More than a decade of fighting for a diagnosis, and it’s safe to say my life has never been the same since getting it. A diagnosis didn’t fix much, other than it aided my mental health; I’ve said it before to finally have a name, a condition and medical practitioners believe you is one of the biggest wins for your mental health. But it doesn’t improve any of the physical side of things.
Surgery one (aged 20) everything was missed, surgery two (aged 27) finally provided me with a diagnosis and burnt endometriosis away, surgery three (aged 28) further diagnosed deep wide spread endometriosis and diagnosed diaphragmatic endometrisos. I left my third surgery, knowing a fourth surgery would be required in the near future.
If we rewind back to the start of the year, I promised myself that 2020 would be a surgery free year for me. Now I don’t know about anyone else, but it’s safe to say that my 2020 has not turned out as I had hoped or expected. As my quality of life is still slowly on the decline and chronic pain is ruling my day to day ability – I have spent the best part of this year researching my options, reaching out to other women and holding out for medical help due to Covid.
I have been actively trying to see a gynaecologist since before lockdown hit, and once it had hit – all plans were indefinitely on hold. I’ve spent a lot of time exploring VATs (video assisted thoracic surgery) and hitting many brick walls here in the UK. I realised that right now, surgery could be my only hope of escaping the downward slope I was continuously descending.
Finally a few weeks back I was confirmed a final follow up from my last surgery, which should have taken place in February. I wrote out everything I needed to discuss and patiently waited for my phone to ring. I explained everything as best as I could verbally and the Endometriosis specialist stopped me to say he could hear the emotion and pain in my voice. It wasn’t pain, it was passion – passion to stop or at least reduce the pain and continue to be me own advocate.
The call ended well, surgery number four was confirmed – and I cried happy tears and used the last of my spoons to dance around the living room. Right there is the essence of being chronically ill, nobody wants surgery, but the thought of a few moments relief is enough to make me the happiest girl ever. My surgeon will be operating via laparoscopy up into my diaphragm, from exploring my surgery notes they are confident that they should be able to excise the endometriosis successfully. Additionally, they are exploring whether a Plasmajet could be obtained to assist with the operation, and this is something I’d never heard of before but am super hopeful it can be used.
What will surgery four mean?
Well, typically if you have excision surgery for endometriosis the disease is removed with healthy surrounding tissue to ensure it has been taken out completely. In surgery three, this was not possible – firstly because no one had anticipated I would have Endometrisos on my diaphragm (other than me) and the surgeon spared my left ovary for fertility reasons by burning away the endometriosis present. At the time I was so thankful to have my organs spared, but right now, the pain is that bad and constant in my left ovary that I would do anything to make it stop. As the pains worsen, it only signifies the disease worsening.
This operation will re-explore everywhere, and excise endometriosis as required; additionally it will remove any organs that have already been too impacted by the illness. I’m prepared that on the one hand this could be my appendix and on the other hand it could mean the removal of my left ovary. Additionally, the main focus of the operation will be my diaphragm; currently I feel like I’ve shattered the bottom of my rib cage indefinitely and the pain radiates up and around my body. It impacts at times my ability to breathe or catch my breath, to swallow feed and drink (at times I can’t), to talk without becoming breathless, it gives the sensation of a panic attack looming as your chest tightens, I always have a dull cough because I always have to clear my throat and that’s without going into the horrible side of things. This is all caused by Endo, so hopefully removing it from my diaphragm will at least improve those symptoms.
There are huge risks associated with any surgery, laparoscopies for Endometriosis are already one of the most complex gynechological operations, and that’s without them going into the thoracic regions of the body. This surgery is a little more risky than those I’ve had before, it is so close to my lungs that one slip and they’re directly impacted. Along with other risks and complications, I see the pros far out weigh the cons and this surgery could be a life changing one for me.
As weird as it is to say, I’m so excited for surgery – even just to have that off button temporarily switched on and the mother of all pain relief to aid me. I’m excited for my body to be rid of the very thing that is slowly destroying it, and for it to truly get a chance to heal, I’m excited at what this could mean for me in six to twelve months down the line. I’m excited for my husband, for my family and friends – that they may fully get back the person that they love.
Endometriosis has no cure, it has limited options – and personally, I’ve had to just decline being induced into early medical menopause again … that was my only alternative to surgery. And I’ll pick surgery every single time, until my body tells me other wise.
Thanks for supporting me, I want to document as much of this journey as possible, so that other endo warriors know they’re not alone and maybe my experience can help.
Catch up soon.
Scouse Spoonie xox
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