomyosis

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

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

During My Adenomyosis Struggle, My Non-Fat Diet Almost Killed Me!

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.

 

Top Ten Research Priorities for Endometriosis in the UK and Ireland

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 […]

via Research priority setting for endometriosis- the top ten questions announced! — The Endo The World?

My Hysterectomy Story

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!

Adenomyosis and Estrogen Dominance – Is There a Link?

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

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

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

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

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

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

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

I am going to address these statements one by one.

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

Here is what we know for sure through scientific studies:

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

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

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

 

 

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

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

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

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

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

 

 

 

 

 

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

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

Here’s some of the proposed budget changes:

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

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

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

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

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

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

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

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

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

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

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

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