Life in Pain – Endometriosis?

Ten months ago I was a 19-year-old student with no serious experience of physical health problems and no concept of what it means to live your life in pain. Ten months ago that changed. I woke up one morning with excruciating lower abdominal pain and the unwelcome arrival of bleeding ‘down there’, this being after two years of no periods due to my mini-pill. That was two years of pure bliss that I never truly appreciated. That fateful day in March saw the start of a – and I know this is cliché but – ‘journey’ through pain, both physical and psychological. It started with doctors appointments, which very quickly turned into hospital appointments, which turned into hospital admissions. The first two months of unbearable agony – almost on a daily basis – saw me meeting with medical professionals who would question my pain; it’s probably just a bad period, it might be in your head, after all you are stressed due to exams and there is no reason for you to be in pain. Cue months of mental torture where I believed I might be going insane – if professionals tell you there is nothing wrong with you, it doesn’t matter how much your gut disagrees, it catches up on you eventually. I was misdiagnosed with Pelvic Inflammatory Disease twice, then told it was random abdominal pain. This chain of events left me feeling broken. Having been rushed into A&E on multiple occasions in agony and then being told there’s nothing wrong with you deflates a person. Not only was the physical pain a massive drain on me but this mental game that was being played only further depleted my – already low – energy stores.

Come April it was finally Easter holidays and the prospect of going home came as a relief as the medical care where I had been was such a nightmare. With my pain and bleeding returning, my parents – in a desperate last-ditch attempt – decided to pay for a private gynae consultation. The consultant was amazing, a breath of fresh air in that he took what I said seriously. He did not dismiss me and after doing a scan assured me that he knew the cause of my pain – I had a bleed in my pelvic cavity. Given my extreme cyclic pain he agreed to do an urgent laparoscopy on the NHS. This, although daunting, I was so grateful for, I am all too aware of the troubles so many women face when dealing with health professionals concerning menstrual-related pain.  With the surgery complete, he drained the blood from my cavity but reported that he couldn’t find any endometriosis – something which had been thrown about prior to my meeting him. The bleeding was not fully explained but the suggestion was that after I recovered that would be me set for life. The pain, along with the bleeding was not to return. If only we knew.

One month post-surgery and I was back at university, cramming like a crazy person for my exams as I had missed an entire semester due to this issue and, low and behold, guess who returns. My pain. At first I thought it was a phantom, something my imagination had conjured up due to stress. But within minutes of the pain starting, the bleeding followed and once again I found myself squirming on the floor wishing to be unconscious. Another ultrasound scan revealed that, once again, I had bleeding in my pelvic cavity. This time the consultant did not want to operate and instead we decided to monitor my progress with scans and pain management. This meant two more months of agony, not only was it taking a toll on me, but also on my loved ones who witnessed day in and day out the tears, screaming, A&E visits and exhaustion. It’s very hard to explain what it means to live with chronic pain to those who have not experienced it in some way. Imagine getting four hours sleep every night (that’s how exhausted you feel) whilst having a bladed machine whizzing through your stomach – sounds extreme but it’s the reality for many of us. And those are just some of the symptoms. Now, there are better periods (pun intended) and there are worse ones. We do not always look unwell – as so many people seem to point out. Nor are we always miserable. We simply learn to live with it, there is no other choice. When the going gets tough – no matter how much you are convinced you cannot deal with it – you just do. One thing I have learnt living with pain is that our bodies and minds are so incredibly resilient. I have had countless moments where I questioned how it’s physically possible for a human to survive such suffering, countless moments where I thought my body would implode, but it doesn’t. And no matter how hard things get, we keep going. Whether keep going means spending a week in hospital, whether it means going on holiday, throwing up into a toilet, going out with your mates, crying into your pillow. We are still going, still living, still doing what we have to do to get through it all.

