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: Pain, sadly

Holy mother.

Since deciding to stop the contraceptive pill, life has been interesting. Still the same palpitations sadly, but now it’s that time of the month…

14 and 15 remember this well. Forcing yourself into your school uniform, dragging yourself in, not having a clue what was said and being so far out of your own body because of the pain it felt like you floated.

We’re back here again.

The pain is so bad it makes us want to cry. We have our next hospital appointment on the 5th August, after much arguing and cajoling. Hoping very hard that we will be ok, and that 19 can whup ass- she usually does!

Endometriosis looks pretty likely now. All we need to do is get the doctors to think along the same lines as us.

All pain is gone. (TW-ranty)

TW- an angry rant from me, 19. Sorry about that. Stay safe.

 

So in a moment of madness, I decided it was time to push my stupid body. The one that disobeys me, hurts every fucking day, causes all of us endless anxiety and loathing on occasions. I ran up three stairs cause my heart had been behaving and BOOM-

It felt like I was going to faint. I just got to the bed in time. Black spots and white stars flashed in front of my eyes and my heart screamed bloody murder at me.

What the fuck was I thinking? I already pushed it too hard yesterday- I demonstrated (craply cause I can barely stand by the evening) roughly for two new kids, and it almost broke us. It fucking hurt. Fifteen took over and got us into the car (Dad picked us up) and we spent the rest of the evening trying not to think of how much it fucking hurt.

Now I run up the stairs… and Mum catches the tail end of my stupid experiment and thinks I am RUNNING AWAY from her to HIDE something.

Yeah. I’m hiding the fact that the dog was upstairs cause I can’t fucking stand being so godsdamn lonely in the house all the time.

That’s all, Ma, I’m not hiding blades or a knife. I’m hiding my feelings here right now cause no matter how hard I try to explain the fact that hoping for a fucking end to my pain is like a death sentence for our emotions, you don’t seem to get it. Perhaps you’re exhausted with caring for our nana, and you wish something would go your way. Perhaps you want something to change and for our pain to vanish, and for something to finally start being right about 2016. For you, it’s been a bust, we know… but…

Hope has been a dangerous thing to us. We hoped for a more understanding answer on that appointment with the consultant than, “Well it might be IBS. Here, take two medicines that may or may not help, stop taking tramadol and you’ll probably be totally fine.”

Sorry, but no. One does nothing, the other froze our digestive system like it does when we get migraines. Eating better has helped a lot with some of our discomfort, but the fucking pain is the same. Like knives in our stomach. Like something small and with too many teeth is clawing to get out through an ovary, the right one. I think we ovulated the other day and Jesus, that was rough. Agony through one ovary (the left) and searing pain along our left hipbone.

So no, I’m not hiding anything. No, I’m not cutting- god knows my body is in enough pain without adding to it. Yes, I can run- adrenaline makes a fine taskmaster, though a dumb one. I pay for my mistakes in pain, and that’s why I walk with steps like I’m terrified to wake the sleeping monster. It’s because that fear is real.

Days like this, I cling to the future because living in the present, with no hope and a lot of pain, is torture.

 

I want to run, I want to lift weights, I want to tickle my friend’s kids without the searing pain from bending over. I want to wrestle with the dog without the worry she will jump up and -splat- her paw will hit the ovary that’s still screaming. I want to actually feel normal when I go up the stairs as opposed to getting half way and struggling for breath.

 

I hate being this ill and I hate having no options for relief. I want someone to come along and take the pain away, but currently, for the pain to go, we have to get 26 to use her iron will to force it away.

 

Problem is, it just comes back to haunt us later.

 

Current listening for today.

 

Something monumental.

Possible TW- miscarriage mentioned, abusive relationship, sex briefly mentioned.

 

Well, something monumental has just happened.

 

So, as some of you know, PTSD is responsible for messing up timelines, and DID doesn’t help (the dissociative element screws with time, too!). Also, as some of you also know, we have been dreading July because we thought that is when, at age 21, we lost a baby we weren’t even aware we were carrying. We had broken up with the abusive ex-boyfriend we’d been dating for 6 years, and the stress made us stop taking our contraceptive pill, along with the fact that we had goodbye sex (one of the times we actually wanted to have sex) and didn’t use any other protection. As a result, we must have been pregnant for a while, but lost the baby.

