Debbie's Story "Finally, I knew what was wrong with me!"

Hi.  My name is Debbie and I do the poster deliveries for the Te Aroha area. I became involved with Insight Endometriosis a few years ago when I participated in an endometriosis survey.  I was invited along to the survey results evening and this is when I met Deborah and Annette. That night I listened to other women talk about their battles with endometriosis and realised I wasn’t alone! At that time I didn’t have any friends or family with endometriosis (I have three sisters and none of them have it). It is hard to explain the pain you go through to people who don’t know anything about endometriosis and it can be a very lonely illness.

Although I was not diagnosed until I was 30, I believe I have had endometriosis since I was a teenager. At 18, I went to a specialist after I had had constant bleeding and tummy pains for over three months (I had earlier had the Depo Provera injection).  It was my first few months at University and I was so sick. After having a quick look at me the specialist told me there was nothing wrong with me!  I just got on with things and in my own mind decided it was the injection that had caused my problems. At 19, I had my first child. I guess health-wise things were quite good for me for the next few years. Although I had always had painful periods, bloating and bowel issues mainly around ‘that time of the month’ but had just put this down to being normal for me. I went on to have two more children and conceived straight away (luckily for me).

When I was 29, my tummy problems got steadily worse and my GP decided to send me for a colonoscopy. This showed that I had some ileitis in my bowel, but it shouldn’t have been causing the problems I was experiencing. Over the next few months, I got worse. I was in pain every day and lost weight (usually I would be happy about this!). It was a very stressful time not knowing what was wrong and being in constant pain. Six months after my colonoscopy I saw a gynecologist. I remember reading the pamphlet he gave me about endometriosis and thinking “Yes I have all these symptoms: why haven’t I been given this pamphlet before now”?!

Surgery was performed and my diagnosis was severe endometriosis. Finally, after a very long road, I knew what was wrong with me! However, six weeks after the operation I was in pain again. My specialist said if we hadn’t finished our family, I needed to get pregnant pretty quickly or it may not happen. Or if we had finished then he wanted to put me on some pretty scary-sounding drugs to keep the endometriosis at bay!  We wanted one more baby but she took a very long time to conceive, I guess due to the endometriosis. My periods started back up when she was only a few months old. They were okay at first but then over the next few years got worse each month. I decided to go on the pill four months ago and this has been a great way to manage the pain. I know it doesn’t stop the endometriosis but it has certainly helped with the pain, bloating, and heavy bleeding. I don’t know how I will control the endometriosis in the future, but at the moment the pill is helping me while I wait for a miracle cure!

I think that Insight Endometriosis provides great support, education, and advice for endometriosis sufferers and their families and think everybody involved in the organisation should be commended for their hard work!