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