 

Something Dr K mentioned in therapy today- about did we have a date for the miscarriage- rang a bell. We realised that we all WANTED a date. We wanted to remember the baby properly, as a real little human being who would, by now, be four years old and proud of it. So we went home and began trawling through emails, Facebook timelines and messages, and trying to piece a jagged puzzle together.

 

We worked out that the audition we went to take when we stayed with the ex was on the 15th June. We stayed with him possibly for about five days or so, during which he told us he couldn’t be with us any more. We had, ironically, the best few days of our relationship whilst we were together, and then on the day we headed home, he left us crying on the underground after one last kiss goodbye. After that found emails from us to a teacher talking about arriving in Paris to perform as if nothing was wrong, dated 3rd July. We stayed in Paris to perform until the 10th July, when we went home again.

 

We had always thought it was July where we lost the baby because there’s a poem we wrote, partially about breaking up with him and partially about losing the baby. That’s dated the 21st June 2011. We thought it meant that we had miscarried about then, but that, we have realised, doesn’t seem to be the case.

 

We realised, whilst talking to the Dutchman tonight, and whilst reading the journal that 26 wrote back when she was 23, that actually we miscarried right before we flew out to dance in Paris. We miscarried in June and pretended everything was completely fine in Paris, and grieved like hell all July. We left Facebook for a few months, only returning in September, but we saw various posts on our timeline in June and July. They’re all wondering where we were.

 

We were grieving, trapped in our minds and wrestling with the fact that there had been a baby in our womb and now there was nothing. We were probably anaemic, we were exhausted, we were running purely on adrenaline in Paris. We pushed the grief aside, loved our stay there, then returned to the horror that waited at home- grief denied, held back, becomes at least twice as strong.

 

We talked all of this out loud and the Dutchman listened. We cried, a lot. We realised that our timelines have been upset because trauma does that to you, so it is in fact this month where we lost her.

 

Yes, her. We think our baby would have been a girl.

 

A few months back, when we were fit and well at the Gym, we had befriended a cleaning lady. She was absolutely lovely, and had found a ring we lost. She knew that the Dutchman was the right person for us because she said she “had a good feeling”about him, and that he was lovely- not that he looked lovely, that he was. It was just as we were about to leave that day that she said, “Stark, do you have kids?”

“No,” we replied, puzzled, “why?”

She said, “Well, I’ve got the second sight, me. I’ve always seen things that aren’t there. I just asked ‘coz every time I see you, I also see a little blonde-haired girl with you. She’s about four, and she’s got blue eyes and she’s wearing a pink dress.”

We were, of course, floored. Nobody knows about the miscarriage but a tiny handful of people. This lady is an acquaintance we have met at the gym. She knew next to nothing about us, but yet…

We let her know that it was lovely, and we hoped it was a future child she saw, when all of us just knew that she was seeing the child we lost.

 

We told the Dutchman this story too and his jaw dropped for a couple of seconds. He seemed both pleased and shocked. He asked us if we had a name for her, and we said we never gave her one. I think that’s because 19 and I have locked the hurt away in us for such a long time that we didn’t want to let it out again, because the grief we feel when we think about our baby is wild and untameable and will ravage us if we let it. We have always kept the fierce love and the grief that goes with it locked up. Fourteen and Fifteen are different, they’ve always talked about their desire for children and how much they love them. The two of us thought that it was too painful- we all dealt differently.

 

We also let the Dutchman know all of this, and also that we probably would have had a set of names that we would have chosen from once she was born. We thought we would have three names, maybe, and choose the one that suited her best. He has been experimenting with hypnosis with us for a while, because it eases our anxiety (and helps with other things too) so he asked us if, using hypnosis, we would like to see her face and try and name her. We readily agreed, through our tears.

 

The Dutchman put us under, a sensation that’s pleasant and calming in equal measure. We began to stop crying, and breathe deeply. He talked to us until we were far enough under that he could begin to ask our subconscious mind to imagine that there was someone else in the room: our daughter. Not only our daughter, but a four-year-old version of her.

 

Immediately we were in floods of tears again. We described her to him. She had strawberry blonde hair, and thank gods, she’d turned out with hazel eyes and not the ex’s brown. She had freckles, a few on her cheeks, and thick dark lashes- also his, but more than that, it didn’t matter. She was ours.The minute we saw that cheeky face, we knew her name.

