by Lilian Zimelak
CN: endometriosis, chronic pain, medication
I have lived with chronic pelvic pain for almost half my life, but it is only now that I am beginning to accept it as a part of me, and give it the respect it deserves. Coming from a liberal, privileged and largely secular background, I never thought that I was affected by the taboo around women’s bodies. It is with great upset that I now realise, aged 20, that for half my life my physical experience has been undermined, first by doctors and then by myself. I hadn’t realised until I started writing this down that actually I was one of those women whose pain was not taken seriously by a doctor.
I have lived in denial about my chronic pelvic pain for almost a decade. I struggled to talk about it because I had no hard evidence other than my own experiences, which were invalidated by doctors. I believed vocalising it would make it worse, or be admitting defeat, or that if I didn’t express it, it wasn’t real. Saying it out loud is still difficult, because I cannot be 100% certain that it is true. I feared that people would think I was lying and making it up for attention, and to be special. But pretending you are not in pain is exhausting, as is hiding a significant part of your life for 9 years. Now, I want to highlight how having your physical experience undermined can deeply impact your mental health.
“Even though it affects 1 in 10 women in the UK, and has such disabling symptoms, endometriosis is rarely discussed”
My symptoms point to endometriosis as the most likely cause, but I am not mentally ready for surgery, which is the only means of a certain diagnosis. For someone who loves understanding things, collecting information and analysis, endometriosis is cruelly disordered and intangible. Its cause is unknown. Even though it affects 1 in 10 women in the UK, and has such disabling symptoms, the disease is rarely discussed, and infuriatingly poorly researched.
In short, endometriosis is the presence of the tissue that usually lines the uterus (the endometrium) outside of that area, including in the fallopian tubes, ovaries, bladder and bowel. When your period starts and your endometrium sheds, the endometriosis also bleeds. This is extremely painful, as the lesions have nerves connected to the organ/muscle they are attached to, and this creates scar tissue which builds up each time you bleed. Endometriosis isn’t distinguishable from healthy tissue in an ultrasound or MRI, and there is no correlation between the intensity of the pain and the severity of the disease.
When I first went to the GP about my period pain, they told me that this was normal at the start, until things “settled down”. I was an 11-year-old still in junior school, who would be woken up by the stabbing pain in her abdomen, and cry out for her parents through streams of tears because the pain was so unbearable. Yet the GP gave me the impression that this was as acceptable as getting a stitch whilst running. My sincere pre-teen-self felt silly: this much pain must be my fault, and everyone else deals with it, so I just need to toughen up.
Opening up and asking for help, only to be ignored so consistently and for so long, has had a huge impact on my ability to be vulnerable. I could describe curling up in a ball on the floor moaning in agony, or being unable to eat because the pain made me nauseous every time I said drugs made no difference, I got the same response. First it was Ibuprofen, then Mefenamic Acid as soon as I was old enough, then with 8 paracetamol tablets a day, then taking it before I even started bleeding, then co-codamol because I couldn’t sleep. Receiving the same answer for 7 years made me feel like I was the issue, that it was my fault for not responding to the drugs. Even when I was 15, and concerned about the effect my period would have on sitting GCSE exams, I was still told that I would “grow out of it”.
“When I refused a higher dose of co-codamol, concerned about the side-effects, my GP said ‘Well, what do you want from me then?’ Now, I’d say: I just want to be believed”
In retrospect, I think the GPs prescribed something to make themselves feel better, rather than to actually help me. I felt like an inconvenience because I wasn’t there for an inhaler or antibiotics. When I refused a higher dose of co-codamol, concerned about the side-effects, my GP said “Well, what do you want from me then?”. Now, I’d say: I just want to be believed, because I cannot live with this pain. If the pain was occurring in any other part of my body, I would have gone to hospital. Somehow, it is unacceptable to be fainting from pain in your ankle, yet it was perfectly fine for me to have debilitating period pain. Instead, I was told countless times that it would probably go away when I got older and went on the pill.
What infuriates me is that painkillers are not the answer to chronic pain. The pain develops from an initial reaction and muscle inflammation to a neurological problem, nerves become more sensitive, and send more pain messages to smaller triggers. This makes painkillers, which target muscle inflammation, useless. Not to mention the serious side effects of codeine-based drugs, including drowsiness, constipation and a dependency with withdrawal symptoms similar to that of a Heroin addiction. What makes routinely prescribing an otherwise healthy and active young woman another 84 co-codamol tablets acceptable? Had I been prescribed Pregabalin, an anti-epilepsy drug, which has helped alleviate some of the everyday aches by dampening down pain signals, when I was younger, I could have been spared years of unnecessary pain
“The confidence I put in doctors as an 11-year-old was abused”
I think that because I was never taken seriously, I was trained to undermine myself. The confidence I put in doctors as an 11-year-old was abused. I believed that if there was something actually wrong with you, then doctors would intervene. From their inactivity, I concluded that there must be nothing wrong with me and that I must be making it up, and so I learnt to blame myself. I never felt validated, which is probably why I never told anyone about it, because if doctors didn’t believe me, then who would? Without doubt, this contributed to my intense feelings of isolation and desperation, which were a burden I could not share, so they were bottled up for years. In order to cope with the process, I must have subconsciously decided that I would do as the doctors, that is, denying its existence.
During sixth-form my pelvic pain became constant. Stabbing pains from walking into town, carrying bags and even sitting down, left me exhausted. When I was bleeding, the pain would come in waves. All I could do was sit, breathe, feeling as though my stomach was on fire and my vision went blurry as I would almost faint every couple of minutes. My insides would feel raw, tight and swollen. My poor mother, who has witnessed me in pain too often, said it looked like I was having contractions. But, of course, I wasn’t. I was on my period, not having twins.
“I was on my period, not having twins”
When my GP finally said that this sounded like endometriosis, I cried. All I knew about the disease was from a depressing Buzzfeed video that I found uncomfortably relatable. Then the endless waiting for appointments began. The results from blood tests, an ultrasound and an MRI, all came back normal. Every negative test result felt like a slap in the face, and a victory for that voice telling me that I was just attention seeking and needing to be special.
The investigation process itself has been traumatic, and I’ve still felt dismissed. I was told I am young to worry about fertility, despite having sat in a waiting room surrounded by pregnant women and babies, to see a gynaecologist about an issue concerning my reproductive organs. Feelings of frustration and guilt convinced me to cut food out of my diet that the internet told me was feeding the endometriosis. It was only when my jeans became baggy, my hands constantly shaky and my pulse racing that I realised this was unsustainable. I had to ignore the punishing voice that welcomed restriction, and told me I had brought this on myself by eating incorrectly, and if only I could starve the disease then all this would go away.
I’ve still never actually spoken to someone else with the disease face to face, but I want to send a message that speaking out about having endometriosis is not admitting defeat, it’s not your fault and you are not alone. I am in the process of owning it, in all its messiness, and refusing to let it make my life miserable anymore.
All images by Skye Baker