My experience with endometriosis can be best described as a never ending journey.

March 10, 2016

I am in severe pain every day, I have trouble with my bowel and bleed very heavily. My periods are irregular, I get excruciating pain when I exercise to the point where I pass out. I got my first period when I was 10 years old and straight away I was placed on the pill for irregular bleeding and severe pain.

 

The pill generally would work for a few months and my gynaecologist would then change it due to break through bleeding. I had this with 5 different pills. I began bleeding for up to 3 months straight and my gynaecologist proceeded to tell me that this was normal. I then saw my gp and got a referral to another gynaecologist. Once again they changed my pill and I was still having my periods for anywhere between 2 weeks and 3 months. I found on average I would bleed 21 out of 28 days.

 

Endometriosis is in my family and is very aggressive. My nan had a hysterectomy at 28 and my mum at 40. We expressed our concerns to the gynaecologist in regards to endometriosis yet they somehow still needed convincing to do a laparoscopy. Eventually she agreed but as my health fund refused to cover this procedure I had to go publicly which meant another gynaecologist would perform the laparoscopy.

 

When I went back for my results it was evident that I in fact do have endometriosis. It took 10 years for a diagnosis. So to treat the excruciating pain I am in everyday the doctor placed me on Synarel, which is a nasal spray, it stops your periods and is a pain reliever. It was working, I wasn't getting my periods and I was pain free and I thought it was too good to be true. Of course I was right.

 

My body was going through the weirdest feelings I had ever felt. I had no sex drive, I was having hot flushes which made me want to scratch my skin until I bled and the hot flushes also made me pass out. I called my gynaecologist after 6 weeks of these horrible feelings and he straight away placed me on hormone replacement therapy. I went to my GP to get a doctors certificate and I told him what was going on, straight away he sent me for a blood test to screen my hormone levels. When a woman is going through menopause they have a level of 110 of oestrogen, my level was currently below 80. The Synarel spray had sent my reproductive system into failure.

 

To my surprise I had no emotions toward the situation, I had no emotions towards anything. I went back to my gynaecologist who was so shocked that my body was doing this. They proceeded to take me off the nasal spray and the hormone replacement therapy. After 5 months I finally got a period. I went back and got another hormone screen and found out oestrogen was back in my system. I have since had my periods irregularly but I still get them at least once every 5-8 weeks which is better than nothing. Although the pain is just about unbearable and the bleeding is insane.

 

Throughout the past 10 years I have tried just about everything in regards managing the disease and nothing has worked. So at the moment I am management free and pain killer and contraceptive free. Due to being admitted to hospital I have had to take a lot of sick days. The first two days of my period I am in bed in tears. I drive 100km to work and 100km home which means I cannot use codeine for the pain either. It took a long time for my bosses to understand what was going on as they could only see the amount of sick days I was having and not the reason why. Some days it gets very hard but there isn't much else I can do.

The best resources other than my doctors has been the Internet and my Mum and Nan due to them being through it all.

 

My experience with endometriosis can be best described as a never ending journey.

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