I was right: post surgery and assorted ramblings.

Hey everyone, thought I’d check back in and explain a bit more about what happened on Tuesday.

I had been so incredibly upset and nervous before going into the hospital that I had worked myself into an almost panic attack state, and was absolutely shaking by the time I got to see the nurse who would be minding me in the ward. Her name was Sylvia. She was lovely: she understood my fear and my nerves, and actually got me some painkillers (paracetamol) to take the edge off my pain, and found me an anti-anxiety tablet to try and help me feel calmer. That thing worked like a charm! It took a little while to kick in, but it really helped. By the time I had been put into my bed, she had talked to both me and the Dutchman extensively and told us what to expect, and found me a warm blanket to snuggle up in. She draped it round my shoulders like a cloak and I snuggled into the heat. It had clearly come off a heating rack or out of an airing cupboard: it was so warm and so nice that I stopped shaking almost instantly.

Next came the process of checking that I knew what operation I had been scheduled for, asking my name and date of birth, scanning my bracelet to make sure I had taken the medication they’d given me, and then some waiting whilst snuggled up in bed. The Dutchman was right there every step of the way, holding my hand, supporting all of us as we waited for the inevitable. We were already feeling less frightened, thanks to the pill, but it helps when your six foot odd husband is holding your hand, stroking your hair and telling you that everything will be ok.

We had been having awful flashbacks to the first laparoscopy in the UK. The way we all felt: treated like a nuisance, a piece of meat. Forced to walk down the hallway in crippling pain without any help and no chance of a wheelchair, or being pushed in on a bed. The callous way the surgeon talked to us and the way that some of the medical staff seemed to look down on us for just being there. There was nobody to help, nobody with us, and no answer at the end of it all.

The contrast could not have been stronger.

The nurses and medical staff were kind and gentle when the time came to wheel me into the pre-operating room. I had one very nice nurse stroking my hair and helping me feel less scared. They fitted the Dutchman up with a weird boiler suit thingy that made us giggle and refer to Friday the 13th: both of us had to wear weird shower caps to keep our hair out of the operating theatre. The boiler suit was so that he could come with us into the theatre, so we wouldn’t be alone. That was a huge relief: I personally didn’t want to go under anaesthetic without him there.

The Dutchman explained to all the medical staff how frightening this was for me and how I needed to have him there to help translate, and the staff were so kind and understanding. They spoke to me both in English and Dutch, but I was so scared, I couldn’t say much at all. The nice nurse who stroked my hair also fitted me with a heart monitor, made sure I knew what procedure I was in for, and gave me a blood pressure cuff too. She and the Dutchman both wheeled me into theatre.

At this point, I was really frightened, but I needn’t have worried. The anaesthesiologists were all very kind and super lovely, and having my husband there helped so much. Even the guy who put the needle in my arm to begin putting the anaesthesia in was really funny and gentle with me. I also got to ask questions about the coil: I’d been repeatedly asked by my usual doctor to have one in and I’d not really wanted to take the risk, but at this point, I was desperate for some sort of pain relief. He was very kind and explained that in six weeks time, if the coil was not behaving, it could easily be taken out. Usually, however, it helps women with endometriosis to have a much less painful life.

It was at that point, when he said that it will help to suppress my endometriosis, that I started to wonder if I was still right and that they would find something. I fell asleep after telling the Dutchman that I loved him with a spark of hope in my heart.

An hour later, he was there again, holding my hand and asking me to come around. The surgeon and his assistant were coming to tell me my results. I hurt everywhere and began to realise that this time, something was different.

“Well,” said the Dutchman, “I think it’s good news.”

He was right.

My surgeon told me that I had mild endometriosis, which they had burnt off my organs, and they’d fitted the coil. He let me see the photos of the weird black blobs sticking to my insides, and it was genuinely the hugest relief to see them outlined against my pink innards. I asked to hug him at that point, and tearfully explained my two year struggle to get anywhere with this whole situation.

I spent the rest of the time recouperating, with the Dutchman holding my hand and telling me how proud he was of me. Clara popped out at one point to gloat that she knew that we were right all along, the cheeky monkey! It was nice to see her so calm and happy and not frightened of the hospital, the sterile smells, the gown we had to wear… She took it all in her stride. Nineteen came out to gloat too and to apologise for not having hope. The Dutchman wouldn’t let her.

I was able to eat and keep down an ice lolly for my sore throat, and a couple of turkey sandwiches. The lady who took over from Sylvia was also absolutely lovely, and she took great pains to ensure I understood the instructions left by the aftercare team… And to wish me a speedy recovery!

Other things to note were the fact that when we came round from the anaesthetic, we spoke fluent Dutch (cracking everyone up), managed to be able to walk gently to the bathroom and back, faced up to our fears about the surgeon not finding anything, and, FINALLY, having all the confirmation that we were right about endometriosis from day one. All that way back, two years ago in the gym, gasping in agony upon feeling something pop inside of us.

We are achey and tired, feeling very sleepy now but cheerful for the first time in a long while. A huge, colossal weight has vanished from our shoulders and after two years, we can finally start to rebuild a life that’s been on hold for so long. Hope is both a powerful and a destructive thing, but this time, it’s just empowering. It’s a sad thing to be so happy about, but after two years of people gaslighting us and making us feel like we’re complaining over nothing… There’s a fair amount to celebrate.

Lots of love from the whole system, anda very relieved and grateful 28 xxx

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I. Was. Right.

Guys: I have endometriosis. Early stage, but I have it and I WAS RIGHT.

FUCK each and every single doctor who made me feel crazy for saying that I was in pain.

I hugged my surgeon when I woke up, I was so relieved. The staff have been so incredibly kind to me and I feel safe in their hands.

Now to forge on and make sure that I look after myself. It’s been a wild ride.

News!

So my blood tests have come back…

I’ve been fighting glandular fever (mononucleosis) for a while now and I didn’t even know it. The test showed that it was no longer rampaging around my system and causing me to deteriorate, and that my antibodies are busy clearing the infection out. However, from what I know of glandular fever/mononucleosis, it’s stubborn and likes to leave you feeling bleurgh for a while after it’s no longer active.

In the meantime, I’ll be making sure to keep resting and I’ll start upping my vitamin and mineral intake (doc said so, so I shall). Thank GODS I finally have an answer to one piece of the horrendous puzzle of my health.

I’m taking this as a good omen and praying that the next part of the puzzle gets revealed to me soon.

Too far gone for hope?

I’m starting to feel like we should give up hoping that someone is going to help with our pain, fatigue, nausea, dizziness and heart issues.

I swear every time we get our hopes up, something comes along and destroys it flat. I am so tired of it all. We’re all tired of it.

Another set of blood tests have been sent off and we’re waiting for the results. We’re tired and want to sleep all day, pretty much every day.

We’ve been faking being ok recently so that we won’t upset our wonderful Dutchman, but he knows now how bad it is and is trying to help. We’re scared of burning him out.

What is left, genuinely, when your life is dictated by your illness and there’s nothing you can do about it?