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. 

The next step…

Today the Dutchman and I went to get us registered at the doctor’s office. They were nice in there, but I felt so I’ll and was in so much pain whilst I was there- it’s the first day of my period today and it is wiping the floor with me.

They also made an appointment for me to come back on Wednesday next week. Wish us luck. Not sure who will handle the appointment as we are already freaking out a bit.

Reblog: World Mental Health Day

Reblog from an amazing blogger. The bit about coping really helped us today. 26 x

Mental Mummy

I was going to write a blog today anyway and then I realised it’s World Mental Health Day, so even more reason.

I apologise for any waffle, I never actually know what I’m going to write when I start these so it all just comes out in one big mess. Most the time it’s readable though, thankfully.

One of the biggest issues with mental health is, it’s rarely openly  talked about. It’s never brought up in general everyday chit chat either;

“Hi how are you doing?!”

“Well actually I’m really struggling, I have a mental illness and today I had a panic attack that made me feel like I was going to die and then I cried so much I threw up. How are you?”

It just doesn’t happen.

And even with those you are close with, it isn’t easy to talk about. Especially if they have never been through…

View original post 1,324 more words

Operation results

It’s not endometriosis, a twisted ovary or a chronic appendix. It’s a distended bowel.

I have to go back to the GP. I am also going to have to try and get them to hurry up.

I hurt. I hate to think what being stabbed would be like.

I am not allowed any more days off. I have this weekend to recover, then I’m back to work.

I have to pass my massage course, too, and I still can’t stand for any longer than fifteen minutes without severe pain.

On top of that, I have a show to help choreograph. Not only that, but I have to demonstrate too, because the kids won’t know what they’re doing otherwise.

I’m at crisis point. How am I meant to function?

Some causes for this condition van be PTSD, and eating the wrong foods. I’ve never been good with dairy so I guess I have to cut it out entirely.

What do I do now? I literally have to keep going, I don’t have a choice.

The others are all trying to help me, I’m at my wits’ end.

26 x

Surgery: Endo or something else?

TW: I get real about periods, pain, hospitals and gynae stuff. Stay safe.

 

 

So I (26) basically am just here to tell you what has been happening.

So on Friday, we went to the medical appointment. Nineteen was her usual badass self and took us into the appointment, braved the waiting room and then the actual appointment.

She went in, sat down, and the doctor practically started asking questions as she sat down! He asked her whether she had pain all the time, where it was, if it hurt to have sex… She answered everything in her usual nineteen way, a little bit flippant but truthfully. She let him know when the pain started and that she had been having problems with awful pain and bleeding for most of her life.

He was calm and just got on with the facts. He asked her if she had had any children. We don’t count the miscarriage as having a child, because she was never born, so she said no. He also asked her if he could do an internal examination but she said no, on behalf of all of us, cause we do that thing where we agree to it them freak out later. She decided it was better to keep us safe.

He was fine with that and then basically told us we were going to have a laparoscopy. I absolutely melted. I was so incredibly relieved! Nineteen kept her head and asked various questions, such as whether not having an internal exam now would cause problems and what would happen. The doctor explained that he could do th exam whilst we were under anaesthetic (a huge relief!) and that he would check to see what was wrong.

He thought it was probably one of three things- one, a chronic appendix, two, a twisted ovary (they can untwist it during surgery but if it’s dead, it has to go) or endometriosis.

Today, I rang the Endometriosis UK helpline to ask them some of my questions, such as will the heart stuff stop us from getting surgery? The lady on the helpline didn’t think so, but she did think that I should ask the hospital that. She reassured me that an anaesthetic is actually a fairly pleasant experience, and isn’t as scary as we thought. One minute you’re talking to someone, the next, you’re awake and in a different room. She explained that there might be some pain in our shoulder blades from the gas, and that they will write a report on their findings. I was encouraged to get a copy of that report- apparently it’s a right and we should be able to get copies of whatever we request fairly easily.

All that remains now is to stay calm and wait for the surgery. I have a list of things to ask but I’m pleased that we will finally have answers.

Massive thanks are due to the Dutchman, lovely as always, and to the friends and family who always keep us floating. Puppy, too, has been lovely. I also want to thank everyone who keeps on reading, commenting or liking the posts I upload- you guys are amazing.

 

The consultant thinks it’s endometriosis. Yet another huge diagnosis that may or may not be right. However, in my personal experience, I’ve been right about PTSD, DID and Bipolar. I was right about my back not being fully better, right about the scar tissue there and right about needing further physio to fix it. I kind of hope in one way that I’m wrong this time, but I don’t think I am.

 

At any rate, here’s to answers after fifteen long years of awful periods, baffling times where there was pain but no bleeding, difficulty in having sex and, since May, non-stop pain. It will be a relief to know what the problem is.

TW: You don’t need a second opinion. Here, have these pills instead…

TW: The NHS, hospitals and the cyst get mentioned. Also suicidal thoughts. Stay safe all x

 

 

 

The days drag by. We are eating pills each morning to try and make it to the end of the day. The same doctor who told us she could do nothing for us on Wednesday also prescribed two boxes of tramadol to us.

When we got home, all we wanted to do was down them all. The Dutchman was on the phone to us, so that didn’t happen. But, just for a moment, the thought was there.

The NHS seems to be staffed with assholes and also caring folk who are held back from doing their job by red tape. Consultants are mostly on holiday or on “sabbatical”, which I’m fairly sure is code for holiday. I’ve been struggling with chronic pain for almost a month now, and I recently was told about someone who works for my auntie who is on a waiting list for three MONTHS for a scan. She has right side heart failure. She could die at any minute, yet they refuse to do anything.

Junior doctors are being legislated out of the NHS and many of the older doctors are leaving in disgust. Private healthcare is so expensive, nobody can afford it.

There are people out there dying, and David Cameron is more concerned about lining his own pockets.

This country is worse off, debt and deficit wise, than it was before he took over. The NHS is crippled, and people are being turned away with a handful of painkillers, desperate and out of options.

You do the maths. It’s not a pretty picture

I’m apparently waiting for a scan that could have been done LAST WEEK, but I was discharged instead. I was told that the hospital was not an emergency service, and to go to the GP. The GP said she was not an emergency service, and A and E are an emergency service. A and E have told me that they’re not an emergency service, and that the GP is where I’m supposed to go.

Never mind the fact that the waiting list is three weeks to see a doctor…

Unless something changes, there will be no national health service. Right now, I can see what damage has already been done. It’s more like national service- you go in and wait, and eventually are handed the means to destroy yourself.

The Dutchman is always, always by our side. He never stops talking to us, he makes sure we are safe, and has helped us by ringing various people about appointments. So far, I’m being fobbed off with a scan. He is angry with the people supposed to take care of us, as are we.

Our usual doctor is on holiday- without her, we wouldn’t even be on hospital radar right now. If she’d seen how much pain we were in, she might have done something better than been not too sympathetic and handed us pills. She goes above and beyond.

Here’s hoping the cyst bursts. That way, at least someone would take us seriously… Or not. They’d probably tell us that we just needed to wait at home and see if it would go by itself. Here, have another packet of tramadol, and no answers.