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.

It’s been a very long time…

Well…

Time has absolutely flown by. We have moved to live in our own house with the Dutchman- it took a lot of work, but finally we live somewhere that we can call our own. We feel very safe in our new house. The Dutchman put a lock on our bedroom door, which has helped us feel calm and safe. We have control here, and it’s easy to let our guard down a bit and actually let the Dutchman take up some of the slack. He is very good at stopping us from overdoing it, pain wise. 

I can’t remember how much you guys know about our health, but we went to the colorectal specialist, who took one look at our symptoms and said we NEEDED a second gynaecological opinion. A GP from our old practice in the UK also said it was probably still endometriosis. Recently, 27 read an article about endometriosis which suggests that she’s been either lied to by the Doctor that performed her surgery, or that the Doctor was just not trained to look for endometriosis. Apparently, there are way more places that it can hide and if you’re not a specialist, you probably won’t know what to look for. Combine that with the fact that when we had our laparoscopy, the whole process literally took 20 minutes from being put under to waking up, plus the fact that there was a student in… Yeah. The picture ain’t pretty. 
27 finally has had the courage to admit that she needs help badly – our pain levels are pretty awful right now, and we have struggled to walk, nearly thrown up from the pain, had issues eating and sleeping because it’s been so bad, and finally, the last straw has been this week. I basically have had to watch her have absolutely no energy, be in a LOT of pain, struggle to bend down and fix her shoes because it hurts so much. We think she has another cyst. 

Our body hurts so much but she hurts more and we are all worried for her. Nineteen wrote most of this post, but I, 16, wrote the rest. We haven’t been around because we have been so busy, but we have also been caring for 27. She’s upset and hurting. If you guys who follow her have any advice for her, please drop us a comment. We have health insurance now, so hopefully we will get the care we need. 

We love you guys. Thank you for sticking around for the ride. Hopefully, the next bit of the journey will be less sad. 

Lots of love, sixteen and nineteen. X

(Have apology pups too!)


Chronic illness: Tiredness edition.

Hey all, it’s 19. I am tired.

I didn’t used to be tired. We were a bundle of energy back in May, happy to chase small children around, work out at the gym and throw ourselves into anything physical. Now, we struggle to get to midday without a nap.

 

That’s literally what I’ve just had us all do. I’m exhausted beyond mere sleepiness, so a nap has been had. Sadly, I am STILL tired, and more than a little upset by how much I am tired. I’m helping 26 battle constant pain, exhaustion and depression and I quite honestly have no idea why we are all so so exhausted. We are sleeping at night, and we are actually eating.

We are having to teach tonight and we really just need a break. Sadly, we can’t have one.

What do you guys out there do to escape the tiredness that is in your lives? We used to exercise but now we can’t, se we need advice.

 

Thanks for your support through this awful health rollercoaster. I’m agreeing with that Dr the other day- it’s probably Endo, and they probably saw the distended bowel first (maybe that’s got Endo on it) and though that was it. Sorry folks, it ain’t. The first doctor we saw back at the hospital has a suspicion that the cyst (the mammoth one) was an endometrioma. I mean, Jesus, we’re a fucking classic case. The Dr the other day on the phone to 26 says that she used to work with the doc who signed us up for the laparoscopy, and basically said that you don’t need to see the nodules for it to be endometriosis. We have an appointment booked with her to discuss our options.

 

The Dutchman is of the same opinion we are- get rushed off to hospital when we arrive in the Netherlands, and then we will see what they have to say in their wisdom. I’m not giving up yet.

 

Stay cool everyone, 19 x

News- this could still be endometriosis.

Hi all, 26 speaking.

Huge news- spoke to a doctor about my pain. She immediately thought it was Endo, even after the laparoscopy result, and has prescribed me new meds and wants to talk about treatment options at my next appointment. I’m crying in relief. I don’t think this is bowel pain, I never have. I bet they didn’t find Endo nodules when they operated cause they were in there for 30 mins.

Please gods let me have answers soon.

26 x

 

(PS- looks like the Dutchman and I may have a house! He’s signing mortgage papers tonight!)

Surgery: Endo or something else?

TW: I get real about periods, pain, hospitals and gynae stuff. Stay safe.

 

 

So I (26) basically am just here to tell you what has been happening.

So on Friday, we went to the medical appointment. Nineteen was her usual badass self and took us into the appointment, braved the waiting room and then the actual appointment.

She went in, sat down, and the doctor practically started asking questions as she sat down! He asked her whether she had pain all the time, where it was, if it hurt to have sex… She answered everything in her usual nineteen way, a little bit flippant but truthfully. She let him know when the pain started and that she had been having problems with awful pain and bleeding for most of her life.

He was calm and just got on with the facts. He asked her if she had had any children. We don’t count the miscarriage as having a child, because she was never born, so she said no. He also asked her if he could do an internal examination but she said no, on behalf of all of us, cause we do that thing where we agree to it them freak out later. She decided it was better to keep us safe.

He was fine with that and then basically told us we were going to have a laparoscopy. I absolutely melted. I was so incredibly relieved! Nineteen kept her head and asked various questions, such as whether not having an internal exam now would cause problems and what would happen. The doctor explained that he could do th exam whilst we were under anaesthetic (a huge relief!) and that he would check to see what was wrong.

He thought it was probably one of three things- one, a chronic appendix, two, a twisted ovary (they can untwist it during surgery but if it’s dead, it has to go) or endometriosis.

Today, I rang the Endometriosis UK helpline to ask them some of my questions, such as will the heart stuff stop us from getting surgery? The lady on the helpline didn’t think so, but she did think that I should ask the hospital that. She reassured me that an anaesthetic is actually a fairly pleasant experience, and isn’t as scary as we thought. One minute you’re talking to someone, the next, you’re awake and in a different room. She explained that there might be some pain in our shoulder blades from the gas, and that they will write a report on their findings. I was encouraged to get a copy of that report- apparently it’s a right and we should be able to get copies of whatever we request fairly easily.

All that remains now is to stay calm and wait for the surgery. I have a list of things to ask but I’m pleased that we will finally have answers.

Massive thanks are due to the Dutchman, lovely as always, and to the friends and family who always keep us floating. Puppy, too, has been lovely. I also want to thank everyone who keeps on reading, commenting or liking the posts I upload- you guys are amazing.

 

The consultant thinks it’s endometriosis. Yet another huge diagnosis that may or may not be right. However, in my personal experience, I’ve been right about PTSD, DID and Bipolar. I was right about my back not being fully better, right about the scar tissue there and right about needing further physio to fix it. I kind of hope in one way that I’m wrong this time, but I don’t think I am.

 

At any rate, here’s to answers after fifteen long years of awful periods, baffling times where there was pain but no bleeding, difficulty in having sex and, since May, non-stop pain. It will be a relief to know what the problem is.

Hospital Appointment news.

So, I took care of the hospital appointment today. The consultant was quite quick with us, and we have been referred for a laparoscopy. On the ninth of September.

 

I’m so proud of all of us. I (19) did the appointment, twenty six broke down and cried in relief at the end, and we have now got something that will give us a result (hopefully!).

 

I’m so so pleased about this. I’m so proud of us. I’m scared of the anaesthetic but I’m really hoping finally we get answers to all our pain.

Stay cool everyone,

 

19 x