Living with endometriosis: part one

CN: medical stuff, endometriosis, mention of abuse, mention of surgery

I’ve always found writing very cathartic. I first put pen to paper to write for myself (and it really was pen to paper in those days, I carried a small notebook everywhere I went) when I was 11. I wrote a series of diaries in my teenage years. They are a study of teenage angst, longing for boys who never gave me the time of day, and some truly appalling poetry. As I got older, my hand turned to fiction. I wrote endlessly, hundreds of thousands of words, burying myself in imaginary worlds with dragons and demons, strip clubs and sex, romance and relationships. Some of my work is pretty good; some of it is abysmal. I have it all saved though, and backed up. It’s a reminder of 14 year old Sarah, bullied and scared and depressed, and still finding the strength to go home and be strong and brave and bake and write and laugh and be myself. It reminds me of who I am.

Since my diagnosis with endometriosis in November, I’ve found it hard to cope emotionally. I sat down the other day to write about it, from the very beginning, and I failed miserably. My story has a plot, it has a trajectory. It has tragedy, and humour, and it’s so very real. I think that’s the problem. How do I know what my story is, when I’m still holding out for a happy ending? When there’s no happy ending in sight? It’s too real, it’s too raw. I’m too emotionally invested in the now, the right now, to take myself back to that cold GP office where a kind doctor told me nothing was wrong with me. Was that even the beginning? I could go further back, to the first time my partner and I had sex and it hurt. I could go further back, to my first period, aged 13, blissfully unaware of what it would one day mean. I could go even further, watching a female family member shudder in terror at the thought of what might one day afflict her and thinking – with all the tact of an eight year old – at least that’s not me.

This particular blog series isn’t going to be following my plot, my trajectory, my chronology. It’s going to be what it feels like to live with this condition, thematically, as and when I feel like it’s too much for my body and my mind and myself. As and when I feel the need, as I did all those years ago, to spill my thoughts onto paper and finally, blissfully, force them out of my head.

It’s the most painfully isolating condition you can imagine. Outside of my immediate family, I don’t know anyone who suffers with this. There are happy endings, in my family: the very fact myself and my sister exist is proof of that. There is also pain, infertility, years of “I guess it’s not going to happen for us”, mental health problems and early menopause and even disability, waking in the middle of the night to hear screaming from the next room and knowing that there’s nothing you can do. It’s so isolating because there is such stigma around women’s bodies still. Especially women’s bodies that aren’t lithe, sexy, fuckable. Bodies that are sore, and tired, and swollen, and bleeding.

People find women’s bodies like that awkward, and uncomfortable, and gross. People don’t know what to do with women’s bodies like that. Even friends of mine who have filthy senses of humour look distinctly uncomfortable when I crack a joke about my defective vagina, their eyes sliding to the side, not meeting mine, polite laughter stuttering in the air. It’s distasteful, I should keep it to myself. And so I do, and I can feel myself imploding daily with the effort and sitting there and being in pain and bleeding, and I can’t say a word because nice girls don’t talk about things like that.

I can honestly say I have never felt more alone. One in ten women are estimated to suffer with this, so I know I’m not. It’s just me though, that I know of. Just me. There’s an online support group that I’ve joined. It’s not the same, of course. But it’s close enough. It uplifts me sometimes, seeing these brave and strong women, battling on and pushing for treatment year after agonising year. It enrages me, the way that the medical profession treats us, not believed, turned away, “it’s only period pain.” It scares me sometimes, tales of being unable to work, being unable to leave the house, a slave to the pain that has no cure. Sometimes, it makes me sad, women who are afraid and alone, women being abused by their partners for not having sex, women having hysterectomies in their 20s, women who see no future. It comforts me, which I suppose is why I keep going back. I am not alone, these women are going through the same thing, we’re all together.

It’s a weird one to talk about. People don’t know how to react. Some people ignore it, or ask if I can cure it, or laugh (and I get it, I do, but worrying about being offered a seat on the tube because I have endo belly and look several months pregnant is not a joke to me.) Some people are great. I had lunch with a friend today, and she laughed at the funny bits and didn’t make me feel strange for wanting to talk about it. I need more of that in my life right now.

I’m going to be first support group tomorrow night in central London, which I’m actually rather excited about. I want to meet some of these other amazing women in person. And hopefully I’ll feel less alone.

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