endometriosisawareness

MY ENDOMETRIOSIS STORY PART 4 – REALITY

Endometriosis

It’s taken me nearly 2 years to write again, and even now I’m so uncertain about how I want to approach this piece.

My last post was disheartening to read. The inevitability of the endometriosis coming back with a vengeance was hard to accept, and my future looked so uncertain. At this point, I can honestly say that my future has never been more uncertain. Unfortunately, with the severity of my endometriosis coming back, so have the hospital admissions. In the last two months alone, I was hospitalised three times, two of which required admission onto a gynaecology ward in two different hospitals. I never thought my condition could get as bad as it was before I was diagnosed in 2020, but as luck would have it, I’m in the worst position I have ever been in with this disease, and this is truly the worst pain I’ve ever felt in my life. 3 months of consistent pain, 10/10 in its severity, has taken its toll.

I’m so incredibly lucky to be under the care of an incredible endometriosis clinic at a hospital in London, and I want to start by saying that before anything else. Because it was an NHS referral, it took 5 months to get an appointment but when the initial appointment came through, the consultant took an extensive history of my condition, and did an immediate TVS (trans-vaginal ultrasound). I’ve had so many scans over the last 12 years that I wasn’t phased by another one, and was actually glad they were so quick with doing one in the appointment. In the TVS, they found an endometrioma on my right ovary (a cyst filled with menstrual blood that’s a common sign of endometriosis, also referred to as a “chocolate cyst”), along with some deep penetrating endometriosis, as well as adhesions around my bowel caused by the endometriosis. They also found that my right ovary was tethered to both my pelvic wall, and the side of my uterus, essentially meaning that my entire right side of my womb is stuck together. There was also a hemorrhagic (functioning) cyst found on my left ovary, but out of everything that came up on my scan, ironically that was the least concerning. I knew the endometriosis had come back so this wasn’t exactly surprising to me. It didn’t make it any less painful to hear, however. The only option after 2 laparoscopies not tried in managing my endometriosis was progesterone, the word I’d been dreading. Progesterone treatment had been recommended to me before, but I’m so hyper-sensitive to hormone therapy, and also have the Mirena coil, so the idea of more hormone therapy was terrifying. I’d previously looked into the side effects of progesterone treatment and it wasn’t pleasant. I’ve tried hormone therapy before that didn’t involve progesterone: before my first endometriosis surgery in 2020, I was tried on the Zoladex injection but had to give up after a month because of my mental health deteriorating to an all time low (https://anisahhamid.com/2021/02/05/my-zoladex-experience/). However, I was getting desperate at this point and was willing to try anything since I knew my situation was getting worse.

Unfortunately, the specific progesterone treatment I was put on didn’t work at all. In fact, I ended up in hospital three times whilst on the treatment, so it was clear that it wasn’t working for me. During one of the hospitalisations, I was incredibly lucky that the lead consultant of the clinic I am currently undergoing treatment with was working on-call in the gynaecology department that night, so she did another TVS to examine if the endometriosis had spread further, and to also rule out any ruptured cysts. They instead found I also had adenomyosis, which is slightly different to endometriosis.

Source: https://www.instagram.com/the__endo__space/p/CntVNOnPowf/

Following my third hospital admission, I was put on a different progesterone pill called Provera, with the initial dosage of 30mg (3 tablets a day). The on-call gynaecologist who came to see me the morning after I was admitted onto the ward described the Provera tablet as essentially tricking my body into thinking I am pregnant, which in turn should limit the growth/spread of endometriosis in my body and prevent any future flare-ups of pain. My main concern was the mental health consequences, of which another gynaecologist thankfully was very honest with me, and told me to come off the progesterone straight away if my mental health deteriorated to the point of being unbearable. I’ve always been adamant that I never want to compromise my mental health for my physical health. It’s a compromise that should never have to be made by women anyway when it comes to their health, and my mental health is just as important to look after as my physical health. Unfortunately, I was so desperate for a treatment to work that I did eventually end up sacrificing my mental wellbeing whilst being on the progesterone treatment. The side effects were brutal – morning sickness, fever symptoms, hot flushes which drenched my entire body in sweat, fatigue, brain fog, memory issues just to name a few. I also for the first time in my life, really experienced depression whilst my body was getting used to the progesterone. I know that this was a side effect of the pill but having been lucky in life to never have suffered from depression, my brain went into a state of shock. I truly hit rock bottom, and had never felt so low in my life. I didn’t think I could survive the feeling of being so down, without hope for the future and miserable at my prospects. Being in constant agonising pain all day everyday definitely exacerbated the feelings of depression, so it was a vicious cycle. I felt like I was drowning and I’d never come up for air again.

