What happened yesterday…

So, if you saw yesterday’s post and were confused or concerned, let me explain what happened. Hospitals, doctors and internal exams get discussed so just stay safe, people.
Yesterday was a big day for us here. We finally had the time, since finishing the house, to sit down with the Dutchman and choose an insurance company. In the Netherlands, the insurance companies do treat pre-existing conditions and the prices are very reasonable. Not only that, but if you can’t afford to pay, the government pays for you. Once you get a good job, you then start paying what you can afford, and eventually once you earn enough money, you can pay your own way. It works really well as I am covered despite not having a job yet. The premiums are smaller than the ones I researched in the UK, and it seems to me that a lot of people who can’t pay for their insurance still don’t have to worry. The government in the Netherlands tries to make sure everyone has access to healthcare. Not only that… But oh, my actual god, the way things work here is just amazing.

Anyway, we went to the doctor yesterday, the Dutchman in tow, gently reminding us that we were ok and he had us and if there was any reason at all for us to be dismissed out of hand, he was there to fight with us. He never backs down, never gives up. He’s so steadfast. We saw the doctor without the customary ten-minute wait I’m used to, despite the appointment being at ten past nine. The doctor was short, bald, and wore those wonderful round-rimmed glasses that the older Dutch seem so fond of. His smile was kind and his handshake firm.

I ended up fronting yesterday. Nineteen thought it would be good for me to tackle one of my worst fears, and she was also there in the background, hovering, just waiting to explain why we needed help if I couldn’t explain. I needn’t have worried.

The doctor was kind, quiet, and asked questions in slow, precisely- spoken English. He immediately thought of endometriosis and did a simple test of his own to determine where my pain was. He tapped on my stomach and lower abdomen to check where I was sore, and I shot off the bed a couple of times. He apologised for my pain, but didn’t look surprised at his findings. It was almost like he expected to find pain in the areas he found it in.

Due to the Dutchman explaining that I have passed a sports massage course, so knew a lot about anatomy, he explained that as well as adhesions, endometriosis also leaves scars. That makes sense. I had a good friend of mine say that maybe the cyst left scars when it burst. He decided to refer me directly to the hospital and that they could investigate my pain: not just whether or not I had endometriosis, but the pain itself. I was overjoyed to realise that I had basically got through the first step without being told that I was malingering or faking. 

The Dutchman explained how much we used to physically be able to do, and how little we can actually do now. Listening to his beautifully accented Dutch, understanding it, I realised he was right. Our body has gone from being able to bench press and curl and pirouette and wrap its legs round its neck to this… A body which gives up after an hour walking round a shop somewhere. This level of fatigue isn’t normal, and the doctor accepted that readily. 

I don’t know about you, but that far in I was already making comparisons. The NHS consistently told me how I shouldn’t be complaining, I was only in a little bit of pain, and that I really couldn’t be that tired. Maybe I was exaggerating? Did I drink coffee before bed? All women have pelvic pain, get over it. Here, have more Tramadol and shut up.

I relayed all this to the Dutchman, and he said he understood why I was so scared to go to the doctor, but actually, it was very different here. I had to agree with him.

Imagine our surprise when things moved even faster than we had imagined.

We had to run a couple of errands for the house with the Dutchman. He enjoys taking us to new places, purely to see the joy on our faces, and he took us to a Turkish supermarket to pick up some vegetables and a couple of spice mixes you just can’t buy at Albert Heijn. It was very tough to have to sit down at home with the number for the hospital and try and ring them about our appointment, but eventually we got through…

Only for the other end to hang up on us. 

The Dutchman tried and it turned out we may have a problem with our phone, as she couldn’t hear him either. He made us an appointment in Dutch, but we weren’t paying attention as we had already got nervous and worked up earlier, and were exhausted. My brain in particular was running on empty, and I wasn’t even able to process the Dutch I was hearing. 

The Dutchman turned round and looked at us.

“I’m about to tell you some very difficult news. Are you ok right now?” 

“Yes? What’s the news?”

“Can you come in to hospital today to have tests done?”

I jumped.

“Yes! Did you say yes?!”

“I did. I just have to ring work and see if I can get the time off.”

He rang, he checked and yes he could.

So, after a little bit of downtime, cuddling up to the Dutchman, we set off for the hospital. 

