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.

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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..

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 🙂

Looking for clean products that may help in your fight against adenomyosis? Check out these great products (click on images to purchase through Amazon):

Endometriosis in the psoas major muscle

A very interesting article on endometriosis that was found in the psoas muscle. Just another case that shows endometriosis can be found in just about any area of the body. Recommended reading….thanks to Lisa at Bloomin Uterus!!

An article was published on October 30, 2016 in the International Journal of Clinical and Experimental Medicine, which caught my interest.  We know that Endometriosis can grow in a lot of places ot…

Source: Endometriosis in the psoas major muscle

Endometriosis and Suicide – an Excellent Article by Rachel Cohen

WEDNESDAY, MARCH 12TH, 2014 / RACHEL COHEN

I wanted to die last night. There, I said it. Ugly thing to say, right? Might even make you want to inch just slightly away from me. Feel free to. Sometimes I want to inch away from myself as well. But before you judge, try to listen to what I have to say. Assess my words with an open, empathetic heart, and think about the way you would feel if you were in my shoes. It may sound as though I am trying to pull at your heartstrings, to make you feel depressed for me and my life, but I am not.  I just want you to understand what it’s like to be a woman who suffers from endometriosis. I just want you to understand. These are the realities of living with endometriosis.

Dealing With the Physical Reality of Endometriosis

Pain. Imagine your abdomen and pelvis are encased in barbed wire so that the spikes of the wire are actually piercing them, stabbing them sharply every time you move. Now imagine that the barbed wire is actually attached to some sort of electrical current that shoots electricity through the spikes, increasing the intensity of each penetration. Next, add a machine that alternates shooting the electrical spikes into the body and pulling them out again in random intervals, thus adding a surprise and shock factor to the pain. Lastly, in addition to the shocking electrical stabbing pain, there are deep, underlying waves of pain that crush and release the muscles, causing a cramp so excruciating it takes your breath away. Imagine living with that agony on an everyday basis.

I live with a veil of pain draped over my body. Not stubbed toe pain, sprained ankle pain, or even broken heart pain. The pain that I feel every day is an all-encompassing event, specially formulated to break both my body and my spirit. It is a visceral and animalistic torture that brings me to my knees in surrender. That is the reality of living with endometriosis.

Fatigue. I want you to try to recall a night during which you slept very little. Maybe you had a party the night before, or perhaps you were up doing work. Now think about the way both your body and mind felt the following day. Did you function as well as usual? Were your movements as fluid, your mind as sharp? Or did it feel as though you were moving through quicksand, your brain wrapped in cellophane? How would you deal if you felt like that every day?

I live with a crushing form of fatigue that makes my every move devastatingly cumbersome. I often feel as though I am nine months pregnant with quadruplets, constantly carrying around an enormous weight that is attached to my body, sucking whatever strength I have left.  My limbs feel like they are wrapped in lead, and my eyelids covered in cement. All my body wants to do is sleep, every minute of every day, but it can’t. My life doesn’t take a nap when I do.

The Emotional Reality of Endometriosis: Depression 

I wish I could say the physical aspects of endometriosis are all that plague me. Unfortunately, this is not the case. You see, for every physical malady that plagues women with endometriosis, there is an emotional component that is equally, if not more, devastating.

Guilt. Guilt is like an itchy woolen sweater that is two sizes too small: suffocating, uncomfortable, and in desperate need of being shed. It permeates the many aspects of my life and makes me miserable. I feel guilty for having endometriosis to begin with, as I sometimes wonder what I did wrong to deserve it. I also feel guilty that I cannot give my husband the emotional or physical attention he needs. I feel guilty that my close friends and family have to spend their days taking care of me when I am incapacitated and that I spend my days idling around the house while they work hard. I feel guilty for canceling plans that I made weeks ago and the lack of ability to make plans to begin with.  Guilty that I cannot be a good friend to others. And guilty when I think of my children who I cannot take care of the way they deserve to be taken care of. Finally, I feel guilty that I cannot give my husband any more precious children due to the hysterectomy I had that was not even successful.

Inadequacy. Due to the symptoms of endometriosis, I often feel inadequate and obsolete. I feel like I lack the ability to do anything important, like my job, or household work.  Relationships with my spouse, kids, parents, siblings and even my friends are often placed on the back burner as I struggle daily to merely exist. This inability to maintain relationships, keep my job, take care of myself or family members or even be intimate with my spouse overwhelms me with the feeling that I am incompetent, useless, and valueless. Sometimes I even feel as though my existence on this earth is pointless if I can’t be a functioning member of society. These feelings of incompetence sometimes also lead to depression, embarrassment, guilt, and rage.

