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.