READ ME: My endometriosis journey
My interest in endometriosis is two fold as I am of course a Nutrition professional having studied Nutritional Therapy for 4 years but I am also a sufferer of endometriosis.
I discovered I had endometriosis when I was 26. At the time it was quite a stressful experience but I am actually glad of the experience now as I may have discovered that I actually had it.
My period started early when I was in my last class in primary school. As far as I am aware nobody else in my family has endometriosis... I remember my sister who was 11 months older than me being completely distraught that I got my period before she did! I always remember thinking periods were meant to be painful and as pain is so subjective I never really questioned it. I popped a painkiller (anyone remember Feminax!?) and never really thought anything of it and I spent the majority of my teens and my 20's just like that.
One of the earliest symptoms I had with endometriosis was bleeding from my belly button (yes I know alarming)......I first noticed this when I was on a girls holiday and saw a stain on my top. I was of course very alarmed (as you would be) but I knew it had something to do with my period as it was like period blood as opposed to normal blood...
Subsequently I started to notice I needed to use the toilet a lot more frequently. My abdomen felt quite bloated and swollen but honestly my abdomen frequently felt like that. I had spent the vast majority of my 20's with what I was told was I.B.S and had been to the doctor on a number of occasions only to leave with a long list of medications that I never took.
At this time a very close friend of mine was unfortunately dying from ovarian cancer. She was very young and it made me hyperaware of what was happening with my body. One morning I woke up, went to the kitchen to prepare some breakfast and subsequently blacked out. I had been expecting my period and the pain I experienced wasn't like anything before. I knew this didn't feel like any previous pain I had before.
Reluctantly I made an appointment to see the doctor. I was poked and prodded and the doctor said she would send me for an ultrasound. I had an ultrasound and a cyst was found. At the time they thought it was a dermoid cyst (this is a cyst that can be made up of some strange material such as hair and teeth) which was a little alarming and they scheduled me for an operation to remove it.
At the time of course I didn't realise how serious it was. I think they probably didn't know whether it was something more sinister or not and wanted to operate as soon as possible. I was in the public health care system but they scheduled the operation within weeks. There were a lot of things mentioned and a lot of it went over my head. They mentioned they may have to open me up completely and even possibly the loss of my ovary. It was a frightening time especiallly as at the time my friend had only recently died from ovarian cancer.
I had also gotten another appointment in another hospital. I decided as I had the appointment already I would attend. I was poked and prodded yet again and they doctor said he didn't think my cyst was there anymore. I had no idea what to think!! How could a cyst just go away on its own? Especially a dermoid cyst which is supposed to be made out of foreign material such as hair and teeth.... This doctor suggested it may be endometriosis and also suggested I go ahead with the surgery to get a confirmed diagnosis.
I decided it was for the best. I hate uncertainty and it seemed the way to get an answer. I had never had surgery before so it really wasn't exactly what I wanted but the pros outweighed the cons.
I had my laparoscopy which went well thankfully. I was just glad for it to be over....I came around and the doctor came around to talk to me. I was still pretty out of it but he said it went well and I did have endometriosis. He also said I needed to go on the Pill continuously and when I wanted to get pregnant if I had any difficulty after a year to come back to the clinic. That was it! No after care appointment or anything like that. I really didn't know what to think.
I was so glad to get a diagnosis but I was also so confused...had I done something? Was it my fault? Was it genetic? Could I do anything for myself to control it? One of the most frightening things about endometriosis is we have no real idea of what is happening on the inside.
I went on the Pill and I also changed my diet and exercise regime. I found my symptoms improved a lot. I also noticed that my symptoms were considerably worse during months I was particularly stressed or I was eating badly. I really started to understand the impact my lifestyle had on my symptoms.
Today I am currently not on any Pill and manage my symptoms through diet and lifestyle. It definitely hasnt been a straight road but I now feel I have a lot more control over my symptoms as I know what can negatively impact on me. I now luckily am for the most part symptom free.
I'd love to know about your endometriosis journey? Everyone's seems to be different!
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