CN: descriptions of surgery, endometriosis, medical stuff
I lie awake most of the night before. I am irrationally nervous. A few hours earlier, my boyfriend and I had gone through the documents that the hospital had given me. Risk of bleeding. Risk of damage to internal organs. Risk of loss of hearing. Risk of death. They are tiny percentages. They apply to the whole population, and course you are at more risk if you are very young, very old, overweight, unfit, if you smoke. I am, as my boyfriend constantly reassures me, a very low risk case. I will be fine. I still lie awake most of the night, listening to his deep, regular breathing beside me.
Sleep must come, because I am jolted awake by the alarm, 6am. I stumble out of bed and up the stairs. They said to have a shower, so I strip naked and turn on the water. They said to keep warm, but I can’t stop shivering even as the bathroom around me swirls with steam. Loose clothes they said, so I slip into a pair of trackies and a tee-shirt, one of Jack’s baggy jumpers. My stomach rumbles, but they said no food or water so I ignore it. My flatmate hugs me, my boyfriend holds me close, and then I get into the car with my mum and we drive to the hospital. It’s a warm waiting room, and I get out my book, expecting to be there for hours. I’m not; we’re there barely half an hour when a staff member calls me through. I speak to a nurse, run through my date of birth and my address and who’s going to look after me for the next few days. I speak to one of the doctors, as she explains exactly what they’re going to do and asks for my consent. I speak to a kind anaesthetist, who asks me if I have any allergies and makes me laugh as I sign the forms.
Then I am alone, in my thin hospital gown and my ridiculous compression stockings. I have left my book and my mobile phone, stupidly, with my mother in the waiting room. It feels too late now, so I sit in silence and stare at the garish curtains around my bed. I don’t know how much time passes. The friendly anaesthetist is back. She guides me to lie back on the bed, and then she wheels me a few hundred yards into the operating theatre. My glasses are back on the ward, and the room is blurry and indistinct. People in surgical gowns bustle around me, and I have a moment of panic. This is stupid, I don’t need this operation, what am I doing here. I have a moment when I want to scream, tell them I’ve changed my mind, tell them I want it called off. And then the friendly anaesthetist is back, her hands reassuringly on my shoulders as she attaches a heart monitor. She keeps her hands on me, an anchor, as another staff member put the drip into my hand and then, nothing.
When I come to, the room is blurry. No glasses, I realise. But it’s not just that, I can’t seem to make my eyes focus on one spot for more than a second before my vision drifts again. I feel horribly sick, and I am dimly aware of a nurse holding a bucket by my left shoulder. Someone is talking to me. It could be a man or a woman, I have no idea. I can’t seem to make any words come out, I can’t seem to speak at all. They hold something to my face, a photo, and I turn away and retch. I think I hear them say “you have endometriosis” but I can’t be sure. I think I hear them say “I’ll talk to you later.” And then again, nothing.
I awake again, to a nurse holding a glass of water and some biscuits. I drink the water gratefully, my throat feels raw and tender. She brings me more water, and more. I need to rehydrate, she says. I need to drink as much as possible, and then I can go home. I eat the biscuits, but they taste like sawdust in my mouth, dry and claggy. I ask for a cup of tea, which she brings me. It has that horribly plastic taste that cheap tea does, but I drink it down. I pass out again. I wake up, I drink more. I pass out again, I wake up, drink more. At around 1pm, I ask if they’ve told my mum I’m awake. They haven’t, but I hear a nurse call her. Pass out again. Every now and then, I’m helped to the bathroom by the nurse. Once you’ve been to the loo, you can go home, she says. But I can’t seem to, everything feels numb, and as the hours pass I feel more and more frustrated. She tells me that I’ve had four litres of water. Four! She does an ultrasound on my belly, pressing painfully into my new cuts, and tells me I haven’t drunk enough. I want to cry. Twenty minutes later, and miracle of miracles, I come back from the bathroom and smile at her.
