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