It’s getting easier

This week, since the acupuncture, has been so good physically and mentally for me.
Its like a big cloud has been lifted.
I feel so much more able to tackle life in general.

My achievements this week seem so minor, but they’re incredibly to me. For a start my drug consumption has dropped right down.
I’ve taken some paracetamol on weds for a headache and 30mg of codeine yesterday because I knew it would involve a lot of sitting.
That’s a massive drop from needing 60mg of codeine a couple of times a day, plus tramadol at night to sleep.
Why didn’t I try this sooner?
Screw traditional medicine if this stuff works and I don’t have to fill my body with drugs then I’m all for it
Yesterday I went to the hairdressers, did a spot of window shopping and carved some pumpkins . All things I wouldn’t have been able to do a week ago and wouldn’t have even dreamed of trying to complete in a day!

If this keeps up then I’ll finally be able to go back to pole and the gym and generally get my life back.
I’m going to party hard at Nicky’s wedding too to make up for missing the hen do.
I’ve missed out on so much fun stuff the past few years. I have a lot of making up to do.

On a side note, I got a text from TrekFest about early registration. Oh how I laughed!
NEVER AGAIN.
I was not well enough to do it when I did it, and I shall not risk it again.

Also I’ve looked into doing some dressmaking and photography courses next year instead of stressing myself out with a masters. I need to do some fun stuff for a bit. Fancy dress and photography make me happy. I need to do more of that as well as getting out of the house.

I had nobody to play with for Halloween last night so had to carve pumpkins with my mum. I say with mum but she finished before I’d even started. I think this is reflected in her design…

 

Woop

Holy moley. Something short of a miracle has occurred. 

I slept through the night and haven’t taken any pain killers all day!

I can’t remember the last time I didn’t wake up in the middle of the night in agony nor managed to sleep on my left hand side. I was quite amazed when I woke up and realised these two things. Also I’m not wanting to puke all the time which is nice.

Don’t get me wrong. I’m still very sore and a bit nauseous but I only take drugs when I absolutely have to and I don’t have to drive in the next hour or so. Today I plodded through without uttering the words “kill me” under my breath after I’ve done something that’s pushed me a bit too far.

How on earth did this happen you ask? Well that involves a bit of magic. 

Last night I paid a visit to an old work colleague who is very into holistic therapies and dabbles in a spot of acupuncture. It’s only bloody well gone and worked!

I had a few needles in my legs, feet and ankles as well as my tummy, whilst some smelly herb was burnt and held over the sore bits. 

There was also this weird electromagnetic machine that got rubbed on my ear, making odd noises when it touched a bit that indicated something was wrong and then had an electrical pulse ran though it. 

I can’t explain it very well. It’s something I think you have to experience to understand but whatever Dave did yesterday clearly made my life easier today and I am very grateful. The more we can do to relieve the pain before they start ripping organs out, the better. 

Also in other news I can essentially never run out of tramadol or codeine thanks to my awesome GP who put it on repeat prescription. 100 tablets each, whenever I run out. Hoorah!

A little bit of hope

I had yet another appointment today with a gynae doctor. This gent was far more pleasant than the imbecile that told me it was IBS (I keep seeing him and his small man syndrome around the hospital. One day I may accidentally hit him with a trolley. See how he deals with pain!)

He couldn’t figure out why I was seeing a doctor so soon after the last appointment but went with it anyway. (For the record I had nothing to do with Saturday’s appointment. That was all mothers doings)

He definitely helped clear up some stuff that was discussed at the weekend.

For a start these hormone injections are as much a diagnosis tool as they are a pain management one. If after 3 months there is no improvement then it isn’t a hormonal effect causing the pain and therefore it’s not my baby makers that’s the issue.

Hallelujah!

But on the other hand, that means if I spend the next 3 months in pain, we are no closer to finding a cause!

