After spending a nervous day sitting in the prep area for surgery it was cancelled due to previous surgeries running over time, a few weeks later my surgery was re-scheduled. I woke up in the recovery room in complete agony, the nurses asked me how bad the pain was 10 out of 10 came my cry. The nurses called the surgeon in and her intern came into the room and started pressing on my stomach, I kept pushing her hand away because the pain was so bad, she then started yelling at me and saying horrible things “eww you’re disgusting, what have you done to yourself, you are so disfigured we couldn’t recognise what was what, why didn’t you get yourself checked sooner”, she put a morphine drip on me and left. I spent the day lying in bed crying, it was the worst day of my life, I had no idea what was going on.
The next day the intern came back with a big text book which showed what I was supposed to look like, my fallopian tube was bent around and stuck to my uterus and my bowels and bladder were fused into my uterus as well, the cyst had ruptured when they were taking it out and that had to be cleaned up. I ended up spending a week in hospital in pain. The intern said everything was fine you probably just have pain from the gas that was pumped into you for the operation. I didn’t see my gynaecologist once during the week I was in hospital.
I went in to see my Gynaecologist for the follow up and she repeated what the intern had told me in the recovery room and this time she showed me a video and pictures of what a ‘normal’ woman looks like and then showed me mine and said see it’s unrecognisable isn’t it. She told me it was my fault I had done this to myself and there was nothing more she could do for me. I had started to do some research myself by this stage and asked her if I could have endometriosis. She thought about this for a few seconds and said possibly but if you do you have the worst case I have ever seen. I begged her to give me something for pain relief and she put me on a drug which she told me would stop my period, she never explained it to me fully and little did I know she was putting me into medical menopause.
I went back to see my GP I told him about the pain and he was worried about me, we did every test possible, x-ray, CT scan, MRI, and finally another ultrasound, the conclusion – gallstones! Yep the gas had rattled my gall stones and having my gall bladder out was to be. So yet again another specialist appointment and round of surgery. Again my first surgery was cancelled from the operating room, the anaesthesiologist didn’t show up to work!
I awoke from surgery with little fuss, the surgeon came around with a wad of pictures he had taken in the surgery, look at this you have growing inside you, it’s not supposed to be there, he told me they were wrapping themselves around my organs and sticking to the inside of my skin. He told me I had some horrible disease I can’t even remember the name of now. I was so unhappy and distraught with the way this surgeon and my gynaecologist were treating me I went and got independently tested for every type of STI there was, all tests came back clear. The doctor who did the test looked at the pictures and said these look like adhesions you have growing there, if you feel any bad pain go straight to the hospital.
By this stage the pills my gynaecologist had given me that put me into medical menopause had fully stopped my period but I was starting to feel horrible side effects, brain fog, chronic fatigue, terrible digestion problems, dizzy spells, uncontrollable anger, I would wake up at night covered head to toe in sweat, would lie awake at night thinking of ways to kill myself and I developed a terrible severe anxiety.
I decided to make an appointment to see an Endometriosis Specialist in Sydney he was so lovely, he went through my scans and video with me that I had brought from my gynaecologist and explained everything to me in layman’s terms. And finally he told me I did have endo, he read some of the correspondence my gynaecologist had sent to my GP and explained she doesn’t have the skills to address what was going on with me and this is why she said those things.
During surgery my bowels and bladder were unfused. I lost my left fallopian tube another cyst had formed on my right ovary and a lot of work was done to repair and keep my right ovary it was touch and go there for a while. I also learnt my ovary had been cut off in my first surgery and to this day the gynaecologist is probably not aware what she has done.
One thing I stress is please see an endometriosis specialist.
It’s a horrible chronic condition but I am so glad it is being talked about so much more in the media. There has always been a stigma attached that we should suffer in silence, hopefully for not much longer.
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