 

Fay Alice.

 

The Dutchman got us to imagine that our little Fay climbed up onto the bed to cuddle her mummy- us!- and then, she had to go. It wasn’t too awful to let her go. We had a potential date now, for when we lost her, and now she has a gender and a name. We have decided to celebrate her life when Monday night next week comes around. The Dutchman told us he was so proud of us, and he was incredibly honoured that we seemed to be able to take huge steps like this, based on the foundation of the relationship that we have with him. He’s not wrong. He makes us feel incredibly strong and powerful, as if we can achieve anything because he will always support us.

 

Nineteen and I have been moved by this. The younger two are thrilled- because, it seems, Nineteen and I have reached a decision.

 

We had been trying to decide between the five of us whether we were going to have kids or not. Nineteen and I had been trying to draw up a rational explanation for having kids, and one for not having them. We thought that if we had a morally correct reason for having children, we would be ok and we could have them.

 

What we both forgot was that behind the locked door with the grief and pain was intense, overwhelming love that literally obliterates any obstacle. We adore that child that never was, our Fay. We love her so much it would burn stars to black holes. That would be the last thing in the equation- we would love her so goddamn much. Having kids IS irrational, it’s the best kind of irrational. That irrationally strong love for her will guide us through.

 

The Dutchman said that if she had made it, he would have loved her too, and helped to raise her.

 

That settled it for the two of us. Nineteen near broke us all (in the best way) when she told the Dutchman we could at least try to have kids.

 

Fourteen and Fifteen haven’t been this excited for such a long time. We were all in floods of tears of happiness, they were too, whilst jumping up and down and being insanely happy. They just have always wanted to be a mum. The Dutchman cried. He told us that we keep making him cry, but that it’s a good thing because it helps him feel the depth of his love for us. At this moment, though, he was crying because he was thrilled to bits. He has also always wanted kids.

 

So, my little Fay, you are precious and special. You have a name. You are a human being that we got to have in our lives for the smallest amount of time, but you have made a huge impact on your grieving mothers. We saw you in our mind’s eye, and you have made us remember the incredibly overpowering love we have for you. We wanted to watch you learn to walk. We wanted to sigh, wipe banana from our clothes and try again. We wanted to brush your hair and kiss your little head and post you through the school gates, trying not to cry. We wanted to see your first tooth, your smiles as you watched that video you liked again and again and again and again. We wanted to count your toes, read you bedtime stories, prepare you for life… and, even though you’re not here, we have realised that we can have all that. It may not be with you, darling, but we will remember you if you have a little brother or sister. We will see you in them.

 

Thank you, little Fay, my ethereal Will-o-the-Wisp. You are so incredible. Mummy loves you very much- mummy 14, mummy 15, mummy 19 and mummy 26.

That week I had where I realised things are different, now.

Hi all… Please just be careful whilst reading this. I talk about the cyst again and a couple of other things that might be difficult to read. Stay safe.

 

 

So, Sunday came round and we did manage to fly out. Getting through the airport without assistance was hell. I actually asked when we were on the plane if I could have assistance at the other end, and luckily I was given some- I was wheelchaired right into the Dutchman’s arms. I was so thrilled to see him: we all were. It was such a relief to be able to hold him close and kiss him again. We always miss how kind he is, and we crave the physical closeness he gives. It makes us happy to be able to reach out, grab his hand and kiss it, pull it close to our cheek and feel his fingers on our skin. We love that he is so patient, so kind.

 

He wheelchaired us all the way to the CARDIS (yes, that is what we have decided to call his car! He could fit a swimming pool and a library in the boot!) and drove us home. I kept looking at him, smiling. We knew that even though our journey had been very difficult, we had him now. What could go wrong?

 

Going back to his house, it was great to see his parents again and the cats (he has two adorable fluffballs, snuggly and also full of character). It was amazing to climb into bed next to him, to sleep wrapped in his arms. This is what we are all working towards- all four of us want to end our day asleep next to him every day.

 

The next morning (Monday), sadly, we woke up in a lot of pain and discomfort. Turns out that if you will a cyst to go away by just doing stuff you could do before you had it, it screams bloody murder at you the next day. Mostly,. the day was spend lazing around in bed, cuddled up next to the Dutchman, or in the comfortable chair next to the computer where we both played XCOM. Damn, that game is fun. It helped that both of his parents are completely happy to let us just chill together, and they enjoy my presence in the house. We all like being there- it’s such a calm, restful environment.

