Scan results.

Apparently, the MRI scan we had at the hospital showed an 8mm cyst with blood filling it. That may or may not be a problem, depending on what the reason for the cyst was. Sometimes that does happen, but the doctor also mentioned that endometriosis presents with chocolate cysts. 

We are exhausted. There was nothing else on the scan, but the hospital is busy trying to find an answer to my pain. They’re much less linear about things than the NHS was. They’re holding an endometriosis meeting on Monday, I think, and they will discuss my case and figure out where to go from here. I will be involved in decision making as well, they’re going to ring me and tell me what they want to do next.

I only remember receiving this level of care when I was a tiny child, in the UK. Since then, the NHS has been so stripped of funding that it doesn’t matter if you have cancer, you’re still put on a giant waiting list.

However… Not finding anything obvious on the MRI is just another blow to our confidence. We’re tired of getting no answers. We are very pleased to be living in the Netherlands, because none of this would be happening with the NHS. 

The Dutch healthcare system actually treats you like a person. When I (27) cried in an NHS appointment, they got exasperated and told me to calm down, there was nothing they could do, did I consider the pain being anxiety? Here, when I cried in yesterday’s appointment, the doctor understood that I was at the end of my rope and worn out from all the pain. Their attitude is completely different. 

The election results in the UK have upset us, too. A Tory/DUP coalition would force us to stay in the Netherlands. There would be no hope of going home because both parties are so anti-women, anti-gay, anti-europe that it would take many years for the UK to recover from the damage done by them. I am so not excited about Britain’s future.
We are holding on, but only just.
Love, 27 x

What happened yesterday…

So, if you saw yesterday’s post and were confused or concerned, let me explain what happened. Hospitals, doctors and internal exams get discussed so just stay safe, people.
Yesterday was a big day for us here. We finally had the time, since finishing the house, to sit down with the Dutchman and choose an insurance company. In the Netherlands, the insurance companies do treat pre-existing conditions and the prices are very reasonable. Not only that, but if you can’t afford to pay, the government pays for you. Once you get a good job, you then start paying what you can afford, and eventually once you earn enough money, you can pay your own way. It works really well as I am covered despite not having a job yet. The premiums are smaller than the ones I researched in the UK, and it seems to me that a lot of people who can’t pay for their insurance still don’t have to worry. The government in the Netherlands tries to make sure everyone has access to healthcare. Not only that… But oh, my actual god, the way things work here is just amazing.

Anyway, we went to the doctor yesterday, the Dutchman in tow, gently reminding us that we were ok and he had us and if there was any reason at all for us to be dismissed out of hand, he was there to fight with us. He never backs down, never gives up. He’s so steadfast. We saw the doctor without the customary ten-minute wait I’m used to, despite the appointment being at ten past nine. The doctor was short, bald, and wore those wonderful round-rimmed glasses that the older Dutch seem so fond of. His smile was kind and his handshake firm.

I ended up fronting yesterday. Nineteen thought it would be good for me to tackle one of my worst fears, and she was also there in the background, hovering, just waiting to explain why we needed help if I couldn’t explain. I needn’t have worried.

The doctor was kind, quiet, and asked questions in slow, precisely- spoken English. He immediately thought of endometriosis and did a simple test of his own to determine where my pain was. He tapped on my stomach and lower abdomen to check where I was sore, and I shot off the bed a couple of times. He apologised for my pain, but didn’t look surprised at his findings. It was almost like he expected to find pain in the areas he found it in.

Due to the Dutchman explaining that I have passed a sports massage course, so knew a lot about anatomy, he explained that as well as adhesions, endometriosis also leaves scars. That makes sense. I had a good friend of mine say that maybe the cyst left scars when it burst. He decided to refer me directly to the hospital and that they could investigate my pain: not just whether or not I had endometriosis, but the pain itself. I was overjoyed to realise that I had basically got through the first step without being told that I was malingering or faking. 

The Dutchman explained how much we used to physically be able to do, and how little we can actually do now. Listening to his beautifully accented Dutch, understanding it, I realised he was right. Our body has gone from being able to bench press and curl and pirouette and wrap its legs round its neck to this… A body which gives up after an hour walking round a shop somewhere. This level of fatigue isn’t normal, and the doctor accepted that readily. 

I don’t know about you, but that far in I was already making comparisons. The NHS consistently told me how I shouldn’t be complaining, I was only in a little bit of pain, and that I really couldn’t be that tired. Maybe I was exaggerating? Did I drink coffee before bed? All women have pelvic pain, get over it. Here, have more Tramadol and shut up.