It transpired that the doctor had referred me to the hospital as a semi-urgent case, and they weren’t hanging around. They had a free slot that day and asked me if I could come right then and there.

So, when I wrote my last post, I found myself hanging out in a hospital waiting room in the gynaecology department.

A quick comparison with the NHS- I’ve been constantly told that there’s no way to process an urgent referral quicker than in three weeks. I had mine done as a semi-urgent case in a matter of hours. Yes, that’s right… A few hours.

It turned out that there was a lot of surgery scheduled for that day, and the doctor I was originally going to see was not available. She was a young female doctor. Instead, I had a male doctor. My insides writhed- historically, a male doctor was truly vile about my back injury and I have been traumatised ever since over what he put my system through. We all dislike the thought of seeing a male doctor, but at this point I was utterly desperate and didn’t want to wait any longer for help. These people moved fast. They had all been kind. Maybe this man would be different?

As it turned out… That assumption was entirely correct. 

My doctor was very kind, incredibly considerate, and thorough. He was not patronising or rude, and he listened carefully to my symptoms. He took a full medical history and was incredibly understanding about the trauma we had suffered. He also said the word endometriosis without us promoting him, and explained that he was going to see if it was endometriosis, or whether it was something else. He did say that women who have suffered trauma do hold their pelvic floor very tightly, which can cause pain during sex and afterwards. That does make sense, but the Dutchman is always kind and gentle. We have worked through a lot of hangups together, and we are doing well. The problem is that certain positions hurt, and since my illness took hold, we have only had penetrative sex a couple of times: it’s sadly been too painful. 

The doctor explained he wanted to do an ultrasound and he also wanted to do an internal exam, plus check my cervix for abnormalities. I sat there, and asked the others what to do. We had all been traumatised by the horrible examination we had undergone in the UK, and they had been rough and not given two fucks if the exam wasn’t well done. As a result, we have been terrified of going through anything like that again.

However… Nineteen said she could maybe do it if I couldn’t. Fourteen and fifteen said that they wanted us to be better. Sixteen said that this man seemed kind and gentle. The Dutchman looked at me and said he would be right there with us. 

So, I agreed… And it did NOT hurt like I expected at all.

Apparently, gynaecology in the UK is not very good. This experience was much less painful and upsetting. The doctor talked us through it, kept his eyes firmly on my face whenever possible, explained what the internal ultrasound probe could see and that everything looked normal, but he could still see that I was in pain. He was gentle with me apart from when he had to test where my pain was coming from, which I expected to hurt because he pushed pretty hard on my ovaries. Owch. I bit so hard on my index finger, the marks stayed for at least twenties minutes. 

He told me to squeeze the Dutchman’s hand and relax all my muscles, which I did because I was a dancer, and we can isolate muscle groups like not many others can. As such, things went very well and when the tests were finished, he commended me on my bravery. So did the Dutchman. He kept telling me how proud he was of me to face that and come out the other end, still fighting.

It turns out that my ovaries are very painful if you poke them. I’ve decided to call them the screamers, seeing as that’s what I want to do if something hits them. Outwardly, there’s no sign of endometriosis, but there may still be inwardly. The doctor kindly explained he would arrange an MRI, and that the waiting list may be long. I explained that was fine as I am used to long waiting lists, and we shook his hand and left. Whilst we had been there, our doctor had also been on call for the maternity ward, and had been obliged to answer several calls about a woman who was due to go into labour, but they needed to induce her. He seemed to be the go-to expert as he received calls from several different people about her. The Dutchman later told me that the doctor had recommended a course of action, but also said he would drop by later to check her over and make sure she was ok. 

So, the waiting list for an MRI, you ask?

I have to wait… Such a long time… Til May 30th. That’s right. Only a couple of weeks and I have my next set of tests. 