In August I had the coil fitted – this was in an attempt to stop my periods as at the time it was believed that my pain was due to retrograde menstruation. Initially, this seemed to help, although I still had the odd day of bad pain and I spotted for two months straight, the number of days I spent on the floor in tears had reduced. I’d love for my story to end there, but this is not a fairy tale and that’s not the happy ending. Towards the end of November I was sat watching telly when an all too familiar feeling crept up on me – contraction-like cramps came out of nowhere. The pain blind-sighted me and ensured I was rolled into a ball on the floor. These pains continued for the next few days and meant my parents had to pick me up from university to take me into hospital at home. Here I was given morphine – as I have been many times before – and admitted into the gynaecology ward for pain management and further tests. I don’t know how many of you have been admitted into hospital before, but for those of you who have you will know what a lonely place it can be. The nurses were absolutely incredible – so friendly and helpful, but hospital beds just aren’t the same as your own, and hospital food – well I’m sure you can guess what that tastes like, think school dinners but worse. My point is, when your loved ones leave and you are on your own with cannulas sticking out and tests being run in a foreign place, you don’t feel too great. Having said that, this hospital visit was a pivotal point for me. Prior to this attack, I had regular appointments with my consultant who had found no reason for me to be getting random days of pain and spotting. He then referred me to a general surgeon who had reassured me my body was still recovering from the upset of the bleeds, cysts and the surgery. So having been told that my symptoms should cease and then finding myself back in hospital made me feel like I was going crazy. I kept telling my family how I believed I was having psychosomatic symptoms – when your brain is so convinced that you are unwell that it triggers physical reactions mirroring your beliefs – something which everyone was quick to assure me was not correct (I think I have a handful of professionals to thank for that false belief). After I had a scan I saw a gynaecologist who actually took the time to sit with me and discuss not only what they found and what she believed but also my experiences and fears. She explained that she was confident the pain was due to more fluid they found in my cavity but that this was not due to retrograde menstruation, rather a combination of a ruptured cyst and what she believed to be endometriosis. She was the second gynaecologist in two days to raise this possibility. I was quick to say that the laparoscopy had not seemingly revealed any endometriosis. But she made it clear that my symptoms – the cyclic nature of the cramping pain, the sharp shooting pains into my bottom and legs, pain associated with sex and bleeding – were all very consistent with endometriosis. Her response to the surgery was that I am young and it’s possible that they did not look deep enough to see it or indeed that it was simply not visible at the time. And with this, I felt so relieved. You may find it peculiar that being diagnosed with suspected endometriosis could bring anyone joy, but let me tell you: having an unknown condition is much, much worse. I have now been referred to a specialist endometriosis clinic. I am still in the midst of another flare-up and my pain changes day-to-day, as it does with most women. Coming to terms with chronic pain is not something I expected to do at my age, or indeed ever, but here I am and although I wish every single day that I did not have to deal with my symptoms, I am so grateful for the lessons they have taught me.

I am much more empathetic to others with health conditions – you really have no idea of what someone might be going through – not all disabilities are visible. I have learnt to treasure every moment I get where I am feeling okay. I have learnt to seize opportunities whilst they are there because you never know what tomorrow will bring. But most importantly, I have learnt just how strong I am, just how strong we all are. I salute all women who have been through similar stories, please know you are not just a whiny woman, you are a person with the right to speak up and be heard. Listen to your body, it knows more than they do, and if you feel something is not right, do not let yourself be dismissed. On average it takes 7.5 years to be diagnosed with endometriosis; my story was only ten months and that felt like an eternity. It can disrupt our education, work, relationships, mental health and quality of life, and our voices must be heard. We demand change.

 

Fate

Do you recognise this pain,

When you look into the eyes of your grandmother,

Do you see the horrors her heart felt,

Do you see yourself,

Battered,

Alone,

Do you recognise this pain,

When you look into the eyes of your mother,

Is it a reflection of the men you tried to save,

The men who took your love but always gave it away,

Will your daughter see the pain,

When she gazes up at your face,

Will she recognise that a heart has only 9 lives,

Will she prepare for this same sad fate.