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!)


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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

TW: Pain, sadly

Holy mother.

Since deciding to stop the contraceptive pill, life has been interesting. Still the same palpitations sadly, but now it’s that time of the month…

14 and 15 remember this well. Forcing yourself into your school uniform, dragging yourself in, not having a clue what was said and being so far out of your own body because of the pain it felt like you floated.

We’re back here again.

The pain is so bad it makes us want to cry. We have our next hospital appointment on the 5th August, after much arguing and cajoling. Hoping very hard that we will be ok, and that 19 can whup ass- she usually does!

Endometriosis looks pretty likely now. All we need to do is get the doctors to think along the same lines as us.