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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Too far gone for hope?

I’m starting to feel like we should give up hoping that someone is going to help with our pain, fatigue, nausea, dizziness and heart issues.

I swear every time we get our hopes up, something comes along and destroys it flat. I am so tired of it all. We’re all tired of it.

Another set of blood tests have been sent off and we’re waiting for the results. We’re tired and want to sleep all day, pretty much every day.

We’ve been faking being ok recently so that we won’t upset our wonderful Dutchman, but he knows now how bad it is and is trying to help. We’re scared of burning him out.

What is left, genuinely, when your life is dictated by your illness and there’s nothing you can do about it?

Married in twelve days.

Yep. September dawns and we look to the future. Every September, we used to head back to school with sadness in our hearts because of how much we hated academic school. Now, things have very much changed. 

We started dating the ex on 20th September. That was a dreaded date for years: now, we have only really thought of it whilst writing this. The 16th September is where it’s at.

The Dutchman has his waistcoat, gold-flecked and gleaming. Little skull cufflinks will adorn his shirt, and a small femur tie pin will glisten on his tie. My secret, secret dress is almost ready, with only one seam left to fix and it will be perfect. My shoes are from 1920, same as my headdress, family heirlooms from an auntie. I have sewed up the runs in the silk bridal stockings I own (given to me by another auntie), and I know what my something blue is (garter and underwear, shh! Nineteen loves it!).

This is a thrifty, tough month though. We are struggling with finances because the wedding is eating up money like a hungry whale: everything goes in and not much seems to be filtered out. The Dutchman is so calm at the moment, although he admitted he’s been struggling the other day. We stood in the shed, I asking tough questions, until he admitted how stressed he’s been. We all let him know that we love him and that he’s precious, and we are so proud of him.

The wedding preparations are why we have all been so quiet. Once the big day is over, Clara, our newest alter, would like to write you a blog so you know what she’s like. We all love her. She age-slides from eight to eleven, but mostly stays at eight. We baby her a lot, to be honest, and she actually loves it. I think she never really got to be a child from being about eight, and grew up too fast. We have all agreed she can be a child now. 

As for the wedding? I couldn’t sleep the other night because I was so excited. The others were just as bad. I will write a proper update once everything is finished, but for now… Just know that I’m happy, so are the rest of my amazing team, and we are going to marry the guy of our dreams soon. Twelve days.

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

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