Apparently the endometriosis they found was macroscopic. Meaning it couldn’t be seen and it was only picked up thanks to the biopsy. Which clears up any mystery revolving around why it wasn’t seen in the previous two ops.

So in short, we are not much closer to being any better but far less panicky about the future.

In the meantime I have emailed a specialist bowel clinic in Birmingham asking about possible tests they can do to help me. I’m willing to let them shove a camera/barium/anything up my bum if it helps get to the bottom (teehee) of this once and for all

And then it hit me…

I’m sitting at my desk, trying to do some homework for my cognitive behavioural therapy session and I just cannot concentrate.
The reality of what was discussed on Saturday has finally sunk in.

If these injections don’t work I will be faced with yet another operation next March at the latest.
If that, combined with having the coil fitted, doesn’t work, this time next year I will be facing the possibility of having a hysterectomy.
I will be 30 years old.

I was once dumped by a guy because I was told my fertility may be an issue due to my PCOS, previous infections that have left me with scarred fallopian tubes and the surgery to my right ovary.
At 26 I was told that it may be very difficult and to start an IVF fund.
It has never been confirmed that I can not have children.
This guy broke my heart on a possibility that “it may be difficult”. How can I get into a new relationship and trust that they wouldn’t do the same?
At what point do I shatter their dreams of a biological family by telling them I have had a hysterectomy?

The one thing women are “supposed” to do apparently, is to have babies and I wont be able to do that if I go ahead with the surgery.

It’s one thing choosing not to have a kid, but another having that choice taken away.

My current 5 year plan for example, included adopting in my mid thirties, but now that I’m faced with the possibility of having such a drastic and final surgery, I no longer know what I want.
Do I want to experience the whole pregnancy and childbirth experience to be selfish and have my own child or do I admit defeat and resign myself to the fact that maybe its just not in my destiny?

Where do I even find a father for this child?
Sperm donors are expensive and you never really know how weird that person actually is.
Do I ruin a friendship and get the goods from a trusted source?
A wonderful source of DNA agreed to be a donor but I fear he said it out of pity and wouldn’t seriously be prepared for such a responsibility.

The idea of freezing my eggs in order to use a surrogate terrifies me.
At any point they can change their minds and keep the baby! They are the legal mother of the child until a parental order or adoption has been completed.
An adoption agreement has no legal standing. How awful is that?!

I was meant to start a masters programme in January. Is that something I’m going to be able to complete whilst still going through all this unknown?
How would I deal with that and a kid?

Being a good mum is all I’ve ever wanted to do with my life but I dont know if I am ready for that right now.
At the same time, I really do not want to miss out on the opportunity to have my own child whilst I still can.

This is all a bit too much for me to deal with to be honest.
The depression was already making it difficult to concentrate but now its even more of a struggle.

I’m hoping beyond hope that they find something wrong somewhere else and all this can be forgotten.
I’ve been through enough of this now thanks. Its time to stop.

Ultimately though, I’m going to run out of options for pain relief and will have to start making hard decisions a lot sooner than I had ever dreamed of doing

The first injection

Look at the size of that bad boy!

It hurt a lot and will trick my body into thinking it’s going through the menopause. All the fun!

Adding this to my quarterly B12 injections and all the other drugs I’m taking, one day I should be kind of human again.

Sorry this post is really short. I feel too dizzy to stare at the screen anymore but thought you’d all like to share in the horror of the huge needle that was plunged into my abdomen to deploy the hormonal implant.

Another day, another doctor

I don’t know how she did it but mum got me an appointment with the gynae consultant that operated on me in July, on a Saturday morning.
After waiting in a chair for 40 minutes I was suitably sore and upset. (The only way I’m comfortable is laying on my right hand side, curled up as tight as I can)

She is honestly one of the nicest doctors I’ve met on this journey. Which I guess isn’t difficult because I have met some royally rude and uncaring ones.
She didn’t make me feel like I was going mental and imagining or exaggerating the pain.

