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