My periods started around the age of 13 and it seemed normal in the first few years, at around the age of 16 I started having heavy periods that lasted over a week and severe pain, I went to see a GP who told me to take the pill, endometriosis was never discussed or explained to me. I believe this is when the disease started to grow – I am now 36 years old.
The pill seemed to suppress the symptoms, however I still had heavy and painful periods but like many females I assumed this was just part of being a woman so I took painkillers and tried to get on with life. Sometimes I experienced symptoms such as stabbing pain in my bowel, I mentioned this to a boss once thinking I should see a doctor, she made a joke of it (thinking back now she was probably uncomfortable about the subject) so I brushed it off as well, I believe now this was endometriosis growing in my bowel. I think back and there were so many symptoms but there was just no education or discussion about endometriosis so I didn’t realise what was happening to me.
About 5 years ago I started to get other symptoms such as food intolerances, severe bloating along with anxiety and depression. I saw many doctors to try and find an answer to my problem, nothing conclusive was found. About 3 years ago my husband and I wanted to start a family, so I went off the pill and my body went haywire, I had severe pain, constant bleeding and was unable to conceive. After around 9 months of trying my husband and I knew there was something wrong so we headed to Melbourne IVF, where stage 4 endometriosis was diagnosed through laparoscopy in January 2014. I really wanted to attempt a round of IVF so I tried 6 months of Synarel nasal spray to suppress the endo which kicked in after about 3 months, but the menopausal symptoms were awful and the aftermath was horrendous; I ended up in hospital from pain and constipation from constantly taking codeine. I knew then I had to see an endometriosis specialist and quickly.
As I write this I am recovering from a major operation that successfully removed 90% of my endometriosis which included removing part of my bowel and the unpleasant discovery that my left kidney only has 20 per cent function left due to the disease ravaging the ureter, the doctors have inserted a stent to try and save it. I am now coming to terms with the likelihood that I will never fall pregnant due to the aggressive nature of my disease, I have decided not to do an IVF cycle due to the risk it poses to my health.
What astounds me is the lack of awareness about endometriosis especially in the medical community, I have seen more doctors and had more tests than I can count and it still took so many years for me to be diagnosed. It seems as though the attitude is, that endometriosis is not important enough to be addressed about unless it affects fertility, or people generally find it too embarrassing to openly talk about.
For too long I tried to ignore my symptoms and thought my pain was normal, so the main thing I have learnt from my journey is to listen to my body. I have realised that pain that interferes with your life is not normal and should not be accepted. Another lesson learnt, is to keep searching for the right doctor as you will eventually find one that will understand that endometriosis can have enormous physical, mental and social impacts on not only the sufferer, but those close to her as well.
The past year, despite the hardship has been a positive time for me; it has helped me grow as a person, realise how strong I actually am and understand what’s really important to me in life. I have developed a love of Yoga, it has helped me so much physically, mentally and spiritually. I have also started learning about how the food we consume can affect our health and have become a passionate, healthy home cook. My hope is that I can pursue these things pain free in the future and live a healthy, happy life.
-Submitted by Anonymous