Undiagnosed Illness Continues -Undiagnosedillness.Org

Medical History

Irritable Bowel Syndrome

IBS
Irritable bowel syndrome IBS is a syndrome, meaning a group of symptoms. The most common symptoms of IBS are abdominal pain or discomfort often reported as cramping, bloating, gas, diarrhea, and or constipation. IBS affects the colon, or large bowel, which is the part of the digestive tract that stores stool. IBS is not a disease. It�s a functional disorder, meaning that the bowel doesn�t work, or function, correctly.

Endometriosis

Endometriosis Symptoms Endometriosis is a common medical condition characterized by growth beyond or outside the uterus of tissue resembling endometrium, the tissue that normally lines the uterus. In endometriosis, the endometrium (from endo, inside, and metra, womb ) is found to be growing outside the uterus, most commonly in the pelvis.

Costochondritis

Also called Tietze's Syndrome
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

Endometriosis of the Uterus
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.

Neuropathic Pain

Neuralgia
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.

Sphincter of Oddi Dysfunction

(SOD)
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. Sphincter of oddi

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.

Splenic Flexure Syndrome

Muscle Spasms of the Colon
Splenic flexure syndrome refers to the trapping of gas at the splenic flexure causing distension and bloating. Pain can be felt up under the left ribs. When the pain is really bad, it can enter the left armpit.

Anal Sphincter Dysfunction
Significant Cause of Constipation

Anal Sphincter Dysfunction can result from nerve damage as well as from lacerations of the sphincter. Tears are an important risk factor for long-term anal sphincter dysfunction.

Pelvic Floor Dysfunction
Predominantly Affecting Females

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.

Mystery Diagnosis

Living With an 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.

On occasions 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 more appointments with my doctor 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. 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. So I was really annoyed at how the previous CT scans, X-rays, ultrasounds, etc didn't show anything, but depending on which specialist I saw, they picked something unusual on the scans. 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.

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. My Undiagnosed Illness continues and now the only pain medication, 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 where they pump your stomach with dioxide gas, except 100% times worse.

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 tablets all of a sudden starting hurting me, the doctor didn't know. I was frightened of taking anything from there on, even non pain medications, 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: Sick of Being Sick

Medical Procedures

Colonic Transit Study

CT Scan /Abdominal / Pelvis

MRI / Chest / Spine

X-Ray Lungs

Colonoscopy

Gastroscopy

Sigmoidscopy

Bone Scan

Hida Scan

Barium Meal

Laparoscopy x 3

Abdominal Ultrasound

Pelvic Ultrasound

Abdominal Wall Ultrasound

Infrared Imaging

Cholecystectomy

Intravenous Pyelogram (IVP)

This website is therapeutic.. A place for me to vent and express my feelings. When problems bother you in real life your always advised to talk about it but with an undiagnosed illness your often told just live with it and carry on with your life. Easier said then done.

Undiagnosed Forum

Thank you to all members of the forum for your continued support, encouragement and guidance.

Mystery Diagnosis

Just over 5 years now and Im still undiagnosed. I'm extremely exhausted.