I really need some help...

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diagnose me!
New Member

Date Joined Aug 2008
Total Posts : 5
   Posted 8/10/2008 10:19 PM (GMT -6)   
I've never posted on anything like this before. I've been reading here for a long time- and have gained strength from the people you are and the things you say.

My pain started almost two years ago, 10 months after the birth of my third child. I've had every sort of test/exam/surgery to find out what is wrong with me and we still don't know. My pain started in my lower right abdomen- right where my ovary was. At first it was a small benign tumor on my ovary that was removed, then we removed the entire ovary. Then we did a scar tissue removal. Since, the pain has gradually gotten worse (though it gets extremely bad during my periods) and I can feel it through to my back and now it goes all the way down my behind (tell me that's not fun to show a doctor-)

I've had three surgeries, 2 mri's, a colonoscopy, epidural/spinal injections, 4 CT scans, countless ultrasounds, bone scan, and x rays. They still have no clue. The pain specialist I started seeing when we moved back to Washington State just had me go to their Nurse Practicioner. She gave me the pain medicine I needed, but knew nothing about side effects and that kind of scared me. I wanted to see an actual doctor- so I switched. I don't know if that was a good decision or not. My new PM put me on baclofen, which helps, but told me that he doesn't think anyone my age should be on Oxycontin or Percocet. I've already stopped taking the percocet, and now I'm down to 20 mgs of oxycontin 2x a day. It's not even close to working and I'm really really suffering. I have three little boys (ages 5, 4 and 2) to take care of- and one has autism. I can't handle this anymore! I don't feel like I have a choice. My family practice doctor won't perscribe to me and it'll take a month or so to get into yet another doctor- and I'm afraid that the next one is going to see that I've already been to two and think that I'm a phony just looking for medicine. He says that because I don't have a diagnosis and that because it isn't cancer pain, he's unwilling to help me. He's acting like I haven't tried EVERYTHING to find out what in the heck is wrong with me. I hate that there isn't a diagnosis. I feel like I'm crazy (though I am seeing a very good psychologist who deals in pain problems and he says I'm not :-) ) My PM hasn't spent more than five minutes TOTAL with me, how could he know what's really going on anyways?

Is anyone else here out in Western Washington? I'm on the peninsula. I really need to find someone who will help me. I've got to go-I've sat too long at the computer. It' kills me.

Veteran Member

Date Joined Sep 2006
Total Posts : 1713
   Posted 8/10/2008 10:39 PM (GMT -6)   
Hi diagnose me. I'm glad you found the forum and that you chose to post. You are very welcomed here.

First of all, you are not crazy. It's not your fault that the doctor has only spent five minutes with you. The next doctor you go to, bring a pain journal with you detailing your pain, what works, the duration, type and intensity and location. Also, reveal the problems you have had with doctors and be honest up front. Bring a list of questions/topics and get all your questions answered before you leave.

Perhaps you do need some percocet or vicodin. Don't rule it out completely. The problem is you have to find someone that you can trust and talk to. Keep searching for the right one. You deserve that. I know there is a stigma with doctor hopping when pain medication is involved, but just explain that you are looking for someone who will listen to you and conduct a conversation with you on your situation. You haven't found that yet.

I wish you the best of luck and hope you find the answers you seek.

By the way, I believe Chutz, the other forum moderator, lives in Washington State and also have a valuable link to a pain journal. Perhaps she will come by and lend her expertise soon.

Gentle Hugs,

Moderator Chronic Pain
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 8/10/2008 11:21 PM (GMT -6)   
You may have endometriosis. It could have been missed during your previous surgeries especially if they were performed by a general surgeon. Many surgeons, even gyn surgeons, are not familiar with all the appearances of endo. You can have endo pain throughout your cycle and pregnancy does not cure it. You can have a small amount of endo and it can cause tremendous pain.

The Endometriosis Research Center is a great resource. The only way to diagnose and cure endo is with the help of a specialist. I know there is a great specialist in Oregon, maybe the women at the ERC can help you find someone closer.

Feel free to ask me anything.

diagnose me!
New Member

Date Joined Aug 2008
Total Posts : 5
   Posted 8/11/2008 12:25 PM (GMT -6)   
thank you all very very much for your words of support. I'm going to call my doctor today, and if I don't get any help from him I'm going to have my Psychologist refer me to one of his friends over in Seattle.

has anyone been told they have problems with their Soas muscle?

