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

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