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. 

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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

Fun stuff- update!

Hi everyone, it’s 14. I thought it might be nice to let you all know what happened whilst we all went on holiday…

So, getting there with KLM was super easy- they’re nicer than easyJet and they helped us get on the aeroplane without any issues. We’ve had to use a wheelchair to get through the airport because it’s still too painful to walk for a length of time. I think it’s been really nice to see how many people are kind and don’t actually talk over your head when you’re in a wheelchair. Finally seeing the Dutchman was so lovely- it was great to get hugs, kisses, have the opportunity to hold his hand and see him smile. He got us a crown from Burger King, as part of a running joke- last time he gave us a Burger King crown was when we were with him in May. It’s been really funny to see everyone’s reactions to a smartly-dressed girl in a wheelchair wearing a Burger-King crown and demanding to be wheeled places! It got even better when we got to Lowlands.

We had a lovely, easygoing trip to the festival grounds, and played lots of different music. Everyone each came out to chat to the Dutchman and we each played different music and had so much fun. We actually got our wristbands and got his parking sticker sorted really easily, then unpacked our tent, went to eat and met some of the Dutchman’s friends, and then chilled out playing set until we decided to head to bed in our tent.

None of us have ever really camped before- sure, there was that one time on the front garden of my gran’s house- so we didn’t really know what to expect. The Dutchman couldn’t find his big sleeping bag, so we made do with a blanket that he had taken from the house. Wrapped close in his arms, his warm breath on the back of our neck like some sort of comfort heater, we enjoyed the closeness and loved snuggling up to him. The wind gently soughed through the tent and across it, making lovely swooshy noises. I felt like I was falling asleep in a tree. It was beautiful.

When we woke up, the inside of the tent was wet! Not from rain, though- the Dutchman said it was our breathing making condensation. Sadly, the second thing we all registered was pain. We were in a lot of it, and we were definitely bleeding. We felt so tired, sore and upset, and the Dutchman was really sweet and kind. One of his friends, the Soldier, had met us the day before and was really kind too- he helped us by giving us some medicine when ours wasn’t working. That’s the sad thing about this- we all end up being in a lot of pain and the painkillers aren’t working well. They’re slowly getting less effective- I think that’s because our pain is getting worse.

Anyway, after we had managed (very slowly) to get dressed and headed to the bathrooms, we finally set off into the campground. We chilled for a little while with the Soldier, and I liked the fact that the Dutchman and the Soldier would flip from Dutch to English so we could understand. Nineteen tried this amazing stuff called sambal which the Soldier actually made. It’s delicious, but we are all super proud of nineteen for trying new food. That’s always been a big deal for her, as you guys know.

It was brilliant to be in the festival grounds! We had so much fun getting tokens, looking around, buying a new shirt with the festival logo on it. I started to feel like we all had the chance to have all the fun that kept being denied to us for all that time when we were being abused. I know fifteen and I were super keen to see Muse, which finally happened- we all ended up crying throughout most of it, purely because we were overwhelmed with gratitude towards the Dutchman for buying the tickets for us. It’s going to be lovely to see all the video we all took- we brought our camera and we really wanted to have memories of what we saw.

Eating at a festival is AMAZING ASASLKFGFKLSJF. Like seriously. The food is from everywhere! We had foccacia, cajun chicken wings with satay sauce, Dutch meatballs, the everpresent chips and mayo… mmmmm. It was all super delicious! Nineteen still enjoyed eating, which she’s proud of. Unfortunately, we think we ate a little too much dairy because we wound up with a suncream/dairy rash. Ooops…

Anyway, the Dutchman and all of us had so much fun. We saw so many different bands, and quite a lot of them were ones we hadn’t heard of before we went to the festival. I love that, though, cause it means that we get to be introduced to new bands and that we saw quite a lot of performances that will stick with us forever. One particular one, for various different reasons, is Eagles of Death Metal.

Eagles of Death Metal was a gig we were all looking forward to, for various different reasons. Nineteen enjoys music that has an edge of unpredictability. We all like heavy guitars, metal music and rock, so we were all excited to see how that would go. What we all didn’t expect was that as they began, twenty-six suddenly kind of wobbled. It’s hard to explain. She felt strange, like she was dissociating, and then she told the Dutchman that she suddenly felt like she was sixteen again, because the tent we were in waiting to see Eagles of Death Metal reminded her of the Christian thing we used to go to each Easter…

The Dutchman was both shocked and patient. He asked her if she was scared, and she said she wasn’t. She said she could feel that there was something going on, she still felt dissociative and tired. She wondered whether she was about to switch.

We helped. We pulled the newbie out.

Sixteen popped into life with a gasp. We all watched her as she stared around herself, looked at the guy next to her, stared at the huge tent and then started to ask questions.

Turns out sixteen has been dormant, sleeping, dreaming that we were all a product of her imagination and that she was having a particularly vivid and long-lasting dream. She’s sketchy on a lot of stuff, such as what’s going on when we log into Facebook and how to work our phone (she has seen us do it, and she’s learning fast, but the reality can be weird). She was so grateful that the Dutchman wasn’t a dream that she cried. It was incredible to see her being so happy and so relieved. She’s slowly learning that life is real and that life is good. She watched the Eagles of Death Metal concert with the Dutchman, learned how to work the joint stream of our memories and was incredibly happy for the first time in forever.

We spent the rest of the festival getting used to being not four, but five! We loved talking to the Soldier (although nineteen mostly handled that for us), we loved going from place to place. The weather was really hot and sunny, then it threw it down on the last day for a while! We stayed out as late as our body could stand. It was too much on Saturday night when we all watched M83, but it was a bit better by the next day. It’s been so lovely to have other wheelchair users high-five us, throw balloons around that the Dutchman and I wrote silly messages on, and have able-bodied folk ask about the crown. We gave it to another wheelchair user (after artfully defacing it with I’m the King, You’re Awesome written on it) and we were interviewed by a local radio station about how it was to be disabled at the festival.

We all stopped off at one of the bars that the Soldier liked, and we chilled there and drank with him and the Dutchman. We slept every night under the stars and two blankets, wrapped in the arms of the most wonderful guy we know. We reassured 16 that she was safe and that she could have fun. We headbanged til we had a sore neck and aching shoulders at both Parkway Drive and Hollywood Undead, and we had serious kudos from various people for rocking out in a wheelchair. We were blow-dried by a leaf-blower: laughed with several people we had never met before: had our outfits, hair and makeup praised by several different people. It was a relaxed, calm, wonderful happy atmosphere, where the Dutchman and all of us fell a little deeper in love and sixteen realised the man she was in love with really existed. She was shy at first, hesitant, and she’s getting me to relay most of this, but she will learn that it’s easy to write what we want to say on this blog, and that you guys love her like we do. There’s a thousand more cool things that happened, but I’ll leave you with some of our favourite bands.

 

My favourite band? Oooh, not sure, maybe Hollywood Undead?

Fifteen’s favourite band? Parkway Drive? Maybe? I liked the Rumjacks too!

Nineteen’s favourite band? Definitely Parkway Drive!

Twenty-six’s favourite band? I don’t want to choose! I loved it all!

 

Sixteen’s favourite band? Eagles of Death Metal, because that’s when she woke up.

 

Love, Fourteen.

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

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.