Two Theatres in Two Days
MRI Results: No Cancer!
Thank the Sun, Stars, and Moon
A 5cm endometrioma. A chronic pain condition that will destroy my quality of life and fertility chances, but I cannot help feeling over the moon. I was hugged and cheered about the cancer all-clear, and, of course, my first and foremost thought: I am not going to die. When delving down the rabbit hole that is Google, I saw that one of the most common searches is ‘Is endometriosis life-threatening?’ We all want to live, we want to fight and get better, and are comforted to know that this illness will not kill us. However, I was saddened to see ‘experts associate endometriosis with some potentially life-threatening conditions, such as ectopic pregnancy, collapsed lung and depression.’
So we need treatment, we need help, and we are trying to ask for it, but sometimes it definitely feels like a losing battle.
The Long Road to Diagnosis
So I had it. An actual, confirmed diagnosis. It had taken 14 years, but I finally had a piece of paper that showed I am not crazy. I am not dramatic. My lack of spinach is not the problem.
I have written this in a few hundred words and, while I am writing, I am thinking this is so long. No one is going to make it through all of this waffle. Well, if you think that was long, I repeat: 14 years, which felt nearly as long as the six days waiting to find out if I had cancer. I would love to say that this diagnosis length is outrageous, that I had been treated unfairly, and that I was the anomaly. I'm not. More than that, I have actually probably had better treatment than many, being well-spoken and able to self-advocate, having parents who can support and advocate for me, and having a job that allows me to attend medical appointments without fear of losing money. I am one of the lucky ones. According to figures published by the Royal College of Nursing, it takes an average of 7.5 years for a woman to be diagnosed after the onset of symptoms, and there are a plethora of reasons for this:
- Endometriosis symptoms can be similar to other illnesses.
- Only stage 3 and 4 endometriosis can be diagnosed on an MRI; otherwise, you need laparoscopic surgery.
However, I take issue with what are essentially excuses. It may be hard to diagnose, but throughout the whole of my diagnosis process, it was never mentioned. This is not because it is difficult to diagnose; it is because it is not thought of. It is not in our regular vocabulary, and for an illness that affects 10% of women, it should be considered far earlier than it is.
Living with Chronic Pain
After this diagnosis, I was placed on a waiting list for a cystectomy. According to my MRIs, there was no endometriosis anywhere else, so once this cyst was removed, my symptoms and issues should go. Life should go back to normal. So now life is expected to go back to normal, and it does, but not for me. I was constantly in pain, dragging myself through six hours of teaching a day, meetings, marking, planning, parenting, and repeating while being told I was on a waiting list for an operation. Since the pandemic, these waiting lists can be over two years. How am I meant to live like this? Surely the idea that these are just periods has gone now that I have a diagnosis? Surely when you speak to doctors, they will be understanding, sympathetic, knowledgeable about my symptoms, and give me lots of useful ways to deal with the pain? Oh, how very wrong I was.
Navigating the Healthcare System
Waiting lists and the pressure on the NHS are insane. Again, I would like to reiterate that this is not the fault of the individuals, but with illnesses such as endometriosis, there are so few specialists and ongoing research that we have to wait behind hundreds of women. We cannot take priority because we are not dying, but we also cannot live. According to the Endometriosis UK charity:
A recent survey of 1,100 of those with endometriosis in England found that, of those who reported having NHS gynecology care canceled or postponed:
- Up to 22% are still waiting for new appointments.
- Of those waiting for surgery, up to 37% are still waiting for a new surgery date.
- 17% sought private care for endometriosis due to long NHS waiting times. 68% of those who had private care had never done so before the pandemic.
Additionally, a lot of endometriosis cases require complex operations, with multiple surgeons working together in tandem. This leaves many people with more complex cases waiting even longer until the required surgeons are all available at the same time, or with the other option to have multiple operations done at various times, resulting in more time off work, more recovery time, more damage to the body, and more time spent under general anesthetic.
Emergency Operation
It was a cold February morning, and I was carting 25 Year 10s across London to see a show, on two minibuses to enrich their educational experience, while also telling them 324 times that we could not stop for McDonald's and to please not heckle the actor who is playing Hitler. My pain made this day particularly hard, and even my stretchiest leggings and baggiest jumper could not hide the endo belly. The following day, I was taken into hospital for emergency surgery. The pain was an indicator that the endometrioma was rupturing or growing, which put my ovary at risk of torsion (twisting), which would result in it losing blood and becoming necrotic. It took me going back in to visit my students four weeks after my operation to convince them that I was not hiding a pregnancy and only looked four months pregnant. Endo belly is a real struggle, and it doesn't help that I walk around massaging it like a proud mama-to-be. While in hospital waiting for my operation, I was offered IV morphine, something I had never had before and was, quite honestly, terrified of. I despise the feeling of being out of control. I was the only 16-year-old who felt the head rush from a cigarette after half a bottle of Glenn's was more than enough, thank you very much. I was in so much pain and, for the first time in my life, conceded to the peer pressure to take drugs. I accepted the morphine. I made them give me 1g at a time to see if I was going to start spinning, vomiting, or die from an adverse reaction. None of these things happened, and for the first time, a painkiller worked at taking the edge off. I was honestly terrified of having an operation, the general anesthetic, the idea of people touching me and me having no control over anything—it was petrifying. I turned to Dr. Dad for reassurance. My hero. My rock. The man who can fix any problem.
Me: Dad, how do they know if you are going to have an allergic reaction to the general anesthetic and die?
Dr. Dad aka Hero: They don’t.
Me (maybe a bit morphine high by now): I’m sorry, what do you mean they don’t? So they won’t know I am going to die until they put it in me, and then I start dying?
Dr. Dad: Well, no, they won’t know until something happens.
Me:
Awesome A&E Doctor: Are you ready for your next gram of morphine?
Me: The anesthesiologist has been, and the surgical team is on their way to get me, so I will probably be under fairly soon. Or dead.
Dr. Dad: You should still have the morphine. You can still feel pain when you have general anesthetic.
Me: I’m sorry, what the flying cups and saucers are you on about? What the hell is the poi—
Awesome A&E Doctor and (an exhausted) Dr. Dad: No no no no!!!!! YOU can’t feel it, but your body can respond if you are in pain while you are sedated.
So off to theatre I went.
