After the hospital today.

Guess who’s pelvic floor muscles are perfect?! (The physio literally said that!)

Guess who doesn’t have pelvic floor issues?

Sadly, guess who’s back on the diagnostic ladder?

Yes, it’s your favourite system. To be fair, the hospital apologised for the fairly long wait (next appointment is the 1st of August) and our physio was lovely. The internal exam we had also didn’t hurt at all! The physio said we should be very proud of such a huge accomplishment. She’s not wrong.

As always, the Dutchman was there to hold our hand and let us know where we were. 2017, safe with him, living in the Netherlands. 27 managed to surface and do the whole exam with the rest of us, which was good as she managed to stay present through the whole thing. We also managed to have a laugh with the physio and stay calm.
Sadly, after all that anxiety, 27 and our body has absolutely crashed. It’s your friendly neighborhood nineteen writing this for you guys to read. Please let me know if you spot 27 acting really depressed or suicidal, she’s been very ill with that recently and I have to make sure it’s not just sixteen who’s alone in protecting her. 

As for me? I hate seeing 27 so fragile. She fights for us all every day and doesn’t really get much in return. Her anxiety is literally through the roof a lot of the time, and I just want to see her safe. It’s funny, usually she does this for us all, but this time round, it’s me, helping her. She deserves the rest.

So, now that long wait. If anyone has tips for easing our pain (besides heat packs as some days we live with one of those attached to us), please drop us a line in the comments.
Love and spoons, nineteen. 

Seriously

… the next post I see telling me that mindfulness is the cure for chronic pain, I am going to tear shit down so hard.
I have just had a panic attack over it. A bad one.
Mindfulness is NOT HELPFUL. I have PTSD, DID, depression, depersonalisation, derealisation, chronic pelvic pain, chronic back pain, a horror of hospitals and clinics, and have just read an article about how mindfulness will greatly help me get over these things. 
Like, it actually said (no sources, citations or academic evidence anywhere) that it (along with CBT) would help reduce my symptoms. I just… 
There is new evidence that anyone who suffers in any way from dissociation should NOT participate in mindfulness. It has, in our experience as a multiple, fucked with our sense of reality so badly that we ended up dissociating worse. It is good enough as a quick fix for stress, but anything more serious than that needs medical attention or psychological attention, depending on what the problem is. 
Sitting with the pain and not judging it, allowing it to flow through me, is what mindfulness teaches that I have to do. No, thank you. I do that every damn day and I am unhappy and tired of trying not to judge my pain. I judge the hell out of it. It hurts. It has robbed me of a dance career, a job as a dance teacher, a sports massage therapist and now, I’m unemployed. Why am I not allowed to judge that? Why am I not allowed to have an opinion on that?
That’s other upsetting thing is that you’re supposed to accept your pain, according to mindfulness. Yeah, cool. Nice. So I have to learn to live at pain levels five to seven (eight to ten when I’m on my period) and accept that? I don’t have to keep fighting for chronic illness awareness? I don’t have to keep demanding research into chronic pain, and that it’s properly funded, in the hopes of finding some sort of better treatment? 
I accept that I am in pain and that I have a chronic pain condition. I do NOT have to be happy about this. I do not have to reach a “zen stage of acceptance” over this. I acknowledge that I hurt every goddamn day, but why am I supposed to be ok about that?  Why am I supposed to be ok with the fact that there is basically no funding going into chronic pain, women’s chronic pain specifically, yet vasectomies get allocated more funding? Why am I supposed to be ok with the fact that I have no real treatment options if my chronic pain isn’t endometriosis (which it is looking like it isn’t)? 
Why are the treatment options I am given all mental health ones and not physical? Why am I not offered surgery for agonising pain and instead have to tolerate condescending doctors and articles and members of the public telling me that my pain is in my head? It isn’t. Push on my ovaries and I will scream. The pain isn’t in my head, it’s in my body. 
Why do I also have to rule things out when both I and my doctor are fairly certain that the treatment I have to have (pelvic floor therapy) is not going to work? Why do I have to keep telling everyone I talk to in the medical profession that I am in physical, localised pain? 
I figured it out after a lot of crying.
It’s because society wants me to take responsibility for my pain and admit it’s my fault. 
I didn’t eat enough green veg as a kid. I haven’t run to the moon and back. I haven’t doused myself in kale, tried enough yoga (it also hurts a lot, btw), done enough exercise, had enough psychotherapy, walked it off, wished it away. I have failed because I’m in pain, and it must be my fault, because I’m a woman who dares to speak up about the agony I live in. 
There are studies done about this. Women who are rushed to the hospital in agonising pain are told they’re exaggerating, and to please stop it or the doctor will not see you (been told this). Women who want help or advice with chronic pelvic pain are told that the reason they hurt is because they’ve been traumatised. They’re offered no physical help with this apart from the ubiquitous mindfulness drivel. Because of course, as we all know, getting a trauma sufferer to focus on the sensations of a flashback hasn’t ever made anything worse… (Was told to do this once, it backfired into a three hour long panic attack).
When will society stop telling women that their pain is their fault? When will society stop peddling crappy cures for our all-too-real physical pain? When will society stop telling us that the key to alleviating our physical pain is to talk it away through therapy? That’s not going to help. 
As someone who’s been through therapy, initially we treated our body pain as body memories. It didn’t go away no matter how much we tried to think of how safe we were, how strong and capable we were, how smart we were and how much we had grown. It stayed, a lacerating feeling inside our womb. No, not our intestines, that one doctor: IBS is over diagnosed in young women instead of endometriosis, because it’s easier to tell someone they don’t know what they’re talking about instead of treating the problem. Trust me when I say that I have wished to be better and wished to dance again more times than we’ve had hot dinners. I want nothing more than to have the body back that I had last year. I don’t think we will ever get that back now.
Please, please, before you post that “mindfulness is awesome??!?!!!!!!!!” stuff, think of what you’re saying to people who cannot practice it. Please stop touting mental therapies as a cure for actual, physical pain. Please stop telling chronic pain patients that their pain is their fault, and they have to accept that and stop talking about it or anything to do with it. Please spend that effort on looking for a cure for us. I’m done with being told there’s no money and no point and I have to live like this. There is a point. There is the money, but it’s being squandered on pamphlets blaming cancer victims for their cancer, or reminding people to stop hoarding medicine, or to stop threatening NHS staff (I’ve been threatened by NHS staff twice). 
Please stop making chronic pain patients accept that pain that isn’t their fault will never go away, and we should learn to accept it. Search. For. Answers. Delegate more funds. Please.
Chronic pain warriors out there, stay strong. This system loves you guys. 

