A breakthrough or a backfire?

Hot topic alert!

As many of you will already know, today the news has broken of a company claiming to have created a blood test, which can detect Endometriosis. The company claims to have found this to have successfully detected it in ‘90% of cases’ (Read more: https://www.itv.com/news/2019-04-02/new-blood-test-for-endometriosis-detects-up-to-90-of-cases/)

When I first saw this article pop up on my phone, (after I’d checked the date it was published to make sure it wasn’t a delayed April Fools!) I felt a surge of happiness! Finally, something positive!

Too many of us know that the average diagnosis of Endometriosis takes around 7 years and the only way to diagnose is through an invasive Laparoscopy. This blood test could have to potential to reduce the diagnosis time dramatically, so that more women have the answers they need sooner. How Brilliant! Moreover, the need for invasive surgery for diagnosis is less likely.

However, I thought more about this as I re-read the article. First off, I am in no way an Endo expert and am only voicing my own opinions on the article. In my personal experience and those of women who I have spoken to/ read stories of, when a laparoscopy has been performed for diagnosis of Endo, the surgeon and the patient have usually exhausted all other possibilities and expects to find Endo- in which case, excision or ablation is performed. Does this mean that this new blood test could actually delay treatment further? Or will it serve as a time saver for those without the disease?

My other question is, will this make Doctors more alert to the possibility that a patient might have Endo? When I was 15 and my symptoms began, several Doctors and consultants were convinced my issues were either all in my head or to do with my bowel. It took them 7 years to even consider investigating anywhere else, even when I insisted. During this time, I lost count of how many blood tests for Crohn’s, Colitis and Coeliac disease I had, alongside scans and colonoscopies. Will women who experience similar symptoms to me have the same problem? Or will this new blood test be an option offered to them?

My final ‘bugbear’ is this quote from Dr Christian Becker, from the
Department of Women’s and Reproductive Health at the University of Oxford. He stated,
“Endometriosis not only causes enormous suffering to the affected women, but also brings a tremendous medical and economic burden to bear on society…”

Now, I understand that diagnosis and treatment for Endo is expensive and could be seen as putting a financial strain on the NHS, as is the case for treatment of any illness or disease but the term ‘burden‘ is a little insensitive in my opinion. Women who struggle with this disease are not a burden. We do not have a choice. We have to fight for answers and limited treatment. To describe this as a burden is incredibly offensive to me.

I appreciate that many will have different views on this topic and I really hope that this new blood test is a success and will provide more women with answers and options for living as much of a normal life as possible. I just think there still needs to be a much higher awareness of Endometriosis.

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There’s nothing more lonely than being in pain

It’s been nearly two weeks and I’m struggling to see much progress in my recovery. I have managed to get a bladder infection, spent a LOT of time with my head down the loo and had minimal sleep.

People keep telling me that sleep is a healer and I really need some healing- so why can’t I sleep?! I’ve developed a new symptom- an excruciating numbing pain in both my legs as soon as I lay down (google tells me this is very common in Endo warriors) WHAT IS THIS AND WHY NOW?!

Today was supposed to be my first day back to work but I’m now on delay until at least Wednesday (and even then people keep telling me this is too soon).

Above all else, the thing that’s troubling me the most is my guilt. I’m battling with not being able to go to work and knowing that others are having to pick up my slack.

I’ve gone through the vicious cycle of feeling okay when I’m laying down and wanting to go back, to feeling in agony and like going back would be climbing the biggest mountain.

I keep asking my family and friends about what I should do and they all tell me the same- ‘only you know how you’re feeling’ which is possibly the most irritating thing because I really have NO idea how I’m feeling!

Being in pain is lonely. Nobody really knows how you feel. Of course, there are so many women who have the same (if not worse) issues as me but nobody knows what anyone else’s pain feels like. I always tell myself that I’m overreacting and other people have it worse but how do we know?

How can so many women stand together in this and yet I feel like I’m here on my own?

I have an excellent support network and my work are being so amazing but it’s really only me who can shift my mindset.

I want to be someone who is known for their battle with Endo and for their strength, not suffer in silence or moan (something I feel like I’ve done a lot of recently!)

I’ve realised today that acknowledging and sharing the pain is actually a strength and continuing to do so is the way to feel less lonely- it’s remembering this tomorrow that’s going to be the problem!