Anger. Imagine being told that the agonizing pain you feel every second of every day is not real, that you are making a big deal out of nothing. How would you feel?  Anger? Rage? Imagine being told that you are a “druggie” when you ask your doctor for pain medication to ease the misery you are dealing with. Anger again? Or how would you feel towards “God” or “The Universe” if you let your mind wander to the opportunities you would have if you didn’t have endometriosis? It’s hard not to be furious when you think of everything you are missing or losing due to this disease. What if you’ve tried for years to get pregnant with no success or just miscarried the child you’ve wanted all of your life. And imagine being so debilitated by your symptoms that you are unable to perform your everyday activities. How would you feel? Frustrated? Angry? That’s exactly the way I feel.

Jealousy. For me, jealousy rears its ugly head when I see other people performing activities that I am too sick or fatigued to perform. It is hard not to be jealous of a healthy person when I am stuck in bed, too exhausted to move, or lying on the couch, writhing in pain. Just seeing someone go food shopping without discomfort causes jealousy within me, as I would do anything to be able to perform everyday activities without pain. Jealousy is also inevitable when we I see other women, basking in their pregnant glow, and I know that I will never again carry a living being inside of me.

Loneliness. Yes, I am extraordinarily lucky to have a wonderful support system in my life, and I am enormously thankful for that support, but there is a profound, hollow loneliness that sometimes overwhelms me when it occurs to me that despite their best efforts, my loved ones cannot fully understand what I am going through. Even my sisters with endometriosis cannot completely comprehend my individual suffering, as every person suffers uniquely. Therefore, I am sometimes led to feel as though no one understands me, and there is no thought lonelier than that.

Loss. Endometriosis is a disease that is full of loss and mourning. On a basic level, I mourn the loss of a “normal”, illness-free life. A life that is chock-full of boring, everyday activities and errands. I am no stranger to mourning or to loss. Having a miscarriage created a deep, inconsolable hole within me that will remain with me forever.  But most of all, having a hysterectomy has caused a ubiquitous feeling of loss within me as I mourn, not only the loss of potential children, but the loss of a part of my womanhood.

Depression. Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. For me, depression is caused by many different things. Being alone all the time, not being able to spend time with family and friends due to pain, fatigue or other symptoms is depressing. Excruciating pain is depressing. Feeling like my illness is misunderstood is depressing. Feeling like I need to be embarrassed of my illness is depressing.  And lastly, the thought that there might not be any hope for my recovery because there is no tangible hope for a cure, that I might have to deal with the incapacitating symptoms of endometriosis for the rest of my life, is the most depressing thought of all. That is why I wanted to end my life. Yes, I contemplated suicide. Like so many of my sisters with endometriosis, I hit bottom. I was tired of the pain, tired of the despair, tired of the guilt, and tired of being tired. But mostly, I was and am, just tired of the pain.

Living with Endometriosis is Horrendous

Now that I have exposed my vulnerable and aching heart to you, my friend, you have a choice to make. I will never blame you if you choose to stay away from my complicated and sometimes depressing life. Like I said, if I had the choice, I would probably do the same. But let me say one last thing before you make your decision. Life with endometriosis is horrendous, but women with endometriosis are not. We are strong, determined women who fight fiercely and love fiercely. We try our best. We are not lazy or pathetic and we don’t give up. We may not sugarcoat the painful emotions and terrifying symptoms that we deal with. Our honesty may even frighten you. But when you meet a woman with endometriosis, you are meeting a proud, indomitable warrior. A soldier who goes into the fire on a daily basis and emerges with a thicker skin time and time again. A woman who should not be pitied for her pain, but admired for her ever-present resilience and strength. That, my friend, is who I am. Take me or leave me. It’s up to you.

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

Adenomyosis and Endometriosis: Myth vs. Fact

I have recently read some online articles about adenomyosis and endometriosis and have noticed quite a few misconceptions about these disorders. Since I recently wrote a book on adenomyosis after months of research into clinical studies, I feel it is necessary to write a myth vs. fact blog on these disorders.

Many misconceptions come from old information. Some of these inaccuracies are a result of a failure of medical professionals to update their current knowledge. I hope the following information will clarify the facts on these two disorders.