Appointment at the hospital…

Ok, just a quick content/trigger warning: I’m about to talk about body stuff again. We have an appointment with pelvic floor physiotherapy today and we are very frightened, so don’t read on if you’re also not doing well. X

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So, today we have a appointment with a pelvic floor physiotherapist. We are bricking it.

The doctor didn’t think that endometriosis was what’s wrong with us, but he also wasn’t prepared to give up on us. He kept saying that being in pain like we are is not normal. He referred us to the pelvic floor physiotherapist just to rule out that that’s not the problem. We all thought that pelvic floor issues weren’t our problem, doctor included, but he wants to have the experts rule it out. 

The Dutchman is coming with us, but even then, there’s that familiar horrible knot of anxiety writhing in our stomach.

I’m particularly terrified. I want to protect my system and keep them safe, but nineteen assures me she will help with that. The younger ones usually hide during interactions with the outside world, so it might be hard for them to see how much fear I’m feeling. If this doesn’t work, they’re going with hormones to stop my cycle. That’s horrible in itself as they basically induce early menopause. It’s reversible, but still… Hot flushes in this heat?! Gods.

Apparently there will be another internal exam today and that’s just the worst thing. I know we already managed one fairly well, but this is another and with very little warning. Last time was the same, though, so maybe that’s better? If I had known, I would have been stressing out a lot worse.

The hospital are working really hard. I just want answers for my long suffering team. 
27 x

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

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

Nice things ahoy!

Hi, it’s 15. I know we are meant to be working but we are too excited- today we get to fly out to see the Dutchman and go to our FIRST EVER music festival!

 

None of us has ever been to one and we have all really wanted to go for YEARS. It’s been sad quite often- due to dancing, I personally sacrificed weekends, evenings and holidays so I could try to be the best. We haven’t ever had the time or money, and it’s so exciting to think that we do now!

We will be flying out later tonight, meeting the Dutchman, and heading to his. I hope I’m going to be able to sleep, I’m so excited I feel like it’s Vegas again! Then we’ll load the car and head to the festival, set up camp… and the adventures will begin.

We have to be in a wheelchair again for the festival seeing as it’s hard for our body to stand up for any longer than about fifteen minutes without a lot of pain. We can push sometimes, and try and extend the time period, but inevitably we end up recovering for the ENTIRETY of the next day in bed. Boring if you’re at a festival. The chair will ALWAYS be a bonus.

I’m not worried about it but 26 is. She got really upset the other night and rang the Samaritans, and we all ended up talking to the lady on the phone for a long while. It was really awful for 26. She was just at her wits’ end, she is so triggered and gets so frightened of medical stuff. 14 and 19 are best at dealing with that stuff- I lack the courage, I get shy and forget what I’m saying. Plus, 14 and 19 are good at pretending to be 26. I can do it but it’s hard.

The woman from the Samaritans was lovely and eventually got 26 thinking about other things, like the wedding and the festival. I’ve promised her that whilst we are away we are literally just going to live in the moment. If she needs to, she can do it through my eyes, or anyone else’s. We’re here to help her. We also have a phone consultation as a pre-op on the 31st of August, then, after that… the operation will be round the corner. That’s why I want us all to just enjoy the festival uncomplicatedly and just go and have all of the fun. I think we all need a break from just being at home, unable to go anywhere or do anything cause we got told we weren’t allowed to drive (heart is being a butt still and has palpitations. Silly heart! Be a heart, not a butt!) and we are always in pain. The wheelchair should help us do what we want to do. We’re so excited that finally we get to be sociable.

 

At any rate, I am SO STOKED and cannot believe it’s finally here! I’ve really missed the Dutchman. Can’t wait to see him again, he’s missed us and I’ve missed him.

 

Hope you guys are having a great summer.

 

15 x