This is the second part of the interview with Dr. Liang regarding the use of UAE in the treatment of adenomyosis. Dr. Liang has a 90 percent success rate at treating adeno through this procedure!!
Tag Archive | menstruation
Part 1 of interview with Dr. Eisen Liang, interventional radiologist at the Sydney Fibroid Clinic
Uterine artery embolization can be an effective treatment for adenomyosis. Dr. Eisen Liang explains how this procedure can help women with this uterine disorder:
Adenomyosis Fighters Presents: An Interview with Dr. Natalya Danilyants from The Center for Innovative GYN Care, January 19, 2021
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!
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.
Parabens & Endometriosis — Bloomin’ Uterus
Another excellent article from Bloomin’ Uterus. She mentions flaxseed also in this article and how she avoids it. I have always promoted the use of flax with endo and adeno as I had tremendous symptom relief during my struggle. However, as I recently discovered, there are some concerns with its use. After reading all the evidence, I still personally do promote the use of flax, and I will get into this in much more detail in a future blog. In the meantime, read up on parabens – it is really important to avoid the use of this type of xenoestrogen as much as possible! Thanks, Lisa, for another informative article!
What are Parabens? Parabens are chemicals used as preservatives in consumer products. Why are they Bad for Us? If you happen to suffer from Endometriosis, or any other estrogen-driven condition (like breast cancer), please be aware that parabens mimic estrogen. Just like soy. Just like flax. Parabens are an “endocrine disruptor,” which alters our body’s hormone […]
Reader’s Choice : Endometrial Polyps — Bloomin’ Uterus
Great article on endometrial polyps from one of my fav blogs – Bloomin’ Uterus! Endometrial polyps can occur with adenomyosis, and it is important to be educated on this disorder. I personally had a uterine polyp removed via hysteroscopy during the years that I struggled with adeno. I highly recommend this article – full of great info!
One of our local EndoSisters has recently been diagnosed with endometrial polyps, something I know absolutely nothing about. So what happens when I know nothing? I research! What is a polyp? A polyp is an abnormal overgrowth of tissue, usually a lump, bump, or stalky growth (hence the mushrooms above). They’re most commonly found in the colon, […]
Emotional Aspects of Adenomyosis and Endometriosis
Today I would like to address some common misconceptions about adenomyosis/endometriosis and how these misconceptions dramatically impact the emotional/mental well-being of its victims. I have heard and read so many comments – ignorant comments – by those who don’t have the disorder that dramatically add to the depression and anxiety that these women have to endure. Here are some examples:
- You need to go to a psychologist. You just need an antidepressant.
- They’re just bad cramps. All women go through it. Why can’t you?
- You’re just being a baby about it. You’re weak.
- It’s all in your head.
- Just get more exercise. Go to the gym and it will all get better.
- Your diet is to blame. If you ate better, you would feel better.
- It’s all stress related. You just need to relax.
OK, so let’s address these comments one by one.
- Adenomyosis is not a psychological problem. Anyone who tells you that it is doesn’t know what they are talking about. Years ago, this belief was prevalent, but today we know that adenomyosis and endometriosis are NOT normal, and these disorders can be pathologically proven. Endometrial implants have actually been visualized in multiple places outside of the uterus in the case of endometriosis, and adenomyosis can be visualized as invading the uterine muscle. These disorders can be seen and are real!
- Adenomyosis and endometriosis are not just “bad cramps”. These disorders also cause very heavy menstrual bleeding with large clots, bowel and bladder issues, prolonged menstrual bleeding (many times up to 14 days), anemia, and infertility.
- There is absolutely nothing “weak” about dealing with adenomyosis and endometriosis. This comment many times is made by men, and they have absolutely no idea what it is like to live with an “angry” uterus. Until the day that a man is born with a uterus, the following comment by Rachel from the TV show Friends stands – “no uterus, no comment!”
- Adenomyosis is not in your head. Refer to #1.
- Adenomyosis involves endometrial tissue growing into the uterine muscle. Endometriosis involves endometrial tissue migrating outside of the uterus. No amount of exercise will change this process. This misplaced endometrial tissue will not magically return to its proper location just because you exercised for an hour. Don’t get me wrong – exercise is always a good thing. But exercise will not cure these conditions. In addition, during the height of an adenomyosis or endometriosis attack, women do not feel well enough to exercise. It is very easy to say “just exercise” when the person saying it doesn’t deal with either of these disorders.
- Now, this one has a bit of truth to it. Diet has been shown to reduce symptoms in some cases. However, diet is not a cure. Again, nothing dietary has been shown to definitely change the course of either disorder. Even so, there are some changes that can be made that seem to help some of the symptoms. Refer to my page, http://www.adenofighters.com, for more information.
- Again, relaxing may help reduce some of the symptoms, but it is not a cure. These endometrial implants will not just disappear just because a woman “relaxes”.
