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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.

 

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.

Adenomyosis and Endometriosis can be Pathologically Proven

After recently listening to Dr. Drew’s ill-informed comments on endometriosis, I find it extremely important to set the record straight. I suffered from adenomyosis, a condition somewhat similar to endometroisis, for 17 years before obtaining a correct diagnosis. I find Dr. Drew’s comments damaging to the cause of bringing more awareness and education to endometriosis and adenomyosis.  It is vitally important for people to know the truth about these disorders.

So let me begin by giving you some background information for those of you who haven’t heard the actual call and remarks.  A young man called in to Dr. Drew on his radio show, Loveline.  His girlfriend had been diagnosed with several seemingly unrelated medical conditions, one of which was endometriosis.  After listening to this guy talk about his girlfriend’s diagnoses that took him probably less than one minute to describe, Dr. Drew made the statement that she had a somatoform disorder and needed a trauma specialist.  He called these pelvic pain disorders “garbage bag diagnoses” and said that they could not be pathologically proven.  In addition, he made the comment that endometriosis is linked to sexual trauma.

Needless to say, many women were outraged by these comments.  But even better, some nurses and doctors got in on the action.  Dr. Drew really ended up taking a beating over these remarks.  Most significantly, Dr. Tamer Seckin, co-founder of the Endometriosis Foundation of America called in to Dr. Drew’s show, and the two of them had about a 30 minute conversation about this topic.  Dr Seckin did a beautiful job on setting the record straight, giving accurate facts about endometriosis in a very professional manner to Dr. Drew.

I have listened to both the initial call/remarks and the conversation with Dr. Seckin in full.  Although Dr. Drew did apologize at the beginning of the call with Dr. Seckin, he still made some remarks that I find disturbing and inaccurate, so I would like to address these comments here.

Dr. Drew made the following comments:

“Everything you mentioned, EVERYTHING you mentioned are things that actually aren’t discernably pathological.” (This comment came after the caller told Dr. Drew that his girlfriend had been diagnosed with endometriosis, interstitial cystitis, lactose intolerance, and no stomach lining)

This is false.  Endometriosis is very much a discernably pathological condition. Even more interesting, IC is commonly seen in women suffering from endometriosis.

“When people have unexplained pelvic pain, it’s called somatoform dissociation.”

Not necessarily.  These two remarks are the ones I want to discuss further.

First of all, what he fails to understand here is that many women have had multiple diagnoses and are later proven to have endometriosis or adenomyosis.  Many of these women have diagnoses that appear to be unrelated, as was my case.  Any doctor can easily say that “endometriosis sucks”, as Dr. Drew so eloquently put it, if they have multiple visits to a doctor confirming  pathologically that the woman is suffering from endometriosis.  However, it takes a TOP doctor, and expert in his field, to be able to determine that a woman is actually suffering from this disorder after receiving multiple diagnoses that are seemingly unrelated.  I would love to know if he has seen the Discovery Fit and Health program, “Mystery Diagnosis.”. The problem of receiving multiple diagnoses that are seemingly unrelated are evident in many different diseases, not just endometriosis!

Secondly, in my opinion, any doctor who thinks he can accurately diagnose a patient without ever talking to her or physically examining her is not one worth pursuing.  No one, and I mean NO ONE, can accurately diagnose someone without doing a thorough exam on the patient.  I have run into this problem during my struggle with adenomyosis, and the doctors that felt they were able to diagnose my condition without a thorough exam were unanimously wrong in their assessment of my condition.  I realize that this is just a radio show, and there is limited time to respond to caller’s questions.  However, in my opinion, and more responsible answer to this young man’s question would have been something to the effect of, “Well, it’s hard for me to say for sure, but there are several things that could be going on here.  She COULD certainly have a somatoform disorder.  However, some conditions do have seemingly unrelated diagnoses as the doctors are trying to determine the cause of the pain.  My advice would be to pursue a top of the line gastroenterologist/gynecologist and see if they can narrow down a diagnosis.  If they are still unable to find a discernably pathological condition, you may want to consider discussing the possibility of a somatoform disorder.”

Having been through the agony of adenomyosis, I know what these women are going through.  You have no idea the number of these women who have not been able to get effective treatment for these disorders because of the lack of the medical profession to accurately diagnose these conditions.  While going repeatedly to physicians over many years, a lot of these women, including me, have been told by doctors that it is “all in our head” when it, in fact, is not.  This is a major reason why there was such an uproar over Dr. Drew’s comments. This is also one of the main reasons I started http://www.adenomyosisinformationnetwork.com as I want the general public to be educated about misconceptions about this disorder.  Just because the doctors are unable to diagnose the cause of a woman’s pelvic pain DOES NOT necessarily mean it is a somatoform disorder.  Could it be?  Sure.  Does it have to be?  No!

