Re: why don't they take me seriously?

From: Balde Family (
Fri Dec 26 21:24:16 2003

I've had the same type of experience with a pain clinic doc. I was very glad that my husband accompanied me to one of my appts so that he could see for himself how condescending and arrogant the doc was. The doc told me my last resort was to try epidurals, after 4 rounds of nerve blocks failed. In fact, one nerve block made me feel worse. Another time he skimmed a nerve which caused new pain. I told him I didn't think I wanted to do the epidurals and he said there was no more that he could do for me. He then said I need to be in the Pain Management program, which is basically group therapy. I had been seeing a therapist and even she agreed that I was doing a good job at handling the pain and stress mentally. I have several coping mechanisms that I utilize and she gave me some ideas. We both agreed that I didn't need to see her anymore, unless I started having problems. He didn't seem interested in that, because he said it would still be what I needed and acted like it was all in my head. Wrote something on my chart, was very cold and left the room. The whole time I'm crying, not just crying, but sobbing because I'm in shock at how insensitive he was being and treated me like I deserved the pain or something. My husband was furious. I wasn't feeling well that day anyway, so when my husband got me home and settled he called and spoke with the office manager at the pain clinic and went off on him about the unprofessional manner of the doctor, about the overall unprofessional and insensitive attitude of the staff. He said here's a woman in pain who has done everything you've asked in past, is willing to try just about anything for the pain, all she wants is some relief and you treat her like a druggie? When she isn't sure of trying one thing, you dismiss her rather than offering to discuss it further? I ended up writing the hospital that runs the pain clinic a letter to let them know of my experiences there, as well as a letter to the doctor that referred me there. They need to know what it's like from a patient's perspective. It felt like an assembly line everytime I was there. As soon as my procedure was over, they gave me a few minutes to gather my wits and then kept getting on me about getting up and dressed etc. Often I was very dizzy from the anaesthesia still, but they had more patients to see. I don't mean to carry on about the pain clinic, but I'm just disgusted at what I saw and what I hear from others. Pain clinic docs really need some extensive training in senstivity and bed side manner. I think pain clinic doctors have no business trying to treat pelvic pain patients. They even told me that even though they have treated some women for endometriosis etc, they hadn't really had much success in relieving the pain. However, they didn't mention this until after I had had two nerve blocks! Being optimistic, I agreed to let them try two more from a different approach. Like I said, I'm so glad that my husband was there to witness that appt b/c otherwise I think he would've thought I was making more out of it than what was there. I get that a lot, people treating me like it can't be as bad as I say it is and like I'm just being whiny. That drives me nuts, because I'm not a whiny person. In fact whining drives me crazy. I've always been independent and taken care of myself, the loss of control I feel with this chronic pain and all that comes from it has almost driven me crazy. I do use anti-depressants and anti anxiety medication. They have helped me alot. I tried medication to help me sleep, because getting a good night's rest really is essential in dealing with the pain. However, I felt too groggy every morning and sometimes would wake up in the middle of the night after the medication wore off. I tried several different kinds and took them at different points in the evening. I sleep fine now, without taking anything. I try to cut out as much medication as I can, and only take what I feel I really need.

Anyway, I just responded to let you know I can relate to what you're going through. I am here for you and all of you here. I think not only the pain that we have to go through is terrible and unfair, but the mistreatment of doctors and others around us can be incredibly cruel and undeserved. I sometimes feel that if I had cancer or something people know more about I would be taken more seriously. Since endometriosis and especially adhesions aren't things people hear much about, many people just dismiss what I'm telling them. What gets me is other women who tell me that they just can't imagine the kind of pain that I say I'm having because they have never had bad periods or the pain I describe and they treat me like I'm lying or exaggerating. When other women don't even support you, you can really feel alone. It's only been the people that know me well, husband, family and some friends and afte they've seen me at my worst on several occasions, seen me go through surgeries and procedures, actually have spoken with my doctors and specialists, are they finally getting the idea that maybe I'm not just blowin smoke. Maybe I really am in severe pain and don't just have a low threshold for pain. Which I already know I have a high threshold for pain. I have had arthritis since I was 9. Very painful, especially in the beginning, but I didn't let it stop me from doing things, especially physically active things, so I learned from a young age, how to deal with pain, how to move beyond it, until now sometimes, because this pain and all that encompass it can be so severe. It's so frustrating. I think we are each other's best support as we are the only ones who really understand what it's like and know how to support and comfort one another. Take care and I wish for pain free days for all of us. Sam

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