This weekend was pretty scary. I have been in mounting pain for about two months now, and I reached a breaking point this weekend where I could not even walk. I have been trying to get into a pain management clinic, but I am in an area where no one really seems to recognize the serious pain that endometriosis causes. I am in a smaller town and, unlike Portland (where I was constantly referred to pain clinics), no one here seems to understand why I am even calling them. I have been bounced from doctor to doctor, with some not even examining me before passing me on. Rather than dealing with my pain, I was forced to shove it in a box and pretend it was not so bad. And then that box exploded.
And something really bad happened. In meandering manner, I need to get this across. Because this is serious and needs to change. Because in the weeks I spent searching for a doctor to actually help me, I was driven into a corner. I was in so much pain that I literally did not care if I dropped down dead. I lost my will to keep fighting. I was not sad or depressed. My physical pain simply overwhelmed me so completely that I wished that I was dead. An otherwise completely happy and content, bright, and loved 24 year old, was wishing that. I was wishing that my disease would do me the courtesy of just killing me. And the reality that my doctors were okay with letting that sort of mindset happen, terrified me.
I made the level-headed decision--I got help when I knew I was out of my depth. But I also had the money and insurance (and support) to do so. How many people do not have that? What if I had listened to my first doctor and believed that I was not going to get the help I needed? I believe that I am strong, but a never ending battle can really weaken you at times; especially without the medical care and support you need. I was fortunate. My pain was managed when I got to the ER. When the pain settled, I felt terrible for thinking what I had. And I was balling, confessing what I had felt and was asking my significant other for forgiveness for ever thinking such a terrible thing. With my pain subdued, I could hardly believe I felt that way. But I did. And it was a completely unnecessary complication induced by unconcerned doctors.
The doctor I saw in the ER was disgusted when I told her how difficult getting treated had been. I told her everything, including what had lead up to me coming in that night. She gave me enough medicine to get me through at least a week and said to come back if I needed to. Not only that, but she was willing to give me both the stronger stuff for horrible days and the milder/safer stuff that I usually prefer to take. Many doctors do not trust me when I tell them that I want both because I try to minimize how much I take the stronger medications. They treat me like a drug addict looking for a larger haul. I am so relieved and thankful that this doctor was concerned enough to try and help me. I said goodbye to her in tears, and I expressed overwhelming gratitude for having a doctor who actually cared.
The point I'm trying to make is this: I've read stories where women with endometriosis have taken their lives and/or tried to take their lives, because they could no longer handle the physical pain. Chronic pain patients are, by an large, more willing to attempt or commit suicide. And yet many doctors continue to tell patients to 'tough it out'? I had one doctor tell me to just learn to live with my 'woman troubles'. The lack of interest or compassion for the pain I felt was beyond discouraging. And I could not believe the lack of recognition for the intolerable hell this disease can bring on a person.
I am not advocating an un-involved distribution of pain medications. Far from it. I try to avoid narcotics as much as humanly possible. They can be addicting, damage your liver, and cause all sorts of side-effects. But if a patient loses the will to live, stops taking care of themselves or their needs, or commits suicide because s/he can no longer tolerate her or his suffering, you have a problem much worse than drug addiction.
I'm seeing an acupuncturist as soon as possible and am continuing to take my natural pain supplements (i.e., bromelain, curcumin). I try to avoid the heavy stuff as much as possible. But when you are in enough pain to wish you were dead, you have to take care of that pain first and then regroup. I'm regrouping tomorrow and will continue to pursue healthy/safe pain management.
I'm sorry if this post sounds gargled and unprofessional. Like I said--not feeling so well. But I hope the message is clear--doctors need to recognize the kind of pain this disease causes and be more proactive about helping their patients manage it. No one should have to suffer like this.
Note: In case this needs to be made clear--I did not, at any point this weekend, consider taking my life. What happened still scared me; I honestly lost my will to live for a short time. I take something like that very seriously and am ashamed I felt that way. But I would prefer that how I felt be shared and acknowledged, rather than hidden. Because I am sure many of my readers have been in enough pain to lose sight of what's possible. Thank you very much for your support and empathy. Please do not worry over me. I took care of myself and am good (relatively speaking) now.