Thankfully, my GP realised I was suffering with the progesterone, and she decided to reduce my dosage to 20mg to help ease some of the side effects. I noticed an almost immediate difference in myself afterwards, and I’m so grateful that she listened to my concerns because that situation was truly untenable. Because my mental health was deteriorating so rapidly, my GP also made a decision I would normally have fought against: she put me on a low dose of anti-depressant. Initially, I was adamant that I didn’t want to be on a medication that would control my moods, emotions and feelings. I was scared that the anti-depressant would control me. However, the emotional turmoil of being in pain all the time, and being in the worst pain of my life, meant that I was struggling on all fronts and I needed a bit of help sorting through those emotions. I’ve found that it’s so easy to fall into a spiral of thinking “why is this happening to me?”, “what have I done to deserve this pain?”, “how much longer can I cope with this condition?” and “why have I been so unlucky with my health for so long?” Those thoughts eventually consume you until you creep closer and closer into the darkness, and the one tablet of anti-depressant has honestly helped me through those spirals. Now, I have a clearer head when it comes to my attitude towards my endometriosis and I don’t fall into the depths of those dark spirals. Don’t get me wrong, I’m still so far from myself and who I was – my mental health is at an all time low, and there are days when I can barely bring myself to get out of bed and face the morning. I’m struggling with the reality of my endometriosis coming back and being worse than it ever has been, and some days I don’t want to talk to anyone, even my parents. But the anti-depressant helps push me out of these moments, and I suppose stop them from getting any worse, which I am grateful for. The first two weeks of starting the anti-depressant however were the worst two weeks of my life – your brain essentially suffers a chemical imbalance and my moods were truly all over the place. It took two weeks for my body and brain to get used to the pill, and it was horrifically tough to get through. But, I knew it would be worth it for the end result.

Managing severe pain with painkillers has been a struggle of its own. For at least the last 4 years, if not more, I’ve been told to take anti-inflammatory drugs before I take any stronger opioid pain killers due to the potential for addiction, of which I am well aware. This extends to taking ibuprofen, and then later mefenamic acid (4 doses a day), diclofenac (3 doses a day) and most recently, naproxen (2 doses a day). What health professionals don’t tell you is that long term use of non-steroidal anti-inflammatory drugs (NSAIDs) will affect your stomach. Around the time that I started the Provera progesterone treatment, I noticed that I was having severe upper abdominal pain as soon as I ate food, almost within seconds of my first couple of bites of food. I was told it could be indigestion or dyspepsia, a side effect of progesterone treatment. I was prescribed some omeprazole which works to block acid in the stomach to help with the pain. Unfortunately, the pain only got worse and worse, to the point where I would be doubled over in agony after each meal, writhing around. The upper abdominal pain became worse than my pelvic pain, which is when I became concerned. I was referred for an endoscopy to investigate if there was anything going on in my stomach, to find that I’d actually had a stomach ulcer this whole time, as well as something called erosive gastritis. My stomach lining was eroding away and a hole was being burnt into it because of the NSAIDs I was on. It’s really hard not to feel completely let down by the healthcare system when something that could have been so easily avoided happens, as well as it being another condition I have to deal with on top of a disease that I’m fighting for my life to live with. It seems like people in healthcare are so concerned about prescribing stronger pain killers to manage acute pain, that they’d rather risk a 28 year old getting a stomach ulcer, despite the fact that I’ve shown myself to be the most sensible when it comes to my pain management. Thankfully, I am on medication for the stomach ulcer and feel so much better after starting it, so fingers crossed it resolves itself soon.