It is so important to understand that both adenomyosis and endometriosis are pathological processes, and the cause is currently unknown as is any cure. People who are around women who suffer from these disorders need to be acutely aware of this. Please don’t make these kinds of comments as they seriously impact their emotional and mental health. It is hard enough to deal with these disorders on a daily basis – the last thing they need is someone who doesn’t deal with adenomyosis/endometriosis to tell them how to “cure” themselves. There is no known cure at the current time except for hysterectomy in the case of adenomyosis. A hysterectomy will not cure endometriosis.
Relaxation Techniques/TENS
Learning to do some of the following relaxation techniques may help you to deal more effectively with the stress that comes along with having to deal with adenomyosis. I have added my own comments about which techniques worked for me during the time I was suffering from this disorder. Some of the techniques work better than others for different people, so just try them out and see which ones work best for you.
1. Meditation
2. Visualization – when I was overly stressed, I would shut my eyes, focus on relaxing and picture myself on a beautiful white sandy beach, and the ocean was clear blue. I would listen to the sounds of the waves crashing on the shore, feel the breeze on my face, and feel the sun beat down on me. I was the only one there, so no other sounds were heard except for the waves and an occasional sea gull calling. This was very effective in calming me down. You can picture any setting – just think about whatever place you would want to be at that particular moment.
3. Deep breathing – I used this technique when I was in the middle of an attack. I would concentrate completely on taking deep breaths, and I think this actually kept me from passing out! But it also helps tremendously in calming yourself down.
4. Chamomile tea – in addition to the presence of phytoestrogens, chamomile has been shown to be a great relaxant herb.
5. Observe your surroundings – on nice sunny days, I make it a point to go outside and just look. Look at the trees, flowers, birds in the air. The world is a beautiful place if you take the time to just look.
6. Social interaction and physical contact – spending time with others is a wonderful way to raise your spirits. Physical contact doesn’t even have to be with another person – just petting your dog or cat has been shown to reduce stress levels.
7. Classical music – research has shown that listening to 30 minutes of classical music has the relaxation effect of 10 mg. Valium.
8. Think positive – a great idea that came from my counselor is a gratitude journal. Think of 5 things that you are thankful for everyday and write them down in a journal every morning. A great way to start your day!
9. Progressive muscle relaxation – I do this in bed at night as I’m falling asleep. Focus on one muscle group at a time. Tighten that muscle and then relax. Move on to the next muscle group. The thing that shocked me about this technique is that it made me very aware of how tense I was without realizing it. My shoulders and face muscles were already tight – I just had to focus on relaxing them!
10. Yoga/tai chi – yoga is a well known technique used to reduce stress and anxiety. It improves overall fitness and health, lowers blood pressure and improves heart function. Tai Chi is also know as “meditation in motion”. In addition to its ability to reduce stress and anxiety, it has been shown to help with many different medical problems such as heart issues and arthritis.
11. Acupuncture – this technique has been shown to reduce pain and nausea. It may be a useful tool for those who do not want to rely on pain medications for pain relief.
12. Soak in a warm tub
13. Use a heating pad on your abdomen
TENS
Tens, or trascutaneous electrical nerve stimulation, is a technique used to treat chronic pain by using electrical impulses to stimulate nerves. Although studies on its effectiveness are conflicting, it is generally accepted as a somewhat effective way to treat chronic pain.
TENS is often confused with EMS. EMS, or electrical muscle stimulation, stimulates nerves whereas TENS actually blocks nerve pain signals.
TENS has been shown to help all kinds of chronic pain, but most importantly for purposes of this website, it has been shown to help with dysmenorrhea (painful periods).
When using a TENS unit, make sure to read all directions and warnings. Skin irritation can possibly result from use. Also, its use is contraindicated if you are pregnant or if you have a pacemaker.
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!
Emotional Aspects
The physical toll of adenomyosis is very clear – severe pain, heavy bleeding, infertility, etc. This is much easier to see than the emotional toll these women have to face on a daily basis. The following are some of the issues I was faced with during my 17 year struggle:
1. Co-workers and friends not supportive due to the fact that the doctors were unable to diagnose the condition.
2. My own doctors telling me I needed counseling/antidepressants because they were not able to come up with an accurate diagnosis. I was told that my condition was probably stress related.
3. Having to struggle with severe abdominal pain and not having an accurate diagnosis – wondering all the time if I had something deadly (such as cancer) and the doctors were missing it.
4. Being afraid to leave my house for fear that an attack would hit me at anytime. Being afraid to not have access to a bathroom.
5. Constantly trying to get people to understand that I was in severe pain. I could not get them to understand the degree of pain that I was dealing with.
6. Taking Midol or ibuprofen constantly even when I was feeling good, “just in case” an attack happened.
7. Going through medical tests to have the doctors tell me that they found nothing – so I still didn’t have an answer to the cause of my pain. Knowing that I was going home and nothing was going to change.
As you can see, all of this can severely impact the emotional health of those struggling with adenomyosis.