I relayed all this to the Dutchman, and he said he understood why I was so scared to go to the doctor, but actually, it was very different here. I had to agree with him.

Imagine our surprise when things moved even faster than we had imagined.

We had to run a couple of errands for the house with the Dutchman. He enjoys taking us to new places, purely to see the joy on our faces, and he took us to a Turkish supermarket to pick up some vegetables and a couple of spice mixes you just can’t buy at Albert Heijn. It was very tough to have to sit down at home with the number for the hospital and try and ring them about our appointment, but eventually we got through…

Only for the other end to hang up on us. 

The Dutchman tried and it turned out we may have a problem with our phone, as she couldn’t hear him either. He made us an appointment in Dutch, but we weren’t paying attention as we had already got nervous and worked up earlier, and were exhausted. My brain in particular was running on empty, and I wasn’t even able to process the Dutch I was hearing. 

The Dutchman turned round and looked at us.

“I’m about to tell you some very difficult news. Are you ok right now?” 

“Yes? What’s the news?”

“Can you come in to hospital today to have tests done?”

I jumped.

“Yes! Did you say yes?!”

“I did. I just have to ring work and see if I can get the time off.”

He rang, he checked and yes he could.

So, after a little bit of downtime, cuddling up to the Dutchman, we set off for the hospital. 

It transpired that the doctor had referred me to the hospital as a semi-urgent case, and they weren’t hanging around. They had a free slot that day and asked me if I could come right then and there.

So, when I wrote my last post, I found myself hanging out in a hospital waiting room in the gynaecology department.

A quick comparison with the NHS- I’ve been constantly told that there’s no way to process an urgent referral quicker than in three weeks. I had mine done as a semi-urgent case in a matter of hours. Yes, that’s right… A few hours.

It turned out that there was a lot of surgery scheduled for that day, and the doctor I was originally going to see was not available. She was a young female doctor. Instead, I had a male doctor. My insides writhed- historically, a male doctor was truly vile about my back injury and I have been traumatised ever since over what he put my system through. We all dislike the thought of seeing a male doctor, but at this point I was utterly desperate and didn’t want to wait any longer for help. These people moved fast. They had all been kind. Maybe this man would be different?

As it turned out… That assumption was entirely correct. 

My doctor was very kind, incredibly considerate, and thorough. He was not patronising or rude, and he listened carefully to my symptoms. He took a full medical history and was incredibly understanding about the trauma we had suffered. He also said the word endometriosis without us promoting him, and explained that he was going to see if it was endometriosis, or whether it was something else. He did say that women who have suffered trauma do hold their pelvic floor very tightly, which can cause pain during sex and afterwards. That does make sense, but the Dutchman is always kind and gentle. We have worked through a lot of hangups together, and we are doing well. The problem is that certain positions hurt, and since my illness took hold, we have only had penetrative sex a couple of times: it’s sadly been too painful. 

The doctor explained he wanted to do an ultrasound and he also wanted to do an internal exam, plus check my cervix for abnormalities. I sat there, and asked the others what to do. We had all been traumatised by the horrible examination we had undergone in the UK, and they had been rough and not given two fucks if the exam wasn’t well done. As a result, we have been terrified of going through anything like that again.

However… Nineteen said she could maybe do it if I couldn’t. Fourteen and fifteen said that they wanted us to be better. Sixteen said that this man seemed kind and gentle. The Dutchman looked at me and said he would be right there with us. 

So, I agreed… And it did NOT hurt like I expected at all.

Apparently, gynaecology in the UK is not very good. This experience was much less painful and upsetting. The doctor talked us through it, kept his eyes firmly on my face whenever possible, explained what the internal ultrasound probe could see and that everything looked normal, but he could still see that I was in pain. He was gentle with me apart from when he had to test where my pain was coming from, which I expected to hurt because he pushed pretty hard on my ovaries. Owch. I bit so hard on my index finger, the marks stayed for at least twenties minutes. 

He told me to squeeze the Dutchman’s hand and relax all my muscles, which I did because I was a dancer, and we can isolate muscle groups like not many others can. As such, things went very well and when the tests were finished, he commended me on my bravery. So did the Dutchman. He kept telling me how proud he was of me to face that and come out the other end, still fighting.