I'm so grateful for the support. I've felt so alone in this for so long.

New Member

Date Joined Aug 2008
Total Posts : 7
   Posted 8/11/2008 3:49 PM (GMT -6)   
Dagger I was going to say the SAME thing. I just met a new friend and she has endometriosis. She was explainging her symptoms and pain and they sound like diagnose me's. Diagnose me please look into that as a possible reason for your pain. I hope you get a diagnosis soon.

Veteran Member

Date Joined Dec 2007
Total Posts : 639
   Posted 8/11/2008 4:01 PM (GMT -6)   

I think your PCP is related to my PM! She tells me all the time that pain medication is only for end-of-life cancer pain. Ridiculous! I think you've gotten some good advice about the Endo. I also have PCOS (polycystic ovarian syndrome) which causes a lot of the same type of pain you are describing.

One suggestion I had for you - I don't know if you still have any of your Percocet left, but I've taken both percocet and oxycontin, and though the combination of both works best for me, when I can only take one (because of the "that's for cancer-pain only" med-phobic doc!) I have found that the percocet is much more helpful to me than the oxy when taken independently. That could be just me, but I thought I'd mention it since you said you'd dropped the percocet and weren't getting much help from the oxy. If you have some perc left, try taking that instead of the oxy - it might work better.

I am glad you have a good psychologist. Keep listening to him. You are NOT crazy! This is not all in your head! Too many doctors want to be able to isolate pain to an identifiable mark on a scan or a blood test or something like that. Unfortunately, though, pain involves so much more than what we can see. A good doctor recognizes this. Keep looking for that doctor. I am looking for one too. I have to hope that we'll both find one eventually!


Post Edited (ryand) : 8/11/2008 5:38:18 PM (GMT-6)

Regular Member

Date Joined Feb 2005
Total Posts : 369
   Posted 8/11/2008 6:34 PM (GMT -6)   

Hi DiagnoseMe,

I think u have gotten some really good advice already. I think you should def. look into Endo as a possible cause of your pain. I have had endo removed 3x w/ one time having i attached to organs and my bowels...it is very painful.

anyways, good luck!

2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day

diagnose me!
New Member

Date Joined Aug 2008
Total Posts : 5
   Posted 8/15/2008 12:09 PM (GMT -6)   
I can't do this anymore. I've called my doctor twice this week and still haven't heard anything back. I'm completely miserable. I can't go on like this. Like I said, I have three kids who need their mom. Having one with autism means I need to be supermom. I can't do anything. I feel so powerless. I don't feel like I have anything else I can do. My PCP won't prescribe me medicine- it goes back to the diagnosis thing. I can see why they'd think I was a druggie- because i can't 'prove' I'm in inordinate amounts of pain- but the fact is that I am. It makes me so mad. I leave a completely 'clean' lifestyle. I don't smoke, drink, heck, I don't even drink that much caffeine! What is it going to take to get a doctor to really listen to me? The only one that does is my psychologist- and he thinks my pain specialist is nuts. I'm sorry. I don' treally need an answer for this, I just needed to vent.

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 8/15/2008 12:19 PM (GMT -6)   
Dear Diagnose,
i'm so sorry you're having to go through this, but you have been given some excellent advice in some of these posts about seeking other medical care. Have you started to do that yet? Some members have offered to discuss this with you via e-mail. I think if you keep going back to the same doctor, you're going to get the same result. Even your psychologist was going to help you find someone else.

I think your frustration wiil only continue to increase if you try to get your current doctor to change. It sounds like you need a completely different path as far as docs are concerned. If you can find a good match (I know this is easier said than done, believe me!) you may be able to get some of your life back!

Don't waste your limited energy on something you know isn't likely to work. Put it in a new direction. Just my thoughts.


diagnose me!
New Member

Date Joined Aug 2008
Total Posts : 5
   Posted 8/15/2008 1:09 PM (GMT -6)   
thank you.

I got a visit with a really good gynecologist- his soonest available, even for someone in pain was OCTOBER. My psychologist is out of town until next week, and as soon as I see him I'm going to have him refer me to one of his colleagues. The problem is in the waiting. It's going to take a long time to get into see anyone, and I"m not sure what I'm going to do until then. Thank you for your help.
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