Myth: Adenomyosis and endometriosis are the same disorder.

False. Adenomyosis and endometriosis are similar, but they are not the same disorder. Both involved misplaced endometrial tissue (the tissue that is shed each month in the form of a menstrual period). In endometriosis, these endometrial implants are found outside the uterus on organs such as the bowel, bladder, and ovaries. Endometrial implants have even been found as far away as the brain. In adenomyosis, the misplaced endometrial tissue invades the uterine muscle and is confined to this area. It is important to note that many women suffer from both disorders at the same time.

Myth: Adenomyosis only affects women in their 40s – 50s.

False. This myth is rampant online. This used to be thought, but in recent years, this disorder is being recognized in much younger women. According to a 2013 study by Taran et al., “the clinical age at presentation of adenomyosis may be significantly earlier than previously thought and that early-stage adenomyosis might present a different clinical phenotype compared to late-stage disease.”¹ The reason for this change is due to the discovery of the difference in width of the junctional zone within the uterine wall (will be discussed later).

Myth: Pregnancy will cure both adenomyosis and endometriosis.

False. Pregnancy will only subdue symptoms due to fluctuations in hormone levels. Once the pregnancy is over, symptoms will return, sometimes worse than ever. Pregnancy is NOT an effective “treatment” for these disorders.

Myth: Adenomyosis/endometriosis is due to some kind of physical trauma earlier in the woman’s life.

False. This is a very antiquated belief that is completely false. Both disorders can now be seen clearly on imaging tests if the physician/radiologist is knowledgeable about the disorders. Bowel resections have been done on patients where the endometriosis has progressed through the bowel wall. Both adenomyosis and endometriosis can clearly be pathologically proven, so the idea that the disorders are linked to some kind of abuse has been proven to be false.

Myth: Adenomyosis can’t be diagnosed until hysterectomy.

False. If you go to a physician who is well-versed in adenomyosis diagnosis and treatment, he/she should be able to obtain a diagnosis prior to hysterectomy. As mentioned earlier, it has been found that the width of the junctional zone can indicate the presence of adenomyosis. The width of the junctional zone, visualized on MRI, varies throughout a woman’s cycle but in general, a normal width is 5-8 mm. Studies now show that a junctional zone width of 12 mm. or more indicates the presence of adenomyosis. In a 2011 study by Novellas et al., it was determined a thickness of the junctional zone of greater that 12 mm. indicates adenomyosis with an accuracy of 85 percent and a specificity of 96 percent.² A study by Dueholm et al. states that the use of transvaginal sonography and MRI together gives the most accurate results in the diagnosis of adenomyosis.³

Myth: Adenomyosis and endometriosis can be cured through hysterectomy.

This is only partly true – false for endometriosis and true for adenomyosis. Since adenomyosis involves only the uterus, removing the uterus will cure the condition. Since endometrial implants are found outside the uterus in endometriosis, removing the uterus will not cure the condition. Many adenomyosis sufferers become very confused when their symptoms do not resolve after having a hysterectomy, which is understandable. An important thing to remember is that in a lot of women, both adenomyosis and endometriosis are present. If your symptoms persist after having a hysterectomy for adenomyosis, you have probably been suffering from both adenomyosis and endometriosis.

For more in-depth information, including the results of recent research, please check out my book, Adenomyosis: A Significantly Neglected and Misunderstood Uterine Disorder by Maria Yeager. It is available on Amazon in both paperback and Kindle formats.

¹Taran, F.A., Stewart, E. A., & Brucker, S. (2013). Adenomyosis: Epidemiology, risk factors, clinical phenotype and surgical and interventional alternatives to hysterectomy. Geburtshilfe Frauernheilkd, 73(9), 924-931. doi: 10.1055/s-0033-1350840

²Novellas, s., Chassang, M., Delotte, J., Toullalan, O., Cheallier, A., Bouasis, J. & Chevallier, P. (2011). MRI characteristics of the uterine junctional zone: From normal to the diagnosis of adenomyosis. American Journal of Roentgenology, 196(5). doi: 10.2214/AJR.10.4877

³Dueholm, M., Lundorf, E., Hansen, E. S., Sorensen, J. S., Ledertoug, S., & Olesen, F. (2001). Magnetic resonance imaging and transvaginal ultrasonography for the diagnosis of adenomyosis. Fertility and Sterility, 76, 588-594. doi: http://dx.doi.org/10.1016/Soo15-0282(01)01962-8