Endometriosis · Surgery

Things No One Tells You About Recovery

I’m just over 1 week post-op from an emergency operation that whilst it wasn’t specifically for my Endometriosis, it was a similar style of surgery.  And things really suck.

The vast majority of people with Endometriosis will have undergone at least one operation in their life-time, so will have experienced similar to me (of course, there are the handful of Endo Sisters who are unable to have surgery for whatever reason – so no judging!), and will know that laparoscopies are not as simple as they make them out to be. 

Of course, everyone heals different and every operation is different.  Some laparoscopies I’ve had involved more incisions than others, bigger incisions than others and were longer than others (seemingly longer and longer with each one…).  But I’ve noticed that with each one I’ve had, the recovery is longer, harder and more complicated.

First of all – no one really chooses to have surgery, even if it’s the only way to get answers, it’s not something we are chomping at the bit for.   However, with each one I’ve just known that having another operation was the right thing to do.  I’ve said it before and I’ll say it again – no one knows your body better than you, and I’ve proven consultants wrong.   

So you’d think that after my 4th gynae surgery, I’d know what I’m letting myself in for, right?  Ha.  Wrong, so wrong.  It’s almost like my body and my brain completely forgot the trauma that I went through.   Well, here I am 4th time round to give you the heads up…

  1. Surgery is not a “one-size-fits-all” approach.  Nope.  This means that everybody’s surgery time, recovery time and feelings will be different.  So, take everything as it comes for you – do what is best for your body and don’t get too caught up listening to other peoples stories.
  2. Prepare for a long ol’ wait until you physically go down to theatre.  Seriously, if I didn’t work in healthcare then the 7 + hour wait I’ve had on two occassions would have just about finished me off. 
  3. Oh, and whilst we’re on this note, REMEMBER – theatre lists are run in a specific order (e.g. latex allergy patients have to go first), surgery may take longer for some people and delay things and emergencies happen.  Sometimes surgery is cancelled, but it’s always for a proper reason and if you are reading this and living in the UK, most NHS hospitals have to offer you another date within 28 days and are then not really allowed to cancel you again 🙂
  4. Recovery isn’t really all-that “recovering” (or at least in my opinion!).  My first laparoscopy was a day case (purely as the hospital I had it done in didn’t have an overnight ward) and it felt like there was such a rush to get you out and back to the day ward or “day surgery waiting area” (yes, it is sometimes just a comfy chair!).  My other surgeries were planned inpatient stays, but each there was still a rush.  My most recent surgery being the worst – I was in pure agony, couldn’t see (no one ever explained why the first hour was blurred) and was nauseous, yet because I had been a late and longer op, the staff were getting all huffy and puffy about having to stay later than their planned shift.  In the end, I asked to go back to the ward because I couldn’t take their signs any more!
  5. There will be pain.  Expect it and prepare for it.  Before you go home, make sure you have enough pain relief that actually works for you and if you don’t feel able to go home because the pain isn’t managed in hospital – speak up!
  6. No one can really tell you how long the post-op pain will last for.  I’ve had a complete spectrum of experience throughout all 10/11 of my operations (not all gynae ones!).  The best advice I can give is to stay on top of your pain relief (you can read more about pain and pain management in one my previous articles) and make sure you seek help if things are not managed.
  7. Rest is more important that you might ever realise.  Why?  Because so many people – healthcare professionals included – will tell you to get back to normal activities ASAP that no wonder we find ourselves completely exhausted and in pain when we should be feeling better.  After my first operation, I had to go back to bed after a 2 hour phone conversation as that activity and concentration just drained me.  Listen to your body – it’ll tell you what it needs.
  8. Wound care will vary so much it’s almost ridiculous.  I’ve never heard the same thing twice or even had the same materials used on me twice throughout my operations, despite being operated on at the same NHS hospitals.  You have to listen to what your consultant/surgeon tells you.  But here are some tips; sutures/stitches are more than likely to be absorbable (and yes, this can take days to weeks to even months), don’t touch an exposed or uncovered wound, don’t get it sodden until all scabs have fallen off and leave any dressings alone until advised to remove (even then, you ideally want a healthcare professional to remove them in a sterile environment).  If you spot any signs or symptoms of infection (angry-looking redness, acute and local swelling, pain increase, fever/feeling unwell, leaking pus etc) then seek help ASAP
  9. The amount of time you may need off work will depend on your job, what you do in your job and your consultants/surgeons advice.  If you’re getting to the end of your sick note and are not ready to get back to work, that’s completely fine – just make sure you see your GP so that it can be extended.  
  10. Despite having surgery, you may not get the answers you wanted or even any answers at all, and if this happens, it is devastating and disappointing, but you can get a second opinion.  I’ve had this experience many times throughout my bid to get a diagnosis, and it’s a hard one to explain to others – of course you don’t want anything to be wrong, but you do want answers.  

At the end of the day, even though surgery is scary and likely to be tough, listening to your body is the best thing to do.  That and making sure you focus on yourself rather than other peoples stories or experiences.  And although I felt completely and utterly unprepared for my first operation, its amazing what your body can remember if and when you have to do it all over again. 

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