It turns out that my ovaries are very painful if you poke them. I’ve decided to call them the screamers, seeing as that’s what I want to do if something hits them. Outwardly, there’s no sign of endometriosis, but there may still be inwardly. The doctor kindly explained he would arrange an MRI, and that the waiting list may be long. I explained that was fine as I am used to long waiting lists, and we shook his hand and left. Whilst we had been there, our doctor had also been on call for the maternity ward, and had been obliged to answer several calls about a woman who was due to go into labour, but they needed to induce her. He seemed to be the go-to expert as he received calls from several different people about her. The Dutchman later told me that the doctor had recommended a course of action, but also said he would drop by later to check her over and make sure she was ok. 

So, the waiting list for an MRI, you ask?

I have to wait… Such a long time… Til May 30th. That’s right. Only a couple of weeks and I have my next set of tests. 

They all apologised for that, too! I was shocked. I have been told in the UK that a six-week wait was a “quick” one. I was also offered appointments a lot sooner, but I am sadly flying to the UK to deal with wedding stuff that needs fixing. I had to sadly decline those appointments… Which were NEXT WEEK. These people at the hospital are so kind and so hard-working, bless them.
I want to point out that there are some differences between what I’ve experienced in the UK and in the Netherlands. Aside from the fact that the UK government keeps stripping the NHS of funding (its major problem), there are other reasons why I will not be attending an NHS medical centre, and here’s why:

  • The gynaecologist treated me with dignity, respect and humility. I was not a body. I was a person. He had obviously been trauma trained, too, as I initiated everything during my exam, and he was very respectful of me whilst it was happening. At no point did he treat my trauma as something that was making me crazy and making me exaggerate my pain. 
  • It is so refreshing to have my pain considered as the problem. I am being told here that my pain is the problem, the diagnosis secondary to that. In the UK, it’s diagnosis first, pain is a side effect. If there is no diagnosis, there’s no reason for pain. Sod off and stop clogging my waiting room. Although the doctor yesterday could see that there was outwardly nothing wrong with my reproductive system, he acknowledged how much pain I was in.
  • Doctors in the Netherlands are human. They react like human beings to pain and suffering. They tell you that your symptoms aren’t normal. In the UK, I’ve been gaslighted so hard that I end up panicking and usually, having emotional flashbacks. Things I’ve heard in the UK, in regards to my pain, have been awful. “No, you don’t have anything wrong so I won’t treat you.” “Don’t expect me to listen to you whilst you’re so angry.” “Pain in women is common and normal.” “Leaving pain and cysts is normal, and a really viable treatment option.” “It couldn’t possibly be endometriosis.” NHS doctors seem desensitised, only able to process pain if there is a physical wound, and oftentimes they dislike you telling them the truth. I’ve told the truth about how badly my pain affects me to the doctors in the UK and the Netherlands. In the UK, the response was, “Well, you got to the hospital ok. Clearly it’s not that bad.” (REALLY!? If I don’t drag myself to your stupid appointment, I get kicked out of the treatment list and have to start all over again!) In the Netherlands, I got told, “Well it’s obvious you’re suffering a lot of pain. We should investigate that.”

Can you see what I’m saying?

I believe the UK medical system is suffering from a joint malaise: lack of funding, and compassion fatigue.

NHS doctors are trained to see every potential patient as a liar who is after free medical care for no reason. The media in the UK spread this message and people believe it. Sadly, I think a lot of doctors believe this too, especially the older doctors. Younger doctors seem to want to help, but their hands are often tied with lack of funding red tape. I also saw that a lot of nurses and paramedics had much better bedside manner than the doctors, and were actually less likely to be condescending. What’s the difference here?! Does the group that study to be doctors get no training in basic bedside manner?!

If the NHS is going to improve at all, it needs to see pain as a condition and not just as a symptom. If it is going to be anywhere near as good as the Netherlands, it needs to retrain its women’s healthcare teams to understand how badly trauma affects women, and how to proceed when treating traumatised women. It needs a hell of a lot more money, and its ludicrous “keep patients out” mentality needs to stop. 

At any rate, it seems that maybe, just maybe, I might end up with answers. Even if I don’t, I have a weird feeling that I am actually going to be respected, taken seriously, and my pain actually treated. 

Thanks for reading. This got long and rambly, sorry!

Love and spoons, 27 x

Another May Day.