Her conclusion was that endometriosis is the cause of my pain (despite her registrar on thurs telling me it wasnt because it wasnt happening on a cycle, with my period)
She gave me four options to consider to try to manage it….

1- Another operation. Have another look at the extent of the disease, burn the endometriosis and any new adhesions.
2 – The coil
3- Hormone injections
4- Pain management clinic

We chatted about each option and mum made it pretty clear she didn’t want to see my going through another surgery or having the coil fitted (thanks to Sandras horror stories). I’m at the point however, where if you told me chopping off my leg would fix me, I would happily agree to it.

Despite the fact they may make me feel like I’m going through the menopause, I’ve opted to start with the hormone injections.
I’m hoping they aren’t the same as the one I had put in my tummy in July, because that did absolutely nothing but give me hot flushes.
In addition to this she has finally put in a referral to the pain clinic. Not that that was any use before. They put me back on antidepressants and made me eat the blandest diet in the world.

I asked about being referred to a gastrointestinal surgeon for a look at that avenue too after my GP suggested it as a next step. There has to be a reason for the recurrent impactions. They coincide with the pain and seem to happen before I’ve even started taking any opiods.
No body has ever bothered looking at my bowels as the cause of the pain, which is ridiculous. So I’m happy we’re finally at least going to get an opinion from that side of things.

In the meantime I am meant to start the injections tomorrow and continue to have them every month for 6 months. If they don’t help then we try the coil.
She’s recommending putting me under general anaesthetic to do this as I struggled with the ultrasound probe last week. In my defence, she had terrible aim. As a midwife training to do ultrasounds, she shouldn’t have had a problem finding a vagina, but dear lord she struggled and just stabbed that probe at me!

If the coil doesn’t help then I’m left with pretty drastic options. Removal of ovaries or the whole lot.
Not really something I thought I’d have to consider before even turning 30.

Mum suggested in the next 6-9months I go have a couple of one night stands and get pregnant. Then apparently I wont have to deal with the father,” it’ll be easier”!
Who was this woman? My mother is a massive prude and now shes telling me to go out and have unprotected sex with randoms? What the hell?!

Her other suggestion was finding a friend who could donate some sperm before telling me about her friends lesbian daughter who had a baby with her gay friend and maybe I should try that.
Mums ex husband’s son is gay and therefore he would be a good option apparently.
Jesus. I dont know what got in to her but she seemed pretty insistent on a grandchild, living in her house, with the two dogs, two tortoises and probably my brother when he gets home too. Where the hell are we getting the money for this child I asked her- her response, we’ll manage “theres loads of cheap stuff these days. Plus car boot sales”
I’m lost for words. Shes being serious and I don’t like it.

So thats where we’re at today.
I feel dizzy and sick, as well as incredibly sore, and I havent even taken any drugs today. It fun this mystery illness lark.

Also. What on earth makes people think its ok to tell you horror stories of people they know with mystery illness?
A guy at work told me that his wife had been going through something similar in terms of being pushed back and forth between doctors with no answers. She was getting out of hospital later in the week. A mental hospital!
The whole thing had given her a mental breakdown!!

Thanks buddy. Thanks for that story

Also, Masson decided to remind me of his dads mystery illness….his dad died.

Oh and theres the one the consultant told me today. Woman in her 40s had a total hysterectomy to try to cure her pain.
It didn’t work in terms of pain management and she’s still suffering.
Yay.

So in conclusion my loves, if you have a horror story about something similar, keep it to yourself. I don’t want to know.
Only happy endings please. I need glimmers of hope in this otherwise bleak experience

 

Here we go again

That last post was the beginning of a bad week.
The tight pulling feeling and the stabbing pains didn’t ease. I continued to feel on the edge of constantly vomiting and started to panic that I’d have to go through the same old shit over again.
The operation in July was supposed to fix me. Its too soon for it to go wrong.
I tried to tell myself that it was just because my routine had changed, I’d just got back from NZ, I’d been eating differently, I’d started a new antidepressant, but other people werent so convinced.

