women

My Endometriosis Story Part 3 – Acceptance of Incurability & Endometriosis Awareness Month

Endometriosis

Reading my most recent post on this site leaves me with a lump in my throat – I was 8 months post-op after my second horrific operation to remove widespread, aggressive stage 4 endometriosis and things were finally starting to look up for me. Long story short, the second operation gave me a whole new lease on life for an entire year, which I’d say was a pretty good run.

I’ve always been hyperaware of the fact that endometriosis has no cure at present, especially when talking to others about this disease. It’s the cloud that’s been hanging over my head since my diagnosis three years ago, and I’d made peace with it eventually because even though it was incurable, at least it wasn’t terminal. And realistically, after a few operations, I figured I’d be rid of the worst of the pain, surely. I reckon that was a definite 50/50 denial and naivety, not helped by the lack of understanding and information out there about this disease.

I’m now 6 weeks shy of being 2 years post-op. I want so badly to say that my life has changed for the better and I’m a brand new, shiny person. I want even more so to say that pain is nothing but a mere memory of the struggles I’d faced. Neither of those are true, and it really fucking sucks. I can wholeheartedly admit that I took last year for granted; it was one of the best years of my life because I managed to live it to the full without being controlled by severe pain. It was a whole year of being pain-free. I was able to keep working without any big hitches, I went on my first solo holiday abroad, I had the best summer of my life too. Even though it didn’t last as long as I wanted it to, I’m bloody proud of what I achieved last year and the sheer fact that I thrived in any case. I achieved a win with last year, and I’m holding onto it.

Towards the end of the year, I found myself back in A&E again after experiencing pelvic pain so severe, I couldn’t cope with it at home on the opioids I’m given to manage pain flare-ups. A few weeks later, I found myself in the same position again, and thus, an unpredictable pattern was forming. The pain has been getting worse, more frequent, and it’s spreading to other parts of my body again. For a few weeks, I believe I was in denial that I could be back to square one again. I’ve found that, with endometriosis, you’re part of a vicious cycle –

As part of the vicious cycle, I forgot how bad the pain can really get, especially with the incredible year I’d had last year. I honestly forgot what this disease is capable of, and the damage it can cause not only physically but mentally, too. Someone at my workplace recently asked me to describe the pain and it took me some time to figure out how to really answer that – on a good day, the background pain feels similar to period pain, with cramps and aches which cause discomfort but is low in its severity. On a bad day, it’ll feel like an elastic band is being tightened around my pelvis, and my ovaries are being squeezed until they’re about to burst, along with the rest of the organs which are affected by the pain. On a really bad day, the pain is nothing short of what I imagine it would be like to have the contents of my pelvis scraped out repeatedly, with a serrated knife. The sharp, stabbing and persistent pain is why 9 times out of 10, I have to go to hospital because, (and take note of this, NHS), painkillers at home, even my friendly opiates, will not touch the sides of this pain. So when the triage nurses ask me to rate my pain, I tell them its 10/10 because at that moment, it feels like my body is shutting down and I feel like I’m dying. And in those moments, I have truly wished I was dead. Every single time.

After a while, you get used to being in pain. I’m in pain every day. Some days are better than others, some days I feel half tempted to book myself in for a radical hysterectomy. There’s very rarely any in-between. But, you learn to live with it because you have no choice. The alternative is allowing it to consume you, and there really is no surviving that. The hardest part of this disease is the way people react to it – and I’m calling out all the healthcare professionals who I’ve dealt with here (excluding my private endometriosis surgeon who saved my life). Whilst I’m aware of the privilege of our NHS, I’ve experienced the worst side of it and I can’t keep quiet about it just because of the nationwide crisis at the hands of our corrupt and useless government. There’s also a global crisis within women’s health which people are not taking seriously enough, and haven’t done so for centuries. My gallbladder was removed unnecessarily because I was diagnosed wrong. I had needles of anaesthetic pumped into my spine because I was diagnosed wrong. I was forced to undergo needless, invasive procedures because doctors thought I had gastroenteritis. One doctor told me it was ‘phantom pain’ which didn’t exist, and was all in my head even though it ‘felt very real’, and suggested I see a therapist about it. Maybe the reason for such a fundamental flaw in our healthcare system is because the last time NICE guidelines in how to treat endometriosis was updated was in 2017. This disease has to be taken more seriously, and change can only start from the top otherwise the results are what I’ve experienced first-hand in hospital consistently since I was 16. Negligence, trauma which now requires me to seek therapy to process and not to mention further worsening of an already painful and incurable condition. The fact that I’ve rated my pain as 10/10 to triage nurses in A&E over the last few years, only for them to categorise me as ‘non-urgent’ on the paperwork makes me sick to my stomach. Whilst I can appreciate that a potential cardiac arrest is more life-threatening than endometriosis, the standard of care must be kept the same across all illnesses. My condition is incurable which is bad enough, but being treated like the pain is just period pain cramping takes a toll on my mental health that I’ll never fully recover from. Women should not be made to tolerate this just because we have a uterus, because I can bet all my money that if men experienced this disease, a cure would have been found yesterday. We shouldn’t be at the point where we go to hospital only to be made to beg for painkillers. Nor should we be at the point of hysterically crying and writhing around, doubled over on a chair in the waiting room to reach the threshold of being in enough pain in a doctor’s eye to receive painkillers. And needing pain relief from hospital doesn’t make us substance abusers. Unfortunately, we really have NO other choice, and there’s so many things I’d rather be doing than crying at the knees of an unrelenting doctor to give me something, anything, to take the pain away.

I don’t know why women are expected to go through this and just deal with it without any support or understanding from those who are supposed to be there, and trained, to take care of us. I don’t know why it takes on average 8 YEARS for a woman to be diagnosed with the disease. I think that’s fucking ridiculous. It scares me to think of how many young women are out there, that are being sent home by doctors without any follow-up, scans or further investigations in place when they could have endometriosis. It’s a paralysing concept, and the severity of the situation cannot be understated. Whilst I am so proud and thrilled to see that more people are taking it upon themselves to learn more about this disease and understand our plight in greater depth, this same attitude must come from the top of the NHS food chain, and then filtered right down to every single healthcare employee, from doctors to nurses to surgeons to sonographers. Take this pain more seriously because even though it might not be a case of life and death for us, it definitely feels like it.

I’ve been failed more times than I can count by those who were supposed to treat me. I’ve been let down badly, and I refuse to believe that systemic racism and sexism did not play a big part in this. But in the midst of all of that, I stumbled across a surgeon who saved me and for that I will be eternally grateful. So on this Endometriosis Awareness Month, I am on my knees begging for someone to pump more funding into the research of endometriosis so our only treatment options don’t just consist of hormone therapy and surgery, and also into the training of doctors and nurses in how to TREAT sufferers of endometriosis when they come through their doors in pain that no one will ever be able to understand. The healthcare system needs to do better when it comes to endometriosis, and that can only start from the top.

And I won’t stop screaming until I’m heard.

A x

The Saudi Experience

Travel

Whenever people hear that I’ve come back from Saudi, I’m usually greeted with a raised eyebrow, an uncomfortable side glance or a “really? Saudi?” I thought I’d shed some light on my experience there, culturally, not just spiritually.

Firstly, the strictness people associate with Saudi Arabia is relatively accurate, but this is fundamentally due to a strictness in cultural lifestyle. Additionally, what we in the West may consider to be “strict” is the norm for them. More and more often, I find myself talking to people who condemn the lack of freedom in their dress code; it’s conflicting, because on the one hand, it’s completely irrational to dispute another country’s cultural values when you don’t live there yourself. However, the lack of freedom for women is a growing concern within the East, especially in Saudi Arabia with more women desperately seeking freedom, independence and the desire to become something greater than a daughter, wife and mother. While it’s not exactly desirable being covered from head to toe in black garments in 35 degree heat, it respects the religious values of the kingdom, especially with it being an Islamic country.

Furthermore, it’s also imperative to understand the differentiation between orthodox Muslims and liberal Muslims: the latter of which is increasingly growing in the East. Once girls get their first period, they’re required to ‘veil’ – wear a burqa and niqab (face veil). As this necessity doesn’t extend to all Muslim countries and is not obligatory within Islam, it therefore becomes a cultural aspect of living in Saudi Arabia for the orthodox. Whilst some see the burqa as oppressive, other see it as liberating. This conflict is also very evident with Saudi women. Hearing stories of women’s experiences in Saudi, I’ve come to understand that women breaking the moulds set to confine them to their gender. The age of stay-at-home wives and daughters is slowly coming to an end as young members of the Saudi royal family are seen to be wearing jeans and dresses instead of the traditional burqa. Maybe we’ll see a drastic increase in western clothing becoming a prominent part of Saudi culture in a few years.

Finally, whilst on my travels I noticed the undeniable amount of wealth Arabs are born into. From families of seven travelling in first class on flights around the world to hands and necks adorned with gold, it’s clear that the rich, have a good life out there. Yet, when you pass a shopping centre and turn onto a side road, slums slowly come into view with children sitting outside, begging for money whilst the elders take refuge in the shade. They’re not wealthy enough to afford a fan, or pay electricity bills. This paradox of extreme wealth juxtaposed with extreme deprivation within metres of each other brings to light just how little is being done for the people of Saudi, 15% of which live in poverty. Since the assassination of King Faisal, a King who had great ideas for Saudi in his plans to liberate the country and introduce more freedom and independence as well as financial reform designed to help the people, the country has digressed. The royal family live with an abundance of wealth at their fingertips: the people’s money. Instead of projecting this wealth onto poorer parts of the country, helping eradicate poverty and poor living standards for those who can afford very little, the royal family are seen to be travelling across the world, to their villas in Spain and Cannes or apartments in central London.

My love for Makkah and Medina stems from a spiritual enlightening I gained whilst on my pilgrimage. My love cannot extend to Saudi Arabia as a whole, simply because of the explicit inequality which is grossly overlooked by the country’s wealth as a whole. The people’s money is not being used effectively. Women are awfully restricted in that they still cannot drive; if they don’t hold a valid driving license, they cannot vote. They’re required to travel with a chaperone. They cannot take part in criminal proceedings as they’re considered forgetful and too emotional. Saudi has a long way to go to achieve gender equality and freedom; something which may never be achieved, predominately due to Wahhabi sects exercising their beliefs on how one should live their lives as a true Muslim. It’s the 21st century, but it appears Saudi are still centuries behind.

A x

 

The Lynching of Farkhunda; The Lynching of Women

Current Affairs

They portrayed her as a woman who suffered from mental illness, and was mentally unstable when all she was doing was standing up against lies being told in the name of religion. She was the voice of truth, of reason, and her voice was suppressed by men who believed their voices were louder, more important and should be listened to instead of hers.

I find it strange and slightly shocking that Farkhunda’s killers did not once question the mullah’s claims of the victim burning the Qur’an; they jumped to attack a woman, innocently defying a man who was selling lies to vulnerable women. I think the real issue here is the fundamental flaw in the Middle Eastern society; the male attitude towards women. Women have always been perceived as inferior in society; in many, they still do.

However, I believe that the despicable attitude towards women in countries such as Afghanistan is predominately due to the cultural conditioning men are exposed to. They know no other way of treating women, this is the attitude they have adopted from their fathers, brothers, grandfathers and uncles. Not all men have this attitude, but the society
cannot move forward unless there is a reformation of this culture.
Afghanistan has suffered at the hands of violence for years, could it be that these men who killed Farkhunda are a product of the violence in which they have been raised – because they know nothing else? Can we find it in ourselves to forgive them because it’s not really their fault?
I think not.
I think it takes a great lack of human nature in order to punch, kick, stand on and jump on a young woman until her face is unrecognisable, only to then SET FIRE to her body at a riverside. I don’t believe for one second that these men have a conscience or humanity.

An educated woman was condemned to death by a group of men who believed the lies of a man who could not bear to be
defied, confronted for manipulating young women. The fact that an official investigator claimed there was no evidence for the mullah’s claims of Farkhunda burning the Qur’an (BBC News, 24th March) reinforces the male perception of women. The mullah, along with the barbaric murders, took it upon themselves to take away a life. The heavy irony of this situation is that Farkhunda was accused of blasphemy, and in the name of Islam, the men killed her. An act of murder is a sin in the Qur’an;

Whoever slays a soul, unless it be for a manslaughter or for mischief in the land, it is as though he slew all men;
and whoever keeps it alive, it is as though he kept alive all men.(Surah al-Mā’ida 5:32)

Farkhunda was murdered for speaking out.
Her voice was silenced through horrific violence.
A mob of men killed her and showed no mercy or remorse.
It’s time to reform the outdated culture in the Middle East and Asia.
Women should not have to be killed for us to realise that it is time for change.

#JusticeForFarkhunda
#Kabul
#JusticeForWomen