You can go home now, she says. But I haven’t seen the doctor, I say. Yes you have, she says. You spoke to him earlier. I stare at her. When I was dizzy and retching and couldn’t speak. That was the only contact I was to have with the man who had cut my belly open, the only man who could tell me exactly what had been causing the last two years of pain? I would like to say that I was assertive, and strong, and told her exactly what I wanted. I didn’t do that. I cried. I cried, and I couldn’t stop crying. I was vulnerable, and scared, and still dressed only in a thin paper gown, and this woman was telling me I could talk to the doctor in three months. Three months.
While all of this had been going on, my mother had sat faithfully in the waiting room. They had called her, as I had heard, at 1pm to tell her I was awake and would be coming out in an hour. I had been in and out of consciousness ever since. I had assumed they would have kept her up to date. She was less than a fifty metres from my room. They had her phone number. They didn’t call her again. By this point, it was nearing 5pm. She had sat, in that room, for four more hours. My boyfriend had been calling her for news, as had my dad. She had nothing to tell them. Eventually, my dad told her to walk into the ward and find me. When she did I was sat there with the nurse, crying and trying to tell her that I didn’t even remember the doctor. I couldn’t even fully remember if I had endometriosis or not.
My mum is a nurse. She took over, and calmly explained why I was upset. That I needed to speak to a doctor. The head nurse came over, quietly patronising. Ooh, I can see you’re upset. Not to worry. You can talk to the doctor in three months. I asked where they had found the lesions. This is crucial to knowing whether its endometriosis or something else that means that my partner and I can’t have sex. She said it wasn’t in my file. The doctor would tell me in three months. I’m an articulate and well educated woman. And this woman reduced me to frustrated tears as I tried to make her see how important it was that I knew. My mother asked for a copy of my file, and they handed it over. My file did say where the lesions are. I have them in various spots, but predominantly on my ovarian ligaments, which run behind the cervix and close to my womb. I googled it when I got home – lesions here almost always cause pain during sex. At last, after two years, I was closer to answers.
There were photos too, of the inside of my stomach. I found them fascinating. Perhaps that’s morbid. But there was something about seeing the curve of my fallopian tubes, the jumbled mass of tissue and fat and muscle that is so uniquely me, that I found strangely intimate. When the nurse wasn’t looking, I took a photo of the medial report, and the photos of my insides. The nurse tried to explain it to me, but it was obvious she didn’t know what the medical words meant. Luckily, I have a medical student for a boyfriend, and a small web of medical student friends. I will find out what it all means. Before we left, I got them to email the doctor who operated on me and ask him to call me in the morning. I would not be waiting three months.
He called this morning. I have endometriosis, but its mild. They burned the lesions, but they will probably come back. Hopefully my symptoms will improve, but they might not. It’s a mysterious condition, and not much is known.
1 in 10 women are estimated to suffer from endometriosis. In the UK, it takes an average of 8 years for a woman to be diagnosed. I have done it in two. But I have had so much privilege to get this diagnosis. I am eloquent and well spoken, I have done my research. Perhaps because I am dating a medical student, I don’t see doctors as infallible. I have been quite happy to argue with them, to tell them that they’re wrong, that something is wrong with me and that they need to listen. I have been backed up by a family history, of my grandma and my mum, and my 21 year old sister. I have known exactly what endometriosis is, and I have begged, and bullied, and cajoled doctors into getting me the tests I have needed to get to this point. Most women are turned away, afraid and alone, feeling more and more that there is nothing wrong with them after all. I, at least, have avoided that.
Now, I am sore. My belly hurts when I move. I have three neat little cuts that they tell me will scar, evidence of what I have gone through. My shoulders hurt, a remnant of the gas they pumped into me. My appetite is low, and I could barely sleep last night.
I am also angry. Endometriosis is a lifelong condition. There is no cure. And I was told I had this when I couldn’t speak, see or move, when I was at my most vulnerable. I was told that they didn’t know where the lesions were, when it was written plainly in my medical record. I was told that a doctor would talk to me in three months. They sent me away without any information about my condition. For some women, endometriosis is a debilitating illness, akin to a disability. I have been diagnosed young. I will live with this for the rest of my life. At the moment, I can’t have sex. It might get worse. I might be incapacitated during my period. I might become incapacitated at other points of the month. I might be infertile. Time will tell.