Be Your Own Advocate

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co-written by IamAwakeNowTVM

Have you ever been afraid as you’re walking into the doctor’s office? You just had tests done and you’re afraid that your test will come back negative?  Most people hope, even PRAY for negative test results…’the cyst was benign, you don’t have cancer Mrs. B.’ or ‘the 24 hour heart monitor showed no problems, you’re heart is fine for now Mr. G’.  This is how it’s supposed to be…hoping that nothing is wrong because you feel fine.

There are many people out there, though, where this is just not the case. They know their bodies, they know something is wrong, and they feel pain…but they can’t prove it. They want a positive.  They are sent from one doctor to another, one specialist to another, each doing their own blood work, imaging (x-rays, CTs, MRIs), and other tests just to keep being told “No, I’m sorry Mrs. K.  There is absolutely nothing there that can be causing your pain.  Have you thought about seeing a psychiatrist?” In other words, it’s all in your head.  Are you going to take that?

For me personally, it took two years, one cyst, two surgeries, two GPs and two specialists to mention that I had Adhesions.  One of those general practitioners did blood work and x-rays looking for something that could be causing my pelvis/abdomen to hurt.  Of course, he found nothing.  I went back two more times with the same complaint, because the pain (at that point it was more of a constant discomfort) just would not go away.  The last time I went, my doctor was on vacation or for some other reason was out of the office and one of the other clinic doctors saw me.  He told me in a very antagonizing way that he had reviewed my chart and that the lab work and imaging that had been done previously had showed nothing, so he didn’t understand why I would repeatedly return claiming to have the same problem. I told him that I returned because ‘the problem‘ had refused to go away, so there had to be a reason for it; he in turn refused to listen.  I was informed that there was absolutely nothing he could do but to refer me to a psychiatrist.  I was so angry that he had blown me off the way he had that I was in tears as I was leaving… oh, but there was more.  To add insult to injury, as I went to check out, the receptionist (who had been a coworker of mine a few years earlier) told me in a low voice as she was handing me my referral (that I had absolutely no intention of using) “I just wanted to let you know that Dr. X just told me to add you to the clinic’s list of drug seekers”. I was floored…I hadn’t even asked for pain medication, just answers.  Needless to say, I never went back there again.  Once the pains started getting worse, I was able to describe them better, so this time I went to my ob/gyn.  He did some imaging because my abdomen started swelling besides the pain (which had gotten worse) and he found a cyst.  At first he tried to give it time to go away on its own.  When it didn’t, he scheduled surgery.  After that surgery was the first time I heard the word that now haunts me even in my dreams: Adhesions. He didn’t really explain what they were, just that he had cut them away so I would feel better. And I did…for a while.

It took another 3 years, two cysts, one GP and four specialists to admit that it was the adhesions that were causing my pain.  I moved to another city to go school.  When the familiar pains and abdominal swelling started, I went to the first ob/gyn in my new town.  He found another cyst and told me that I needed a total hysterectomy…(crickets chirping…I was only 27).  I respectfully told the old man that he had lost his ever loving mind if he thought I was going to agree to that, so to try again.  My next option ended up being a fertility specialist.  He did one surgery and it felt so much better afterwards (well of course because the pain was gone…p.s. There is a huge difference between the pain I had before my surgery and normal post-surgical soreness) so anyway, when the doctor’s assistant came by to check on me I already had clothes on and was laughing and joking around. The lady did a total double take to check out what was going on and asked me if I was the one who just had surgery.  I said yes and she was amazed that I felt that much better that fast.  When the doctor came, he told me that he had gotten the cyst and that I had adhesions, but that they were pretty bad and that trying to cut any of them “would have been too risky”.  The second cyst and subsequent surgery was basically the same.  I kept hurting a little afterwards, (not like now, but hurting just the same).  I mentioned it to the doctor and he checked for a new cyst, but there was none.  He told me that he had no idea why I was hurting if there was no cyst to be causing the pressure inside that I was feeling.  He said that the adhesions could be a problem, but that it was beyond his area of expertise and I should see an oncologist because they were the best surgeons – which I did – only to be told that he was very sorry, but he worked with cancer not adhesions. I wasn’t really sure where to go from there, so I decided to start researching these things called adhesions that everyone kept telling me I had. The information said that they could sometimes cause pain, and I had every single symptom mentioned there plus the recurring cysts, so I figured there was a pretty good chance that this was the culprit.  The issue then was finding a doctor who knew enough about them to help.

I thought I was the only one who had adhesions.  I thought that I was some sort of freak of nature (well, at least that I was abnormal) until I found an online support group just for people with adhesions.  Although the support group was based in Australia, I found a lady’s profile on there who lived in Alabama like me.  She raved about the doctor she saw who’s office just happened to be in my town!  I looked the doctor up online and the lady wasn’t the only one who raved about him.  There were positive reviews about him, the other doctor who practiced there, and even the rest of the office staff.  Then I found out that the doctor who founded the clinic had passed away.  So, I focused on the assistant-turned-primary doctor. He had the exact same positive reviews as his predecessor. So I said to myself  ‘Self, I have got to see this doctor.  Maybe he can get rid of these adhesions and my pain will stop” so, I called to make an appointment.  This was a ‘pelvic pain’ clinic.  That was perfect since what I had was pain in my pelvis (are you seeing how this is all fitting together?)  My appointment was actually three months away (pretty busy guy, must be a good sign) but since I had requested to be put on the waiting list for cancellations, it only took about 2 weeks to get in.  The rave reviews had been right.  He was thorough during the pelvic and physical exam, thorough in his assessment of the issues, he asked the right questions, and he listened attentively to my story.  All in all he spent close to an hour with me.  And after reading the reports from the previous surgeries, he said the one thing that I had waited five long years to hear…”You are covered in adhesions; that’s why you’re hurting so badly.” Validation. I even remember telling him that the doctors before him said that they didn’t know why I was hurting because they couldn’t find anything on the tests. That’s when he explained that adhesions can’t be seen on any test.  The only way was by seeing them during surgery.  I still wanted to make sure so I asked him why they made me hurt so badly.  He explained that basically my insides were glued together…organs stuck to other organs stuck to bowel stuck to the abdominal wall.  Every move I made would pull the muscle which would pull the adhesion which would pull on one of my organs, and organs just aren’t made to be pulled on. I asked him if he would be able to cut them out like before so that I would stop hurting.  He kind of got this sad look on his face and told me that he was a good surgeon, but what I needed was a GREAT surgeon.  He told me that by this point, the adhesions were so bad and so much bowel was involved that it would be difficult to find a surgeon willing to operate, but he also said that in the meantime he would try everything he knew to do to help me control the pain until surgery was an option again.  He said “It will be a long bumpy ride, Joy, but I will be here with you the whole time.” I was so happy but so scared at the same time. I had a disease that no one knew about; that doctors wouldn’t admit to.  That disease was causing my pain and discomfort and I was just going to have to live with it.  There was no definite cure, only managing the symptoms unless I could talk someone into cutting out the adhesions, and then there was no guarantee they wouldn’t grow back.  But, on the other hand, I finally knew what was wrong with me, I had a doctor to validate the pain I had felt for so long instead of trying to send me to a shrink or say I was a drug seeker and, most importantly, I had a doctor that cared about me.

The moral of this story is that you have to be your own advocate.

 

You are your best Advocate

Knowledge Builds Confidence

Confidence Builds Enthusiasm

Enthusiasm Advocates!”

Listen, nobody’s going to do it for you.  Do the research, do the leg work.  Get all of your medical records together.  If you have a smartphone or a tablet, put the records on there including any x-rays, CTs, MRIs and then make sure to take it to the doctor with you.  If a doctor tries to say he hasn’t seen the test results…show them to him, right then and there. These doctors are working for YOU, not the other way around.  So if you go to a doctor who doesn’t listen to what you have to say, call them out on it – or better yet, just don’t go back.

 

“I have actually stood up in a provider’s office 5 minutes into a ONE HOUR appointment, reached out my hand to shake his, and said this: ‘I refuse to have my medical conditions and my intelligence insulted.  Would you mind having your receptionist refund my co-pay please?’”

Find a doctor that will listen.  You know your body better than anyone else.  If you know something is wrong, find a doctor who cares enough to find out what.  If you don’t know where to start, but are reading this post, then you are already in the right place…the internet.  Google your city and the type of specialist you need and go from there.  Look up each doctor listed individually.  There are lots of websites that provide reviews and other information you might need such as the hospital they are affiliated with, their address, and their phone number.

Lastly, the prescription drug abuse epidemic has made it nearly impossible for people to get relief from their pain.  Unfortunately, doctors DO look at your appearance and your attitude when trying to figure you out.  If you are too shy, too pushy, act like you are trying to “play” the system, look like an “abuser”, or especially if you don’t have much evidence to “prove” your pain, it is more likely than not that you will be overlooked and not provided appropriate pain relief.  I know that when you hurt, the last thing you want to do is get dressed up to go to the doctor.  You don’t have to.  But you can’t just roll out of bed (without washing your face and brushing your hair) and show up in your pajamas.  You have to be confident in your self and in your story.  But most importantly, be honest about your pain and your pain levels so that you can get the best pain management possible.

