Nifwl Seirff   :   Health

My story: medical history

Disclaimer: I am not a doctor, the information on these pages is gathered from my own experience, books, websites, and other people's experience. I will not be held responsible for any injury resulting from this information. If you have a medical condition, you should seek qualified medical advice and supervision at all times.

Summary of diagnoses:

Me

I have endometriosis, level 5, diagnosed at age 24 via a laparoscopy.
I had increasing period pain (and pain throughout my cycle) since I was 14, and between the ages of 19 and 21 I bled continuously. Doctors did not recommend an investigative laparoscopy, until I was 24. The pain levels were causing me to pass out, and I had to use dangerous doses of powerful pain-killers.
I had one operation to diagnose the disease, followed by another operation 3 months later where the surgeons decided the risk of me bleeding to death was too great (they discovered I had a huge number of blood vessels feeding the smeared growths), had to undergo treatment for 3 months to reduce the blood vessels (induced menopause), then another operation shortly after that to remove the disease that was left.

The surgeon that performed the first three operations wrote in the operative notes that I may also have adenomyosis, but did not admit that to me in person and would not prescribe an MRI to be a little more certain.

Apparently the surgeons at the endometriosis centre at the Mercy did a great job removing the endometriosis (found this in the most recent operation, where only one small spot had grown back in nearly three years), and the continuous birth control (BCP) has done wonders for stunting the regrowth.

However, the surgeon found obvious adenomyosis during the operation at age 27 with the Endometriosis Care Centre of Australia (ECCA). Having seen the pictures myself, I am forced to agree with him. The MRI also found adenomyosis in that area, and it's quite severe. Unfortunately that splodge is sitting directly on my bowel, so anything moving in there will always cause a heap of pain. Nothing I can do about it (short of removing the uterus). The only thing I can do now is manage the pain, so the next course of action is acupuncture. Currently my uterus is twice normal size, and I will need to monitor the growth - scans every 6 months. The most recent scan showed abnormal blood flow in the back section of the uterus, consistent with an adenomyoma, showing it is getting worse. Luckily the size seems to be remaining consistent.

I also have kidney disease, which was found during an ultrasound (to find the source of continuing menstrual pain). My left kidney is 25% of a normal kidney due to deterioration (and incidentally is a duplex renal system), and my right is 75%. Despite this, they are working fairly well, but I cannot afford to lose any more use of them.

I had recurrent cystitis (up to 14 times a year) from about age 6 until 22, which with hindsight, doctors have suggested it may be due to the sexual abuse I suffered at the hands of my father (from birth until age 14).

I have had sciatica since I was 12 (developed from a twisted spine, an injury at age 11, poor posture, and bad bending practices when carrying heavy loads).

Costochondritis appeared after several bronchial infections, about the same time (age 12), and was aggravated by working as a 'shelver' at the local library, poor posture and the sciatica. During high school it increased in severity, enough that I had to stop playing all wind instruments and the violin for a year. Luckily I was still able to play percussion, so I didn't feel too musically deprived! It is still around, and rears up in high stress times when I carry too much tension in my shoulders and my posture is much worse. It's interesting to note that recently the neurosurgeon commented that it may be fibromyalgia, and not costochondritis that is causing the chest pain. Ordinarily, inflammation of the intercostal nerves/cartilage/muscles would ordinarily show up on a MRI and bone scan. I showed no inflammation in the chest area. Occasionally shingles will cause the costochondritis to flare badly.

I have also suffered migraines since I was 13, usually increasing in severity, duration and frequency during a period or under high stress.

I was officially diagnosed with chronic depression, caused by chronic pain in at age 24, and it was suspected since I was 14. The medications I was prescribed either didn't work or caused a violent allergic reaction. I have been undergoing psychotherapy since age 13 for other reasons (mainly abuse recovery), and have found it to help with stress and tension levels. At age 29, I improved so that I have occasional bouts of depression, and have stopped taking anti-depressants.

According to the sinus surgeon, the probable cause of the recurrent severe sinusitis is an allergy which is causing inflammation of various parts of the sinus. When coupled with a hereditary crooked septum (crooked nose), I have very little room through which to breathe. Surgery has a 50% chance of fixing the problem, and almost as much a chance as making it worse. I am trialling using a neti pot with salt water to manage the condition.

I was diagnosed with Chronic Fatigue Syndrome (CFS) at age 28, fibromyalgia at age 29. I have had severe (and chronic) 'nerve' pain recently which is currently undergoing testing and various treatements with a neurologist. A bone scan showed my bones are 'normal' (I had an elevated alkaline phosphatase marker in blood work). I suffered through a severe hives attack (an allergic reaction) for 9 months, although allergy tests found nothing.

At age 30 a neurologist found that I had Moreton's neuromas in my feet while looking for the source of nerve pain, numbness and tingling in my extremities. I went through a number of neurological and bone tests as some of my blood tests have strange results. My hand pain was finally diagnosed to be tendonitis, at age 30, after a particularly bad flare. It is still not know what is causes inflammatory markers or alkaline phosphatase levels in my blood to be raised, or why I have a persistent fever. The neurologist did finally identify the type of eczema that has been plaguing me for years, worsening when I am stressed or anxious. Dyshidrotic eczema is currently incurable, and may be linked to an autoimmune problem.

A few months before my 31st birthday, a rheumatologist confirmed the diagnosis of fibromyalgia, and a second neurologist found no obvious nerve problems. A dentist discovered that I have been grinding my teeth (bruxism) due to chronic pain, and fitted a mouth guard for me to wear at night to protect my teeth. A diagnosis of Raynaud's has been added to the mix - being a secondary symptom of the fibromyalgia. The rheumatologist also noted that costochondritis, neuromas, sinusitis, insomnia and migraines are most likely all secondary symptoms of the fibromyalgia. As the current medication used to treat fibromyalgia does not work, there it not much more I can do. Hopefully sometime in 2008 there will be some new medications available for fibromyalgia, that work in a higher percentage of patients. I'll be revisiting this specialist when they are released. He noted that I have definite IBS symptoms, and agreed with my gynocologist/surgeon that this is due to the adenomyoma pushing into the bowel. He was very impressed that I was still working full time, and suggested that reduced hours would reduce the extra stress my body is under, and hopefully reduce the secondary symptoms to a more manageable level. Unfortunately, at the moment, this is not possible.