Finally

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.

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Three years

The first time I remember meeting you, what stuck with me wasn’t your soft brown eyes. It wasn’t your bright grin, or your strong arms, or your wide shoulders. What struck me was the ridiculous hat you were wearing. It was, not to be too blunt, utterly awful. I left you there in that house party, and I went out clubbing, and I brought someone home, and I didn’t spare you another thought. Months went past, and I didn’t think of you.

And yet, we kept on running in to each other. I was indifferent; you’ve told me since that you were captivated. I found out you lived on the other side of Oxford from me, and in my flippant excitement, insisted that we exchange numbers. It would be a long summer. It would be nice to have some extra company. And that set us on a path of museum visits, late night texts, rock climbing, breaking in to Oxford colleges, dinner with friends, and finally, that house party, where my friend laughingly, drunkenly, suggested that I kiss you and I, finally, did. It would be weeks before I gave in and started dating you (“we’re just friends” became a favourite refrain.) It would take months before I finally started to fall in love with you. It’s taken me three years to finally understand that you’re not going anywhere.

People often say that their partner is their better half. It’s a playful comment, an affectionate nickname. In my case, it’s true. You complement me in a way that I never thought possible. Where I am angry, you are calm. Where I judge, you are tolerant. Where I scowl, you laugh. We go to parties, and I will rant about what a cow that girl was we met, while you sip a cider and calmly say you thought she was quite nice. You are soft and sweet where I can be harsh and cold. You wear your heart on your sleeve, openly and bravely, and persevere with me when I close up and push you away and refuse to talk about my emotions. I am a better person for being with you. I am a better person for knowing you.

I like to think I’ve made you a better person too. You were quieter when we met, less sure of yourself. Some of that isn’t down to me. It’s down to you growing as a person, down to your friends and your learning and your travelling. You were an awkward boy when we met, and now I see a confident man. We were at a party a few months ago. I was talking to a friend of a friend of a friend, someone who mercifully had a job like me and wasn’t another student at a party flooded with medics. I turned to get another drink, and you were there, dancing in the middle of the kitchen with a guy I vaguely recognised as being at your new university. You looked so happy, a smile splitting your face, and I felt a rush of pride and happiness that you were – are – mine.

The last three years are peppered with those happy little moments. They’re not big moments. I once read a post from one of my favourite bloggers, in which she says that love isn’t the big things, its counting pennies. I think we’ve done a lot of counting pennies together. A lot of nights sitting in the library. A lot of evenings cooking dinner with each other. You nagging me to tidy my room, and me throwing a wet towel at your face in response. Texting each other every day, keeping up with the minutiae of what you’re learning in medical school, while I bore you with that I’ve done in the office that day. We can spend hours together, not saying a word, engrossed in our own little worlds, until someone gets up to put the kettle on and drops a passing kiss on the other’s shoulder as they walk by.

You are, more than anything, my partner. You’ve put up with a lot from me. My broken wrist: you came to my room several times a day to help me dress, cook, wash up, and once, memorably, to shave my legs. My depression: you were my rock, there to stroke my hair and kiss the tears away and make me eat when I forgot. I hope that when you broke your collarbone I was half as supportive to you as you’ve been to me.

I am so proud to be your girlfriend. You are one of the funniest men I’ve ever met. You always manage to put a smile on my face. You even make me laugh when I’m crying sometimes, and then you laugh yourself and tell me I’m making my wibble face (whatever that means.) You are gorgeous, all long lines and lean muscles (and I’ll stop there because this is a public blog.) You are smart, and I sit in quiet awe as you revise for your exams with your flatmates, talking through drug names and physical examinations and viruses. You are kind. I love the life we have together, how you slot so effortlessly in to my life in Kingston. I love visiting you in Islington, the warm domesticity of cooking dinner for your flatmates. At first, I thought it was the house there that felt like home. It wasn’t. It was you.

So, my darling, there you have it. I am sorry that I never quite find the words to tell you how much I love you. I am sorry that I am blunt and sarcastic, that I hide how I feel and push you away when it gets hard. You inspire me to be different, to open my heart and say what you know, what I’ve told you, but don’t hear enough: I love you.

Failure

CN: sex, pain, mention of medical conditions

I’m curled on my side, my body hunched and small in the foetal position. I can feel him behind me, hovering an inch away from my back, but he knows better than to touch me. Every inch of me feels wrong, my skin feels too tight, and there’s a sick feeling in the pit of my stomach. I’m such an idiot. I thought this time would be different.

It never is.

I wrote a month ago about the pain I’ve been getting in my abdomen. That’s hard enough to talk about – how do you drop “oh yes, I missed work on Monday because I was in A&E with agonising stomach cramps that so far remain unexplained” into polite conversation? I’ve had some scans now; they’ve found nothing, which means that I’m clear of something like ovarian cysts, and I’ve taken a strong course of antibiotics, so if it was anything like PID, that would have been cleared up. The stomach pains are becoming more infrequent, and my period passed this month without pain out of the ordinary. The pains in my stomach are going, but I know that I’m not better. Not by a long shot.

The first time it happened, we were in my room at Cambridge. It was second year; my door didn’t have a lock; and my roommate could have come in at any moment. Classic student sex, rushed in between studying and essays and being caught. I remember the pain building and building, not wanting to say anything, and then crying uncontrollably after he was done, while my partner held me close and apologised over and over again.

We thought it was a fluke, a one off, a dodgy position. We wrote it off, and for a while, everything went back to normal. And then it happened again. And again. And again. Infrequent enough that I barely paid it any attention, thinking that maybe we were just rushing and needed to slow down. It got slowly worse. There would be nights when having sex would leave me in agony for hours afterwards, sitting in a hot bath to relieve the pain and brushing away my partner’s apologies. It stopped being “something that happens every now and again.” It started to happen more often. Soon, it was nearly every time we had sex. Then, it was unusual when it didn’t hurt. Now, I can’t remember when it last didn’t hurt.