 

Tuesday was a little better. We started to be able to walk with a cane. The pain was still there, but the Dutchman helped us to walk and we managed to overcome the pain for long enough to go and visit his auntie. She’s not well at all, and is thinking of leaving her house and going to live in a care home. She would like the Dutchman to inherit the house, and all of us liked meeting her. Her and her husband were huge fans of animals, have been all their lives, and they used to work for an animal rescue centre. They own a Bosnian dog, who has obviously seen horrors that no person or animal should ever see- she flinches when you make a movement. It doesn’t have to be sudden. Slowly, however, she began to trust us more and more, and eventually wanted the Dutchman and I to take her for a walk as we were leaving. The Dutchman’s Auntie wanted him to have the house because two cats live next door, and she is convinced that he will look after them when their owners can’t (or won’t, they apparently sleep in a box filled with hay in the garage. If you don’t want to have a pet in the house, don’t buy one!). I also think she wants him to have the house because of the kind person he is, and because of the rough time he has had finding employment in the field of work he studied in.

 

Wednesday morning wasn’t too bad again, but  showering and brushing teeth and washing our face was, and is, such an effort. The Dutchman helped us by supporting us in the shower. This is something we are not used to, seeing as we all are scared of the shower in varying degrees. Me, nineteen, I hate being touched by anyone but me in the shower. Twenty-six doesn’t like soap in her eyes and ears and being unable to defend herself. Fifteen isn’t comfortable with nudity, and Fourteen still feels a little strange when getting in the shower with a guy- she feels like she will be told off at any moment, although she wants to be in the shower. However, the showers we all had with the Dutchman have taught us something: this can be a nice process and it doesn’t have to be frightening. He lets us do what we need to do (like washing our hair, which we hate anyone but US doing) and helped us stand up when we felt weak.

We started to realise that actually, what he’s done for us all week has become our carer. We were horrified. We are trapped like this for no discernible reason, with palpitations and erratic heartbeat and nausea and anxiety and crippling pain, and he is shouldering the brunt of caring for us. We all realised that and were horrified.

Going to the house of a friend of his for dinner was a lovely change, and meeting her husband and three gorgeous kids was fantastic. I am still surprised we all managed to stay awake as long as we did. We loved the meal, although we were in pain, and it was so good to meet his friend- the Dutchman has talked a lot about her.

 

Thursday, and time for my parents and sister to come over. Again, we had to use a wheelchair, and the Dutchman pushed us all the way through the airport. Picking up my parents, we realised we were too tired and weak to get out of the chair. We all had food together, where the four of us ate a sandwich that would normally have been no problem for us, but right now it filled us up too much. The Dutchman made my parents, sister and I laugh, and there was light-hearted chat despite the wheelchair at the table. Having them meet the Dutchman’s parents was brilliant. Sis, the Dutchman and I went to the local supermarket, complete with cane, although I had to rest on quite a few occasions. We all had an absolutely brilliant time and a great laugh. We all agree, the four of us, that Sis and the Dutchman couldn’t be better suited as brother and sister-in-law (eventually!).

 

Friday resulted in more exhaustedness, because we had walked the day before. It was good, however, to be with our two families as they made friends and got to know each other. The sun had begun to shine pretty forcefully, and we had an outing to the local shop. The wheelchair came in super useful again, and I eventually became the trolley- we forgot to get bags, so we used me instead! Spending time out in the wheelchair slowly became more bearable, even more fun, and we explored Leerdam in the chair with the Dutchman pushing us around. Sis came too. We stopped off for a small pastry in one of the local bakeries, which was pretty awesome. The sun was warm, and there was a slight breeze. It got so pleasant outside that we ended up being able to sit out after dinner.

 

Saturday dawned and I struggled to get up. We all took turns that morning in ‘fronting’, which is our term for taking charge of our body. The Dutchman helped us change and brought us our meds, as usual, and we ended up being ready for our outing to a town on the German border. The reason? A friend of mine that both 19 and I have known lives in Germany now, with his partner (who is German, that should explain a few things!). The city we went to was the closest to everyone involved. We had the best day out, sitting in the chair, although it got incredibly hot! It was nice having all the family out too, there to enjoy the sun and meet our friend and his partner. The Dutchman has met them before and gets on like a house on fire with them, and we all have a lot of fun together. It was so lovely to be with them again, we didn’t realise how exhausted we were until we got back home again. We actually went out to eat that evening too and suffered serious pain from the cyst- reaching up to get plates absolutely floored us. Tea was delicious though, and the Dutchman kept wheeling us wherever we wanted to go in our wheelchair.

