‘You can’t understand how much my tummy hurts right now.’
‘I have the worst period pains in the world right now’.
For as long as I can remember having periods, which is since I was about 11, I can also remember curling up into a ball, rocking and holding my knees to my tummy, I can remember moaning and whimpering and sometimes crying, and all the while I can remember feeling like such a weak little girl, unable to cope with simple period cramps, which have plagued women since the dawn of time.
I recall being called a drama queen by school mates when I had to sit out morning mass at Notre Dame Cathedral on choir tour, never thinking that if the pain had got so bad I would miss an opportunity like that then perhaps it wasn’t simple period cramps after all. I can recall falling sick in between every period and being accused of faking illness because I never had a temperature, never considering that the sickness in my tummy was related to my cycle in some way. I even recall being sent away from the doctor for years when I complained of collapsing during my period, bleeding every two weeks and being in debilitating pain, being told that it was quite normal for young girls to experience ‘teething problems’ when they first hit puberty.
Still singing – with the Military Wives choir, my rocks.
All of these things happened between the ages of 11 and 17. Only when I was 17 and had coped for six years with the hell of chronic pain did I finally see a doctor who listened to me. I had more smear tests in a month than the average 60 year old has had throughout their lives, I was poked and prodded by so many male doctors I can honestly say my dignity was not even hanging by a shred in the end, and at last I was sent off for an operation to find out exactly what had caused me so much pain for so many years.
To cut a very long story of nine operations very short, I was diagnosed with endometriosis, a relatively common chronic pain condition which affects 1-10 women and takes on average seven years to diagnose. In many stories, a diagnosis marks the end of the tale. Treatment is given, improvement is seen and the patient goes on their way feeling much better. But I have a chronic pain condition. The clue is in the word chronic. There is no cure, the treatment is pain relief and a whole lot of hormones, and since the illness relates to periods and reproductive systems, practically nobody wants to hear about it or talk about it.
I do. I want to talk about chronic pain, and how it feels to become so accustomed to being in pain that people sometimes have to tell you that something hurts when they can see it in your face.
Some endometriosis related biology for y’all.
A year ago I fell and seriously injured myself, and I honestly didn’t know at the time if it was a minor sprain in my knee or something much worse. I was very calm and I refused pain relief. It was my own mum who had to tell me that my face was completely grey and she had no doubt that I was seriously injured. As it happened, I had completely ruptured two ligaments in my knee.
Still, a few months later in hospital I was accused of having a low pain threshold and being a bit whiny when I had more major operations related to endometriosis. In hospital they ask you to rate your pain on a scale of 1-10, one being normal and ten being the worst pain you’ve ever felt. One for most people is completely pain free. When you live with chronic pain, however, one is the regular level of pain which you can handle (are accustomed to handling) without any pain relief. I told them my pain was a four, so they discharged me. And yet two days later I was readmitted due to complications. My husband still tells me now that in the future I have to give them a higher number despite being quite accustomed to that level of pain.
Post operation and watching a c section in Texas – my illness prevents me from being able to deliver naturally.
Women will tell you that periods hurt, and they are not lying. Those women get period cramps for a few days each month, and they can often time when they are going to come. For sufferers of endometriosis, cramps come during a period, before it, after it, halfway through the cycle at ovulation time, and at any other point that might be inconvenient. The pain isn’t just a little cramp which requires some painkillers and a hot water bottle, it is the sort of cramp which makes you throw up, a pain which can stop you standing upright.
Opiates just about scratch the surface of the pain, and yet people think that perhaps we have a low pain threshold. After all, anybody who can’t get out of bed just because of period pains must just need to ‘man up’ a little bit. Anybody who suffers period pains throughout the entire month is probably exaggerating what are most likely little twinges. I would not wish chronic pain on anybody in the world. Feeling physically healthy but being unable to move for pain is one of the most disheartening, frustrating experiences I know and one of the few things worse than the pain and frustration and emotional struggle that a chronic pain condition carries is the chronic misunderstanding of anybody who is not a sufferer.
We are not weak. We do not have a pathetically low pain threshold. We do not just get a jolly from moaning about our situation. We are fighters who sometimes lose the will and the energy to fight anymore. We are warriors in need of substituting, but knowing that nobody, no matter how much they may want to, could ever bear this burden for us. We’re not after sympathy and we are not self-pitying. All we are asking is that people might strive to understand the stress we go through whenever pain strikes. We are so bored of being told to keep going, that we just have to make more of an effort to get through it, that it will all get better (again, chronic is the key word here. It isn’t getting better), or that you know how we feel.
My supportive husband.
In the beginning people often say they will be supportive, that it must be terrible to suffer chronic pain and that they will help you however they are able to, but then they tend to quite quickly get very bored of the sick days, the pale face of death on bad days, and the side effects of all the pill popping.
I have one request: if you know somebody who suffers from a chronic pain condition, make it your mission not to tire of their pain. That option is not open to them, and all they need is somebody who wants to understand not just to begin with, but with unfaltering effort for the duration of their condition.
Erin Hughes Exelby
Erin is a singing student currently studying at The Royal Northern College of Music. She aspires to be an opera singer when she graduates. Erin is a shameless Gleek and loves the minions from Despicable Me so much she had one on her wedding cake.
To find out more about endometriosis visit: www.endometriosis-uk.org.
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