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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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 Treatments

Currently, the only treatment for complete resolution of symptoms is hysterectomy.  However, some progress is being made in the treatment of adenomyosis.  Check out the possible treatments below for more information.

Note: The Adenomyosis Information Network does not promote or recommend any of the following treatments. This information is given FYI so that you may be prepared when going through your treatment for adenomyosis. Please know that there can be side effects and/or complications from any of the treatments or medications below.

NSAIDS

Medications such as ibuprofen (Advil, Motrin) and Aleve are examples of NSAIDS.  These medications block prostaglandins such as COX-2 and have been shown to be effective with menstrual pain.  However, if the adenomyosis is severe, these medications may not be sufficient.  In my case, the adenomyosis was so diffuse and severe through the uterine muscle that these medications were ineffective.  If that is your case, you may want to talk to your doctor about stronger pain relievers and/or some of the other options below.

Progesterone cream

The use of natural progesterone cream has shown some promise in the treatment of adenomyosis.  Dr. John Lee has coined the term estrogen dominance and has developed his own natural progesterone cream.

Continuous birth control therapy

Using continuous birth control therapy can be very effective in treating symptoms of adenomyosis.  This involves being on the hormone pills continuously (no placebo pills during the week of menstruation) except about 4 times per year.  With this therapy, you will usually have about 4 menstrual cycles per year instead of once per month.  It is recommended that if this therapy is administered, a progesterone dominant birth control pill is used for the treatment of adenomyosis.

Progesterone (levonorgestrel)-releasing IUD

The levonorgestrel releasing IUD may be helpful in that it has been shown to reduce VEGF expression.  This device can be easily inserted and can last up to 5 years.  A speculum is used and a small tube is threaded into the uterus.  The IUD is placed into the uterus, and a small string remains in the vaginal canal so the doctor/patient will know that it remains in the correct position.  The patient may feel some discomfort after insertion including cramping and back pain.  Other side effects include possible pelvic inflammatory disease (PID) and pregnancy complications in case of IUD failure.  Benefits include lighter periods and a decrease in menstrual cramps.

Note: I regularly read comments on adenomyosis support sites and have heard from many women that they have had severe pain when using an IUD. I therefore feel compelled to pass this information on through this website. Although the literature reports that this type of IUD may be effective in reducing adenomyosis symptoms, there have also been actual patient reports of severe pain.

Progestogen tablets or injections

Danazol

This drug inhibits steroid hormone production, reducing estrogen secretion.  It may also increase testosterone production.  Side effects include weight gain, increased body hair, oily skin, reduced sex drive, hot flashes and an increase in blood sugar.

Aromatase inhibitors

Aromatase inhibitors are a newer class of drugs and are typically used for breast and ovarian cancer in post menopausal women.  Aromatase synthesizes estrogen, and these drugs block receptor sites for aromatase which in turn decreases the production of estrogen.  Examples of aromatase inhibitors include exemestone (Aromasin), anastozole (Arimidex) and letrozole (Femara).  Side effects include hot flashes, vaginal dryness, infertility, foggy thinking, muscle and joint pain, osteoporosis, arthritis, adrenal insufficiency, liver disorders, kidney failure and possible heart problems.

Gonadotropin-releasing hormone (GnRH) analogs

These drugs basically modify the release of lutenizing hormone(LH) and follicle stimulating hormone (FSH).  These hormones control ovulation and menstruation.  And example of this type of medication is Lupron.  It is given either by injection or intra nasally.  They have been used in the treatment of endometriosis, leiomyomas (fibroids), infertility, dysfunctional uterine bleeding, premenstrual syndrome (PMS), and hormone dependent tumors.  In one study, these drugs were linked with a decrease in the thickness of the myometrial JZ (see “Causes”).  Examples of GnRH analogs include Lupron, Synarel, Zolodex, cetrorelix (Cetrotide), and ganirelix.  Side effects include menopausal type symptoms such as hot flashes, vaginal dryness, headaches, mood swings, decreased sexual drive, and nausea.

Uterine artery embolization

This procedure has been shown in several studies to be helpful in the treatment of both endometriosis and adenomyosis.

The Osada procedure

Dr. Osada has developed a new procedure that help women with adenomyosis retain uterine function. This may be a viable alternative to hysterectomy.

Pentoxifylline

Also known as Trental or Pentoxil, this medication is typically prescribed for those suffering from intermittent claudication, vascular dementia or other circulation problems.  It improves blood flow throughout the body.  Some recent studies have shown that this drug may be promising in the treatment of endometriosis and/or adenomyosis.

MRgFUS

Another promising radiological exam that is actually able to pick up diffuse adenomyosis is now available.  It is called magnetic resonance guided focused ultrasound (MRgFUS).  This is so exciting to see a test that can actually pick this disorder up; however, my concern is that women generally won’t be able to access this technology due to cost and insurance requirements.  That is why it is so important for EVERYONE to be aware of this condition and to know that this technology is out there.  MRgUS is now being used in the treatment of fibroid tumors, but it is also effective in the treatment of adenomyosis.  It has been reported that 70-90% of cases will be picked up using magnetic resonance imaging (MRI).  Please educate everyone you know about MRgFUS!