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Feeling the love

Day 8 and I’m still off work. As nice as it is to not be at work, I am bored and guilt ridden. I feel I should be doing something more useful than sitting on my bum, watching tv and napping. Yesterday, I did a little dusting and today I am paying for it. I know deep down that I’m not able to go back yet but being a teacher is a tough job and we don’t do well being ‘sick’.

This morning, I am awaiting the arrival of my Auntie. She is coming from London to look after me while my partner is at work. My sister is also coming and tomorrow I am being visited by my friend and family from my partner’s side.

I have had non- stop ‘get well soon’ messages, well wishes, offers to come and help out etc. I have realised how lucky I am to have such amazing support. As I basked in this thought, the doorbell rang and an oversized envelope was handed to me.

I opened it up to find a card, signed and decorated by the 60 children in the year group I lead. My heart melted and I felt tears prickling my eyes.

It is true what they say, you never know who your real friends are until you need them. I can’t believe how lucky I am to have such amazing support. It’s so important to surround yourself with positive people- I couldn’t imagine doing any of this on my own!

This is why awareness needs to be raised of invisible illnesses like Endometriosis. So many women face this alone and feel they have to power through in silence. The stigma needs to end- let’s talk- period.

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The kidnapping

Cool heading right? Now that I have your attention… 😏

It’s been 6 days and I’ve been really struggling to shake the dizziness, along with the pain and shall we say burning in certain areas of my anatomy 🤭

As we’ve already established, my mother is a hero, a super human, if you will. She flew to my rescue yet again today to take me to the Drs this morning. Because I’ve recently moved, my old surgery wouldn’t see me so I had to find a new one where none of my medical records seemed to exist! Anyone with an invisible illness will know how much anxiety is caused by seeing a new Doc. There’s still a concerning lack of understanding and knowledge of Endometriosis, particularly with GPs. You never quite know what you’re getting. All I could hear in my head were repeats of things I’d been told over the years ‘it’s all in your head’ and ‘oh that’s not linked to endometriosis, it’s just bad periods!’

To my relief, the GP I saw was brilliant. He prescribed me some antibiotics and validated my feelings.

Here’s where the kidnapping comes in.

On the drive back from the doctors, Mum took a different turning and before I knew it, we were on the motorway. Feeling slightly alarmed, I asked if she was lost or confused. She had decided that I needed to be ‘out’ so she was taking me to M&S to cheer me up… I feel it is important at this point, to tell you that my Mother once went ‘missing’ for over 4 hours. When located by my Father, she was found in M&S 🙄

I protested to this idea- I really didn’t feel well and this was the last thing I needed. Her solution to this problem (which she’d already planned!) was to stick me in the cafe with a pot of tea for AN HOUR while she shopped!

At the time, I was incredibly irritated (She did soften the blow afterwards by taking me back to her house to visit my dogs… every cloud!) But now that I am home, I feel refreshed. Once again, my Mum was right (I really hate it when that happens!)

I guess what I’m taking away from today’s escapades is that pushing yourself out of your comfort zone is rewarding. I’m a teacher and this is something we are always trying to get the children to do but as adults, we have the tendency to shy away from challenge and our resilience can be shattered.

Each day from now on in, I’m going to challenge myself a little.

Oh, and you’ll be pleased to know, I’ve decided not to press charges… 😏

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Baby steps

Day 4 has come and pretty much gone with nothing of any consequence to report on (with the exception of a teeny tiny breakthrough in the strike situation but I’ll spare the gory details!) The internet is full of other people’s experiences and opinions on what a ‘normal’ recovery should look like and how quickly people should be back on their feet.

The bottom line is, everyone is different. Every recovery is different. With my previous two ops, I know I have usually been more mobile by now. I’ve had the same procedure but this time I can’t seem to muster up the energy to do anything.

I tried to do a little bit of work today and ended up falling asleep at my laptop for two hours! Although I am nowhere near ready for normality, (and I have now accepted this) I can see some progress. Two days ago, I’d not have been able to even look at my bag of work and today I made a small dent. I also managed to make my own cup of tea (under careful supervision- the kettle is very heavy!)

Tomorrow will be my first day alone since the op and I am both anxious and excited. I haven’t even had a wee without someone checking in on me since Wednesday but a whole day alone, when I’m still so dizzy is quite daunting. If I’m lucky, my ‘recovery clothes’ will FINALLY be delivered tomorrow, which I’m sure will give me some motivation and a fair bit of distance between me and my PJs!