Being dealt blow after blow takes its toll when living with an incurable disease. The reality of my situation has been tough to accept, and I’ve spent so many years pretending, putting on a brave face and smiling through agonising turmoil. The reality is, endometriosis is a horrific condition. People very rarely take it seriously unless they’re specialists within the field, they don’t believe the pain you’re in, and they treat it like period pain. 5 organs in my pelvis had to be operated on to remove diseased tissue, and people still struggle to believe me. It’s even harder coming to terms with the knowledge that I’ve exhausted every avenue of treatment available now, at the cost of my mental wellbeing. I can’t stay on the Provera treatment for more than a couple of months, as the risks are severe and higher than other treatments. Which leaves the inevitability of surgery, which would make this my third laparoscopy to treat endometriosis. It’s overwhelming, and it’s incredibly sad. It’s exhausting. I’m exhausted, I’ve been fighting my body for so long, that I really am running out of fight. I have a follow up appointment next week, of which most of it is going to be spent telling the consultant about how awful my life has been over the last 3 months.

The hidden torment of this disease isn’t just physical – it’s psychological too. We’re fighting our bodies every day, every night, and then putting ourselves back together again so we can show up for our family, our friends, our workplace. I so desperately wish I could say that it gets better, but right now I really am in the worst situation of my life. I just hope to God that the next time I write on here, it’s more positive. Because the reality of endometriosis fucking sucks.

A x

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

Endometriosis

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

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

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

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

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

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

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

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

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

A x

My Endometriosis Story Part 2: Damage Control

Endometriosis

Endometriosis is an incredibly tough subject and dense with trauma for me. The disease is incurable and the symptoms are unbearable – if I’m not talking about it, I’m still thinking about it and it’s taken such an unfathomably drastic hold over every single aspect of my life that I tend to procrastinate talking about any aspect of it on a public platform. That being said, it’s time to talk about my most recent operation in May this year – the second surgery I’ve undergone to treat my aggressive form of the disease.

During my first consultation with my surgeon earlier this year, we came up with a variety of treatment plans to combat the pain I was experiencing and we both came to the conclusion that surgery was the only way to find out how much the endometriosis had spread since my first operation which I had done on the NHS. I was introduced to the possibility I could also be suffering from diaphragmatic endometriosis – where the diseased tissue can spread to the layer of muscle and tissue positioned just below the lungs, at the top of the abdomen. My symptoms, not generally associated with pelvic endometriosis, immediately rang alarm bells for my surgeon and he pieced together the very high probability that the diseased tissue had spread to my diaphragm. I wanted to draw significant attention to my pain symptoms in this post because I was previously told by at least three different consultants on the NHS that my upper abdominal pain was nothing to do with my pelvis and they couldn’t have been more wrong; but they also completely dismissed my pelvic endometriosis in the first place too. Every single person is unique in how their body reacts to this disease and I know not everyone will experience what I have (similarly, I’m aware there are a lot more symptoms I haven’t listed that other women have suffered from). Nevertheless, had I come across a list even vaguely like my own when I was at the height of my flare-ups, things might have been very different a lot earlier on in my diagnosis period. At the very least, I hope this list can provide some comfort to others in a similar position – you’re not on your own, and your gut feelings of concern are valid. Act on them.

  • My pelvic endometriosis symptoms:
    • Lower pelvic cramps (similar to period pains but excruciating, stabbing-like cramps)
    • Stomach cramps and unsettled stomach
    • Pain travelling down my legs (predominately my right leg)
    • Lower back pain
    • Fever-like symptoms
    • Fatigue (I mean, extreme exhaustion)
    • Bloating
  • My diaphragmatic endometriosis symptoms:
    • Shoulder pain (predominately right side)
    • Arm pain
    • Severe upper abdominal pain (right side)
    • Chest pain (can sometimes also be indicative of thoracic endometriosis)

Come April this year, it was time to explore what was going on inside me. My gynaecological surgeon operated on my pelvis whilst a hepatobiliary surgeon explored my diaphragm. The operation itself took around four hours, and my surgeon decided to replace my mirena coil with a new one since he needed to remove the coil already in there from my previous surgery in order to operate. Diseased tissue was found in and all around my uterus, bowel, bladder and kidney. The endometriosis had also spread to the diaphragm as my surgeon initially suspected – a number of lesions of various sizes were found scattered around the area. When I was in better shape post-op, my surgeon came in to check on me and talked me through what he found. He showed me a picture of a endometriosis-free uterus, with the healthy tissue it’s normal pink colour. He then compared that picture to footage of what they found in my uterus – my womb was black with diseased tissue and the endometriosis had spread like wildfire. So much so, he needed to cut out chunks of my pelvis to ensure the disease couldn’t grow back again in the future. Even in my heavily medicated state, I couldn’t believe just how bad of a condition my body was in – it’s baffling that I was able to hold down a full-time job and go about my daily life all the while living with such an aggressive form of this disease.

