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February 08, 2012, 05:16:15 PM
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endometriosis, costocondritis, crohn's, & now nothing  (Read 809 times)

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Hi there everyone - I'm new.  It seems like a lot of you have similar experiences to tell, but here's my over 2-year story squished to a thread...it just feels nice to know that others who are going through what I am going through are reading this, so thank you. 

I started having abdominal pain in April 2008, so I went to my GP.  The pain is mainly under my ribs and to the left of my belly button, but can be all over.  It's usually a dull ache but keeps me on my toes with violent stabs of pain too.  I was a previously healthy 23 year old female (now 25), so I was afraid they'd find something awful.  Little did I know, the NOT finding anything is sometimes so much worse.  So my GP told me it was probably ovarian cysts (despite no pain in pelvis) and said to apply heat - no other treatment was suggested.  A month later, I returned with same pain and she finally actually felt my tummy, felt a "strong" heartbeat and ordered a CT scan (in case of aneurism).  CT was completely normal, no follow up.  However, later that week I woke up in the very early morning with crazy horrid pain and passed out on the way to the Tylenol.  Went to the ER and had another CT and a pelvic ultrasound (despite me begging them to do an abdominal ultrasound due to the fact that none of my pain is in my pelvis).  Both normal...of course.  They said my ovarian cyst must have ruptured and gave me pain meds.

After 4 more months of pain and new symptoms such as back pain and what I call “shivers” – bouts of nausea and dizziness about 30 times/day, I went back to my GP.  She said I should see a doctor of sports medicine because it’s probably linked to weak abdominal muscles.  I got a new GP. 

Next I headed to an Ob/gyn who said my pain sounded much like endometriosis (despite not being in my pelvis, having no cyclical patter of occurrence, and not at all affecting my periods).  However, I underwent a laparoscopy in September 2008 and they did find some endo – although the doc later said that it was not enough to be causing my pain.  I also later got a copy of my med records and the Ob/gyn wrote “patient complains of severe pelvic pain, consistent with endometriosis”…nice guy but really?

So now it’s May 2010 and I’ve been to 10 different doctors, gotten dx’ed with costocondritis and put on amitriptyline (and almost fell asleep driving with this sleepy drug!), dx’ed with fibromyalgia (no treatment offered), and the latest was Crohn’s (took Pentasa with no help and a dreadful blow to my wallet).  I continue to have the following symptoms:
* nearly constant abdominal pain
* terrible pressure pain in abdomen (boyfriend can’t even hug my waist, kitty can’t sit on tummy)
* sometimes I feel a lump in my tummy (which the bf has felt and freaked out, but no doctor has yet to feel it – “perhaps she’s bonkers” says their expressions)
* the “shivers”
* back pain
* nausea, but never any vomiting or loss of appetite
* 3-4 bowel movements per day, sometime painful
* crazy painful pressure pain on ribs, particularly lower right
* muscle spasms
* pain in extremities – feels like bone pain, but rheumatologist is convinced it’s muscle pain
* terribly tired all the time
* heartbeat audible in left ear, or sound of thunder…?
* NO weight loss, which does anyone else feel as though they are dismissed on that basis alone?  Like you can’t really be sick if you’re not also anorexic?

I guess that’s enough for now…glad to be here!  But truthfully wishing I was napping  Smile


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I Will Be Diagnosed !


 welcome to the forum Rach

Wow so many similar symptoms to myself  Sad and I'm still undiagnosed. I wish I could offer some advice that would benefit but here I am several years down the track and no better.
Are you currently seeing a Doctor about all this (a new one  Smile ) or have plans to make an appointment ? All I can say is don't give up hope  Smile I really do know how you feel.

 Huge Hug
Samantha



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Well, this sounds very painful and scary...while my problem is nothing like your problem, I am also 25 years old, so I can definitely sympathize about spending the prime of your life in pain and at drs appointments, especially when most don't even believe you, so all you're doing is wasting time and lots of money. 

The only suggestion that I have for you is to take your bf with you to your next appointment- have him there to attest about all of your symptoms, especially about the crazy lump.  I find that it's harder for doctors to dismiss you if you have someone with you who's witnessed what you're talking about. 

Aside from that, I can only advise you to try to pray and have faith, and I wish you the best. 


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