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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:

  1. You need to go to a psychologist. You just need an antidepressant.
  2. They’re just bad cramps. All women go through it. Why can’t you?
  3. You’re just being a baby about it. You’re weak.
  4. It’s all in your head.
  5. Just get more exercise. Go to the gym and it will all get better.
  6. Your diet is to blame. If you ate better, you would feel better.
  7. It’s all stress related. You just need to relax.

OK, so let’s address these comments one by one.

  1. 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!
  2. 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.
  3. 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!”
  4. Adenomyosis is not in your head. Refer to #1.
  5. 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.
  6. 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.
  7. 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.

 

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.

Xenoestrogens

Xenoestrogens are synthetic (man made) estrogens that mimic the effects of estrogen found in the human body.  They disrupt hormonal activity and can be extremely dangerous.  These xenoestrogens can lead to the condition of estrogen dominance in which there is “unopposed” estrogen present in a woman’s body (see “Hormonal Imbalance?”).  This condition has been linked to adenomyosis.

Some examples of xenoestrogens include:

PCBs – banned from use in 1979

PBBs – can be found in plastics

Pthalates – provides durability and flexibility to plastics

Petrochemicals – byproducts of oil and gasoline

Organochlorides – dry cleaning products, chemicals used in the bleaching of paper

BPAs – used in the lining of food and beverage cans

DDT – pesticide banned from use in 1972; however still present in environment

Dioxins – released during pesticide manufacturing and combustion processes

Endosulfans – insecticide

Atrazines – herbicide

Bisphenol A – food preservative

Parabens – lotions

Ethinyl estradiol – component of birth control pills

In women with known or suspected adenomyosis, it is strongly suggested that exposure to these chemicals be reduced as much as possible.  Although it is impossible to completely get away from these chemicals, a few things can be done to reduce exposure such as:

1.  Do not store or heat your food in plastic containers.  Use glass whenever possible for food storage and heating.  Avoid drinking from plastic water bottles.  To drive this point home, let me tell you a true story.  I have worked in a medical lab for about 22 years as a lab technologist.  At the beginning of my career, I ran the acetylcholinesterase test.  Acetylcholinesterase is a very important enzyme in the body that plays a key role in the functioning of the nervous system.  The test that I ran was used to pick up possible neural tube defects in unborn children (spina bifida and anencephaly).  Sometimes the test worked fine, but at other times it did not.  After trying to figure out the problem and getting quite frustrated, we were finally able to identify the problem.  When we mixed the reagents in a plastic container, the acetylcholinesterase band did not show up on the gel and therefore the test failed; however, when we mixed the reagents in a glass container, the test worked just fine.  So, something in the plastic container was reacting with the acetylcholinesterase!  Kinda scary to think that a chemical in plastic can react with such an important enzyme vital to the nervous system!

2.  Buy fresh and organic food whenever possible.  Avoid as much processed food as you can.

3.  Buy hormone free meats.

4.  Avoid farm raised salmon because this can be a source of PCBs.  Buy wild salmon instead.

5.  Use natural/organic lotions or even make your own homemade lotions.  Avoid lotions that contain parabens. Try to use makeup that is paraben and phthalate-free.

6.  Use natural pesticides.  I use a 50/50 mix of vinegar and dishwashing detergent, and it works beautifully!!

7.  Try to stay away from birth control pills.  This one is a hard one, though, since birth control pills do give some relief for patients with adenomyosis.  Just keep this in mind as you go through your treatment.  I did have to take birth control pills to control my symptoms during my 17 year struggle.  You may benefit from taking other steps first before resorting to taking bcps.

8.  If you are considering hormone replacement therapy (HRT) for menopausal symptoms, try using bioidentical hormones.

9.  Invest in a good quality water filter.