 

Sunday was a day of sheer exhaustion. We looked at the amount of medicine we had taken all week and were shocked to realise we were running out of some of it already. The Dutchman never stopped being kind and thoughtful, helping us with anything we needed. It doesn’t matter, he never tires. We had some laid-back fun, enjoying ourselves with our families and having a good laugh. In the evening, my parents, sister and I all piled into the Dutchman’s car and we went to see his brother and his partner, and their new little girl. She was born at the tail end of April, my birthday month, so we are already April girlies together… not only that, we will LEGALLY be her auntie when we are married to the Dutchman next year. She was gorgeous, so tiny and perfect, those little fingers grasping for mine already as she lay in her crib. Her mother is the perfect mother- she is so well-prepared for her, so perfectly able to respond and she knows instantly what cry means what. I’ve never met anyone else who gets tiny babies like we do, but she certainly does. In some ways, tiny babies are infuriating and occasionally impossible to figure out, but we have always found them easy… well, easier than two-year-olds!  We were all enchanted, family included. The Dutchman was the picture of the proud uncle. It made us melt.

 

Monday came, and so did horrendous palpitations. They were so bad, we spent most of the morning almost passing out, with the Dutchman snuggled up to us on the sofa, helping us be distracted by XCOM. We rang the airline I flew with and discovered that we needed to go and get to the airport earlier to ask for assistance, which we did after the Dutchman had packed our case up for us. He was amazing- he managed to fit in our new purchases, and also the wool that Sis had bought for knitting with! There was a LOT of it. The airport had, when we arrived, already been notified that I would need assistance, and what then followed was a very pleasant afternoon spent wandering (or wheeling) round a couple of the airport shops, sitting waiting for my parents and sister’s flight in a cafe, then the Dutchman and I waiting for ours together. We did not want to say goodbye to him. We had, despite things, had a brilliant week together.

 

He kept reminding us that we were not a burden. Supporting us in the shower, we were strangely unafraid. We only needed to ask him for something and he would run and get it for us. He carried us to the wheelchair when it arrived. He is everything I thought didn’t really exist in the real world, but we are all finding out that the younger two’s hopes for a true gentleman are, in fact, completely justified.

TW: No help from anyone

Just a word of advice- don’t get sick in the UK. Just don’t. I am not allowed a second opinion of the golf-ball sized cyst on my ovary, I’ve been told to go to the GP if it gets worse or stays the same. The GP today then told me that I should go back to hospital with the cyst and parroted the same thing as everyone else- apparently this will go on its own.

I can’t fucking work! All of us are in horrible pain. We used a wheelchair to get around last week. We can barely walk unless we use a cane. We are feeling sick a lot, we don’t want to eat, we are tired after a tiny bit of exercise…

But no, apparently we are just a set of ovaries and might want kids some day, so there will be no surgery to remove something that is fucking up our life RIGHT NOW.

Don’t get sick in the UK, just don’t.

TW: Hospital.

Hi all- massive TW for this post. We discuss hospitals and various traumatic things that happened there. Shout out to the nurses, who were wonderful in every way.

Monday the 9th May. We are in the gym, feeling happier than we have done for a long time. I’m on the leg curl machine, and pull myself up higher on the machine- there’s a sharp pain on the right hand side of my lower abdomen, and suddenly a gush of blood. We freeze. What. The. Fuck.

The pain is too bad to do another set. We are upset as we climb off it, and head for the chest fly machine instead. We do a couple of sets before the pain gets even worse, and then realise we aren’t well enough to keep going. We finish up, go home, and try to deal with the pain. We go and teach, too.

Tuesday 10th May. The bleeding and pain is worse. We feel awful, and triggered, and the younger ones have realised that we are not on our period. What the hell is happening, they want to know? I explain to them that it’s the ovarian cysts that caused us so much pain last August, and they are still scared but get it. Nineteen is feeling upset and unable to eat. We still go teaching, in awful pain, but we feel like it might just go away by itself… We hope.

