Guest Post: Mendy

Image credit: englishwithatwist.com

This is another one of the friends that I have met in the adhesions support group that I am in on Facebook. We are alike (and unusual from the norm) because our adhesions formed mostly from infection instead of from surgery. I hope that you enjoy reading her story. If  you do, please comment and give her a hello.

 

 

My name is Mendy I’m 51 years old from Cocoa, FL and this is my story:

My life with abdominal adhesions began in 1979 when I gave birth to my son. I was 17 and had an easy pregnancy and delivery, when I went in for my check-up I told my gyno that I thought I had an infection. He said I didn’t. We went back and forth like this for a few years, eight years to be exact, when he finally told me that I didn’t have an infection it was just “gods” way of punishing me for having a baby so young.

I changed gyno doctors and the first thing the new doctor did was clear up the (non-existent) infection which turned out to be PID. Since I was now re-married and wanting to expand my
family we started taking fertility pills because I was not getting pregnant on my own. After two years of taking the pills I found out that I was pregnant. My new husband, myself and my 10 year old son were over the moon with excitement. I was four months pregnant when we had the first ultra sound and found out that something very strange had happened, I was pregnant but a baby never formed it was just a blob and it was known as a blighted ovum and the pregnancy would terminate and a D&C would need to be performed. After a period of mourning and healing time we decided to try again, this time my doctor wanted to do a laparoscopic to find out why the pregnancy did what it did and to see why I was unable to conceive normally. He did a video laparoscopic and found dense multiple adhesions that had all of my reproductive organs twisted and tied and adhered to other organs and my abdominal wall. They said it was called a frozen abdomen. He removed as many as he could safely get to and told me that my chances of ever conceiving or even carrying a baby to term was minimal at best and definitely not recommended. The PID for eight years had done the damage and that my life would never be the same.

For the next nine years I went from gyno to head doctor to gastroenterologist back to gyno in a viscous circle because adhesions don’t show up on any test so therefore it had to be in my head. In the meantime my menstrual cycles were coming very erratically some times I would have my period for months at a time and then they would stop for months at a time and the every day pain was getting worse and worse. I literally crawled into a gyno’s office and went through the story with him and begged him for the hysterectomy because I was told 10 years prior that was the only thing that was going to stop the pain. He refused because I was only 27, I asked him to watch the tape and get back with me. He phoned at 9pm that night and said he was setting me up for emergency hysterectomy the next day. This man was a god send. I don’t know what he did but I came out of the hysterectomy with my belly cut open from hip bone to hip bone and was told that the adhesions were so dense he had to stop the laparoscopy and go in abdominally, he removed adhesions for hours just in order to get to my reproductive system and while he was there he just removed everything so I wouldn’t ever have to have surgery again. He said he put some sort of surgical gel in and tried to coat everything to try and slow the growth of the adhesions down some but no guarantees. I was pain free for 6 glorious years and then had to have an emergency appendectomy. That was in 2003 and the pain has increased over the years until now I am back to living on a mostly liquid diet to try to avoid blockages and further surgeries. Adhesions have destroyed my life, I am no longer able to live a normal life everything I do depends on how bad the pain is that day. I can not plan anything that I can’t excuse myself from at the last moment most of my friends abandoned me years ago because they can’t count on me to be there physically and they definitely don’t understand because I “look fine” so it just doesn’t make any sense to them. I’ve lost my career because of the pain, I could take pain pills and make it through the day but who wants a doped up employee and if I don’t take the pills I am doubled over in pain and crying at my desk so my career ended in 2011.

My hope is that some day they will find a way to stop these dreadful ropes that tie my insides into a ball, if not for me than for future generations so they don’t have to live this way.

Thank you for listening.

 

 

Ok my friends, there you have it. Mendy’s story. Please leave a comment, even if it’s just a hello to let her know you stopped by.

BOs

Image credit: http://www.seprafilm.com

BO. No, I am not going to discuss body odor. However, what I am going to discuss may be just as disturbing, so let’s just say you’ve been warned.

BOs: in my world, the world of pelvic/abdominal adhesions, the one fear we live with on a daily basis is BOs or bowel obstructions.  The adhesions usually like to wrap their way around bowel, which is the point where doctors decide that surgery is too dangerous.  Once the bowel has been compromised, we are left to battle symptoms such as bloating, nausea, vomiting, and the ever present constipation on a daily basis. We live in fear of the day when the adhesions have a good grip on the bowels, causing a partial or full bowel obstruction.

