I have published a brand new book in September 2022 called Invisible: A Journey Through Adenomyosis and Endometriosis!
Many years ago, I published my story in the book, My Hormones Are Killing Me. However, I felt it was necessary to publish my story again but in much more detail. I also wanted to include what it was like to deal with these disorders emotionally and mentally which I did not include in my previous book.
This book contains two parts. Part I is my detailed story, and Part II includes what the most recent clinical studies have shown in regards to these two disorders. In particular, I look into the possible connection between allergies and these disorders, the role of cortisol, the discovery of progesterone resistance, the possible role of dioxins in the development of these disorders, the link to potential bone problems and/or gallbladder disease and much, much more. Many women with adenomyosis are diagnosed with irritable bowel syndrome (IBS), and the differences between the two disorders are discussed in detail – the two disorders can be distinguished if doctors pay attention to the subtle signs! I also discuss a few new treatment options including uterine artery embolization done successfully on adenomyosis patients by Dr. Eisen Liang (Sydney Fibroid Clinic) and DualPortGYN – an effective hysterectomy procedure developed and performed by surgeons at The Center for Innovative GYN care.
PIck up a copy today! Find out what it is like to deal with these disorders, and keep on top of the most current research! Available on Amazon
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:
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!
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.
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.
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
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.
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:
Total abdominal hysterectomy – the uterus and cervix are removed. Fallopian tubes and ovaries may or may not be removed depending on the individual case.
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.
Oophorectomy – removal of the ovaries. It is usually done if there is a history of cancer or if cancer is present.
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.
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 🙂
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.
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..