At work on Wednesday I casually mentioned to Matt, the ED nurse who made me get admitted last time, that I was feeling rough again. He took my blood pressure and heart rate, which were both high and I panicked about what I should do.
The bit of my brain that’s worried about money and having just spent 3 weeks off work, plus the 7 weeks sick before that, wanted me to just carry on working.
I was convinced not to listen to myself and got booked into A&E.
My heart rate averaged about 100bpm which I think is a little excessive.
And here starts the process all over again.

Bloods were taken and I had a finger shoved up my bum yet again.
I was a tad worried I was obstructed as until that morning I hadn’t been to the toilet in a week and when I did it was pretty much just water. That sounded a bit too much like overflow to me, however I wasn’t vomiting or even bloated this time.

They tried to admit me but I refused as I knew no doctor would see me that evening  and I have all the drugs I could need at home anyhoo. Plus mum is away I had to be back for the dogs.
They agreed to let me go home and come back for a gynae assessment the following day.
I had the worst nights sleep. The pain kept me up til nearly 5am. I had to resort to taking tramadol and oromorph to try and make it settle. This made the dizziness and nausea worse.
I was pretty scared about going in because I was sure they’d try and make me stay as I was failing at keeping the pain under control.

Oh how wrong was I!

I had an ultrasound, which lo and behold showed nothing!
The not so friendly doctor then told me the issue wasnt gynae and I should see a doctor about exploring IBS options. I told him I’d been through all that stuff and he told me that I hadn’t, without offering up any actual real advice of things to explore.
This fuckwit is apparently training to be a GP, good luck to his patients.
I asked if maybe I should have an abdo xray. He said they wouldn’t xray for impaction and despite me telling me they would, he refused. No offer of referal to another department. Just go home, there’s nothing we can do.
I cried and he got arsey with me. Just like he got all defensive when I said the pain was just below my ASIS. “How do you know what that is?!”
Not just doctors know anatomy you wanker. I’m fairly aware of my own body by now, its been through a lot. I know somethings wrong and I know you’re not trying nearly as hard enough as you could to help me.

I cried hard for at least an hour or two.
I felt like I was going mad. Yet again just being told pain happens, get over it.

I saw a GP the following morning because I had to get this sorted. He told me he used to a general surgeon and that he agreed that something was wrong, it wasnt gynae and it needed to be looked at.
He phoned the hospital and had me sent in to Walsgrave to get a second opinion. A surgical one.
The guys were lovely. They actually listened despite seeing me before they assessed my axr. Yes, someone actually ordered some imaging that may help!
As before, my bloods were fine and they didnt know what was wrong. So I asked about the axr, was I obstucted?
They hadn’t seen it so went away and came back. The consultant looked pleased as punch. I dont know whether it was because he didn’t have to admit me or that he was the one to finally find a problem and solution.

It was just a bad case of faecal loading. So yeah, I did have overflow the other day and no an ultrasound of my ovaries was going to be fuck all use to anyone!
Neither doctors fingers up my bum were any use in finding poo and indicating constipation as it was all a lot higher than that.
His solution was the biggest box of laxatives I have ever seen as well as some sachets of Picolax (the fun stuff they give you to clear you out for colonoscopies etc)
Yay me.

I took twice the normal dose they give you in one hit and tbh I don’t feel much better.The tight pulling pain is still there, but Im able to eat without feeling like it’s coming back up my throat. Its nice to not feel so sick all the time but it would be wonderful if the pain went away too.

Cant tell you how scared I am to go through all this pain lark again. Its only been 3 months since the last operation. These adhesions are trying to push me over the edge.
Well that and New Zealand.
Everytime I’m in that country I get sick!
I was only there 3 weeks, had an ear infection the first few days and then come back with this.
Its safe to say I will not be going back there in a hurry.