These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
Immune system issues and endometriosis
(Perth Western Australia)
I was born in 1952. Menstruation commenced at the age of eleven. By 16 I was having extremely painful periods. I would wake at night and crawl to my parents room for assistance. Mum would ask If I'd been "mucking around" with boys and I hadn't. As I had long hair and invariably went to bed with it damp that fact was attributed to my discomfort.
I commenced taking the birth control pill at 17 with a higher dose of oestrogen in it in the 60's. Pain symptoms continued. In 1975 I had my appendix removed when I presented to a country hospital in South Australia. My appendix looked relatively normal, not inflamed! Later the following year 1976 a surgeon removed my gall bladder in a City hospital in Sydney New South Wales. I came away with a 10" scar at my waistline. The report detailed 26 stones were removed along with the gall bladder. The report went on to say I had a 'chronic, recurring disorder.' Obviously an exploratory 10" incision.
When I returned from travelling around Australia my local General Practitioner in Perth Western Australia diagnosed Endometriosis when he did an internal examination. I was wanting to start a family. So he sent me to our most respected Gynaecologist who reconfirmed my GP's diagnosis without laparoscopic investigation. His word was sufficient for me too. He told me upfront I may not be able to conceive easily if indeed at all.
He recommended a course of steroids Danazol. At the time I was still taking the Pill and had decided to go off the pill and see if I could fall pregnant naturally. I fell pregnant within three months. Then the Gynaecologist told me I wasn't out of the woods just yet - don't give up your day job! He didn't think I would get past the corpus leutum stage (embryonic stage) and the placenta start feeding the foetus. Pregnancy continued well. I worked up until I was 32 weeks. I was well and in the normal weight range. I went into labour naturally but did not progress. After 18 hours I was only dilated 2 fingers. My surgeon said my cervix was not ripe at all. I wanted to deliver naturally if at all possible. The thought was when I went into labour the hormones may be released by my body and the cervix dilated but that didn't happen.
I had a distressed baby instead he was then delivered by Caesarian. A 7lb 7oz at probably 41 weeks. He had swallowed mueconium and it went I to his lung. I was 27years old. I breast fed him for 8 months until one morning he woke and wouldn't take the breast. No period in between.
I was pregnant again and delivered by Caesarian at 38 weeks a healthy daughter 7lbs 5oz. Cervix was still like a sixteen year old girl's at 38 weeks no sign of ripening.
18 months later the pain returned. Started on 800mgs of Danazol (steroid) per day for eight months. The pain was back six months after stopping the treatment.
My weight had doubled in this period. My same gynaecologist did a hysterectomy tied my ovaries together and lifted them high out of way. He also removed my cervix. Endometriosis was in the pouch of Douglas and speckled through out my bowel.
Pain symptoms dissipated...never to return.
I was diagnosed at 58 with Ankolosing Spondylo-arthritis with all the Arthropathies! Along with a reactive arthritis. For almost 3 years I have been intravenously infused on a six weekly on-going basis with an immune modulating biologic drug Infliximab (Remicade).
Two weeks ago I was diagnosed with proliferal neuropathy in the right side of my face. Neuralgia type pain involving three pathways. Currently taking 300mgs 3 x per day Gabapentin. Until this condition has been thoroughly investigated by a competent Nerologist.
This site has been very interesting and helpful to me. Is Endometriosis an autoimmune disease? Well other than pregnancy everything else I have had is. All stemming from my wonky immune system. Me working against my self by feeding on estrogen by daily taking the pill for years.
My cervix not dilating in order to give birth must relate to the hormone disruption caused by Endometriosis and the prostaglandin and progesterone factors it disrupts...
Going to Europe in 2014. yippee first time out of Australia.
As featured in: