Anisah vs Endometriosis: Round 1 – Diagnosis

Endometriosis

Making the decision to talk and write about my battle with endometriosis was a big one, made from my hospital bed post-surgery two weeks ago, when I realised I wouldn’t be able to sleep at night if I didn’t use this incredible platform I worked so hard to build to share my experience. In doing so, I hope to spread awareness of how catastrophic this disease is, the extent of its debilitating symptoms and ultimately how hard I had to fight to get to where I am now. With chronic pain and this incurable condition comes intense trauma which I’ll probably spend the rest of my 20s and 30s processing, but it’s something I believe I’m ready to push through for the sake of other women out there. This post is for the young teenagers who don’t understand why their period pains are so bad but are made to believe it’s normal; for the young women who are forced to choose between having children and having surgery to alleviate agonising pain; for the partners, husbands, fathers and friends who can’t understand what it’s like to live with this disease, and for the women who don’t think anyone is listening.

In September 2019 I found myself in a hospital bed in Mauritius where I was celebrating my graduation from university, with a doctor standing in front of me telling me a cyst on my ovary had burst and there was fluid in a uterine cavity in my pelvis. They wanted to operate on me there and then, but I was due to fly home the following day so opted to be treated in the UK. I was immediately referred to a gynaecology department in my local hospital where I’d spend the following 4 months undergoing various scans and tests to understand why I was experiencing ruptured-ovarian-cyst pain when there was no ovarian cyst anymore. During those four months, I’d also frequently find myself in a&e begging for someone to help with the pain because it was truly unbearable. I can only describe it as a continuous stabbing pain in my lower abdomen/pelvis, sometimes manifesting as though someone was physically squeezing my ovaries with their bare hands.

In January 2020, I was referred to my second gynaecology consultant after my first consultant failed to understand why I was in so much pain that it incapacitated me. He suggested I “could” have endometriosis – the only way to diagnose suspected endometriosis is to undergo a diagnostic laparoscopy. Superficial endometriosis does not show up on any ultrasound, whether it be external or trans-vaginal (internal), and so therefore “going in” was the only way they’d know for sure what was going on inside my womb and pelvis. We were approaching the height of the pandemic by this point so my surgery was understandably postponed twice, but after pleading with the doctors to push it forward due to progressively worsening pain and its severity, I eventually underwent keyhole surgery in May 2020 to explore the inside of my pelvis and find the cause of this devastating pain. It’s most ironic that my surgeons and consultants didn’t expect to find anything – the scans were clear, my blood work was completely normal. However, the laparoscopy showed extensive endometriosis tissue which had spread across my pelvis. It had reached and spread across my ovaries, the outside of my uterus, the inside of my uterus and the back of my uterus. I woke up from the operation only to be told with considerable surprise and a hint of disbelief that my endometriosis was aggressive. I was informed that the surgical team used an operating technique called “ablation” to remove these deposits of endometrial tissue but “they’d got it all“. Ablation involves burning the endometriosis deposits, as opposed to cutting it right out which is a technique called “excision”. My surgeon subsequently placed a Mirena coil in my uterus post-surgery to lessen my period pains going forward and reduce heavy bleeding. The hope was that I would eventually stop getting periods which would eventually lessen any future flare-ups caused by my endometriosis, as this is a chronic condition and so ultimately would grow back at some point.

The surgery appeared to be a success initially. It took three weeks of recovery but I was soon back on my feet afterwards and felt significantly less pain than before my operation. I was back to working out 6 weeks after the operation, and by 8 weeks post-op, my energy levels were almost back to normal. On some days, I experienced no pain at all! I came off the strong painkillers within a couple of months – it was truly miraculous and I honestly thought I’d seen the end of my fight with pelvic pain. However, come September 2020 the symptoms came back with an almighty vengeance. Once again, I’d frequently find myself in a&e being given two doses of morphine to control the pain and even that wasn’t enough. The flare-ups would get worse around my period – the first three days were agonising and at times I’d be vomiting because the pain was so intense, or doubled over in a foetal position. I’d be taking tramadol or codeine to control the pain when I was in the throes of a flare-up. And the worst part of it is that I felt like I needed to go on as normal – I’d had the surgery less than four months ago, surely my endometriosis couldn’t have grown back already? Maybe this was just post-op pain? Could it be that I was simply overly-sensitive to pain now? I was referred back to my consultant who was as confused as I was.

Over the course of the following five months, I’d have various pills thrown at me in a desperate attempt to calm me down, to no avail. In November 2020, my parents and I decided to get a second opinion – I underwent a private trans-vaginal ultrasound at an ultrasound centre in London where it was discovered that I had a 5mm endometriosis lesion in my uterus; my endometriosis had grown back in less than 7 months. To this day, I am filled with such gratitude that the woman who performed my ultrasound was a specialist in the field of endometriosis, and thus with trained eyes was able to pick up this small deposit of endometriosis that no one else on the NHS could see. Had my parents not pushed for a private scan, I’d have been none the wiser to what was happening inside my body and potentially wouldn’t have fought as hard as I did to get some answers.

After the private scan, I went back to the NHS with my new ultrasound report in hand – the NHS dismissed my report instantly. After conducting their own ultrasounds to prove a point, they couldn’t see any endometriosis at all despite my excruciating pain and multiple trips to the emergency room for morphine and codeine to control my symptoms. One ultrasound sonographer even claimed this 5mm endometriosis lesion was “simply hormonal“. I was put on three different contraceptive pills anyway, all of which failed to make an impact on my worsening symptoms. I was given a hormone suppressing injection which almost obliterated my will to live and physically wrecked my body. I was then given more contraceptive pill options. It was only in March 2021 that we realised something I wish I’d figured out seven months prior – my endometriosis doesn’t respond to hormonal treatment and I don’t respond well to hormonal treatment either. I’ve come to learn that this is common in endometriosis sufferers – some forms of the condition can be well-managed by the contraceptive pill alone as endometriosis is estrogen reliant, but some forms of the disease such as mine require a more aggressive approach. By March this year, my quality of life had deteriorated extensively. I was in pain every single day of the month; I knew nothing else but agonising cramps which would paralyse me; the constant feeling like my ovaries were being either stabbed or physically ripped out of my body. The onset of pain would be so unpredictable that I’d wake up with baseline, bearable pain but suddenly I’d be at work, doubled over and gasping for breath because my cramps would intensify – going home isn’t even remotely a viable option either during the throes of endometriosis pain, so I’d just have to suffer through it with a forced smile on my face. The symptoms were also evolving rapidly – I was starting to experience crushing chest pains, burning shoulder pain on my right side, pelvic pain radiating down both of my legs resulting in me losing feeling in them on the odd occasion, stabbing pain when I went to the toilet (I’d have to literally push myself off the toilet seat whilst screaming because the pain was too much to bear when sitting down) and a stabbing pain in my upper right abdomen, just underneath my ribcage. No one could make sense of my escalating symptoms and despite undergoing countless, extremely invasive scans and tests, everything came back clear to them. The NHS eventually stopped believing my pain, and what’s worse is that they stopped taking my concerns seriously. They’d given up on me, instead suggesting my priority as a 25 year old should be focussing on my fertility as opposed to having another operation which could jeopardise my chances of falling pregnant – this is categorically incorrect and an example of the outrageous standard of care I was given on the NHS. Fertility will not be affected by endometriosis surgery if performed by the right surgeon who knows what they’re doing!

In March 2020, after refusing to try a second dose of the Zoladex injection, I requested to speak to the consultant overseeing my treatment and care. He was my fourth consultant since September 2019, and supposedly a specialist in the field of endometriosis so I hoped he’d thought of more options in terms of my treatment plan. As expected however, that phone call was nothing short of traumatic; the consultant continuously defended his choice of treatments despite the evident deterioration of my mental health as an inevitable consequence of various hormonal treatments. He was incredibly condescending and refused to take ownership of the state I was in. He took no responsibility for his failings as a doctor and a gynaecological specialist. In fact, at one point he stated, “at least we know you won’t able able to cope with the menopause in the future” after I detailed my traumatic experience of taking the Zoladex injection. I felt let down, hopeless and devastated after that telephone consultation. I was close to giving up and almost resigned myself to a lifetime of ovarian and womb pain that would dominate my entire identity. I can’t put into words how emotionally exhausted I was at that point; I honestly thought there was no end in sight and this agony would be the end of me.

My parents and I decided that my condition was too severe to continue on the NHS path – I wouldn’t survive it. I decided to investigate some endometriosis specialists in London who had a greater knowledge of the disease than the NHS doctors I’d been condemned to. I was desperate to talk to someone who understood the science behind endometriosis and who could offer me an alternative to taking two forms of contraception at the same time. I just so happened to stumble across a specialist based in Central London who was apparently the “best in the field” (I won’t mention his name out of respect for his privacy, but Google introduced us!) In fact, every review of him exceeded outstanding and so I took the plunge and messaged him. Three weeks later, I was sitting in his office smiling on the verge of tears underneath my face mask with incomprehensible gratitude – I’d found someone who took me seriously and offered me a coherent explanation for every single one of my symptoms and why I was still suffering. He discussed the science behind the different types of pain I experienced, then offered me clear solutions with sincere confidence and ease; it was at that point that I knew I’d come to the right person. I’ll discuss in greater detail the treatment I underwent under his care in another post because it needs to be shared but I also needed to draw attention to it now. Because I didn’t think anyone would listen to me again after the experience I had with the NHS – for months, all of my symptoms were belittled and my concerns dismissed. I felt like my endometriosis would control my way of life for the rest of my years and I lost all hope in ever being pain-free again. I felt small in the face of the NHS consultants and doctors; not once did I see or feel an ounce of compassion, empathy or a willingness to understand my plight. They threw medication at me without even contemplating whether or not those drugs would be in my best interests, what with my reaction to hormone therapy in the past. I’m 25 years old, and I’ve spent the last nine years of my life in and out of hospital, in pain I can’t even put into words to describe anymore. I lost the very essence of who I was and instead I became a young woman filled with resentment and anger towards the world around me. The smallest things would irritate me, and the most mundane things would set off anxiety attacks in public. I was constantly at war with myself and this affected every single aspect of my life. Being in that much pain for such a long period of time was also incredibly isolating; I felt desperately alone in my suffering and despite surrounding myself with the most incredible circle of friends, I ended up hiding it all from them because I knew they wouldn’t understand what I was going through. So, to have found someone who instantly listened to me, took my symptoms on board and acted on them immediately makes me the luckiest girl in the world.

The one lesson I can take away from my battle with endometriosis is please listen to your body and act on your concerns. You know your body better than anyone else on this planet – if something doesn’t feel right, follow your instincts. It’s so much better to know and it be nothing, than to ignore it and the consequences be devastating. Had I stayed with the NHS this year and not fought for my health, my endometriosis would have destroyed four organs in my pelvis and caused irreversible, life-changing damage. All because my doctors couldn’t be bothered to investigate my pain further and take this condition seriously. Women across the world elect for hysterectomies because their endometriosis is too severe for them to cope, and treatment either isn’t working or isn’t being made available/accessible to them. This disease at times destroyed me, but it’s now given me a purpose in life – to ensure no other woman has to go through what I did and feel the hopeless despair at being refused certain treatment.

I cannot emphasise this enough – my scans came back completely normal but when my surgeons opened me up, they found diseased tissue spread across my womb. My excruciating pain was my body’s way of crying out for help, and I’ll be forever indebted to my current surgeon and the team of private specialists who listened to it without any hesitation and offered to help in any and every way they could. The NHS needs to do better when it comes to women’s health. Don’t dismiss a young woman’s pain – endometriosis pain needs to be taken more seriously. I’ve had my gallbladder removed and even that was nowhere near as painful as this. Train your consultants and specialists to treat patients with compassion and empathy – this disease is traumatising as it is, but being made to feel small and belittled by the people who are supposed to help you is a horrifying feeling. I was made to feel embarrassed and ashamed for begging for help from the consultants who continued to fail me. During every consultation, I’d break down in tears at least once, only to find the doctors staring at me with significant discomfort and unease – I was never comforted and I’m struggling to find the words to describe how helpless and devastated I’d feel during these consultations. I deserved to be taken seriously but my doctors robbed me of that right the second they implicitly categorised me as a girl who experienced cramps and some pain. I’m still of the opinion that because my pain didn’t manifest as something physical that my doctors could visibly see and treat, they struggled to believe it was real. I’ll have a hard time forgiving them for what they put me through.

A x

My Zoladex Experience

Endometriosis

I can’t even remember the last time I wrote about my health on this site, which is a huge indication of a lot of time having passed, along with various health hurdles along the way to discuss. First and foremost, this post is solely discussing my experience with the Zoladex Implant (3.6mg) as a form of treating endometriosis. I’ll be discussing more in-depth about my endometriosis journey, from diagnosis to where I am now in terms of treatment, general (and mental) wellbeing etc, in another post as I’m still figuring out how to articulate what exactly I’ve been through. Chronic endometriosis pain is incredibly traumatic, and re-visiting some suppressed memories of a&e visits/flare-ups is taking its toll on me. Bare with, it will be live on the site as soon as I can bring myself to compartmentalise effectively enough to write coherently.

I was diagnosed as in-between Stage 3 and Stage 4 endometriosis in May 2020, following a very reluctant decision to perform a diagnostic laparoscopy. Here’s a very brief breakdown of what the different stages entail:

Stage I – Minimal (Some deposits of endometriosis, low in frequency)
Stage II – Mild (More deposits of endometriosis, deeper scarring)
Stage III – Moderate (Deeper, more frequent deposits of endometriosis tissue; small ovarian cyst(s) & scar tissue)
Stage IV – Severe (Widespread endometriosis, large ovarian cyst(s) & widespread scar tissue)

Following the removal of widespread endometriosis deposits found across, inside and outside my uterus during my laparoscopy in May, I was fitted with an IUD – the Mirena coil. I was told to wait 6 months to feel the effects of the coil, which would include a significant reduction in severe, acute pain and periods either becoming less painful, less heavy or stopping altogether. Unfortunately, it was found that the Mirena coil isn’t enough by itself treat the endometriosis that still remains in my womb and so, 9 months and 2 different contraceptive pill treatments later, I was given the Zoladex implant injection to be administered once a month for three months. Zoladex induces a chemical menopause, temporarily ceasing the production of oestrogen from the ovaries. When it was suggested in January by the first gynaecologist I’d seen on the NHS who specialises in endometriosis since I was diagnosed, I was desperate to alleviate my symptoms and agreed to give it a go. I explained to the doctor my main concerns – the side effects; weight gain, hot flashes and most importantly, the effect this hormone treatment would have on my mental health. He assured me that this injection, for the majority, causes very few side effects especially concerning the fluctuation of mood and any effects on pre-existing mental health disorders. I subsequently wholeheartedly agreed to give this form of treatment a go, since most of the other treatment options have been exhausted and I’m left with very little alternative other than surgery.

I had my first injection on the 14th January (a lot of people on forums relating to endometriosis complained and feared about the size of the needle, but you won’t feel a thing and if you do, it’s over in a split second). Within two weeks of the injection, I started to notice a few side effects – mostly irritability and general mood swings, but nothing dissimilar to what normally happens during a period. I still got my period at the end of the month, right on cue and I’m sure this is predominately due to the fact that the injection hadn’t fully kicked in yet.

Around three weeks post-injection, I started to feel the full brunt of all the side effects I was dreading. Towards the beginning of the week, my mental health plummeted to an all-time low; I felt constantly upset despite having absolutely no reason to be sad. Normally when I feel my anxiety starting to spiral, I give myself a day to feel everything my brain is forcing me to feel; I don’t instantly try to seek answers and explanations as, for me personally, that results in a vicious cycle of overthinking, overanalysing and subsequently feeling overwhelmed with different possible reasons behind my mental health flare-ups. I followed this exact protocol during the third week post-injection, and on the following day I attempted to begin compartmentalising any stresses or emotions which could potentially become a trigger for my mental health, but I came up empty. It’s a rarity to say this, but at this current point in my life I am absolutely okay and better yet, happy and content (given the situation we’re in), which left no reason for feeling as if my life was falling apart and I couldn’t cope. I decided to keep myself busy and productive – sometimes when I’m having a ‘low’ day, it can be because I’ve felt like I haven’t achieved anything or made use of my day and time. However, even keeping busy was fruitless as I found myself in tears every night that week.

Aside from my deteriorating mental health, the other side effect I struggled with the most was hot flashes. I was told to watch out for this, as it’s the most commonly reported side effect of the injection (1 in 10 women report experiencing it). I didn’t really think much of it to begin with – I thought I could handle getting a little warm every now and then, but nothing really prepares you for sleepless nights with two bedroom windows open to cool you down, when it’s just above freezing outside but your body is convinced it’s the height of summer. My body would be freezing to the touch, yet I’d be sweating constantly through the night until 4am. It would also hit me like a truck out of nowhere – one minute I’d be walking outdoors somewhere, the next I’d be drenched in sweat from head to toe and getting hotter by the second. At times it would be impossible to cool down and I’d just have to ride it out by simply waiting until the hot flash disappeared. The only way I’m managing to combat this side effect is my keeping my windows open from around 11pm when I’m about to get ready to sleep, until I wake up in the morning. Naturally, my room could be mistaken for a fridge when I wake up but I manage to sleep a little easier when the temperature in my room falls below 7 degrees.

Other side effects I experienced to a much lesser degree included fatigue, hair loss and my skin breaking out in spots. Another commonly reported side effect is acne, which I didn’t experience, but I usually keep to a strict skincare regimen and stepped up skincare product game by using certain serums which target skin prone to hormonal acne. That being said, I noticed that despite my best efforts I did break out in spots all across my chin under my lips which is something I’ve never had before. I’ve heard from multiple dermatologists that spots/acne around the chin are reflective of hormonal imbalances, so I’m just sticking to products recommended to target breakouts in that area (Azelaic Acid & Vitamin C) and hoping for the best. Breakouts aren’t the best but I do consider this side effect the lesser of the 3/4/5 evils. I’m also no stranger to fatigue but found myself needing to take a nap in the evenings at around 8-9pm because my energy levels plummeted to the point where I couldn’t physically function – I was unable to hold a conversation, or pay attention to simple things like reading a book or watching Netflix. My body felt heavy and small tasks like walking up the stairs took every ounce of energy I had, where I’d have to sit down once I’d got up the stairs. The hair loss side effect didn’t affect me greatly since I didn’t really notice it in the beginning. I only acknowledged something was different when I was in the shower and strands of it would fall out when I’d wash my hair, but for me personally, this wasn’t even remotely problematic. It is worth noting that Zoladex isn’t known to cause weight gain as a side effect, however everyone responds differently to different treatments so there’s no definitive way of ruling it out as a possibility for some people. I didn’t experience any problems with appetite or weight gain/loss with the injection, as I have done with past contraceptive pills and endometriosis treatments.

Ultimately, I can say with the utmost clarity that the Zoladex injection proved incredibly problematic and in many ways, traumatising for me. The two greatest obstacles I came across whilst my body was adjusting to the drug were the effect on my mental health and the hot flashes. My anxiety is normally incredibly well-controlled – I haven’t had a significantly awful anxiety attack or panic attack for over a year now, so these relatively new feelings of despair took me by surprise and honestly, fear. I have a method of approach when I feel anxiety attacks coming on, or if I’m generally feeling quite low. I try to be as methodical as possible to ensure I feel better as quickly as I can whilst trying to acknowledge any explicit or underlying triggers, so what I went through that week was nothing short of terrifying. There’s no real way of effectively articulating how you’re feeling when you think you’re at rock bottom – in hindsight, I can now say with complete clarity and confidence that I wasn’t actually at rock bottom, the hormones convinced me I was.

I should reiterate that this injection does induce an artificial menopause which, naturally, comes with menopausal symptoms. I have sincere sympathy for people who experience menopause because from the brief glimmer of insight into it that I received, it was horrific and agonising. I’m nearly 25 years old – I think this form of treatment isn’t the best option for me personally for two reasons. Firstly, I don’t think anyone should have to experience menopause at any time of their lives, but especially not young women whose hormones are running wild all day everyday anyway (I understand that some women elect to undergo medical menopause through hysterectomy, I respect and acknowledge that). Secondly, I’ve experienced a lifetime’s worth of pain whilst struggling with endometriosis and whilst this treatment is designed to provide ‘respite’ from the intense pain, it most certainly achieved the opposite for me. On top of endometriosis-related pain and period-related pain, I was experiencing the side effects listed above. This combination effected me in more ways than I can comprehend.

Finally, I cannot stress enough the awareness that every person reacts differently to different treatments and drugs. I am fully aware that not everyone will share the same or similar experiences to mine, but as I start to raise awareness and share my story with the world, I want to be as transparent and honest about my journey as I can. I want people who may think they could have endometriosis, or are considering exploring the possibilities of certain treatments, or who just want some more information, to have access to resources and fundamentally, personal stories and emotional insight from someone who’s been there and wished they had it when they needed it the most. This condition is so common, yet so difficult to diagnose – the in-between stages are close to unbearable and I salute with pride the women who have come through the other side with strength and perseverance in their battle against this horrific disease.

A x

Mental Health Awareness Week: Self-Love

Mental Health Activism & Awareness

As I mentioned in my previous post, my campaign for this year’s Mental Health Awareness Week is centred around self-love. Today I’m tackling the subject of body positivity.

At 17, I developed a rather unique eating disorder – it was a mixture of starving myself and binge eating. I used to wake up at 5pm just before my parents got home from work, eat 3 packets of crisps and loads chocolate, have a couple cans of fizzy drink and then wait for them to come home. Because I’d be awfully bloated from this binge eating, I never used to be able to eat dinner properly in the evenings with my parents, so I’d normally end up crying at the dinner table because I was sad about the eating junk food earlier in the day. It was a vicious cycle – wake up late, binge eat unhealthy food and then cry about it after. 

I started to lose weight rapidly and my parents delicately suggested it might be time for me to seek help with my weight and food issues. After undergoing intense psychotherapy for about a year, I grew to understand that I was essentially punishing my body for battling against itself after I had my gallbladder taken out at 16. Because I struggled to recover from the surgery in time to sit my a-levels, I performed rather catastrophically in my first year of college. Thus, to retain some sense of control over my life, I decided to limit what I ate in order to control my weight. When I started seeing quick results from this awful diet of mine, I ran with it because it gave me a sense of achievement. The way I looked at it back then was, “maybe I failed my a-levels, but at least I’m one step closer to being a side 8.” I had a terribly unhealthy and negative relationship with my body which in turn affected my mental well-being detrimentally. 

7 years later and I finally have a better relationship with my body. My eating habits have dramatically improved – I’m eating minimum 2 meals a day instead of 1! Breakfast is still a sticking point for me as I hate eating when I wake up in the mornings but I’m always eating something during the day, every other hour or so at least! I’ve learnt to accept that whilst I’m battling health issues with my body at present, and having done so since 16, I shouldn’t be punishing my body for its struggles. I should be celebrating my physical and mental achievements. Going through the pain, the surgeries, the countless procedures that I have over the years has made me a stronger person. It sounds incredibly cliche but it took being sick to appreciate how healthy I am now. 

Since I started personal training in the gym, I’m also painfully aware of the bad habits that can be picked up from excessive and obsessive exercise. My personal trainer kept me in check every now and then, even in lockdown, to keep me motivated to exercise whenever my body allowed me to, and maintaining a healthy, balanced lifestyle has always been at the heart of our training together. Everyday I’m trying to ensure I don’t go overboard with my exercise routines – I give myself rest days every other day to ensure my body isn’t being worked into overdrive. With my current condition and the painful periods during that time of the month, I’m unable to move from my sofa let alone work out so I make sure I give myself a week’s rest, too. 

My personal training sessions have taught me that it’s not about looking my best, it’s fundamentally about feeling my best. Whatever my reflection shows me in the mirror doesn’t compare to what I think of myself from the inside. In an era defined by social media which essentially only reflects the best moments of people’s lives which they choose to share, we find ourselves subconsciously comparing our progress to one another. With the rise of fitness content creators comes a dangerous need to look as good as they do, to eat as clean as they do, and to work as hard as they do at maintaining a conventionally attractive physique created by society, yet deemed perfect by our own selves. Even I find myself wishing I was as toned as a Gymshark model but I have to remind myself that I am not an athlete – I have not been training rigorously. Any progress I make should be celebrated, not belittled in comparison to that of others online. We spend so much time thinking about how we can improve our appearances when our focus should be on improving our state of mind, our perceptions of ourselves. I have good days and bad days just like everyone else, but I’m grateful to be surrounded by so many people who are such positive sources of light and encouragement in my life. They celebrate my successes, support my achievements and promise me a safe place to land if I ever fall into the trap of feeling low. 

Your self-worth is defined only by how you see yourself, and the relationship you have with your body. If you want to exercise 7 times a week, you can but you don’t have to. If you want to eat healthy food everyday of the week you can, but again, you don’t need to. Listen to your body and work out what’s best for your mind. Our bodies are essentially vessels for the mind and we ought to treat both with simultaneous care, love and respect. 

A x

Mental Health: Uncut

Mental Health Activism & Awareness

[Writing this post took all the balls in the world for me today.]

On the 18th February, I cried for hours. And by hours, I mean from approximately 5pm to 1am. It then concluded with a grand finale of a monumental panic attack in which I forgot how to breathe and thought I was literally going to die. (PSA: I know I have the tendency to be dramatic but this is actually in no way exaggerated!)

This is what mental health looks like.

I have a terrible habit of bottling up my emotions, and I guess that partly stems from being an only child – I am in no way blaming anyone but myself for this terrible habit! It’s a life-long lesson I am slowly beginning to fully comprehend. I also suffered an extraordinary amount of psychological abuse during high school (ironically, mostly from teachers), and that impacted both the perception I had of myself and the way I lived my life. My social anxiety most probably is a result of being punished weekly at secondary school by teachers who viewed my insubordination as a threat to their authority. (Fun fact: I hated teachers who thought respect was their automatic right, simply because they were responsible for our academic education.) They broke down every single piece of me until my identity was entirely consumed by the failure they enforced upon me. Now, I know it sounds like I’m bitter and resentful, but I do believe I have earned the right to own the effect they had on me. I never truly accepted my secondary school experience as traumatic until I developed an eating disorder at the age of sixteen.

My general anxiety (which I define for myself here, through my personal experiences which are in no way universal, as random bouts of extreme nervousness, worrying excessively over minor, minor issues which I exacerbate in my own mind to become something huge etc.) is a part of me I’ve learned to live with for a long time. It’s like a scar; I know it’s there, I can feel it with me all the time but more often than not, I’m able to live peacefully without it sabotaging my way of life. I guess on some level, everyone has a form of general anxiety. Some have it worse than others. However, there are days where I can feel my anxiety digging its claws into my skull and tearing everything to pieces. I’m left feeling exhausted, worn out and emotionally numb.

This is exactly what happened on the night of the 18th February. Being as busy as I am, amidst the chaos of my final year of university whilst simultaneously juggling a job, I don’t have time to process my own thoughts – the good, and the bad. Having a health condition which causes moderate to severe pain daily also massively plays into my anxiety, and the two are inextricably intertwined. Undergoing my surgical procedure nearly one month ago, and having to deal with the agonising consequences of a rather horrendous recovery whilst trying to catch up on missing a month of university took quite a toll both physically and mentally. That night, I broke; I felt my body physically break. I cannot quite describe it in any other way. I screamed obscenities at the ones I loved the most, blamed the world for my problems, cried then felt absolutely nothing. It’s only now, looking back, that I realise just how painful that breakdown was. I saw no way out of my own head; I was drowning in my thoughts and that manifested into physical suffocation. I could not breathe.

I guess the aim of this post is to draw attention to the silent sufferers of mental health and to raise awareness. If you’re struggling, drop me a message. Drop someone a message. Don’t suffer the weight of your world on your own – God, I cannot stress this enough. Don’t be someone you’re not just to impress a few people. The social concept of ‘fitting in’ is so fucking overrated. Don’t suffer in silence. For so long, I created a facade of myself: one that’s strong and fearless and brave and all of that bullshit. But there are times like this where I remember just how vulnerable I am. I’m not anywhere near as strong as I want to be. I’m not always the person you see on Instagram every day. And that is so, so okay. It makes me human. 6 years on from the operation that changed everything (gallbladder cholecystectomy) and I’m still learning so much about myself.

I’m done with pretending to be brave for the sake of others. I’m done with pretending to be someone I’m not, and it’s truly the most wonderful feeling in the world. At 23, I’m finally finding myself. I’ve spent 6 years trying to forget the pain I went through, but I’ve never really forgiven myself for it. My body has been fighting itself for years, and it’s time I showed it a bit more understanding.

A little more self-love.

A x

‘Afflicted’ – A Netflix Original Series

Current Affairs, Original Writing

I did all of this work just to get sick and not be able to live my dreams

A new Netflix series aired recently surrounding the stories of people suffering from chronic illnesses, undiagnosed or “unspecified” by medical professionals. Symptoms were extreme, leaving most of the participants of this docuseries unable to perform any of their daily activities.

Each person differentiates themselves from another through their symptoms, and the symptoms present themselves as different illnesses entirely – from the offset. The words “psychosomatic” and “Lyme Disease” are thrown around often through the episodes, suggesting a potential link between the participants, their symptoms, and the disease. I’ll leave the opinions of other participants to the general public, however. There’s one person in particular that I want to focus on.

We’re introduced to Jake in the third episode of the docuseries; an aspiring musician whose career was suddenly cut short due to the onset of symptoms linked to Lyme Disease. The beginning of the episode features Jake’s struggle in articulating his current symptoms to the camera, and as the episode progresses, the viewer is lead to understand the events which took place in his life but most importantly, how his life has been dramatically impacted because of his illness.

22 minutes into the episode, I had to stop watching. Any documentaries featuring people struggling with chronic illnesses hit a nerve, so to speak. The intention of this post, however, is most definitely not to associate my condition on any kind of level with those in the series. This post was to highlight the unimaginable trauma of those who may look physically well but are struggling with an uncontrollable and unpredictable illness, of which there is no cure yet and treatment which consists entirely of trial and error. Watching a relatively young man’s life turned upside down due to something both entirely out of his control and entirely unanticipated is definitely heart-wrenching. To see the ambitious light in his character gradually diminish – it puts everything into perspective.

Learning about stories such as that of Jake’s really makes me realise how lucky we are, how lucky I am. I can call myself a survivor, but am I really battling a condition of no known cure? No. Has my life been stripped from my hands overnight? No. I agree with one thing, in particular, the docuseries mentioned; those who are sick have a tendency to associate their identity with their illness. They’re not just a person anymore – they’re a sick person. I, too, have fallen victim to enshrouding myself in self-pity when, in retrospect, my health is improving, I am most certainly not bed-bound, and I do not rely on medication to essentially live. Those who have suffered from chronic illnesses, and/or chronic pain can definitely identify with the overwhelming trauma it leaves one with, even once they’ve overcome the worst of it. And perhaps this motto isn’t the healthiest to live by, but the documentary showed me how people undeniably have it much worse than people such as myself. Granted my health isn’t the best it could be at the moment, I’ve learned that relatively stable health is often taken at face value.

I intend to bring myself to complete the rest of Jake’s story. And he’s taught me just how lucky I truly am, to be able to live my life to its fullest potential – he’s given me perspective. I sincerely hope from the deepest of my heart that his story has a happy outcome.

The transience of life is all too often overlooked and underestimated. We have an overwhelming ability as a society to conceal ourselves behind issues which are ephemeral in comparison to others.

The series, in general, verges on the side of sensationalism as opposed to information and fact, but the stories of the participants raise some interesting questions in relation to chronic illnesses, pain and an array of unspecified symptoms.

A x

Featured image: Afflicted, Netflix Original Series (2018)

An Open Letter to My Parents

Life Updates

The past few years have been turbulent, both physically and mentally for myself and those around me; the constant rejection of the answers I was desperately looking for, the reluctance to be treated for whatever is going on inside me, and the anxiety surrounding being in pain everyday were painful to say in the least. However, with the news that the investigations into my health conditions have now come to an end, I’ve stopped hoping for a miracle, adopting a rather more realistic approach to dealing with the pain. I’ve made peace with the idea that I’ll have to treat these symptoms, potentially for the rest of my life, rather than having multiple doctors, surgeons and specialists poke me here and there, performing countless tests.

Those closest to me will know how much I despise pity and sympathy: my health is something I have yet to come to terms with (I know, I know, it’s been 4 years) so handling other’s reactions isn’t something that comes easily to me when I don’t really know how to handle it myself. However, the one thing I have always been grateful for, but now more so than ever, is the relentless support of my parents.

During my darkest hours, they shared my pain and agony. In 2013, they shared my fear of going under the knife for the first time in my life. But they put aside all their own emotions to support me, comfort me and encourage me. Many will comment on my bravery in suffering from a debilitating health issue, but I believe the bravest of them all are my parents, for being strong for me. I remember waking up from the general anaesthetic after my operation and hearing my mum sob because she couldn’t handle the sight of me being attached to wires, an oxygen mask, and tubes attached to me. This was the first time I’d heard her cry since I was diagnosed, and in many ways that was more painful than the actual agony of a gallbladder attack. As parents, there’s an assumption that you have to be strong for your children, and my parents exceeded that. I know for a fact that their support has helped me live through this, and without it, I don’t know where I’d be.

It’s time for me to stop thinking about how I’ll survive living with whatever I am going through, but rather focus on how I can live my life to the fullest with it. Perhaps I was justified in my selfishness regarding the whole thing – after all, it was my illness, something only I was experiencing. But in many ways, my pain is also my parents’ pain. I haven’t given them enough credit for helping me survive the worst days of my life. I owe them everything for helping me keep it together when I was at my lowest points. Their ability to see the light at the end of the tunnel when I’m blind to it myself is a gift they are blessed with.

So thank you both, for transforming me into the strong woman I am today. I am a survivor because of you. You love me even when I’m at my worst, and boy am I an absolute nightmare. Through your care and devotion, you have created a human being who is prepared to fight whatever life throws at her head on. You have given me the strength to survive my darkest hours, and it’s only your words which help me overcome them. Your strength and courage lives within me, and I am so proud to call you my parents. I don’t know what the future holds, but I know I’ll be able to embrace it because of you.

A x

HEALTH UPDATE: JULY 2016

Life Updates

It could be worse.

That has pretty much been my life motto for the past two years and it’s actually worked out considerably well. As a result, I’m less prone to wallowing in self-pity, although perhaps I can thank my job for that, too.

After 20 months of uncertainty, pain, hospital admissions and tests, I’ve been told there’s nothing that can be done for my current health situation as there are too many risks associated with surgery. (Last resort and what we were subtly hoping for as a miraculous cure) There’s no medication left for me to take; I’m already on painkillers, plus chronic pain relief before I go to sleep, so a medicinal approach is also out of the question. Doctors have now suggested a “holistic approach” to dealing with the pain and symptoms that come with this confusing/unique health condition.

I’ve been a little weary when it comes to the term “holistic” because it felt like a cop-out when it was suggested on the post-consultation report. Almost like a “we couldn’t help you surgically, so try some homeopathy or yoga.” But looking into it further, it’s worth a shot considering we’ve exhausted every other avenue.

I guess the worst aspect of living with this/these health condition(s) is the absolute loneliness that comes with having to live with it. Of course I am incredibly blessed and lucky to have such supportive parents and family, as well as exceptional friends who have stood by my side since the day I was first hospitalised. Ultimately, however, having to live with ongoing pain and knowing there’s no real cure out there for me now is the worst thing. Realising that I’ve been through so much pain, horrid health relapses and symptoms, only to be told I should ‘go herbal.’ It’s awfully lonely; having to summon up the courage to say “okay Anisah, you’ve been through this before, you can get through this now.” Accepting that pain is a part of my life I just have to live with. When I have to leave a room, or take a break from work, or even duck to the loos when out with friends, I have to pray and beg that whatever’s causing my abdomen grief will just go away. “You just have to ride it out” is infuriating to hear; why me? After everything, why am I still suffering? Will it ever go away?

It sounds terribly despondent, I know, but I guess the lonely aspect of a health condition is something I’ve not touched on before, yet is imperative to consider nevertheless. It interlinks strongly with your psychological state of mind too, almost like a vicious circle. When I experience physical pain, my anxiety levels increase and I panic a little. As a result of living with these health issues, I’m prone to periods of feeling low and anxious for the future. I’m desperately hoping that a holistic approach helps me physically and mentally, because I am drained in both senses!

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” – Kahlil Gibran

A x

Thank you, Brandon

Current Affairs

I’ve been following the Humans of New York (HONY) page on Facebook for a couple of years now and I’m still astounded everyday by the stories of strength, survival and resilience around the world. Recently, the founder of HONY and photographer, Brandon, has produced a series on paediatric cancer patients in New York, documenting the lives of cancer sufferers from the perspective of parents and patients.

All around the world and through social media we hear stories of cancer sufferers and their plight against the disease. So much so that the term ‘cancer’ is almost considered to be a taboo; whenever we hear the word we associate it with a death sentence. But what strikes me about these individual stories is the strength of the children who suffer with the disease on a daily basis, and their attitude towards it being nothing but positive. With their childhood almost robbed, they persevere with the determination to fight. Most of them don’t realise they’re sick, they consider themselves to be just the same as other children and that is what’s remarkable about these stories. It makes everything we complain about on a daily basis seem so mundane and minuscule in comparison to the sickness these young children fight everyday.

They’re an inspiration to us all. They show us that life isn’t too short at all, it’s too unpredictable to have a negative attitude towards. We ought to celebrate the good health we have and make the most of what life has to offer us. But we also ought to give the parents credit – those who remain as strong as they possibly can be for their children, because that in itself can only be debilitating, both emotionally and physically.

So thank you, Brandon, for making us realise how precious life is when you’re healthy. It’s something we take for granted all too easily. In the day-to-day rush of working or studying, we forget to appreciate what really matters. Our health, our families and each other. Thank you for giving these remarkable fighters a voice. They are the epitome of bravery. And they renew our faith in the health professionals who save lives everyday with their tireless efforts, as well as with God in His power to heal.

I urge as many of you as possible to donate money towards the MSK cancer centre and other charities; more money for these centres means more research facilities and a higher likelihood of finding cures for the devastating diseases.

And lastly, Brandon, we cannot commend you enough for all you do worldwide, from the refugee crisis in Syria to humanitarian crisis victims to cancer patients.

Brandon’s HONY blog: http://www.humansofnewyork.com

Donation page for the MSK Cancer Centre: https://www.generosity.com/community-fundraising/let-s-help-dr-o-reilly-fight-pediatric-cancer

A x

Featured image: Stanton’s book cover ‘Humans of New York’ on amazon

HEALTH UPDATE: MAY 2016

Life Updates

The waiting game.

It appears I spend most of my time waiting for things to happen; currently, I’m waiting to be seen by a specialist in the field of Sphincter of Oddi Dysfunction at Harley Street. Sadly, the NHS route proved to be an absolute disaster; I spent two months waiting for the appointment to come through to see a consultant who had an “interest” in the field of SOD at a tertiary centre hospital, only for him to tell me there was nothing he could do about my condition due to a substantial “lack of evidence” excluding my pain. It’s safe to say that I was livid after that appointment. His reluctance to do anything about my condition pretty much summed up why I have no faith in doctors – for over a year and a half, my condition has worsened yet they seem to intentionally brush over my three year-long suffering.

Sphincter of Oddi Dysfunction is a tricky little condition; for one, the Sphincter muscle in my bile duct is so tiny that the best way to assess whether it’s working properly (or not, in my case) is to go inside and undergo a procedure. The problem is this procedure carries the risk of inducing pancreatitis; having already suffered a bout of it two years ago, I’m not too keen to risk any chances of having it again because the pain is horrendous. Pancreatitis also runs the risk of inflicting life-long damage onto the pancreas, creating furthermore health problems. However, having exhausted many medicinal routes to tackle to pain I’m in daily with SOD, I’m running out of patience and options. Being bombarded with pain relief doesn’t solve the issue and it appears the doctors I’ve seen are almost reluctant to cure it, opting for a safer, non-invasive method of treating the symptoms.

Another problem is the relapses. Whilst I was away, I suffered from an episode of severe pain which landed me in hospital – not ideal when you’re in another country. The relapses occur almost every other month, drastically impacting my life with its unpredictability. Doctors perhaps perceive my desperation for medical intervention as just another kid who comes in with pain in their stomach. They don’t realise how badly this condition has ruined my life for the past three years. They can’t imagine being in pain for a solid 18 months because they’ve never been there.

I know it’s wrong to desperately hope for something when I’ve already been disappointed so many times before, but I sincerely hope this consultant will give me some answers this time. If not surgical intervention then at least another option to consider would be preferable. Being written off has destroyed me, physically and emotionally.

So, hopefully, in ten days I may just get some answers!

A x