We asked you to tell us how the disease has changed your life and the response was unprecedented: more than 600 women responded in just 24 hours. Here is a selection of their stories
I’m 20 years old and I feel like I’m 90
When your body goes against everything you want it to do, it can be really depressing. I’m 20 years old and I feel like I’m 90. I am currently working but I’ve had numerous days when I’ve turned up vomiting or crippled over in pain. I’ve had a lot of nasty remarks about how I must be pregnant. What they don’t know is I worry all the time that I may not ever be able to get pregnant, and that I am fighting so hard everyday to look after myself and balance my life between being in pain and earning a living to support this expensive disease.
I have had two miscarriages. The last one almost cost me my life
I have a beautiful daughter but I have had two miscarriages since her birth. The last one almost cost me my life. During the D&C my womb and bowels were perforated because of the organs being stuck together. So no more children for me. I was lucky to eventually try Visanne but I was told it couldn’t be taken for more than a year. A rest from the pain was very welcome. Shame it couldn’t last.
Getting diagnosed is a battle in itself
Getting diagnosed is a battle in itself, and once you get diagnosed you think things are going to get better, but often it’s not the case. Treatment-wise, I have had surgeries, hormones, pills, and now HRT patches. I’ve also had chemically induced menopause, which is something no one should ever have to go through, especially at a young age like me. There is currently no cure for endometriosis, so we have no choice but to put our bodies through all this in the hope that something will help to ease the pain and symptoms.