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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 […]
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, […]
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.
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.
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.
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
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 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.
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.
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!
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.
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.
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!
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.
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!
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.
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.