Finding a doctor who will support you, care for you, believe you and understand you is like finding a needle in a hay stack.
My journey began and remains just like that trying to find that needle in the hay stack. Like many women I went undiagnosed for a very, very long time, however the past 6 years has been the worst.
After 6 different doctors I was sent for my first laparoscopy after a dermoid cyst and gallstones was found, for 8 months after this I was struggling with so much pain. Two more doctors including one refusing to see me as a patient any more for a reason I have no idea why. I went back to emergency and another lap for yet another dermoid cyst. This time the surgeon advised at least it wasn't in your head after all and I had something called Endometriosis. Advising me that my abdomen, bowel and ovary had stuck together, Endometriosis and a blocked, damaged and scared Fallopian tube. They gave me pamphlets on Endometriosis and sent me on my way.
I have seen so many different doctors I cannot even remember how many 20 or 30 maybe. Some just push medications on me, some just push me out the door. I am never sure which one I might get.
3 years, three more laparoscopies and a cholysisectomy later for an infected gallbladder I am waiting on yet another laparoscopy. The amount of surgeries doesn't bother me so much it's the heart ache of doctors accusing me of being a drug seeker, Doctors refusing to see me. I want to be heard, I want to be acknowledged, I want to be supported, I want a team on my side. The same people who take oaths to do no harm and to help are the same people who have turned me away from emergency rooms time after time with nothing but some Panadol and a 'we cannot do anything for period pain'. The same people who tell me to deal with it, tell me nothing is wrong that look me in the eye when I can't not cry and tell me it's normal.
The end result is me avoiding emergency departments, having panic attacks because they won't help and causing depression. In April last year I refused to go to emergency after a week of pain my friend and boss told me to go to the doctors. I went to my regular GP that I Have seen for the past 2 years that has actually been there for me who told me something was not right and please go to emergency. I went and had the cholysisectomy the next day and was told not only did he find Endo on my liver and diaphragm but that had I waited I could have and would have died, all this because my gallbladder was so badly infected. I risked my life because I am afraid to ask for help afraid of the way doctors and nurses treat and look at me.
Once where I sat for 6 hours in Emergency because I didn't have a sprained foot or a bad cough because pain cannot be seen, only to be told again “we cannot treat Endo”. Why not? Why can't you help with the pain in the short term? Why can't you be on my team? I want you on my team.
For some reason though despite all of this I still believe that Doctors know best, that they care and that people in the health profession know what they are doing because they save lives daily. I believed for a long time that I was just over sensitive. I refused to say anything that may come across rude and I try to be brave but unlike me my Fiancee who is brave, believes that they are there to help and treating me like a I do not matter is not what is supposed to happen. He is my advocate, he tells them when they are wrong that crying so much because it hurts. Not being able to move or not being able to shower alone is not normal for a 27 year old. So many times I wish that the Doctors and Nurses could spend just one day in our home. Experience what I do on a daily basis, watch me struggling to shower,struggle to get up daily to go to work despite my pain and nausea, to feel the guilt I feel when I don't get out of bed or even watch me fall so deep into depression that I don't want to live because nothing is never going to change. They will always treat me like I’m just a drug seeker and never believe me.
Sometimes I just wish I could be a strong woman to stand up and tell them I matter because we matter too. They may not see the pain but trust me when I say we certainly feel it. I just want one day, one day free from pain, nausea, bloating or the sadness that controls me and my life. I want to finally get married and have babies because I can, but how can I do that without help.
These though are the worst experiences I have had but I have had some good experiences. My current GP cares, he understands and he feels awful when he cannot fix me. It doesn't even matter that he cannot fix me, he does something others do not, he does what he can, believes me and above all listens to what I have to say. Without his and my fiancee’s support I have no doubt I would not be here.
If you need help, call Lifeline 13 11 14 and remember #youmatter.
Please Support Endometriosis Australia https://secure3.everydayhero.com.au/charities/2895/donate