In my case, I suffered from chronic severe pelvic pain for 17 years, and no, I have no history of sexual trauma.  Over that time, I was put on antidepressants because I was so depressed about not getting a diagnosis and having to deal with chronic pain.  I was treated many times as if the condition was in my head.  But lo and behold, when my hysterectomy was finally done in 2007, I had a discernably pathological condition called adenomyosis.  Once the uterus was taken, all of my pelvic pain stopped.  During the years that I suffered from this condition, I had a slew of unrelated diagnoses, including peptic ulcer, irritable bowel syndrome, celiac disease, endometriosis, uterine polyp, and possible complication from a ruptured appendix.  All seemingly unrelated – but I never even heard the word adenomyosis until after it was found during the pathological examination of my uterus.

Am I convinced that this girl has a somatoform disorder?  Based on the call I heard, absolutely not.  Again, I can’t say for sure what the problem is, but I am not convinced that Dr. Drew has the correct diagnosis because I’ve been down that road.  Could she be suffering from endometriosis, a pathologically discernable condition?  Absolutely.

Endometriosis and Suicide – an Excellent Article by Rachel Cohen

WEDNESDAY, MARCH 12TH, 2014 / Rachel Cohen

I wanted to die last night. There, I said it. Ugly thing to say, right? Might even make you want to inch just slightly away from me. Feel free to. Sometimes I want to inch away from myself as well. But before you judge, try to listen to what I have to say. Assess my words with an open, empathetic heart, and think about the way you would feel if you were in my shoes. It may sound as though I am trying to pull at your heartstrings, to make you feel depressed for me and my life, but I am not.  I just want you to understand what it’s like to be a woman who suffers from endometriosis. I just want you to understand. These are the realities of living with endometriosis.

Dealing With the Physical Reality of Endometriosis

Pain. Imagine your abdomen and pelvis are encased in barbed wire so that the spikes of the wire are actually piercing them, stabbing them sharply every time you move. Now imagine that the barbed wire is actually attached to some sort of electrical current that shoots electricity through the spikes, increasing the intensity of each penetration. Next, add a machine that alternates shooting the electrical spikes into the body and pulling them out again in random intervals, thus adding a surprise and shock factor to the pain. Lastly, in addition to the shocking electrical stabbing pain, there are deep, underlying waves of pain that crush and release the muscles, causing a cramp so excruciating it takes your breath away. Imagine living with that agony on an everyday basis.

I live with a veil of pain draped over my body. Not stubbed toe pain, sprained ankle pain, or even broken heart pain. The pain that I feel every day is an all-encompassing event, specially formulated to break both my body and my spirit. It is a visceral and animalistic torture that brings me to my knees in surrender. That is the reality of living with endometriosis.

Fatigue. I want you to try to recall a night during which you slept very little. Maybe you had a party the night before, or perhaps you were up doing work. Now think about the way both your body and mind felt the following day. Did you function as well as usual? Were your movements as fluid, your mind as sharp? Or did it feel as though you were moving through quicksand, your brain wrapped in cellophane? How would you deal if you felt like that every day?

I live with a crushing form of fatigue that makes my every move devastatingly cumbersome. I often feel as though I am nine months pregnant with quadruplets, constantly carrying around an enormous weight that is attached to my body, sucking whatever strength I have left.  My limbs feel like they are wrapped in lead, and my eyelids covered in cement. All my body wants to do is sleep, every minute of every day, but it can’t. My life doesn’t take a nap when I do.

The Emotional Reality of Endometriosis: Depression 

I wish I could say the physical aspects of endometriosis are all that plague me. Unfortunately, this is not the case. You see, for every physical malady that plagues women with endometriosis, there is an emotional component that is equally, if not more, devastating.

Guilt. Guilt is like an itchy woolen sweater that is two sizes too small: suffocating, uncomfortable, and in desperate need of being shed. It permeates the many aspects of my life and makes me miserable. I feel guilty for having endometriosis to begin with, as I sometimes wonder what I did wrong to deserve it. I also feel guilty that I cannot give my husband the emotional or physical attention he needs. I feel guilty that my close friends and family have to spend their days taking care of me when I am incapacitated and that I spend my days idling around the house while they work hard. I feel guilty for canceling plans that I made weeks ago and the lack of ability to make plans to begin with.  Guilty that I cannot be a good friend to others. And guilty when I think of my children who I cannot take care of the way they deserve to be taken care of. Finally, I feel guilty that I cannot give my husband any more precious children due to the hysterectomy I had that was not even successful.

