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Is it forever?


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So I am 17 and have lived with this chronic extreme pain in my lower left abdomen for almost 3 years now. Besides a diagnosis of PCOS, which my doctors don't think is the main cause of pain but rather just a second pain in the ass, no one has been able to find a cause for it. I have been to more than 15 doctors and many hospital trips and tons of tests and we are no closer. We waste time trying to treat things that end up not even being an issue and every time I see a new doctor and have hope for a second, they don't know anything about my case and it feels like we are starting over. I had to be pulled out of school, I have been taking classes online fore 2 years now. All of my friends have forgotten about me. I have a small support system of very close online friends I have had for over a year but besides that I am alone. No one understands chronic pain, especially as a teenager. I am fortunate enough that my parents do because my mom has RSDS and my dad is a chiropractor and treats chronic pain, but no one else even gets it. I don't "look sick" so why can't I do things.

The last 5 days the pain has been unbearable. I've been to my main doctor who ran some tests and mainly just brushed me off. They didn't find anything and I am jujst getting worse what feels like every hour. What if it never ends? What if I am stuck like this, not being able to have the freedom to even go grocery shopping with my parents because of pain. What if this is all I get for the rest of my life. How do I deal with that? I missed something incredibly important to me that I had been waiting to go to for years today on top of how bad the pain has gotten and I just can't handle it anymore. I am just praying someone here might have some advice for me or something because I am losing it.

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First, I just want to say I'm sorry you're experiencing this -- I can relate to what you're going through, and it's profoundly difficult. My youngest son, who recently turned 18, has had a similar experience on and off for the last ~six years. So I understand exactly what you're going through.

 

One suggestion I'd have is that you try and find a doctor who specializes in something called postural orthostatic tachycardia syndrome, or POTS. It's complex, and not completely understood, but the basic issue is that your body's autonomic systems for things like heart rate and blood pressure become poorly controlled, creating a range of symptoms whose cause is then difficult to diagnose. (In my son's case, like you, the primary issue has been chronic stomach pain and nausea. Sometimes people have issues with fainting and headaches.) As you've experienced, it can become an absolute nightmare -- we've had multiple specialists and doctors basically throw up their hands and give up, or blame him, suggesting it's psychosomatic. 

 

Happily (there is a happily!), we've been able to find a physician who specializes in this and who's been able to start treatment that is helping considerably. (Primary focus is medication, including beta blockers, that help maintain proper heart rate and blood pressure.) It's helping him a lot.

 

Here is a website that may have useful information -- they include a list of physicians who specialize in the condition: http://www.dinet.org/index.htm

 

I wish you luck in overcoming this. Let me know if you have questions, I can try and answer.

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Those are all excellent ideas.  Another to think of is an undiagnosed complicated hernia.  I had one for approximately 23 years and it didn't "emerge" until I had abdominal surgery.  Then they thought it was just a small 3 cm incisional hernia.  They were wrong.  It was over 15 cm and ran like a zipper up to my chest.  I just dealt with the pain because I'd already given up on finding a solution to the problem.

 

I hope you find your solution and some relief soon.

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First, I just want to say I'm sorry you're experiencing this -- I can relate to what you're going through, and it's profoundly difficult. My youngest son, who recently turned 18, has had a similar experience on and off for the last ~six years. So I understand exactly what you're going through.

 

One suggestion I'd have is that you try and find a doctor who specializes in something called postural orthostatic tachycardia syndrome, or POTS. It's complex, and not completely understood, but the basic issue is that your body's autonomic systems for things like heart rate and blood pressure become poorly controlled, creating a range of symptoms whose cause is then difficult to diagnose. (In my son's case, like you, the primary issue has been chronic stomach pain and nausea. Sometimes people have issues with fainting and headaches.) As you've experienced, it can become an absolute nightmare -- we've had multiple specialists and doctors basically throw up their hands and give up, or blame him, suggesting it's psychosomatic. 

 

Happily (there is a happily!), we've been able to find a physician who specializes in this and who's been able to start treatment that is helping considerably. (Primary focus is medication, including beta blockers, that help maintain proper heart rate and blood pressure.) It's helping him a lot.

 

Here is a website that may have useful information -- they include a list of physicians who specialize in the condition: http://www.dinet.org/index

I wish you luck in overcoming this. Let me know if you have questions, I can try and answer.

I will absolutely look into that because it is not something I have even heard mentioned as a possibility. Thank you. It's always nice when I have something specific to bring to my doctors

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I was diagnosed with POTS when I was 22 (although I barely made the cut). In turns it was actually Autoimmune related. However my pain was not as direct as yours. My abdomen hurt as well as nausea, fainting & headaches, but I also had a lot of pain in my joints & muscles as well neurological symptoms (which aren't as common in POTS). Chronic pain is very hard to diagnose when there is no clear & obvious reason you are having the pain. Which is a pain in itself.

 

I wish you luck. It is a tough situation to be in & very hard to navigate through. But there are answers out there. I actually found my answer randomly & at a moment I wasn't even looking for it.

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