Today is the ninth of May. It won’t really matter too much to many people out there- just another ordinary Tuesday. The only reason it might matter at all is if, perhaps, you have an anniversary today. Maybe you got married today, a child was born, you got that incredible job or you met someone you knew was going to be a friend forever. Maybe you travelled on the holiday of a lifetime. Whatever it was, I hope it was pleasant… Because, sadly, not all anniversaries are.
For many people who have been traumatised, specific dates and months are fraught with difficulty and upset. Ask anyone who was in London on 7/7, but not actively involved, where they were at the time of the attacks and they will, most likely, tell you where they were, what time it was, when they saw the news. It’s the same with any trauma, unless you happened to be the one suffering through it.

I’ve noticed that trauma survivors are able to tell you what happened to them, but sometimes they are super hazy on exactly when it was. Others can give you a clinical description of exactly what date and time it was when their trauma happened, but have little to no idea what happened. I’ve also noticed that victims of repeated trauma are super confused about timelines, which is even more impaired when you realise that a lot of repeat trauma survivors tend to have an identity disorder, an anxiety disorder, PTSD or some hellish combination of all three. These disorders play havoc with your internal clock and quite often, you have no hope of figuring out what’s going on.

My observations have told me that those who have had repeated trauma happen to them can’t frame timelines well, whereas people who have had a single trauma happen to them mostly can tell you exact details about what time, date and place they were at or in when it happened. Of course, there are exceptions, but psychological studies tend to theorise that having a single trauma usually timestamps itself on someone’s brain. Repeat trauma generally impairs this ability.
I am a combination of both.
The younger alters in my system kept my secrets for years, not telling me when bad things had happened because they were trying to protect me. Timelines have been hazily bashed out as we have learned to communicate as a system, so we all roughly know how old we were and what happened when. Sometimes we still get confused. However, weirdly enough, exact traumas still have dates attached to them… Dates like the 10th September and the 9th May.

We broke our back on the 10th September, and the ninth of May marks a whole year of suffering from chronic pain. 

It’s true we have been in pain in some way for most of our lives, but this affected me really badly. I think it’s cause I fronted whilst the trauma was happening. Being told countless times that I was imagining my pain was soul-destroying, especially after having fought so hard for my health in various other ways. I wanted to protect my system against what was happening, especially 19, because she’s fought so hard for us before. I wanted to spare the younger ones the trauma. Sadly, I traumatised myself instead.

I am seeing the doctor here tomorrow, and there’s so many things writhing around in my head I just don’t know how to begin to list them. What happens if I’m dismissed without any real answers again? What happens if even the Dutchman can’t get them to see reason? I have faith that he will do his absolute best to help us, but I worry that it’s not going to be quite enough. 

The Dutchman tells me that actually, in the Netherlands, things happen far quicker than they do in the UK. There’s much less waiting and more time spent being treated, people in the profession are less likely to be condescending, and things are overall much less stressful. I want to trust that he’s right. I know he would never mislead any of us or lead us astray. I just want his experience to be because he lives here and not just because he’s a man.

Wish us luck. This is a horrible anniversary today, and we want to make it through as unscathed as possible, especially me. 
Love, 27 x

So basically…

Today we are all exhausted. We hurt really badly as well and we suspect we will need to sleep soon, despite having woken up at eight.

This is not fun. We at least are pleased that we have a medical appointment soon, but we are also scared of it. What if we get told the same stuff as before? 

Fingers crossed that it will be ok.

In the meantime, there’s wedding prep to be getting on with. It’s been a bit of a struggle to do things from the Netherlands, but worth it just the same.

The cats we seem to have made friends with don’t want to leave my side. I love it. I miss my puppy but I know that the cats are looking after me in their own quiet way. I keep trying to befriend a cute little black kitten but he is shy, so we have been taking it super slow. He actually took food out of my hand the other day! Progress.

All in all, our days consist just trying to keep us all afloat at the moment. We are trying hard to keep fourteen and fifteen sane, because it’s May, and we are also working on keeping 27 grounded. She’s frightened of the medical stuff. Hopefully nineteen and I can kick butt when we go to the appointment next Wednesday.

It’s weird to type to you guys. I feel like I know you through the others, but it’s strange to finally talk to you. Nice to meet you, anyway.

Love, sixteen x

The next step…

Today the Dutchman and I went to get us registered at the doctor’s office. They were nice in there, but I felt so I’ll and was in so much pain whilst I was there- it’s the first day of my period today and it is wiping the floor with me.

They also made an appointment for me to come back on Wednesday next week. Wish us luck. Not sure who will handle the appointment as we are already freaking out a bit.

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!)