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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Confusion and laparoscopy surgery date

A lot has been happening. A lot.

So we have been to the hospital again, we are getting a laparoscopy, but the doctor I think has made his mind up about us. He thinks that they won’t find anything inside us when they look and that this is psychosomatic, or just pain for no reason.

I’m on a period I’m not meant to have because I’m on medicine to stop them from happening, a period that’s now lasted for 3 whole weeks. 27 is upset, nineteen did the hospital appointment and is upset because she feels like she failed to get us proper help. How can our doctor ignore a period that’s been running for three weeks?! Three. Weeks.

We keep thinking about the laparoscopy and our insides roll. We’re supposed to be having an endometriosis specialist come to do the laparoscopy, but it might also end up being our usual doctor. We are so frightened that nothing will be there, despite seeing blood filled cysts on scans, despite the pain that’s stopped us from leaving the house or showering every other day, despite the three week long period that’s apparently “normal”. None of this is normal, but yet somehow we feel gaslighted into believing that we have made a huge fuss over nothing… Whilst simultaneously not being able to get out of bed in the morning, due to pain and fatigue.

The Dutchman didn’t see the appointment as being as bad as we thought it was. He thinks our doctor wanted to prepare us in case they find nothing. I’m so upset and nervous, but there’s nobody else to talk to apart from the Dutchman. He’s being amazing, but we are so stretched to our limits. What’s worse, pain in our spine has returned, along with stiffness we’ve never had before. It feels like I have fallen and smacked my spine on the floor, but that hasn’t happened and there are no bruises. I’m so scared.

The younger ones and I want to help the older ones, but I kind of feel like I’m not doing well myself. We’ve asked the Dutchman to book us in for an appointment about our mental health. We don’t think we are doing that well at all, and we need some help.

We will keep you updated. The laparoscopy is on the 30th April.

Love, Sixteen xxx

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.

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