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

Blue despite hope.

Sorry, this is probably going to be depressing and a little ranty. I’m just at the end of my tether. Please stay safe, don’t read if you’re feeling fragile: assume this post comes with a content warning. We briefly talk about suicidal thoughts too, nothing graphic, but still. Protect yourselves.

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We’re all tired. We had a really nice weekend with our parents, and a nice day yesterday with the Dutchman. He had a day off yesterday so we spent it together, after having taken our parents to the airport. They made it home safely and everything was fine. 

Last night, we crashed, energy wise. We ran right​ out of spoons and ended up floppy and weak. We sounded drunk because we were so tired. 

We’re tired of this. Our period hit on Saturday, the worst one we’ve had yet. The cramps felt like we were partly being bathed in acid and partly slashed by razor blades. It is agony. We managed to pretend we had the energy to do things™ this weekend, but now all we want to do is sleep and hope the pain and exhaustion leaves.

We overdid it and our beleaguered, battered body is now paying the price.

We’re tired of that. We hate it. We hate that May has come and it’s a double trauma anniversary now, coupled with the knowledge that next month was when we lost our little Fay…

We have had an MRI and are waiting for a miracle. Hopefully someone saw something on the scan. Hopefully someone will know why our ovaries hurt so goddamn much. 

Hoping hurts and we are so, so frightened that we will not be able to get help for the pain. We are so done with hurting. In fact, we’re getting suicidal thoughts back again and it’s something we haven’t dealt with in ages, and that’s scary.

Please wish us well. We need you guys.