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Posted 5/13/2010 4:47 AM (GMT 0)
I've posted a few messages over the past week or so on here regarding the pelvic pain I was diagnosed with. I went to see my pelvic pain specialist on Monday (she's been treating me for over the past two years) and now she is saying she isn't even totally sure this is what I have. She wants to run more tests on me and she also wants me to be seen by another specialist just to make sure she isn't missing anything. They have already done so many tests on me over the past couple of years!!!! What more could they possibly do? Has anyone had any experience with doctors not being able to find out what is going on? This has been such a nightmare to deal with. My anxiety level is through the roof plus my depression doesn't seem to be getting any better. The specialist just started me on methadone which I wasn't crazy about but I've been in so much pain that I decided to give it a try. I'm on percocet as well but that seems to be losing it's effectiveness. At this point, I don't really know what to do. I'm very angry that this is all happening to me and I'm sad for my family too. I know it's been difficult on them as well. Any help anyone can give to me would be much appreciated!! Thank you!!

Stephanie
Posted 5/13/2010 5:03 AM (GMT 0)
Oh Stephanie.  I'm so sorry that they can't figure out what is causing your pain.  ((((((((((((hugs)))))))))))))  I sure hope all the test that they run will show something.  I'm sure it's very frustrating to say the least.

hugs

Loretta

Posted 5/13/2010 5:58 AM (GMT 0)
Hi Stephanie!

Your frustration must be so difficult for you to live with. Those of us who have fibromyalgia see this type of thing constantly. From the time someone gets to their doctor with pain problems it often takes 5-7 years to get a diagnosis. I'm lucky it only took me a month or so but that's rare.

You might consider getting in touch with a university/teaching hospital and see a physician there. They won't give up until they can figure it out and are also out in front when it comes to medical research. It's you and your health we're concerned about here so you can make the decision of what doctors to see and what meds to take. Don't feel bad for taking pain meds. I take them on a daily basis because if I didn't I would have no life at all.

I hope you find out something soon. You have lots of choices and options to consider.
Chutz
Posted 5/13/2010 2:27 PM (GMT 0)
Stephanie, I am sorry the doctors are having trouble diagnosing your pain. That's an awful feeling, knowing you hurt, but not being able to find the source to address the issue.

I can sympathize, because I'm somewhat in the same boat as you. My medical team THINKS they know what is causing my chronic pelvic pain, but nothing that we've done so far to help has made a difference, which leads them to question if they are treating me appropriately. I had one doctor who completely disregarded an MRI that was done that clearly shows problems with my right hip (FAI - the femur doesn't fit into the hip socket properly) - he told me that the results of the MRI were irrelevant and that what was ACTUALLY wrong with me was completely different (including mild scoliosis, SI issues, blah blah blah). This doctor recommended I see the physio he works with so I did...and his physio completely denounced this doctors opinion and agreed that the MRI was clearly indicating a problem that could be contributing to my pelvic pain. So, what they think is going on is permanent muscle damage in the lower right pelvic region, most likely caused by one of my many surgeries in the past few years (which makes sense as it only started after surgery). They are not positive though, as neither of the 2 Botox injections I've had made much difference.

Long story short it sounds like you have a great doctor who really wants to get to the bottom of this. The big issues we face in chronic pain is that it's hard to be sure you are right with your diagnosis in the beginning, and sometimes you follow false trails when you think you're on the right track. Try not to be frustrated with your doctor...and as hard as it is, have patience. Unlike many people who are waiting to get in to see a doctor for treatment, you have people working with you to find answers.

Good luck Stephanie...I hope things start moving faster for you and you can get the answers you need fast!!!