They all apologised for that, too! I was shocked. I have been told in the UK that a six-week wait was a “quick” one. I was also offered appointments a lot sooner, but I am sadly flying to the UK to deal with wedding stuff that needs fixing. I had to sadly decline those appointments… Which were NEXT WEEK. These people at the hospital are so kind and so hard-working, bless them.
I want to point out that there are some differences between what I’ve experienced in the UK and in the Netherlands. Aside from the fact that the UK government keeps stripping the NHS of funding (its major problem), there are other reasons why I will not be attending an NHS medical centre, and here’s why:

  • The gynaecologist treated me with dignity, respect and humility. I was not a body. I was a person. He had obviously been trauma trained, too, as I initiated everything during my exam, and he was very respectful of me whilst it was happening. At no point did he treat my trauma as something that was making me crazy and making me exaggerate my pain. 
  • It is so refreshing to have my pain considered as the problem. I am being told here that my pain is the problem, the diagnosis secondary to that. In the UK, it’s diagnosis first, pain is a side effect. If there is no diagnosis, there’s no reason for pain. Sod off and stop clogging my waiting room. Although the doctor yesterday could see that there was outwardly nothing wrong with my reproductive system, he acknowledged how much pain I was in.
  • Doctors in the Netherlands are human. They react like human beings to pain and suffering. They tell you that your symptoms aren’t normal. In the UK, I’ve been gaslighted so hard that I end up panicking and usually, having emotional flashbacks. Things I’ve heard in the UK, in regards to my pain, have been awful. “No, you don’t have anything wrong so I won’t treat you.” “Don’t expect me to listen to you whilst you’re so angry.” “Pain in women is common and normal.” “Leaving pain and cysts is normal, and a really viable treatment option.” “It couldn’t possibly be endometriosis.” NHS doctors seem desensitised, only able to process pain if there is a physical wound, and oftentimes they dislike you telling them the truth. I’ve told the truth about how badly my pain affects me to the doctors in the UK and the Netherlands. In the UK, the response was, “Well, you got to the hospital ok. Clearly it’s not that bad.” (REALLY!? If I don’t drag myself to your stupid appointment, I get kicked out of the treatment list and have to start all over again!) In the Netherlands, I got told, “Well it’s obvious you’re suffering a lot of pain. We should investigate that.”

Can you see what I’m saying?

I believe the UK medical system is suffering from a joint malaise: lack of funding, and compassion fatigue.

NHS doctors are trained to see every potential patient as a liar who is after free medical care for no reason. The media in the UK spread this message and people believe it. Sadly, I think a lot of doctors believe this too, especially the older doctors. Younger doctors seem to want to help, but their hands are often tied with lack of funding red tape. I also saw that a lot of nurses and paramedics had much better bedside manner than the doctors, and were actually less likely to be condescending. What’s the difference here?! Does the group that study to be doctors get no training in basic bedside manner?!

If the NHS is going to improve at all, it needs to see pain as a condition and not just as a symptom. If it is going to be anywhere near as good as the Netherlands, it needs to retrain its women’s healthcare teams to understand how badly trauma affects women, and how to proceed when treating traumatised women. It needs a hell of a lot more money, and its ludicrous “keep patients out” mentality needs to stop. 

At any rate, it seems that maybe, just maybe, I might end up with answers. Even if I don’t, I have a weird feeling that I am actually going to be respected, taken seriously, and my pain actually treated. 

Thanks for reading. This got long and rambly, sorry!

Love and spoons, 27 x

News- this could still be endometriosis.

Hi all, 26 speaking.

Huge news- spoke to a doctor about my pain. She immediately thought it was Endo, even after the laparoscopy result, and has prescribed me new meds and wants to talk about treatment options at my next appointment. I’m crying in relief. I don’t think this is bowel pain, I never have. I bet they didn’t find Endo nodules when they operated cause they were in there for 30 mins.

Please gods let me have answers soon.

26 x

 

(PS- looks like the Dutchman and I may have a house! He’s signing mortgage papers tonight!)

Bisexual relationships- how to get it right.

The girl that we dated sadly was the reverse of this. I feel like she never knew that she was being abusive, but she was damaged by her previously abusive relationship and the loss of her father when she was young.

 

It’s sad that bi erasure still exists. #StillBi

 

 

 

http://www.curvemag.com/Lifestyle/11-Ways-To-Be-A-Good-Lesbian-Ally-To-Your-Bi-Girlfriend-1424/#.V7399SVqZeY.facebook

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: (Possibly) Cyst-related news and explanations

So, for those of you who are kind of new to this blog, I’ll give you a brief run down of what’s going on. The trigger warning is there just in case anyone has issues with medical stuff. Also, for anyone who is really new, we are multiple, and have a fiancé

 

So, basically, I last had these cysts pop up in August 2015. I wrote a detailed post on it, have a browse through the archives. The cysts were found on a scan, and I was told that they would go away by themselves. I was supposed to wait and have another scan to check they’d gone. I never had the follow-up scan done- we missed the appointment.