From what I have learned from the adhesion groups on Facebook, the obstructions feel almost like childbirth. You have these strong, painful cramps and feel like you should be pushing. If it is a partial obstruction, then it usually passes and you are able to evacuate. However, if it doesn’t pass and you start to vomit, it is usually time to head to the ER and means surgery is eminent. These are the surgeries that our doctors dread the most. It is a life-saving surgery and there is always the chance that the person has waited too long and infection sets in or the person can end up coming out of the surgery with the dreaded colostomy bag.

Why am I telling you all this? Many people with severe adhesions eventually adopt a liquid diet to help to avoid BOs. I thank God every day that I am still able to eat. I worry about the day when I will have a partial or full BO. That is just part of life for people like me. One day, it will happen. I try to be prepared. I am on a variety of laxative-type medications every day to keep things moving and prevent a BO. My fridge is stocked with various protein shakes such as Ensure for when I must adopt the liquid diet (even if it is temporary).

I write about these unpleasant things so that you understand my worries, my pain, my life. So that if you ever meet a person with adhesions you understand them, their worries, their pain, and their life. So that you understand how the severe pain of daily living causes many to have to quit work. They are not lazy, they are in pain. Not just physical pain, but the emotional pain of being told by the doctors that there is nothing more that can be done. That no more surgeries can be done unless the “situation” becomes life threatening, and worrying daily if you will be able to get through the day with a lesser amount of pain than the day before and without having the dreaded BO.

False Perceptions about Opiates and the Surprising Reality

Image from:
http://sparkphysio.blogspot.com/

I am reposting this information about opiate medications for others who are either made to feel bad for taking medication or maybe have some preconceived notions themselves. Thank you to edsinfo for the information!

False Perceptions about Opiates and the Surprising Reality.

Good day

Image from: http://flicker.com

I had a good day today. Before I get into details, you have to understand that many days I spend in bed because the only way to get some relief from my pain is to lie in a fetal-like position. I know that doing that does nothing to help my muscles (my physical therapist has told me a thousand times) but some days that is really all I can do. Today I woke up, got dressed, and went to run a couple of errands. I came back home and resumed my fetal position for about an hour or so, but then got up and washed two loads of clothes. That in itself would be good, but it gets better! Later on this afternoon I got back up and dressed, put on my “happy face” (my “everything’s ok” face) and went to the store. No, I didn’t want to go, but I told myself a couple of things to get me going: 1) I need to eat and there is no food; 2) if I don’t go, I won’t have coffee in the morning (that could almost be considered a sin 😉); and 3) it may hurt, but it does my body good to get out and about for a while. So, I go to the store for a week’s worth of groceries, come back home and……..wait for it………COOK SUPPER! It was only spaghetti, which is pretty quick to fix (I cheated and bought spaghetti sauce because my garden tomatoes aren’t ready yet), but the point is that I only rested for about 5 minutes from the time I finished putting everything away until I started cooking. By the time I was finished however, I was hurting too bad to eat. I took one of my pain pills ( the ones that I hate by the way, have I mentioned that?) and fell asleep (that would be one of the reasons I don’t like them). I finally ate supper around 10:30.

The point is, though, that I did it. And I’m proud of myself and I hope this means that the RF (radio frequency) treatment is going to work. (I also did something ELSE 😍 last night…it’s been a WHILE! Usually the pain comes the next day (at least I can enjoy it while it’s happening) but I’ll just have to wait and see how it goes. I have a “everything’s ok” face for that too. If my face is all twisted up in pain the next day he sees it as being his fault and the brakes are slammed on for an indeterminate amount of time – probably long enough for him to forget the look of pain from “‘the day after”. He is a good man and doesn’t like the thought of hurting me.

So, that was my day. Maybe tomorrow will be a good one too 🙂

My pain

Image from: http://painmanagementlosangeles.com/

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.

Image from: http://health.com

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.

Day 1

I have to admit that the thought of writing a blog is very scary to me. You know, 1,001 thoughts about how no one will read it, or how will mine be different, ect. are running through my mind right now. However, I asked myself one day “if God wants me here in this crazy life I find myself in, it must be to help someone.” So, here goes – my attempt to help others by sharing my story.

I am currently 31 years old and have been diagnosed with adhesion disorder. I live life around doctors visits and tests and when I can or cannot get out of bed. Many things that people take for granted like cleaning their house and doing the dishes and laundry I am a lot of times unable to do. I WISH I could do those things. I will try to write more as I build up some confidence (I don’t have a lot of that right now either) and as I try to figure out how to tell a story as long and complicated as mine.