Living With an Undiagnosed Illness

My Medical Conditions
Excruciating Pain
Sphincter of Oddi
Found during a Hida Scan. Sphincter of oddi is situated in the upper intestine, or duodenum, at the site where the pancreatic and bile ducts enter. Normally, this sphincter functions as a one-way valve to allow bile and pancreatic secretions to enter the bowel, while preventing the contents of the bowel from backing up into these ducts.

When the sphincter malfunctions, it becomes overly tight and does not allow adequate drainage of the pancreatic and bile ducts. The result is a pressure build-up in the ducts, leading to recurrent episodes of pancreatitis or biliary pain mimicking gallstone disease.

Irritable Bowel Syndrome
Bad Stomach
Most people have Irritable Bowel Syndrome !
Endometriosis
Endometriosis Symptoms
2 Surgeries so far on my Endometriosis. Last surgery showed Endo has completely gone. Gyno said my Pelvis was crystal clear.
Costochondritis
Very Painful
Costochondritis is a form of inflammation of the cartilage where ribs attach to the breastbone. Pain caused by Costochondritis may mimic that of a heart attack or other heart condition.
Adenomyosis
Benign Condition
Adenomyosis is the growth of uterine tissue from one particular layer of the uterus (the endometrial glands) into the wrong layer (the muscle layer, called the myometrium). It is a benign condition, but it can enlarge the uterus presenting as a growth.
Splenic Flexure Syndrome
Very Painful
Splenic flexure syndrome refers to the trapping of gas at the splenic flexure causing distension and bloating.
Anal Sphincter Dysfunction
Constipation
I suffer extreme bouts of Constipation. Daily doses of Movicol and Normacol.
Neuropathic Pain
Damaged Nerves
Neuropathic pain is a complex, chronic pain state that usually is accompanied by tissue injury. With neuropathic pain, the nerve fibers themselves may be damaged, dysfunctional or injured. These damaged nerve fibers send incorrect signals to other pain centers. The impact of nerve fiber injury includes a change in nerve function both at the site of injury and areas around the injury. Symptoms may include shooting and burning pain, tingling and numbness or electrical pain.
Pelvic Floor Dysfunction
Cause of Constipation
Pelvic floor dysfunction, or obstructed defecation, results when the external anal sphincter and/or puborectalis muscles do not relax appropriately when defecation is initiated. People with pelvic floor dysfunction strain excessively in a feeble attempt to eliminate stool from the rectum.


Undiagnosed Illness
 
Undiagnosed Illness Continues

I waited a few months, the idea of anyone finally diagnosing me didn't seem possible. I took a leave of absence from work and was home bound for some time as the pain limited my activities. Over the next few months I developed more pain areas, the right side just under the rib cage became tender and felt bruised. When the pain hit I felt like I was having a heart attack. Of a night I would be woken up from breathing trouble, and I put it down to lying on my stomach too much and the pressure on the ribs, perhaps lack of blood supply, really not sure, your mind races.  

Sometimes when the pain hit I would almost black out, I'm really not sure why but I have come to the conclusion that it's my bodies way of tolerating the pain. I made appointments with my doctor on occasions explaining all the new symptoms, only to be told, it must be another symptom of my undiagnosed illness, so nothing was done for me.

My stomach remained the same, distended and pregnant looking, although over the months it didn't balloon any further, stayed the same shape.  Having this new right sided pain was a concern for me, it was like my whole body was slowly dying, from the appendix, pelvis, gallbladder, perhaps now my liver was having trouble. So I pushed the subject with my Doctor, and after a while he came to the conclusion I may have a condition called Sphincter of Oddi Dysfunction, so I was referred for a Hida scan.  

The specialist at this clinic was lovely. I was given I think it was three Hida Scan tests, I don't recall exactly but the diagnoses from this specialist was exactly as my Doctor had mentioned, Sphincter of Oddi Dysfunction.  

My doctor was rather pleased that he got something right. After all this time it was the only thing he picked up on so I was then referred to a specialist in Sphincter of Oddi dysfunction to discuss treatment. This specialist wasn't impressed, he said a Hida Scan is useless for picking up this condition, and full stop I DON'T HAVE SPHINCTER OF ODDI DSYFUNCTION, my pain is all in my head. He gave me a handful of NEXIUM and send me on my way...........

I felt so much frustration and anger

Looking back at my previous tests, the CT scan never picked up the sludge surrounding my gallbladder, yet when I made an appointment with a General Surgeon he noted the problem and I was booked in for surgery, which found I had an inflamed gallbladder, and as he picked up on the CT scan, sludge surround it, so I was really annoyed at how the previous CT scans, X-rays, ultrasounds, etc didn't show anything, so depending on which specialist I saw, they picked something unusual on the tests. The gyno I seen in Sydney, despite nothing showing on previous ultrasounds, decided to perform another one and he noted something unusual.

In my opinion, it really does depend what specialist you see and how much they are interested in helping you. Because the specialist for Sphincter of Oddi was arrogant, rude and mean.

So despite the specialist who performed the Hida Scan saying YES I do have Sphincter of Oddi, this was left untreated. My doctor did not refer me to anyone else for a second opinion. So my Undiagnosed Illness continues and now the only pain tablets, nufofen plus and some panedine forte starting causing me more pain. Every time I took one, I received this tremendous pain across both sides of my ribs, and my stomach felt like it was going to burst. I came to the conclusion, the pain tablets set off an explosion of gas within my stomach, the pain was I guess similar to the pain you have after an operation were they have pumped your stomach with dioxide gas, except 100% times worse.

I would be writhing around on the floor in absolutely agony, and it did take some time to figure out what caused the pain, I thought in the beginning it was my undiagnosed illness just getting worse. Again no explanation as to why these pain tablets all of a sudden starting causing me pain, the doctor didn't know. I was to frightened of taking anything from there on, even non pain medication, like vitamin supplements etc I wasn't game to touch incase I had the same reaction.

So the undiagnosed illness continues, despite new symptoms, and the Hida Scan I was left to my own devices, suffering.

The Story Continues ....... If you would like to continue reading:

read my story

I hope you visit my Undiagnosed Illness Forum


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Medical Tests So Far
I've had some of these procedures more then once
Ultrasound
CT Scan
MRI
X-Ray
Colonoscopy
Gastroscopy
Sigmoidscopy
Hida Scan
Barium Meal
Laparoscopy
Ultrasound

I know alot of people can relate. I hope you all have close families because they really do make a difference.

Exhausted From Pain

It's been 3 years and 4 months, and yep still undiagnosed. I'm extremely exhausted.

Exhausted
 
Journal

This website is meant to be therapeutic.. A place for me to vent and express my feelings. Somedays I find it frustrating because it brings back memories when doctor's gave up, saying it was all in my head, nothing wrong with me, yet I pushed on with different doctor's and GUESS WHAT ? they found more medical conditions!

Pain....Pain...Pain....Pain.....

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