These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
I have Adenomyosis - endometriosis of the uterus
(Trinidad & Tobago, West Indies)
I am 35 years old and was diagnosed in 2005 after a myomectomy (uterine surgery). Of course I was ignored for many years before and then misdiagnosed through ultrasound. I also have PCOS.
How has the disease changed my life?? In every way.
- Crippling pain
- Heavy bleeding & clotting
- Inter-menstrual bleeding
- Inter-menstrual pain
- Pain and bledding after sex
- Symptoms of fibromyalgia
I basically have had to plan my life around period time. I don't go out during this time - too many sanitary napkin changes. Besides the pain used to be so bad - all I wanted to do was stay in bed with my hot water bottle and Chinese medicine oils.
It got so bad during the years 2009-2011, that I was in pain everyday. On each day for months I would bleed/spot, with migraines and severe cramping. Not to mention the back pain, leg pain and fatigue. My gynaecologist says the pain I experience is very much like child birth pain. Imagine that EVERY DAY.
I worked through it too, I studied through it also. Stress I learned played a huge part in my disease - through the internet of course.
I am now seeking alternative treatment:
Traditional Chinese Medicine - Accupuncture and Herbs.
It has been six months and I am off my migraine meds and do not have to take painkillers everyday of my life - Thank God!!!!
I am still hoping for a reduction in bleeding and period length so that I can go back to work. I have not worked since late 2009.
This disease has certainly changed my life, it has made me more dependant on my parents and boyfriend and has robbed me of time. I have gotten over (basically) the fact that I most likely will not have kids. That was all I ever wanted - I have had to change my dreams, give them up, reduce myself to a fraction of my former self. I try not to think too much about the time lost and look foward to the future.
Thank you for giving women like me a forum to learn and share. Most people do not understand and think that I am faking sometimes. I do not look ill, so I should just suck it up and get on with it. They say things like:
- I am weak
- I cannot take pain
- I LIKE to take the painkillers
- I take too many
- Just take your womb out
- Don't worry - you'll have kids
- You still at home??!!! hmmm. When are you going back out to work???
- Get a husband, you won't have any more pain.
- Have a child - it will fix everything
I smile through it.
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