The thing is, I was lucky.  I only had to wait five years to get my diagnosis.  There are people who have waited 10 or 15 years…some take more and some unfortunately aren’t diagnosed until autopsy.  Don’t be one of those people.  Do your research, be your own advocate, and find a doctor who cares more about his patients than counting his money at the end of the day. Most importantly, be honest with your doctors so that they can help you.  If you already have a diagnosis but don’t believe you are getting the treatment you deserve, the same goes for you.  The doctor is supposed to work for you.  Find one that will.  Honestly, it will change your life…and for the better.  It will be worth all the work you put into it.

Edited on Jan. 1, 2014

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7 thoughts on “Be Your Own Advocate

  1. I totally get your whole story. I had cyst after cyst after cyst. I even had a dermoid cyst which can take on human like characteristics, such as hair, teeth, and certain glands, etc. That cyst and ovary had to come out right away, but I continued to get cysts, have surgery, get another cyst and, of course, all these cysts were very painful, as you know. I’ve had 11 surgeries total. 9 of which were in my abdomen, that’s why I have all the adhesions and no one will touch me to get rid of them until my organs are pulled out of place. NICE! I feel your pain, girl. You know I do. The last time the adhesions attached to my small intestines and drug my small intestine over and attached it to the bottom of my stomach, so my intestines were hanging in a loop from the bottom of my stomach which could have caused a bowel obstruction. They were kind enough to go in then and remove that mess. Now it’s just suffer until my organs are out of place, hoping they notice before it’s too late. These adhesions can strangulate your organs. It’s a very serious matter, really, so I don’t understand why they have to wait until it gets so serious. I’ve had 11 surgeries, what’s a few more, if that’s what it takes to get some damn relief. I’ll talk to you soon. I hope you are feeling better, my friend.
    Peace and Hugs,
    Tammy 🙂

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    • You know, adhesions have been the best kept secret in the medical (especially surgical) profession for years. You know what I think. I believe that since 93% of all people who have abdominal surgeries (http://digestive.niddk.nih.gov/ddiseases/pubs/intestinaladhesions/) develop adhesions, they should warn people about them. I mean, when you have laparoscopic surgery, for example, they warn you that there might be a chance that they have to open you up, they warn you of the possibility of infections and accidentally nicking your bowel, they even warn you of the possibility of death. So why don’t they warn people about adhesions, and use adhesion barriers EVERY TIME? If nothing else, it would raise awareness about adhesions for those of us suffering, but it would also give these people an idea (months or years down the road) when no one can figure out why they’re hurting, they may remember the warnings about adhesions and get a second look to diagnose. It’s that easy. There is no reason for people to suffer in silence for years because one or two doctors don’t believe them or can’t find anything…these people would have been WARNED of the risks from day one, so they would hopefully remember that. Oh, if I had known then what I know now…but we have to live with what we’re given, don’t we, girl?

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      • I agree with you 100% and I don’t know about you, but no one has ever used adhesion barriers on me. I learned of them through commercials on tv. Bad commercials for people who suffered from this and that after having had adhesion barriers during surgery. So, are they really even good or helpful? Sounds to me like they can and probably will cause you, yet another problem. But, yes, girl, we now have to live with what we’ve been given and don’t mind if I say, “it SUCKS.” I don’t understand why they won’t go in laproscopically, in my case, before they are moving my organs out of place, again. Why make me suffer until it gets to a dangerous point of having them removed? I know they will come back. A 12th abdominal surgery? Of course, they are going to come back, but to me it’s worth it to get some relief, regardless of how long or little that amount of time would be. Know what I mean? Your case is horrible, to the point where they are all over and attached to everything. Why did they not catch this before it got so bad? That is dangerous and putting your life at risk by just leaving them there, to continue to grow and continue to attach, and or strangulate any organs. That’s Bullshit! They need to get in there and do what they can. I think you need to keep fighting and try to find someone who specializes in this very serious matter. I’ll send you a private email just as soon as I can. Hugs to my very dear friend, my kindred spirit! I hope you are feeling, at least, somewhat better. Someone’s got to, and it sure as hell ain’t me!
        Peace and soft hugs,
        Tammy 🙂
        Talk soon. Have a good day, girl!

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        • I got it, honey. Thank you for what you said and I agree with you (M- agrees with you more). I am so torn because part of me wants to fight to find a surgeon and the other part of me wants to fight to just “manage” it. You know what I mean. We’ll see what happens. I’ll write you later…

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