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:

I had endometriosis, level 5, diagnosed in my early twenties via a laparoscopy. I had increasing period pain (and pain throughout my cycle) since I was 14, and for several years I bled continuously. Doctors did not recommend an investigative laparoscopy, until my early twenties.
I had one operation to diagnose the disease, followed by another operation 3 months later where the surgeons decided the bleeding risk during the operation was too great (they discovered I had a huge number of blood vessels feeding the smeared growths), so I had to undergo a 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 (subsequent investigative operations found little or no regrowth).

A specialist surgeon found obvious adenomyosis during a follow-up investigative laparoscopy. Another six month induced menopause has done a little to stunt the growth of the adenomyoma, but the Mirena IUD has been fantastic for managing the bleeding and the pain, and has stopped all endometriosis regrowth. I still bleed regularly (despite the IUD stopping bleeding for most people), and I get yearly ultrasounds and 5 yearly laparoscopies (and Mirena replacement) to monitor the growth.

I have an impaired kidney function, due to a doubled left kidney which was found during an ultrasound. My left kidney is 25% of a normal kidney due to being a duplex renal system that was never fully developed, and my right is 75%. Despite this, they are working exceptionally well, but I am not able to take any anti-inflammatory medications (as this damages kidneys).

I had recurrent cystitis (up to 14 times a year) from early childhood until my twenties, 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 developed sciatica as a child (which was contributed to by an injury, poor posture, and bad bending practices when carrying heavy loads. This is managed well by stretching routines.

Costochondritis appeared after several bronchial infections in my childhood, and was aggravated by working as a book 'shelver' at the local library. During secondary 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 occasionally flares when I am under high stress. A neurosurgeon and rheumatologist agree that this is a secondary symptom of fibromyalgia.

I was diagnosed with depression, as a result of the abuse by my father, and exacerbated by chronic pain in my teens and early twenties. The medications I was prescribed either didn't work or caused a violent allergic reaction. These days, as I am managing my symptoms well, and continue to use meditation and other stress reduction techniques, I am no longer depressed.

A sinus surgeon suggested that my sinusitis is caused by an allergy, but extensive allergy testing has not found anything, not even a cause for the stress-related dyshidrotic eczema. The rheumatologist noted that almost 100% of fibromyalgia sufferers have sinusitis. I am a lot better when I am not in an air conditioned environment (a heated environment is beneficial). Salt water rinses (neti pot) help when an infection is also present.

I was diagnosed with Chronic Fatigue Syndrome (CFS) in my teens, and suffered through several hives and shingles attacks. I have also suffered migraines since my early teens, linked to hormonal fluctuations around my period. A dentist noticed my teeth were being worn away due to grinding (bruxism), and fitted a night guard in my early twenties. The rheumatologist noted that this is a common secondary symptom of fibromyalgia.

Neurologists, and more recently, a podiatrist have agreed that I have Moreton's neuromas in both feet, but they are treatable with custom insoles in my shoes. My hand pain was diagnosed by the rheumatologist to be Raynaud's syndrome (a secondary symptom of fibromyalgia), and improves when I stop working in occupations that require typing 100% of the time. Most of my problems seem to be inflammation related.

All of the specialists and doctors I have seen over the years have been very impressed that I continue to work and study, and note that I am managing my complex conditions very well.