My pain


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After my last cyst (which was able to be drained instead of operated on) the pain just refused to go away. The pressure in my pelvis when I sat down or stood up that had been my warning that the cysts were back just never got better. I have a really hard time trying to describe my pain. Sometimes it depends on who I’m speaking with, but generally I feel as if it’s impossible to put the type and intensity of my pain into words. I will try here, but if any of my new “friends in pain” have a better way to describe this, please let me know.

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First of all, there are many pains at once, so even to understand one, you don’t have the whole picture. There is an uncomfortable pressure deep inside my pelvis whenever I sit down. The longer I sit, the worse the pressure builds up. I usually move around in my seat a lot shifting my weight to try to help, but eventually I just have to stand up. However, as I stand up the pressure is released, but not necessarily in a good way. It is fast and strong, but once the pressure evens back out I feel I can breathe again. The only way I have found to actually relieve this pressure is by laying in modified fetal potion. I hurt whenever I stretch (like to reach something in the cabinet or to pick something up off the floor). I have compared this pain to having my insides slowly turn to stone. Obviously, if everything is stuck together and hard as a rock, any type of stretch will be painful. My boyfriend says he doesn’t get that one because who has ever been turned to stone? Of course it’s not very relatable, but it’s the best I’ve come up with so far. Then there are the constant twinges as my body tries to digest food and move it along my intestines. My intestines are all practically glued together with adhesions, so they can’t move freely as they are supposed to. Next are the cramps. I have two types of cramps. The first one is best compared to the cramps you have when you have a bad case of diarrhea. They usually happen any time I am about to have a bowel movement. The second type of cramps are more like really sharp “stitches” that I feel deep inside either my right or left lower pelvis. It is rare to have them on both sides at one time, but I’m not going to say it’s never happened. They’re just usually on one side or the other. The one comparison most people understand for the general lower pelvis and lower back discomfort that I feel all day long every day is like menstrual discomfort- how you feel when you’re on your period. But it is the average person’s menstrual discomfort times 20. The last comparison I’ve used when my lower back hurts (the scar tissue has grown through the muscle) is that it feels kinda like working out to the extreme one day and feeling sore the next day. Let me just say here how I don’t agree with the doctor’s 1-10 pain scale because I can guarantee you that my 1-10 (really anyone who deals with chronic pain) is different from the normal person’s 1-10. I know this because a 10 is shown with a sad, crying face. When I hurt to the point of tears, the pain doesn’t necessarily go away. I have to deal with it and adapt until it no longer makes me cry. Eventually a stronger pain will come along which I have to adapt to also. I find myself laughing at the doctor’s office when someone tells the doctor their pain level is a 13 because they twisted their ankle (which by the way is not even swollen). They just have no idea!

Since I had my last procedure my back has been a little bit more sore than usual, but they said that could happen. I am SOOOOO ready for the pain to ease off like they said it would. Either way, I am going to have surgery again, so maybe the adhesiolysis (if the doctor decides it’s not too much of a risk to do) will give me some time pain free. It’s really only being done because They found an abdominal hernia that needs to be repaired. Luckily they will be able to do both at the same time. I just want some relief from this daily hell I live in. I would like for the surgery to buy me enough time to finish school. If nothing else, to graduate and have the degree whether I’m able to use it or not.


2 thoughts on “My pain

  1. Joy, I am impressed with your blog so far! Love your cover pic…and I really love your description of your pain…it is just as you describe! Your story so closely resembles mine…only so many of us can really understand the pain we live thru, and the nightmarish medical travesties we have suffered…I have found in writing my blog that its a wonderful outlet for my emotions…a way to get out of my head…and a lifeline to support from others who really get it. The wound vac was awful…the MRSA and flesh eating virus and multiple staph infections were horrendous. The ventilator and suctions were like being smothered to death…the treatment by some of the medical establishment boarded on abuse…the indignities suffered have scarred my mind for life. The anxiety I live with now is crippling somedays. You keep writing…keep fighting…stay strong and get your message out there for others like us…I will always be here if you ever need to talk…


    • Thank you so much Tammy. I knew I had to find other people like me, but there has to be very few that have gone through all we have. I feels so good to have someone understand, not just give you “the look”. I appreciate the offer to talk and believe this is going to be the beginning of a beautiful online “friendship”.


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