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Not all heroes wear capes

Day 3 of my recovery and I find myself craving normality. As bizarre as this will sound to most, I am longing to be able to put some washing on, run the hoover round the house, make my own lunch and head to the gym. I had anticipated this feeling before the op, so I had ordered myself some nice ‘recovery’ clothes, to arrive in time for this phase. They were due to arrive yesterday, ready for some visitors today but in true keeping with my luck, they weren’t delivered and will now be arriving on Monday.

On a normal day, this would have irritated me but today, this genuinely reduced me to tears. Like a pansy, I sobbed down the phone to my Mum about how sorry for myself I felt. All I wanted was to feel more like normal (whatever that really means!) and the one little step I had planned towards that had been snatched away.

My Mum is a hero. She could have laughed at how pathetic I sounded (if I were her, I probably would have!) but she didn’t. She reminded me that my feelings are valid. It’s only been 3 days! She told me to stop rushing it, otherwise it will take longer. As stubborn as I am feeling at this point, I know she is right.

My new plan of action, is to set up camp on the sofa, put on a fresh set of PJs and binge watch ‘Pride and Prejudice’ (The BBC version with Colin Firth- obvs!) and try to enjoy doing nothing because we all know that come next week, I’ll be back to putting the washing on, running the hoover round and all the rest that goes with it, wishing I’d made the most of my time!

Thank goodness for Mums eh?

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It’s all about the little wins

It’s been 45 hours since my surgery and I’m at the ‘irritable’ stage. My back is numb from only being able to lay in one position, my hair is matted and I can’t reach my hairbrush to fix it- nor can I really be bothered to. I can’t concentrate on reading my book because I’m too sleepy but I can’t sleep because I’m too concentratey… I’m very confused.

I flash from thinking about work and feeling guilty about not being there to feeling angry that I’m even considering this when I feel so sorry for myself. I had the worst night sleep and had woken up in a vile mood… until…

A little, tiny puff of air has released itself- if you know what I mean! If you don’t, I’ll try to explain whilst keeping some of my dignity (although I’m not sure I have much of that left after this whole experience!) Having a Laparoscopic procedure involves a shed load of air being pumped through an incision in your belly, to inflate the whole thing so the surgeon can see inside, move the camera and whatever tools they use to cut the nasty stuff out of you. This air gets trapped inside for DAYS and works its way all the way up to your shoulders, which, in my opinion, is almost a worse pain than the actual cuts in my tummy. After my surgeries, I have always experienced a sort of strike. I can’t pee, even after two jugs of ice cold water and I certainly cannot do any other kind of releasing! This is genuinely enough to drive me to insanity BUT this little tiny puff of air has come at the right moment. This is more than just a puff of air- this is hope. Hope for a better day after all! My mood has been saved and there is nobody more grateful of this than my other half!

To all you lovely ladies out there, post-op, pre-op or just keeping up the fight- things are rough for us but there are the little wins. To most people, with normally functioning lady bits, or no lady bits (men seriously have it easy!) these wins may go unnoticed but to us, they are worth holding on to and celebrating! Who knew, a puff of air would inspire a whole blog post!

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A new journey

6 years ago, I was diagnosed with Endometriosis after nearly 7 years of being told by doctors that it was ‘all in my head’- a phrase that far too many women and girls hear on a daily basis.

Yesterday I underwent my third surgery for excision. The results showed that it had spread like wildfire. Some would say how awful, and I suppose they would be kinda right but the first thing I felt (other than sick and dizzy!) was relief. I was relieved that there was something there, yet again, warranting the excruciating pain and fatigue I’d been feeling for over two years.

Today I’m laying in my bed, drugged up on pain meds and contemplating what my future looks like. I’ve known for years that I have a chronic illness but it’s only now that I’m realising what chronic means. This is never going to go away and I could spend the rest of my life moping about it… or I could do something. So here I am, starting my new journey, documenting the struggles and successes of my invisible illness. I’m not really sure what I want to achieve but I hope that others can read and relate and join the fight.

All Endo-warriors will know that it’s a less than glamorous illness so I hope to share my experiences and turn them into something relatable and slightly comical!

Keep a look out for my post-op posts but in the meantime, I must dash-it’s going to take me half an hour to hoist myself out of bed to get to the loo in time!

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