Since doctors cannot diagnose adenomyosis easily, some of them are likely to tell you that it is stress related and may be quick to try and prescribe an antidepressant. My suggestion is to get a second opinion….or third or fourth!!
I remember watching Montel Williams one day discuss the problems when getting his correct diagnosis. It took 9 doctors before finding out that he had multiple sclerosis!! We now know through the show Mystery Diagnosis that a diagnosis by a doctor can be wrong. Thank goodness for Discovery Fit and Health and this show for bringing this fact to the forefront!
As far as my experience, I was told that it was “all in my head”. I was told that I needed to go to counseling for stress management. I was given a slew of antidepressants over the 17 years that I struggled with this disorder. Actually I probably did need the antidepressants for the stress I was going through in not getting an accurate diagnosis!! Everyone who is involved with an individual who is sick and not getting properly diagnosed needs to remember this one vital piece of information: the person going through it is suffering not only physically probably on a daily basis but also mentally. Treating a real disorder such as adenomyosis as if it is “in their head” just compounds the mental suffering and leads that person deeper into depression!!
“When you hear hoofbeats, think of horses, not zebras”
This is a popular saying among physicians. It means that when diagnosing someone, look for the expected and not for the unusual. This may be true in most cases. However, there are “zebras” out there! If someone has been complaining about any kind of problem for an extended period of time and has been tested for the usual disorders with normal results, it is time to look for the zebra! It certainly should not take 17 years (as in my case). During my research, I have found that the average time to get a diagnosis of adenomyosis is 9 years. In my opinion, this is completely unacceptable. Under no circumstances should a woman have to undergo severe abdominal pain and very heavy bleeding for that period of time. I’m asking for the medical profession to start looking for those “zebras” sooner than later.
Diagnostic Tests
Currently, the most effective way to get a diagnosis prior to hysterectomy is either transvaginal ultrasound and/or MRI. In my case, I had many transvaginal ultrasounds, but I never received the diagnosis of adenomyosis prior to hysterectomy; however, that was many years ago and the technology has improved since that time.
The following is a list of the tests that may be necessary as you are worked up to rule out other causes of abdominal pain. I have been through some of these, and they aren’t nearly as bad as they sound. I will eventually add descriptions of the procedures and add my own personal details of my experience. Hopefully most of you will not have to go through all of these, but in case you do, I wanted to give you an idea of what to expect.
Pelvic Exam/Pap Smear
Notes from personal experience:
I have always hated getting a pap smear basically because of the position (legs in stirrups) and the insertion of the speculum (slightly uncomfortable). The actually swabbing of the cervix is not painful at all. The good news is that it can be completed very quickly and it is over before you know it.
Abdominal Ultrasound
Notes from personal experience:
This is a very easy and completely painless test. You will be required to have a full bladder so the technician will be able to get clear pictures of your reproductive organs. This can be somewhat uncomfortable especially if you drink a lot and have to wait at the office. If you have been waiting a while and are getting really uncomfortable, don’t hesitate to let the receptionist know that you are there for a pelvic ultrasound and have a full bladder!
Transvaginal Ultrasound
Notes from personal experience:
I have had this test multiple times. It is not painful and takes only a few minutes to perform. It has been reported that adenomyosis will be picked up using this test in 50-70% of cases; however, adenomyosis was never picked up in my case.
Colonoscopy
Notes from personal experience:
I had my one and only colonoscopy close to 20 years ago, and I’m sure things have changed since then. However, even 20 years ago, this test was not painful, believe it or not. The worst part of the whole thing was the prep the night before the exam. At that time, I had to drink a giant jug of medicine that tasted like salt water – 8 ounces every 20 minutes until it was gone. The purpose of this drink was to clean out the colon, and it certainly did its job! I went to the bathroom constantly throughout the night and became very cold. By morning, I was a little nauseated. However, once they gave me the sedative, I was completely out of it and the rest was a piece of cake. I have since learned that they changed the procedure from the drink to taking a pill the night before the test. That sounds a little bit better!
Hysterosonogram
Notes from personal experience:
Although this test sounds like it might be painful, I experienced no pain whatsoever during the actual exam. I was pleasantly surprised! However, about 30 minutes after the test (on my way home in the car), I began to have very bad abdominal cramping and some GI distress. It lasted for about 30 minutes and then passed. This apparently isn’t very common, so it could just be my individual case….not sure about that, though.
Endometrial Biopsy
I did not have this test performed during my struggle with adenomyosis. During my research I have learned that this test may or may not be beneficial in women suffering from this condition. Since adenomyosis is seen in only sporadic areas of the uterus, luck would play a role in whether the actual biopsy site contained the adenomyosis. If it happens that the biopsy site did not contain the adenomyosis, a women may be told she doesn’t have it when she actually does. Keep this in mind if this test comes back negative but you continue to have severe symptoms. It has been reported that this procedure will only pick up about 45% of cases.
Adenomyosis Fighters 