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