At 23, I decided my period pain wasn’t normal. No one I knew suffered like I did. No painkillers could relieve it. While my female GP had told me for years that, ‘Some women just have bad period pain’, and that I’d have to learn to deal with it, I insisted at last on a referral to a gynaecologist.
Lucky for me, I lived near a big hospital, and I lucked out on seeing a gynaecologist who knew a lot about endometriosis and was a skilled laparoscopic surgeon. He suspected endo within a few minutes of our chat and booked me in for an operation he told me would cut out the lesions. I researched this thing called endometriosis at the library, on the internet (which was then still pretty new!), and in medical journals and encyclopaedias I found in the offices of the nursing homes where my mother was director of care.
The endometriosis was severe, and what my doctor thought would be a quick laparoscopy turned into a lengthy operation in which he had to make a larger-than-expected cut in my abdomen and call in another surgeon to help. I had deep infiltrating endometriosis, which had fused my uterus to my rectum and ovaries. And I was diagnosed with stage IV endo, the worst category. What was supposed to be day surgery became a five-night stay in hospital. The pain was awful, but my gynaecologist was kind and informative, offering me hope for the future. He told me not to believe people who said endometriosis equalled infertility - but he added that, since endo grows back, I’d have to see him again when I decided I was ready to become pregnant.
He told me not to believe people who said endometriosis equalled infertility - but he added that, since endo grows back, I’d have to see him again when I decided I was ready to become pregnant.
I started taking the pill back to back, usually four months in a row, then having a period. This managed the period pain and meant I could schedule it around important events; I coped well enough with that for many years. But I didn’t know my bowel problems, pain and food intolerances were related to the endo. I didn’t know the back pain that was a constant companion and that sharp ache down the front of my right leg had anything to do with endo. I certainly didn’t know my dizzy spells were related. I didn’t know the fatigue - that overwhelming fatigue that slammed right into me at the most inconvenient times, and would reveal itself to the world in the shape of vicious cold sores and a thick foggy brain - was related to my endo. I didn’t know that constant ache that regularly sat at the base of my gut - not quite cramps, not quite stabbing pain - was related to endo, although I was confused by that pain because it was like I had period pain when I didn’t have my period. I didn’t talk about it. When and how do you mention pain in the butt, feeling sick after sex, and pain that isn’t enough to complain about out loud?
I went to see physiotherapist after physiotherapist and reported a fractured sacrum as the source of my back pain. No one could help.
I started to internalise the pain, to believe I was just weak. I never had the energy that my friends did. I always paid for my occasional energy bursts in a way I didn’t see happening to other people.
I started to internalise the pain, to believe I was just weak. I never had the energy that my friends did. I always paid for my occasional energy bursts in a way I didn’t see happening to other people.
And then there was the train. On a suburban Mumbai railway platform in 2012 I tried to jump on to a departing train. Instead, I slipped between the train and platform and tumbled down, tossed around like clothes in a washing machine, until - miraculously - I landed flat on my back, under the moving train. The shouts of ‘Don’t move!’ and ‘Stay still!’ from strangers probably saved my life. I heard these commands from a fog of confusion, not knowing what had happened or where I was. I decided to stay still just in case they were directed at me. I had some impression that I’d fallen.
I watched the train travel over me, about 20 centimetres above my flat, still body, believing I was about to die. How could I possibly survive being underneath a train?
I emerged with a broken shoulder, a sprained ankle, a ligament torn in a finger, and lots of nasty cuts and bruises on my face, elbow, feet, shins and knees. Blood poured off me, and oil, water and filth filled every scrape. As I was lifted from the track and fussed over by caring locals, I surmised death was still a risk factor from infection if I didn’t get the wounds clean soon.
"In the days and weeks after the surgery, for the first time I really thought about pain," writes author Gabrielle Jackson. (Supplied) Source: Gabrielle Jackson
The pain was so intense I didn’t sleep for almost 70 hours. But I was alive! People in the guesthouse I was staying at were surprised at how well I was taking it. They laughed when I joked, ‘What doesn’t kill you makes a good story!’ But I’d decided on a strategy not to think about the accident. Recalling being under the train made me panic, sweat and doubt that I was alive or that I should be. The injuries hurt, sure, but I didn’t feel bad.
The pain was so intense I didn’t sleep for almost 70 hours. But I was alive! People in the guesthouse I was staying at were surprised at how well I was taking it. They laughed when I joked, ‘What doesn’t kill you makes a good story!’
Surgery to repair my broken shoulder was also painful, but it didn’t make me feel bad either. What did was a second laparoscopy to remove endometriosis in 2016, the year I found out I had adenomyosis too. After a colonoscopy revealed extensive bowel damage due to endo, a colorectal surgeon teamed up with my gynaecologist for the laparoscopy with the view to performing a bowel resection: a section of damaged bowel is surgically removed, and the remaining bowel is stitched back together. It’s a serious operation with some risks involved.
Thankfully, the two remarkable surgeons managed to remove the endo from my bowel without having to do the resection. This was a great outcome, one I had hoped for, and I was so pleased to hear the news when I awoke.
Endometriosis was removed from my uterus, ovaries, bowel, pelvic side wall, the Pouch of Douglas and utero-sacral ligaments.
I’ve felt so much better since the surgery. But the recovery was awful, the pain in my abdomen severe; it felt like my insides were being carved with knives every time I moved. I was sick, too; I vomited from the nausea. The concoctions of drugs I was being served up seemed random and inconsistent. For seven days after the surgery, I felt worse than I’d ever felt in my life and the week after that wasn’t much better. Sick, sore, dizzy, faint, miserable. I was pleased the surgery had been so successful but I couldn’t feel happy. I faked smiles for visitors because I was convinced I must be exaggerating the pain and nausea, the heaviness of my body, the sense of dread that something very, very bad was happening to me.
In the days and weeks after the surgery, for the first time I really thought about pain. I’d never before added up all the pain I’d felt in my life. But now I relived every episode, playing it all out in my mind, obsessively. Felt the injuries, over and over. All this pain suddenly accumulated, and like a flooded dam it washed over me. I was heavy from the burden of it. And choked on it. Every vessel felt constricted, harsh, and to breathe, eat, walk, move a limb, roll over in bed, all required effort. I started to see my body as separate, something apart from me, something cruel and devious and punishing. I came to hate my body and all the pain it had caused.
Source: Allen and Unwin
I know about pain, I thought. I’ve had a broken back, been run over by a train! If anybody knows what ten is on the 1 to 10 pain scale that they ask you about every hour in hospital, it’s me! I know what ten is - it’s a broken back; it’s a broken shoulder, sprained ankle, head injury and bruised hip lying under a train in Mumbai. That’s ten! But that pain was focused and intense, and painkillers worked. They gave me relief, even if brief, from the pain and made me happy: grateful to be alive, not paralysed, in possession of all my limbs, able to make jokes and tell good stories. That pain faded, and I felt better.
But this pain - this pain after the laparoscopy and the pain of endometriosis - is nothing like that. This ache, this always-present gnawing, is the pain that makes me feel bad. No painkiller puts me in a happy mood with this pain. No bliss overcomes me. No drug can stop the nausea once it arrives. Only stillness helps. But stillness is so hard. I’ve felt ten, and I can tell you, this pain is worse.
This is an edited extract from Pain and Prejudice (Allen and Unwin) by Gabrielle Jackson.
