Sunday, October 6, 2013

The Emotional Suffering of Women with Endometriosis

Your friend tells you she has endometriosis. Being the wonderful friend you are, you know just what to do. You go online, type in “endometriosis” and begin to read what you should expect her to be dealing with. Alright, you think to yourself, she has irregular and painful periods.  Continue on to the next line. Oh, that really stinks. She may have some trouble conceiving and I’ll bet she has pain during sex. You read on. Bowel and bladder issues? Fatigue? Wow, you muse, genuinely distraught, I sure am glad I don’t have endo!

Of course you’ll be correct about all those symptoms. After all, when has the internet ever been wrong? And you really are a great friend for caring enough to research what she goes through. Unfortunately for your friend, and for the rest of us who suffer from endometriosis, the internet does not tell the whole story. You see, for every physical ailment that infiltrates the life of a woman with endometriosis, there is an emotional component that is equally, if not more, devastating.

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 the lives of women with endometriosis and makes us miserable.  Some of us feel guilty for just having the endo to begin with, as we erroneously wonder what we did wrong to deserve this disease.  Guilt is common for those of us who are spouses or girlfriends and cannot give our significant others the emotional or physical attention they need. We feel guilty that our close friends and family have to spend their days taking care of us when we are incapacitated. We also feel guilty when we feel as though we are idling around the house while the rest of the world is working hard.  We feel guilty for canceling plans that we made weeks ago, or not being able to make plans to begin with due to pain. Guilt crushes those of us with children when we cannot take care of them the way they deserve to be taken care of. It can sometimes overwhelm us when we are asked to play with our kids or put them to sleep, and we can’t even get off the couch. When we are trying to conceive unsuccessfully, we feel guilty for not being able to give our spouses the children they so desire.  Guilt is a truly ubiquitous feeling in the lives of women with endo.

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 endo? 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 we feel.

For women with endo, jealousy rears its ugly head when we see other people performing activities that we are too sick or fatigued to perform. It is hard not to be jealous of a healthy person when you are stuck in bed, too exhausted to move, or lying on the couch, writhing in pain.  Jealousy is also inevitable when we see other people with their two children, or pregnant with their third while we would give our right hands just to conceive one child. Just seeing someone go food shopping without discomfort causes jealousy within us, as we would do anything to be able to perform everyday activities without pain.

Yes, many of us are lucky enough to have some sort of support system in our lives. And don’t get us wrong, we are enormously thankful for that support. But there is a profound, hollow loneliness that sometimes overwhelms us when it occurs to us that despite their best efforts, our loved ones cannot fully understand what we are going through. It is impossible to fully convey the physical and emotional turmoil that we deal with on an everyday basis. Even our endo-sisters cannot completely comprehend our individual suffering, as every person suffers uniquely. We are therefore sometimes led to feel as though there is no one as miserable as ourselves, no one going through what we go through.  And there is no thought lonelier than that.

There are many women whose lives with endometriosis are full of loss and mourning. On a basic level, any woman who lives with endo might feel that they mourn the loss of a “normal”, illness-free life. For those of us who are prevented from having the spouse or significant other we desire, the loss of partnership is profoundly felt. Women who are trying desperately to conceive but are unsuccessful mourn the loss of their motherhood. Additionally, those of us who have had the miserable but common experience of having a miscarriage feel a deep, inconsolable loss that remains with us forever.  Lastly, women who have had hysterectomies often mourn intensely as they experience personal loss in two ways: the loss of potential children, and the loss of their womanhood.

It’s very simple. Endometriosis is a disease that has to do with menstruation, sex and female body parts. Should we be embarrassed when speaking of those things? Absolutely not. Does society teach us to be? Unfortunately, yes. So while we endo-sisters attempt to speak to others about our illness and educate them, we are often met with embarrassed or disgusted looks. And that causes us to be embarrassed about having a disease that we obviously did not choose to have.

Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. Depression is a very common symptom for those who suffer from a chronic disease, as there is no tangible hope for a cure. For women with endo, depression can be 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. The possibility of us never being able to have children or a family is depressing. Feeling like our illness is misunderstood is depressing. Feeling like we need to be embarrassed of our illness is depressing.  And lastly, the thought that there might be no hope for our recovery, that we might have to deal with the incapacitating symptoms of endo for the rest of our lives is the most depressing thought of all.

Due to the symptoms of endo such as pain, bowel and bladder issues, intense fatigue, and pain during sex, women with endo often feel inadequate. We feel like we lack the ability to do anything important, like our jobs, or household work.  Relationships with our spouses, kids, parents, siblings or even friends are often placed on the back burner as we struggle to merely exist in our difficult lives. This inability to maintain relationships, keep our jobs, take care of ourselves or family members or even have sex with our spouses overwhelms us with feelings that we are incompetent, useless, and valueless. Some of us even feel as though our existence on this earth is pointless if we can’t be functioning members of society. Feelings of incompetence can also lead to depression, embarrassment, guilt, and rage.

So there you have it. Women with endometriosis suffer on two levels: the physical and the emotional. While the physical symptoms are more commonly spoken about and documented, the emotional turmoil that we go through is often neglected. So, the next time you try to give your friend or relative the support she needs and deserves, try to remember that there is a very strong emotional component to this disease that should never be overlooked.

**Are there any other emotional symptoms that you think should be on here? Please feel free to comment and let me know!**


  1. This is stunning. I've dealt with endo for years, and reading this was so emotional, so crushing, and yet uplifting to know I'm not the only one. It's like these words have been running through my head for years, but you wrote them down and I can't thank you enough for that!