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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.
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.