Pics to follow ;-)

From: niko (nicko69@dingoblue.net.au)
Fri Apr 20 03:35:58 2001


Helen, I don't know if my story can help, as I live in Australia but I'll try anyways ;-)

My name is Tracey Cheel and I'm a 31 yo Mother of One 10yo boy.

My story is a long one. I was misdiagosed with PID (Pelvic Inflammatory Disease) In 1989, however a subsequent laparoscopy showed Endometriosis. I was placed on Depo-Provera injections for six weeks, but heavy bleeding for four months solid and an uncompassionate doctor who refused to listen, led me to the Endometriosis Foundation in Melbourne. There I met Professor Carl Wood. Prof operated on me a couple of days later to find the Endo had spread extensively from the previous doctors negligence.

The Endometriosis over the years became quite agggressive, and I was diagnosed with fourth stage chronic Endometriosis.A retroverted uterus was not helpful. Adhesions would stick the whole left side of the uterus to the pelvic wall and cause enormous pain. Because my Endometriosis was contained to left side, Professor Wood decided to remove the left ovary in 1996, but to no avail, I was enduring an operation every three to four months for pain. The constant removal of Endometriosis would cause alot of "scar tissue", and the pelvic cavity became very sticky. thus causing adhesions. By 1998 my life revolved around my sickness. I couldn't go far as the pain would double me over, wherever I stood. Embarrassment though was the least of my problems.

Professor Wood had now discovered that I had also developed "Adenmyosis" and I had tried nearly every medication known to man kind, including "Zolodex"leaving me with no choice but to have a hysterectomy at 26yo to try stop the merry-go-round of pain. My hysterectomy was quite painless, and I returned to work three days later. I was very used to pain by now. But alas, the pain returned, for the first time on the right side.

The pain continued on the right side until I decided to have the final ovary removed and go on to HRT. My bowel could not absorb the HRT pills, I was allergic to the patches, and my body was using the implants within three months, Two years later I finally discovered "Evista" and fixed the saga of HRT .. Then the worst happened, as my bowel completed obstructed and I was sent for an emergency laparotomy. My bowel had become floppy and had twisted, kinked and totally blocked not forgetting the massive adhesions encasing it. The surgeons stitched the bowel to my sides and took my appendix out as the law requires from a vertical cut. Removed adhesions and diagnosed me with IBS (Irritable Bowel Syndrome). A vertical laparotomy is not good for a person prone to adhesions. The scar tissue from this alone has caused so many subsequent operations.

Back on my feet again, but short lived as 12 months later, the bowel completed obstructed again. The second laparotomy involved a huge resection to make the bowel "taut". And was completely successful.

Massive adhesions from nearly 30 operations to cure the higher of the evils, my fight is far from over. I had surgery on February 12th with some barriers placed to help the reformation. So far so good.

THINGS I NEED PEOPLE TO UNDERSTAND

I'm sick of being treated like a "Whinger". I'm sick of my arms being checked for "track marks".. as though I'm some druggo !! I have endured pain, that I wish on NO human being. A diabetic receives insulin, a person with heart problems receives heart medication. What of a person in pain? Because drug addicts use narcotics, then we must be one? My doctor told me that you do NOT get addicted to pain medication, if you have "real" pain. I wish I could take my medical charts everywhere I go, then I am validated in the medical field's eyes. Emergency visits, waiting in doctor's surgeries to be told they can't help me anymore. Invasive test after test. Endometriosis and Adhesions DO NOT show on any of the scans !! But we are told to have them anyway... The helplessness, the frustration that only a person enduring this can totally understand. You cannot see an open wound, therefore it's not there? The loss of quality with my child cannot be replaced. He has grown so much with mum being "sick". My medical bills over the last fourteen years total nearly $200,000.00 this finacial burden helped in the failure of my marriage. The mental fatigue is enourmous.

My partner Nik and myself continue to struggle to make ARD more widely recognized as "Real Pain". We want to educate and help ANYONE who needs advice. This is our life ;-)


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