This episode started in May, one of our worst trauma months. We were eventually admitted to hospital and had to have an internal exam, which was stressful and very upsetting. Luckily, we seem to not be experiencing any further psychological effects from that, possibly because the Dutchman was there, holding our hand and letting us know we were ok. He has been incredible.

In hospital, we had a scan, which showed there was a cyst- it was nearly 6cm long. We had felt there was something wrong and hadn’t had a good appetite in ages, which has had an impact on us now- we have lost muscle on our legs.

The hospital and the staff seemed to want to tell us that the pain we were in would go because the cyst was normal. They couldn’t figure out why we were in pain and blamed it on our monthly cycle, which is bullshit because we are on the pill…

They dismissed us and our pain summarily, because apparently the cyst would go and we would be fine. We were discharged with painkillers and told to go home and wait.

So we have waited.

Contradictory things we have been told include the following:

“The hospital isn’t what emergencies are for, that’s what A and E is for.”

“A and E isn’t for emergencies, you need to go to your GP for immediate help.”

“Why haven’t you gone to the hospital? We at the GP surgery aren’t here for emergencies. A and E is for emergencies.”

“If you’re in pain, go to A and E. They are for emergencies.”

“Ring your doctor and make an appointment, they will help you. Ringing here at the hospital won’t help you.”

A and E: “We can’t do anything to help you.”

GP: “We can’t do anything to help you.”

Hospital: “We can’t do anything to help you.”

 

What do you guys think we should do next?

We have been on all of these medicines, at one point or other…

•Ibuprofen

•Paracetamol

•Codeine

•Co-codamol

•Naproxen

•Diclofenac

•Tramadol

We are on Loestrin 20, which is a birth control pill. That’s a combined one. We have been on Progesterone Only Pills before this one.

We wondered whether anyone out there has any advice, because we have really got no idea what to do next. Our scan is on the 27th, and our follow up appointment is on the 28th.

We would love answers.

That phonecall I actually made, and its aftermath…

I went into therapy feeling really really spacey. I had a head floating away into the clouds, a mind that retreated away somewhere safe.

Dr K noticed it straight away and asked what the problem was. I told her I had psyched myself up to call the sexual assault referral place, and she made sure with me that I was ok to do this seeing as we aren’t able to see each other next week (she’s on holiday). I said that the longer I left it, the worse my anxieties would get.

She sat with me whilst I dialled, encouraging me and helping me just by her presence. My fear was there but I pushed on through it and spoke to two separate people about my confusion and worry.

The receptionist and the doctor who talked to me both agreed that I need to talk to my GP about the problems with the pain and bleeding I’m still getting, but the doctor also said that she would get an independent sexual assault advisor to contact me and help me out if I decide to report what happened to me. They were both so kind and respectful, and believed me without question. The doctor also told me to contact them again if I felt upset or needed any more information.

Dr K was so proud of me and all of my fractured jigsaw-piece parts. The younger parts, fourteen and fifteen year old me, were both upset but ok with the fact that I was trying to get help and also that they were believed through me. I floated out of therapy feeling like I’d achieved something but wanting to curl up and sleep.

Tomorrow I travel along the country to teach. I have a train journey to master, two classes to teach, socialising and responsibility for myself in a station I’ve only recently had a panic attack in. I think I can do this. I will just be careful with myself, take a puzzle book, and try to sleep well when I’m there.

I feel scrambled still but I hope that I will feel more with it tomorrow. I am so proud of myself, but I’m tired too.

Thank you for supporting me today.

How my dog just taught me something

Juno is one year old. She’s naughty, willful and stubborn. She loves playing, chewing on ears, and cuddles.

She’s also wise.

I was going to wait til she had fallen asleep and go and attempt suicide, but then I opened my eyes from where I was lying on the opposite couch and saw her staring at me. Why wasn’t I with her?

So I crawled over and snuggled up to her and started crying. She rested her little head on mine and put a paw on my cheek.

She loves me and she needs me, I can’t let her down.