hugs,
Pam

PS: Edited to add a comment that I didn't mean to make this about me. I just wanted to explain my situation, so you could see the delay issues aren't just yours, and that there are others in the same boat as you. Sorry about turning the attention to my problems.
Posted 5/13/2010 3:28 PM (GMT 0)
Stephanie. (((((hugs))))) Yes I had that problem with my chronic pelvic pain they couldnt figure what was causing it but they finally did . I know any kind of pain is rough to go day in day out. I hope the new meds help. Sending good thoughts and prayers.
Posted 5/13/2010 3:58 PM (GMT 0)
Oh yes it can be very frustrating going from one doctor to another, as I'm going thru that right now...
But at least as long as things get ruled out, that has to be good....good luck to you and I
hope you get a good diagnosis without having to go to too many specialist...just hang in there...
and vent away anytime...
(((((((((((((((((((((((((((((((((((((((((((Stephanie))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Hugz and manke sure to keep us posted, fingers crossed for you...
Posted 5/13/2010 4:12 PM (GMT 0)
I suffered for over 10 years before a doctor finally did a bunch of bloodwork which eventually led to my diagnosis of Addison's Disease. Every other doctor i went to suggested I was just depressed or crazy, and even the ones who suggested I may have fibromyalgia didn't believe in it as a real problem. My advice is to be happy that you have a doc who's willing to try to get to the bottom of what's causing your problems rather than just giving you the brush-off...

I know it's not fun to be poked and prodded and scanned and xrayed... and i was NOT happy about the 12 vials of blood they took one day... but those 12 vials of blood located the source of my problems...

so good luck to you, and hang in there! I hope they figure it out for you. Even though I'm not "all better", it sure helps to know what to focus on in trying to fix me... and not to be considered a hypochondriac or a psych patient... :)

xoxo,
Suzie
Posted 5/13/2010 5:34 PM (GMT 0)
Hi Stephanie,

 

about all any of us here can do is stand by and lend a shoulder when we can for you to lean on. It is ok to feel as you do, it is all the part of a process that we have either have been thru or going thru, you are not alone. The one good thing I would like to point out is at least your dr has not given up on finding out what the problem is. Now a days so many drs are in the mode if they can't fix you in short order then they are done with you. So, try as hard as it may sound and go along with your dr in searching for the badly needed answers. Many of us have had to advocate for the care we have received and that can be a tough one to deal with. Depression is part of CP, they seem to go hand in hand. Many times if the depression is brought under control we sometimes see a bit of a decrease in the pain levels. Coming here and letting out your frustration is a good thing to do don't keep it bottled up inside.

 

I know I have no answers for you, but I want you to know that you are not alone in this mess, you have many people in the same shoes as you are wearing. As Chutz suggested many times a good teaching hospital can be an avenue to explore. But, I would still see what my own personal dr has in mind considering this dr knows your history very well.

 

Methadone can be a very good pain reliever, but please, please educate yourself about it. If you will do a search here at the forum for Methadone you will find very valuable information on this drug and I hope that you will read it.

 

Take care and keep posting.

Posted 5/16/2010 7:32 AM (GMT 0)
Thank you everyone for your wonderful encouragement!!!! I really appreciate the advice you have given and the personal experiences you all have shared. My pelvic pain specialist thinks I have muscle pain but isn't quite sure. I have Kaiser and I'm thinking of seeing someone outside of Kaiser to see what they are able to come up with. Has anyone tried doing something like that? It's amazing how long some people have gone until they have been diagnosed. I don't understand. I feel like medicine is so much more advanced these days and yet there are still so many things doctors are unable to diagnose. I'm still not sure why my specialist is just NOW looking into my medical history further and questioning her diagnosis. She's been treating me for over two years now!

All of my blood work has come back normal. I am starting to think maybe they won't be able to figure this out. It's been 4 years now since my pain first began and they STILL don't know what is wrong with me. I just don't want to get my hopes up. How do they test for fibromyalgia? My doctor thought that could be a possibility. She also thought it could be Chrons Disease or Celiac Disease. I've lost some weight and she wasn't very happy about that. She wants me to see another gastroenterologist. This is the third one I have seen! So frustrating!!!
Posted 5/16/2010 10:43 AM (GMT 0)
Hey Stephanie I know how frustrating that can be , I have a condition in my leg thats like celulitus but can't get a diagnosis because I have some symptoms whille I don't have others . Its extremely frustrating because then they just start having you try medecines to see there effect .First they thought it was dermatlogical , then I saw an infectous disesase specialist . .Finally a ortho surgeon SEEMS to have given me the right medication .I don't know for sure yet .It is Enough to drive you nuts but hang in there , Its our health and our bodies and we really don't have much choice . Good luck to you Stephanie I hope they can help you soon . Mikel
Posted 5/16/2010 11:59 AM (GMT 0)
Hi Stephanie. I hate getting tests. I hope that the doctors find out the cause of your pain. I also think about the fact that medical science is so advanced, and so many people still have chronic pain and don't know the true source.

Flower
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