My Experience Of Medical Gaslighting
In 2019, I underwent my 5th surgery for endometriosis. I’d had a lot of complications occur prior to it and it’s safe to say, I was desperate for the relief it could potentially give.
Frustratingly, shortly before I was due to go into hospital, my doctor was called away. She gave me the option to rearrange, but with how long I had already been waiting, I put my trust in the hands of another doctor who she worked closely with.
The new surgeon seemed fine. Before going down for my surgery, we spoke about what was going to happen, he asked questions and listened when I answered. There were no red flags… At first.
My consent form hadn’t been completed correctly, so he re-wrote it and handed it over for me to sign. I noticed that he had missed out the part about my diaphragm being checked. A simple mistake, I thought. When I told him, he snatched the paper off me and questioned why I wanted it checked! I explained that it hadn’t been looked at for some time and I’d been suffering with worsened symptoms. He huffed, but he added it in and I signed.
Learn the signs
Going down to theatre, I felt confident that everything had been covered. However, something else was wrong with the form and the surgeon had to re-write it - again. On reading it, he’d missed the part about my diaphragm again. Alarm bells rang. Once was a mistake, but twice?
He was enraged. He grabbed the form off me and barked “What makes you think you have endometriosis on your diaphragm!?". I calmly said I'd previously been diagnosed with diaphragmatic endometriosis. Clearly exasperated, and questioning who had told me this, he grabbed my file, trying to find evidence of my claim. Eventually, he added it to the form.
I was in a real predicament. There were clear warning signs here. He was questioning me and my doctor.
Feeling my most vulnerable
Post surgery, a junior doctor came to discuss the findings. She told me the surgery had been a success and “there was no endometriosis!”... Wait, what!? She seemed perplexed and said she would get the surgeon to see me.
The surgeon marched in and exclaimed “I hear you’ve got a problem”!? Still thinking that the junior had gotten mixed up, I explained what had been said.
“There was no endometriosis”, he replied.
When I questioned him, he simply shrugged and said “It’s gone”! He was clearly angry and he refused to answer further questions. Before he left he asked “Why are you crying? It’s a good thing you don’t have endometriosis”!
Endometriosis cannot magically disappear!
For the months that followed, I felt lost. I questioned everything I had been told since I was diagnosed. I questioned the photographic evidence I had seen and the years of severe pain I had experienced.
I eventually found out that, of course, everything he had told me was incorrect. I had been right. Everything he had removed was covered in endometriosis. There is endometriosis on my diaphragm.
But most importantly, I wasn’t crazy.
Do you know what your endometriosis phenotype is?