As a culture, we’re obsessed with sex. We listen to songs with racy lyrics, we watch music videos with scantily clad women, porn is more watched than ever, TV shows like Love Island put sex in our living room, every night of the week. We love to talk about it, who did what with whom. Games of truth or dare and never have I ever, giggling as you reveal that one night stand you had in college. When we’re having it, it’s great. Sex is exciting, fun, something to laugh over with your friends in the pub while you hold your partner’s hand under the table and give them that look that means later.

On a more personal level, I love sex. I’m usually the loudest in the pub, making my friends blush and shush me. I spent my first year at Cambridge bringing home as many men as I could. I’ve reviewed sex toys for online blogs, and written erotica, and defended watching pornography at the Cambridge Union, and written academic essays promoting female masturbation. I love talking about sex.

It’s just so much harder to talk about when it’s going wrong.

So I put off saying anything to anyone. I hid it from my closest friends. I hid it from my partner. I would tuck my face into his neck, grit my teeth, and then smile at him afterwards, huddling in to his chest and trying to ignore the ache between my legs. I avoided going to see a doctor for so long. When I went, a middle aged woman with a quiet smile examined me, ran tests, told me that there was nothing wrong with me. She was kind, but I felt like a failure.

In Kingston, I met with my new GP. I ran through my prescriptions, that I would need to be set up with my contraceptive and my anti-depressants (thankfully, I’m no longer taking the latter) and then, at the end, I mustered all of my courage, and said in a small voice “when I have sex, it hurts. Like, it really hurts. It’s been happening for over a year.” And that GP smiled at me, and told me that it didn’t matter. I left, humiliated.

Six months later, the stomach pains bought it all back in to focus. Sitting in A&E, the doctor asked me if I had any other symptoms of endometriosis. I hesitated, and then I told her. Now, I’m being investigated at Kingston hospital for any physical issues that might be causing this, and going to see a specialist at St Mary’s in Paddington to see if its an emotional issue.

It’s hell, that’s what it is. I know that I should brush it aside. It doesn’t make me less attractive or less of a woman. Sex involves more than penetrative sex. My partner loves me, and he would never leave me over this.

But I do feel less attractive. I feel less comfortable in my own skin. Sex is more than penetrative, but I would like that to at least be an option. And as much as he loves me, why wouldn’t he walk away? There are plenty of women out there without this problem. He’s a great guy; he’d find someone else.

Every time it happens, I die a little more inside. We talk about it, agree that we just won’t do that, we’ll do everything else. And we do, and its great, and then I go and fucking ruin it by suggesting that we try it. Just once more. I’m ready. It will be fine. And then searing pain rips through me, and I find myself curled up crying, again. I’m such an idiot.

This is the hardest thing I’ve ever written, because I feel like a failure.

I sent the first draft of this to my partner to read. “You’re not a failure, and I’m not going to leave you, and I love you.” He’s right, of course. We’re a team. We’ll deal with this like we deal with everything. Together. Next tests are in September, so we’ll know more then.

It might not be. It might.

I stand in front of the mirror, my hands pressed lightly to my stomach. My hands are cold; the skin of my stomach is warm to the touch. I run my fingers lightly over the curve and swell, over the light hairs and the freckles and the indent of my belly button. My hands trail lower, to the sharp bone of my hip and there, just there. I inhale sharply as I press down. That shouldn’t be there. That shouldn’t hurt. And for the first time, I’m afraid.

Multiple trips to a&e. Doctors running their hands down my sides. Nurses with sympathetic eyes. Long waits in sterile rooms, my boyfriend clutching at my hand. They don’t know what it is. They said I need a scan. They say it could be nothing. Or it could be everything. I watch their eyes widen as I tell them it runs in the family. It might not be that. But it might be.

If it is, my insides will attack themselves. Tissue will grow where it should not. Every month, that tissue will shed with the lining of my womb. I will lie in agony as my body tears itself apart. It scars, every month. Those scars build up. Left to its own devices, my body will become a prison of pain and scars and infertility.

Do you know what I’m talking about? It affects around 1.5 million women and girls in the UK. 10% of women worldwide are estimated to have it, but the figures are likely to be much higher.

My mum has it. My sister has it. It runs in families.

I look down at my stomach again, stroke the skin. I close my eyes, and I hope. My body is my rock. It’s mine, my solace, my fortitude. It is not the most beautiful, not flawless or perfect. It is perfectly imperfect. It is scarred and ridged and mine. And it has been my fortress, my hide away from the world. Even in my darkest moments, the nights I have looked in to the mirror and seen nothing but fat and ugly, it has always been strong. And now it turns out that that strength might be an illusion.

I’ve never wanted children. It’s true that I don’t especially like children, but that’s not the reason why. When I imagine my life, when I fantasise about who I might be and where I might go, it is wild and varied. My career spans across reckless possibilities. My mind fills with the food I would like to taste, the baking I want to achieve. I picture the man I want to be holding my hand. Sometimes, there’s no man at all. I picture mundane things like the kitchen units in my dream home, friends growing older and getting married, my little sister having her first child. I imagine the places I want to visit, where the climates are hot and animals I have only seen in zoos roam freely. Never. Never in any of those dreams, have I ever seen children, my children, held in my arms. Not once. I don’t picture it. I don’t dream of it.

Infertility doesn’t scare me. What scares me is the thought of a body that is beyond my control, that hurts indiscriminately and cannot be cured, only slowed.

I’ve got a scan in two weeks. I hold the hospital letter in my fist, let my other hand drop again to my belly. It might be. It might not be. We’ll have to wait and see.