Hannah’s Endometriosis story
“Again, I am choosing between my mental state and my physical state. My physical state will always be the loser. ”
‘Do you think it could be an STI?’ I ask the doctor shakily.
‘No, it’s more likely to be cervical cancer,’ he says without looking up.
It is 2015 and I am twenty-three. I remember twenty-three well. I remember knowing not a thing about life. I remember being clueless about the world. I remember nothing much mattered and feeling carefree with the man I was seeing.
Until one morning when I wake up next to him to find a pool of blood in my knickers and a deep ache in my tummy. I have been experiencing pain during and after sex for years. Excruciating cramps after intercourse that would have me writhing around or curled in a ball for hours after. I recently read in a women’s magazine that sex should not hurt and if it does you should speak to a doctor immediately. Thank goodness for glossy women’s magazines. They are mocked for being trashy but if it wasn’t for them I have a feeling many women would have had no information regarding their sexual health during their teens. For me, sex has always been painful so last night was no different to usual, but the magazine and the blood freak me out enough to make a doctor’s appointment.
The doctor who is in his late fifties, wears a pair of glasses, and appears completely disinterested in me or my problem.
‘It will be one or the other. I’ll send you for an STI screening.’ And that is that. No more questions, no information on what will happen next. He sends me on my way having just told me I might have cancer.
Next thing I know I’m being stretched open with a speculum that looks as though it wants to swallow my cervix, and swabbed with something that feels sharp and uncomfortable. I receive a phone call a couple of days later from a friendly nurse.
‘You’re all clear, Miss Cross.’
‘I don’t have an STI?’
‘No, great news.’
I hang up and burst into tears before running downstairs.
‘I don’t have an STI,’ I wail to my father, the only member of the family who is home, and he looks at me like I’m having a breakdown. ‘The doctor said if I didn’t have an STI it would be cancer.’
‘What? You don’t want to have an STI though, do you?’
‘Better than cancer,’ I shout at my dad, who is profoundly ill-equipped to deal with this situation.
He calls my auntie, a nurse, and more to the point, a woman.
‘Oh, I am sooooo angry at this stupid doctor,’ my auntie growls. ‘There are hundreds of things your symptoms could mean besides those two outcomes. Just a silly old man who doesn’t understand women’s health.’
A possible endometriosis diagnosis
I am referred for a hospital appointment and it turns out I have neither an STI nor cancer. Two doctors, both men, look at a screen during thea hospital appointment. I have been referred for. ‘You may have something called endometriosis. The only way to confirm that is to refer you for some keyhole surgery.’
I have never heard of endometriosis or keyhole surgery. Being put to sleep and operated on sounds scary and no-one explains anything to me. Neither of the men think to tell me what endometriosis is, what the symptoms can be, or that endometriosis can cause infertility. And I have the distinct feeling that it would be dramatic of me to have surgery to find out what’s causing a silly little problem like pain during sex.
‘If I don’t need an operation then maybe I shouldn’t have one.’ The doctors nod and I nod, and I leave and go about my life.
Finally getting an operation
I move up North and a year later I have booked an appointment at my local doctor’s surgery complaining of agonising pain after sex with my boyfriend. I undergo more STI tests, various ultrasounds and scans, and general prodding by a football team of doctors and nurses. Once they have ruled out STIs and cancer for a second time, among a slurry of other diseases, I am told again that it could be endometriosis.
This time, when the doctor says, ‘we can only diagnose it with keyhole surgery.’
I say, ‘yes please.’
Three years after my initial doctor’s appointment I am finally given an operation.
‘You have endometriosis,’ the surgeon tells me when she does her rounds of the patients she’s operated on. ‘We burned out what we could. You’ll need to take Ibuprofen and Paracetamol for the next few weeks and stay in bed.’
I am still given no real information regarding a condition I have just had surgery for and by this point I have only been given one description of what endometriosis is; it’s when cells similar to those growing in your womb grow outside your womb.
But for now, I am just excited to finally experience what sex that isn’t painful feels like. Once I heal my boyfriend and I try sex and I am disappointed to discover it is still painful.
I assume everything will now be mostly okay and don’t speak to a doctor. I feel like I’ve made enough fuss already and don’t want to waste anyone’s time. About a year later I start experiencing excruciating pain during my day-to-day life, almost passing out at work one day from the agony.
‘Ibuprofen and Paracetamol,’ another doctor tells me.
‘But I don’t want to just manage the pain, I want to know what’s going on and solve it.’
‘Unfortunately, there is no cure,’ she says. ‘Another option is we put you on a contraceptive pill that stops your periods.’
Trying the contraceptive pill
I leave with a prescription for something I can’t name, feeling like a Pez dispenser with all the painkillers rattling around inside of me.
I start taking the contraceptive pill hoping it will make a difference. It does, but the change to my body is greatly outshone by the battering my mental state takes due to the hormones in the pill. No-one tells you about the powerful hormones in these contraceptive pills and the possible side effects, and I personally believe it to be wildly irresponsible for doctors to prescribe these without explanation. My body is extremely sensitive to medications due to an autistic spectrum condition and during the short time I am on that pill I can only describe myself as having a psychotic episode. I am frightened by the surge of emotions screaming through my body. I feel out of control, exhausted, teary, and frothing with rage. The medication gives me such a fright that I stop taking it a week later.
‘I’d rather be in pain,’ I tell my boyfriend.
And that’s what the next year of my life becomes. Physical pain over emotional pain.
But the physical pain becomes too much and I return to the doctor. Despite having been already diagnosed with endometriosis they have to rule everything out again, including STIs and other infections. I return for my ultrasounds and examinations where I have a hoard of professionals poking around at my cervix. Endometriosis quickly kills any shyness I ever had for my three-yearly smear tests.
‘There are many options for sufferers of this condition if and when the operations stop working,’ a different doctor tells me. I never see the same person during my appointments. ‘Hysterectomy is the final option but before that we could try early menopause. It can be reversed, but going through menopause for six months can, in some cases, be enough to stop symptoms of endometriosis.’
‘Can I speak to a specialist?’ I finally request during this appointment which has left me as confused as ever.
‘There is a specialist at the teaching hospital who I could request a consultation with.’
I am baffled by this. It has taken four years, various medications, what feels like thousands of examinations, talk of a hysterectomy, and an operation for me to be referred to a specialist. And even then, it only happens because I ask.
‘You cannot go through early menopause,’ my mum objects. ‘You are already unstable, you would not cope with that.’
Again, I am choosing between my mental state and my physical state. My physical state will always be the loser.
Speaking to a specialist
Months later I am given a second operation and only after that do I get a chance to speak with the endometriosis specialist. Over the phone. The long-awaited conversation sheds no more light on a condition I have spent years struggling to understand.
It has now been three years since my last operation. I have noticed a change in my symptoms and thankfully have not needed to see a doctor since. I have a little more understanding of the condition but only through social media and my own research. I feel lucky not to suffer with endometriosis as intensely as others. And I am also lucky in the fact that I now know I don’t want children. But in my early twenties I thought I might, and hearing that my fertility might have been affected was a scary prospect. Especially when no one seemed interested in giving me any answers.
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