Sunday, June 8, 2014

48 hours post-op


First off, I'd like to say that the bowel prep was nowhere near as bad as I had anticipated. I thought it was going to be like having gastro (think horrible cramping), but it honestly was just inconvenient, and as long as you follow the tips I found on this blog (like I did) it should be a pain free experience for you. Oh yeh, and if you can get your hands on pawpaw ointment instead of vaseline, do that. You won't regret it. I drank ridiculous amounts of hydralite and iced tea, and the picolax chilled didn't taste bad at all.

So on to the op... I ended up being in theatre for 3 hours and they found so much more than I was anticipating. I had a large endometrioma on my right ovary which was fused to my abdominal wall and had leaked (they were able to clean up a lot of it but not all as my body would not have been able to cope). There was also endo on the outside of my left ovary and on my ureter and in a few other places. Honestly, I was so shocked that I had an endometrioma it was hard for me to take in the rest. I'll update more on where they actually find it once I have a look at the surgery photos and notes again. 

They also did a pudendal nerve block which I am so thankful for. I think that it has reduced the amount of pain I am in by a lot, even if it means that at the moment I don't really know for sure when I need to urinate. However, as long as I just go every couple of hours, I'm ok (I eventually feel a lot of pressure and some pain when my bladder is full anyway).

They also botox-ed my side wall muscles and my pelvic floor muscles, which make it a little harder to urinate again, but if I take my time it's ok. It's SOO much better than feeling that urgency every five seconds. I also have a belly full of fluid to keep all my bits from sticking to each other while they heal. It is a very odd feeling and feels a bit like what I imagine being pregnant would feel like, but who knows, I've never been pregnant! It's like I have a sack in my belly that moves around of it's own free will and adds a big feeling of pressure when I stand up.

My surgeon said that  because the endo is so aggressive she wanted me to start on hormone drugs straight away to try and suppress more growth of endo. So I've started on Qlaira yesterday - it is a new kind of pill that apparently people who are sensitive to hormones (like me) have better experiences on. We'll see how it goes. If that doesn't work I may have to try Zoladex (or similar) or go back on the Mirena.

So now I'm on what feels like a thousand drugs - regular Panadol (painkiller, every 4-6 hours), Ponstan (anti-inflammatory, twice daily), Endep (for neuropathic pain, once a day), Qlaira (for suppresion of endo growth, once a day) and Endone (narcotic, for emergencies - I last took it yesterday afternoon and I hope to get through the rest of recovery without it, we'll see). If I take Endone I have to couple it with Coloxyl (laxative) which seems to work well to negate that effect. I'm also going to start taking krill oil again.

Good news is that my uterus and fallopian tubes look healthy. So that's a plus.

I'll keep you updated. Sorry that this is a bit of a brain dump - I try to make my posts as accessible as possible to people without a deep understanding of endometriosis but at the moment I am just too overwhelmed and just need to get it all down on paper.

2 comments:

  1. Hey Lib, after reading this I'm not sure if I should feel sad about all the stuff they found and have done to you or happy that they found it and were able to so some things to help. Either way, just know that I am feeling emotions for you. Also, I read that post you linked to re surgery prep and holy moly, it was hilarious. I appreciate when people can approach these things with a sense of humour :p hope you're healing well, xx

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    1. I love it when people can approach these things with a sense of humour too :). Reading that post made it so much less daunting to have to do the bowel prep. I'm so glad that I've got the internet to help me out with this stuff! Thanks for commenting - I never know who reads this anymore! :)

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