Wednesday and Thursday, 11th and 12th May. The pain is pretty much unbearable. 19 has her flip out and we are all exhausted, in pain, wrung out and needing rest.

Friday 13th May. It gets so bad, we call the NHS non-emergency number. They are concerned by our symptoms and try and get an ambulance out, but we end up going to hospital driven by our Mum. We’re all scared at this point. The Dutchman arrives, and we spend the whole time after mum has to leave in his arms. Sadly, we are discharged with painkillers and sent home to book another ultrasound scan.

Saturday and Sunday, 14th and 15th May. We exist in a haze of pain. Making breakfast on Saturday, we pass out and the Dutchman carries us to the sofa. He continues to care for us in every way over the weekend, taking our minds off the horror that’s going on in our own body.

Monday 16th May. We end up at the GPs, and she’s so concerned that she sends us to the hospital. We have to go through an internal exam. It’s one of the worst things we have ever experienced. The Dutchman kneels beside our head, squeezing our hands and telling us it’s ok, we are safe. It hurts. He tells us he’s still there and he loves us, and he isn’t going to go away. We are admitted and they arrange an ultrasound scan for the next day. The Dutchman has to leave, but he Skypes us when he gets home to make sure we are ok.

Tuesday 17th May. The ultrasound shows a golf-ball-sized cyst on our right ovary, just like we predicted there would be. We knew there was a cyst. We have all been feeling unable to eat, and the pain is on the one side. However, we have a sinking feeling about this. Although there’s no cancer detected, we suspect that it is probably not going to make the doctors do anything. Later on, we try to get out of bed because we think we’re going to throw up, and pass out entirely. When we come to, there’s a concerned team of people present and a doctor there, and a drip and cannula in one hand. The younger ones hate that. It hurt for them to get it in because our hands are so bony. Nobody knows what to do about the cyst, nobody has any information or advice for us. We are point blank told that there’s no way to prevent cysts and that it’s not being drained.
Wednesday 18th May. We realise the only way to get any advice is to ask for it. There’s an amazing nurse who eventually comes to talk to us and give us options to help prevent the cysts from coming back. We are released with a handful of painkillers again, and told not to worry, all women get cysts due to their monthly cycle and sometimes, some women’s hurt a bit. This is past that, though. There’s a golf ball sized cyst sitting inside us and refusing to budge. It’s been there over a week. We are all scared and hurt and upset, nineteen is fuming, we all are at our wits end.
Thursday 19th May. A week since nineteen had her meltdown. The cyst is still there. We are glad to be home, but the full horror of hospital has started to sink in and we’re terrified of what we remember. We all continually flash back to the internal exam. It was horrendous. For any person who hasn’t been through trauma, it would have just been embarrassing and uncomfortable, which is bad enough. For us, it was torture.
Friday 20th May, today. We are sent a letter informing us that due to the fact we had been in Accident and Emergency and were prescribed medicine, we are to be charged for this. £8.40, “as you would be if you had visited your GP.”
The callousness of this hurts us. We were in A and E because we were really ill, not swanning in complaining of a common cold. We don’t mind paying, but there was no expression of sadness for us having to be in A and E, and the letter is callous in its tone. Moreover, we are scheduled another scan and an appointment for something not mentioned in the letter in June. JUNE. That’s a long bloody time to be left in pain. There’s a little unconcerned light-hearted statement about having an internal scan, and the probe would be, “about the size of a tampon. I don’t care. None of us do. We are not having anything like that happen again. They saw the cyst on a normal ultrasound, that internal one is unnecessary and downright abusive.
We can’t handle this. We have been thoroughly retraumatised by the whole experience. The Dutchman has offered to ring them for us and find out why there are two dates on the letters, and to explain that there may be adverse reactions to demanding inappropriate scan techniques. The letter mentions the normal way of scanning first, which we are fine with. Why is there the need to be so flippant about the internal scan?

 

We’re all really struggling and upset still. On Sunday we are supposed to be flying out to see the Dutchman. We hope that it works out ok, if the cyst bursts in mid-air we will be in trouble.

 

The only thing that’s comforting us right now is the thought that in two days, we get to be with him again. There’s our dog curled up with us, and our family have been very supportive. We are just praying that the pain gets no worse.