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
 
Ovarian Cancer Scare

I had all signs of Ovarian Cancer

Not something I wanted to hear, but I wasn't upset by being told this either, more angry then anything. After the first few Doctors, the Gastroenterologist then emergency visits, I just wanted a diagnosis, a name for my illness (don't ask me why but I needed a name at the time) and to this day I still believe and physically feel 100% deep down, it's something simple the Doctors are missing, or it's a completely new medical condition.  

Back to the Original Doctor

My (ex boss's) Family Doctor gave me the name of an extremely good Gynecologist in Sydney, so I went back to my original Doctor (the first one to see me about this illness) and asked her to give me a referral to this Gynecologist in Sydney.

Long Wait To See Gynecologist

The wait to see this Gynecologist was long, I think I waited roughly 4 months for my appointment.

In the meanwhile I made more appointments with other local Doctors to see if I could get some different opinions. I tried hard to wait out the Gynecologist appointment, but the pain was so awful.

Back To Emergency
In the space of those 4 months I went back to emergency 2 times, at every one of those emergency visits, not one Doctor could help, all saying I must follow this up with my own Doctors/Specialists.

The Other Doctors

One doctor in particular told me I was just PLAN FAT and to lose weight. I was 80kg and I'm 5 7 ft, still within the normal weight range (although I would have liked to lose some weight around the mid section, but no amount of eating correctly or exercising would remove that stomach growth), and I found it so painful to do general activities, lawn mowing, gardening, walking the dogs, etc,. movement made the pain worse. This Doctor also sent me for an ultrasound just to be sure my ovaries were all ok, and again everything came back normal, normal limits for them anyway, but to me that fluid on my Pouch of Douglas was tinkering away at me, perhaps that could give a Better Doctor more clues on my issues.

Local Gynecologist

I asked my original Doctor to refer me to a local Gynecologist while waiting for this appointment with the Gynecologist in Sydney. She told me there was nothing wrong with me, absolutely NOTHING, go away and make babies she said, get your mind concentrated on something else and your pain will go away. All in my head she said... arrggggggg.

I was so cranky (but very pleasant to her face), didn't want the added stress of arguments with Doctors. About three weeks later, one of my co-workers whom I had told about this Gynecologist, served a customer who had also just been to see her and was also informed her pain was all in her head , she was so cranky. This same lady came back into our work 2 months after (she found another gynecologist) who picked up she has severe ovarian problems, and had to have one of them surgically removed. So much for All in Your Head.

Undiagnosed Illness Continues

So many people said I should have lodged a complaint to the medical board about this local Gynecologist for the way she treated me, but alot of doctors do that (some I have seen do), they are rather arrogant and think you're wasting their precious time. If I had of known then what I do now I should have put a complaint in, but I had no energy to fight this, all my energies were focused on getting rid of this pain and receiving a correct diagnosis.  

Everyone was upset and angry about my ex boss's Doctor saying I had all signs of Ovarian Cancer, but for me I was just angry for him saying that without knowing me, nor had he ever seen me as a patient. Not something a normal Doctor would say to someone over the phone to a non patient, but it got me the name of a highly sort after Gynecologist in Sydney and I had full expectations of being cured.  

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

read my story

I hope you visit my Undiagnosed Illness Forum If you have any suggestion's or comments I would love to hear from you.


Don't forget to and check back often for updates

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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