Depression and Endometriosis: When Chronic Pain Leads to Depression
Being a part of the endometriosis community, you hear a lot of stories of women receiving unpleasant diagnoses. Several have discussed depression and mental health concerns, but no one really digs in deep because it’s such a taboo subject. I’ve read plenty of stories of newly diagnosed women, added my “I’m so sorry to hear” to the thread and moved a long. It wasn’t until an actual friend received her diagnosis and shared it with me that I broke down.
A few months ago, a friend came to me with a couple of questions after reading this site. We talked about my symptoms and I encouraged her to schedule an appointment with Dr. P’s associate who I’d seen for incision checks and some follow-ups. My experience – to that point – had been outstanding. Her first appointment was great! She had the same lovely experience with the doctor I did, and was optimistic about the next visit. However, the next visit provided results that were not favorable. When she shared them with me, I was devastated. This was my fault somehow, right? I felt responsible.
She asked me how to deal with it – how one handles the news. I tried to give her advice as best as I could, but I realized that I had no idea what to say. While I had almost a decade to deal with my own diagnosis, I had never come to terms with it. The uncertainty of not knowing what will happen in your future, not being able to plan your life, or even your day because of pain flare-ups. How is it fair? It does not seem right at all.
Imagining being a newly married couple and just finding out you may have this horrific disease… my heart aches so badly for her.
The uncertainty is only one aspect of this disease that mess with your emotional and psychological well-being. When you compound the uncertainty with pain every moment of every day that makes you want to scream out in agony on moment, and the next, curl up and cry because you have no energy to do anything. The second you think you may forget about endometriosis, the pain kicks up a beat to ensure you do not forget.
Around the time of her reveal, I was starting (or had already started) to slip into a downward spiral towards depression. Was it because of my friend’s diagnosis or was it my realization that after a brief pain hiatus it all came back in double force that I’ll likely never be pain-free that caused the decline? It’s likely a combination of a multitude of things, as the decline was a slow slip into the fog. At first, I was afraid to admit it could be depression. Saying “depression” aloud makes it too real. I started sleeping more and not being able to wake up in the morning. I was drinking coffee like water, and the caffeine exacerbated my pain but I could not stop myself.
As the pain increased, I took more pain medication which caused me to sleep more (see the issues starting to develop?). I was even using my xanax that I’ve had for over two years!
I sensed myself slipping into the depression – I was not writing on here, I lacked interest in my job, I could careless about daily life – but I no longer cared.
The days became weeks and before I knew it, May was here. I could not write a single word because I was afraid to admit to myself any of it. Had the depression taken that strong of a hold? I had so much hope for my big surgery and here I am six months later still feeling like shit, daily pain, eating Advil like tic-tacs.
How can I hold myself out as an expert on endometriosis when I cannot deal with having it?
No one should have to live with this physical, emotional and psychological pain each day. So far, the world seems unaware of the gravity of this disease’s reach. While there has been increased media attention due to celebrities speaking out about their own diagnoses, it is not enough. More needs to be done. Research programs need to be developed. We need walks and fundraisers developed. We need spokespeople, commercials, and charity events. There needs to be a major movement in our society to give a shit about this disease and let people know what it is like to suffer with pain – real pain – every day.
To not know if you will be able to conceive. To have the worst periods, ever (if you get one, at all). To have to augment your eating habits in fear of digestive issues. To have to be on the lookout for other autoimmune diseases popping up since you are more susceptible. To being looked at like a drug addict every time you go to the hospital room writhing in pain, and are told you do not have any visible issues, as endometriosis is not visible under traditional imaging techniques. Undergoing multiple surgeries, missing work and having to explain it is more than “period pain.”
This disease needs a face. It needs a voice. If I can bring even a whisper through the darkness, I feel I’ve accomplished my task.
The depression that this disease brings on is difficult and largely over looked. Why do doctors shrug off women’s pain? I am blessed that Dr. P and her clinic take women’s pain seriously; however, I do not know what else can be done for me there. I am trying pelvic floor therapy. Yet, my pain is horrible. How will this help? Will there ever be relief? The only time I have relief is when I sleep, so I sleep as much as I can. It’s unhealthy I know. I am working on correcting my lifestyle, yet sometimes – sometimes you have to give into your darkness to come out of it.
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