I’ve seen a lot of people talking about their recovery periods post-endometriosis surgery on social media, so I cannot stress this enough – everyone recovers at different rates. Some people are incredibly lucky – it can take from 2 to 8 weeks to recover from the operation itself, but full recovery usually takes around 6 months. I recently saw a social media influencer talk about how quickly she recovered from her surgery after 3 weeks; it’s taken me 7 months to fully recover from my operation. Each surgery is different – some operations are extensive, some are straight forward so don’t require very long recovery times. Everyone has different time frames with their recovery periods but your body is in control of how quickly you get back to normal – they should never be rushed. Major, traumatic surgery on your womb is not something to be taken lightly, and making peace with the fact that I was not in control over how quickly I recovered made the entire process a lot more bearable. I allowed myself to rest, eat as much food as I wanted, sleep as often as I needed to and it did me a world of good. However, I wasn’t as strict with myself as I should’ve been and that’s something I could only learn the hard way.

I chose to go back to work 5 weeks post-op as I was no longer in any kind of severe pain, and I back on my feet again. I could go for walks in the park and I was becoming restless so I figured it was time for me to get back to some kind of routine again. The first day back at work was the hardest – I could literally feel the inflamed tissue being pulled on as I walked (my daily commute alone is 1 hour door-to-door and includes changing trains twice). I had to take regular breaks to allow my body the chance to catch up slowly, but it felt good to be back in a different environment, seeing people again and being around my friends. It also allowed me to focus on anything but my surgery and post-op pain; the distraction was welcomed at the time.

A few weeks into my return to work, I ended up back in a&e with post-op pain. This happened quite a few times throughout the following weeks, strongly indicative that my body perhaps wasn’t coping to being back at work full-time after all. My manager decided to reduce my hours and I gradually increased my hours back up month by month, depending on if my body was able to catch up until I was ready to be back full-time again. I’m incredibly grateful and undoubtedly lucky for this opportunity, as it’s clear now that I wasn’t actually ready to come back to work after only 5 weeks off. I was nervous about admitting to my manager that I wasn’t coping being back on my feet again five days a week, worried about the implications this would have. I saw my delayed recovery as a weakness, a sign of being unreliable when in actual fact, I’d just had major surgery on five organs in my body and that is no small feat! As soon as I sat down with him and told him what was going on, the relief I felt was undeniable – a weight had been lifted off my shoulders and I kicked myself for not being honest with both him and myself from the beginning. Trying to be a trooper and soldiering on through post-operative pain is both stupid and incredibly reckless on my behalf, as it prolonged my recovery and caused not only further pain for myself, but inconvenience in my workplace. I am aware that I’m one of the lucky ones – the support I received from my manager and the company during this time was something not a lot of people are blessed with. They were there for me when I needed them the most, and I’m in an incredibly privileged position as I know that not all workplaces are as accommodating for taking time off on health grounds. My point is, had I not concerned myself so much about letting my work team down by coming back to work early, I could have avoided the unnecessary stress and pain that ensued when I ended up back in a&e multiple times the following month. It is so important to listen to your body and give yourself as much breathing space as possible during the weeks following an operation like this. Even if you think you’re recovered, give yourself a little extra time for leeway because you can never be too careful. I know it’s not always possible in every workplace to ask for extended time off, but the ramifications of rushing post-op recovery are dangerous to say in the least.

I’m now coming up to 8 months post-op, and everyone has noticed how different I am since I had the surgery. Whilst I’m painfully aware that this disease hasn’t gone forever, and I won’t be cured of it definitively, most importantly my quality of life has returned. I’m happier and more active than I ever was before this operation. My surgeon is a wizard and quite possibly saved my life this year, so I owe him everything just for listening to me in the first place. That first consultation truly changed everything for me – I was taken seriously, my concerns were acknowledged and acted upon, and now I will be able to live my life as fully as I can for as long as possible until it grows back. The one thing I know I can take away from this is that I’m so glad I stuck to my guns and pushed for someone to take me seriously – I knew something was wrong inside my uterus, and I’m forever proud of myself for fighting for my body when no-one else did.

Don’t ever let health professionals dismiss your concerns – only you know what’s going on. After all, it’s your body: you know it best.

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