Inadequacy. Due to the symptoms of endometriosis, I often feel inadequate and obsolete. I feel like I lack the ability to do anything important, like my job, or household work.  Relationships with my spouse, kids, parents, siblings and even my friends are often placed on the back burner as I struggle daily to merely exist. This inability to maintain relationships, keep my job, take care of myself or family members or even be intimate with my spouse overwhelms me with the feeling that I am incompetent, useless, and valueless. Sometimes I even feel as though my existence on this earth is pointless if I can’t be a functioning member of society. These feelings of incompetence sometimes also lead to depression, embarrassment, guilt, and rage.

Anger. Imagine being told that the agonizing pain you feel every second of every day is not real, that you are making a big deal out of nothing. How would you feel?  Anger? Rage? Imagine being told that you are a “druggie” when you ask your doctor for pain medication to ease the misery you are dealing with. Anger again? Or how would you feel towards “God” or “The Universe” if you let your mind wander to the opportunities you would have if you didn’t have endometriosis? It’s hard not to be furious when you think of everything you are missing or losing due to this disease. What if you’ve tried for years to get pregnant with no success or just miscarried the child you’ve wanted all of your life. And imagine being so debilitated by your symptoms that you are unable to perform your everyday activities. How would you feel? Frustrated? Angry? That’s exactly the way I feel.

Jealousy. For me, jealousy rears its ugly head when I see other people performing activities that I am too sick or fatigued to perform. It is hard not to be jealous of a healthy person when I am stuck in bed, too exhausted to move, or lying on the couch, writhing in pain. Just seeing someone go food shopping without discomfort causes jealousy within me, as I would do anything to be able to perform everyday activities without pain. Jealousy is also inevitable when we I see other women, basking in their pregnant glow, and I know that I will never again carry a living being inside of me.

Loneliness. Yes, I am extraordinarily lucky to have a wonderful support system in my life, and I am enormously thankful for that support, but there is a profound, hollow loneliness that sometimes overwhelms me when it occurs to me that despite their best efforts, my loved ones cannot fully understand what I am going through. Even my sisters with endometriosis cannot completely comprehend my individual suffering, as every person suffers uniquely. Therefore, I am sometimes led to feel as though no one understands me, and there is no thought lonelier than that.

Loss. Endometriosis is a disease that is full of loss and mourning. On a basic level, I mourn the loss of a “normal”, illness-free life. A life that is chock-full of boring, everyday activities and errands. I am no stranger to mourning or to loss. Having a miscarriage created a deep, inconsolable hole within me that will remain with me forever.  But most of all, having a hysterectomy has caused a ubiquitous feeling of loss within me as I mourn, not only the loss of potential children, but the loss of a part of my womanhood.

Depression. Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. For me, depression is caused by many different things. Being alone all the time, not being able to spend time with family and friends due to pain, fatigue or other symptoms is depressing. Excruciating pain is depressing. Feeling like my illness is misunderstood is depressing. Feeling like I need to be embarrassed of my illness is depressing.  And lastly, the thought that there might not be any hope for my recovery because there is no tangible hope for a cure, that I might have to deal with the incapacitating symptoms of endometriosis for the rest of my life, is the most depressing thought of all. That is why I wanted to end my life. Yes, I contemplated suicide. Like so many of my sisters with endometriosis, I hit bottom. I was tired of the pain, tired of the despair, tired of the guilt, and tired of being tired. But mostly, I was and am, just tired of the pain.

Living with Endometriosis is Horrendous

Now that I have exposed my vulnerable and aching heart to you, my friend, you have a choice to make. I will never blame you if you choose to stay away from my complicated and sometimes depressing life. Like I said, if I had the choice, I would probably do the same. But let me say one last thing before you make your decision. Life with endometriosis is horrendous, but women with endometriosis are not. We are strong, determined women who fight fiercely and love fiercely. We try our best. We are not lazy or pathetic and we don’t give up. We may not sugarcoat the painful emotions and terrifying symptoms that we deal with. Our honesty may even frighten you. But when you meet a woman with endometriosis, you are meeting a proud, indomitable warrior. A soldier who goes into the fire on a daily basis and emerges with a thicker skin time and time again. A woman who should not be pitied for her pain, but admired for her ever-present resilience and strength. That, my friend, is who I am. Take me or leave me. It’s up to you.