Guest post by Emma Williams-Tully
I really am not one of those people who knows all the ‘cool’ phrases that younger people use nowadays. Whenever someone uses one, I tend to laugh along and then later on ask my husband what the heck they meant like a little old lady. When I first heard the term gaslighting, I genuinely thought it was about teenage boys lighting up certain body odours coming out of certain body parts… This clearly isn’t the case, and gaslighting is actually something that has happened to me over and over again, by countless medical professionals, making me feel like my failing body is all in my mind.
I have numerous chronic health conditions – some that I just live with, some that are completely debilitating. Stage 4 endometriosis being the main one; the big Daddy. It has such a huge impact on so many aspects of mine and my family’s life that, after six laparoscopies, I made the decision to have a full hysterectomy, requiring two major surgeries, at the age of 31.
It was one of the most physically and mentally difficult challenges I have ever faced. I could not get my head around it. We were so, so incredibly lucky that we were able to have our daughter, but it did not take away from the utter heartbreak that we would never be able to have any more children. That I would never be able to be pregnant again.
I was put on HRT straight away and there began the journey of menopause. The changes in my skin, the ‘tropical moments’, just feeling different. Months of recovery followed, with damage to my urethra requiring a stent for 8 weeks – meaning that every time I went for a piddle the pain was excruciating. I had recurring infections, requiring IV antibiotics and ridiculously strong pain medication. I just felt like, after everything, something wasn’t right…
As someone who has had endometriosis since her first menstrual cycle at the age of 10 (to be only diagnosed at 21), you certainly begin to know your own body. Before every op I would describe to my family with a pin point where they were going to find the endometriosis, and I was always right.
Not long after my hysterectomy I started bleeding every month for a week, without fail. I even went to A&E in the same hospital where I’d had all of my surgeries. They examined me and my bleeding, but nothing was done. My migraines were getting to the point of being unbearable. I wasn’t able to function as the pain was just mind numbing, and I had lost over a stone and a half. This was partly due to being in so much pain, and partly due to a bulge I could feel in my stomach. My haematologist referred me for an ultrasound on my spleen as he was concerned with my weight loss, and it proved him to be right: my spleen was very swollen. But what else showed up made for a moment I will never forget.
I happened to mention in passing to the sonographer, as we were chatting, that I was also experiencing awful pain on my lower lefthand side. She kindly said she would put the ultrasound scanner over for me as she had the time. As I was talking to one of her colleagues, she turned to me and asked: “When was your last cycle Emma?”
“Sorry? I don’t have periods; I had a full hysterectomy…”
They both looked at each other. It’s that look you get. You know the one, when they both look at each other, not knowing how they’re going to say that next sentence.
“Emma, you have an ovary with a large cyst attached filled with blood.”
What? I felt numb. Completely and utterly numb. Altogether I’d endured 13 hours of surgery, months of recovery. For what?
I walked out of there to my mum in the waiting room and my face said it all. I just walked down the corridor, away from everybody in the waiting room, sat down and sobbed.
As soon as I got home, I rang my surgeon’s secretary straight away to explain what had happened, honestly thinking they would be as confused as I was and book an appointment to see me.
“It’s nothing to do with us.” His secretary said firmly.
“We didn’t request the scan, so it’s nothing to do with us.”
Over the course of a 15 minute conversation I tried to explain that, even though they didn’t request the scan, there was STILL an ovary in there from a surgery they had performed on me… I could not get it through to her. It was utter heartbreak and I felt totally alone.
I ended up paying for a private appointment to be seen by another gynaecologist, who looked over the scans and confirmed what they showed. I also had blood tests showing that, although I was in the menopause, my oestrogen levels were high – meaning I had one fully functioning ovary.
I was losing more weight, my pain was getting worse, the bleeding every week was getting heavier, my migraines were more severe and I was feeling desperately ill. I felt so, so low, as nobody was listening to me. I ended up being taken into hospital after collapsing twice in one day, and the surgeons there phoned my previous surgeon, demanding that he see me as I needed major surgery.
Even then I had to pay privately to see him.
When I saw him I was an absolute shell. I was rake thin and could barely finish a sandwich. He told me how both ovaries had been removed in the previous surgery, and that apparently it was ovary remnant syndrome. A few months later I had a nearly 8 hour surgery to remove the ovary – during which my urethra was again accidentally damaged, requiring another stent for 8 weeks, a catheter for 2 weeks, a blood transfusion and a drain out of my stomach in hospital for a week.
Two and a half years on, and I have been referred back to a gynaecologist. My pain is still very debilitating as a hysterectomy is not a cure for endometriosis. I have been referred to a colorectal surgeon for my bowels, as I have now been diagnosed with severe slow transit due to all the damage to the nerves caused by the surgeries I’ve had. If there is anything I would say to anyone else in this position, it is that you know your own body. You know when something is not right. Do not let anybody gaslight you.
You can find Emma on Instagram @mummyspaininthearse