I've been suffering with what I'll call "attacks" since August 12th, 2010.My first "attack" led me to the er - where I was found to have gallstones, it was suggested by the E.R. doctors that I have my gallbladder removed - which I did. After the gallbladder removal surgery I had hoped that it would be the end of my problems - but that wasn't the case.
In September I experienced another attack, and was admitted to the hospital, many tests were run (ct with dye, xrays, bloodwork, ultrasound) - nothing was seen in the tests and I was referred to a gastro for an endoscope. I was under the care of the gastro for six months I had the endoscope, upper gi with small bowel follow through, colonoscopy, stool samples, more bloodwork, everything came back fine. He gave me medication for spasms thinking that maybe that could be the cause - no luck.
While under the care of the gastro I started keeping track of each attack, so I could better assist my doctor in pin pointing a diagnosis. I noted that my attacks generally occurred in the morning, before I would eat anything. The attacks would last 15-30 minutes, the pain would start off with a "nawing" feeling in my stomach which was bearable but would increase and radiate to my back - which would cause it to be unbearable - my blood pressure would spike while the attack was happening. During these attacks I'd break out in cold sweats, suffered from naseau, I'd be so weak, and found it very hard to move. I also noticed that there was a pattern - these attacks would happen every month, and after an attack my bowels would become very loose.
Because the attacks were happening every month I visited my gyn who immediately told me that it couldn't be related in any way to my reproductive system because of the location of the pain. In August 2011, after numerous visits, and after complaining of heavy "clotting" during my periods my gyn thought it best to perform an ablasion and a tubal ligation - although this procedure wasn't a result of my "attacks" - what my gyn found during surgery has me questioning if it could be related. He found that I had endometriosis - it was on my bladder, abdominal wall, uterus and ovaries - he burned away all that he could find. I asked him if it could have caused me pain and he said "absolutely". He said that I should find relief now that he burned away the lesions.
Once again, I did not find relief. Here I was - 33 years old 135 lbs, no extensive medical problems (the last time I had been in the hospital was for the birth of my daughter 15 years prior) I am beginning to fall into a depression over this - no one seems to know what the pain is caused by. Last month I visited my GP because I had a cold, while in his office he asked how I was doing with the "attacks" (I thought it best to keep the gyn, gastro and GP all on the same page - so anytime one would perform a test or surgery I'd have the information sent to the others) I told him that I was still having attacks. He referred me to a different gastro. I was disappointed with his referral - I was tired of spending money and not getting any answers - I don't blame the doctors by any means - maybe it's a condition that is very difficult to diagnose. I went to the second opinion and had a MRCP done - that came back clean.
The new gastro then gave me orders for labwork - to have done during an attack. Last week I went and had the labwork done. I'm waiting on the results. The new gastro thinks that I may have sphincter of oddi dysfunction - and that I would be a type III. He is waiting for my test results to come back before any official diagnosis.
I'm desperate for hope, for answers, or just a sense that I'm not alone in this. Any words of wisdom, advice is greatly appreciated. This is not only the worst feeling I've ever had - but it is also the most emotionally draining - my daughter is terrified when I have an attack, I feel like my family is holding their breath - waiting for the other shoe to drop so to speak. I feel broken.
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