The shame of endometriosis

No one tells you about the shame of a chronic, diagnosed medical condition.

Okay, they do. We tell each other; on blogs, medical forums, Facebook groups, Twitter, Instagram; really any platform we can bash our fingertips on.

But the ‘specialists’ that diagnose you don’t. At least not to me.

They don’t explain that what you’ve just been diagnosed with will not only spend its time laying low, only to strike any given day it damn well pleases, but shroud you in shame and embarrassment, anger and frustration, desperation and depression, exhaustion and forgetfulness. Cue laptops covered in post-its, endless scribbles in diaries, lipstick memos on the bathroom mirror.

They don’t really tell you about the stabbing, jabbing, punching, aching, twisting and turning of your reproductive bits and anything else those cheeky plasma cells want to adhere to; the constant juggle between taking enough pain relief to stop the pain for all of 4-6 hours and not dissolving your insides with stomach ulcers (okay, perhaps they give you this as guidance on the bottle) and remembering when you’ve taken them; the excuses, the explanations, the self-doubt, the trying to tell yourself ‘it’s really not that bad’ when actually it is days, the ‘sorry I can’t come to work because of cramp’ days, and the absolute horror of feeling totally and completely debilitated.

They don’t give you the nitty gritty that you have to figure out for yourself. The shame of very normal yet altogether downright unsavory vaginal infections, PID, blowfish-esque bloating 20 days of the month because even though you may not get periods as such, especially if you’ve got the coil, oh boy will your body still tell you when you were supposed to have them.
And it really doesn’t matter how old you are, how mature you think you are, how ‘together’ you feel, or even how much you tell yourself that you really don’t care what people think, there’s still that shame and utter humiliation when you lay that box of Canesten on the very slow check out conveyor belt, only to turn around and have sets of ogling eyes scrutinising you for your seemingly poor sexual life choices. Not even post-Covid 6ft social distancing lessens the invisible judgement bubble.

It was only this week that I decided to put 2 and 2 together to get a lightbulb moment. Since mid-2019, I’d noticed that the pain in my lower abdomen was slowly coming back after a seemingly successful laparoscopy in 2018 (more on that below), sex was just a tad more uncomfortable again, blood was showing up when it wasn’t particularly invited and, dare I say it instead of Googling alternative words?!, my discharge was not always stellar.
(The proof that this idea is still taboo, is that my partner cringed at the ‘d’ word when I re-read it back to him and stated that I should have kept it to myself. Isn’t that half our battle? These things are happening to us, but we’re too ashamed to admit it and open up about it because it’s not ‘normal’ but ‘disgusting and dirty’. But it is normal. It’s not the 100% health we want, but it’s what we’ve got, and I’m getting tired and frustrated because my reproductive system doesn’t work like everyone else’s and I can’t talk openly about it without feeling worthless and useless, unattractive and undesirable.)

I’m not really one to get personal about endometriosis. I’ve been there, done that; I’ve done ‘the denial’, ‘the crying’, ‘the endless research to find a “solution”‘, and now I’m just ‘dealing with it’. And who the heck am I to tell you about it anyway, as I sit here at my desk quietly typing away, with a hot mug of tea and a pillow stuffed between my crossed legs bundled down into my lower abdomen for comfort and support with the naïve notion that it’s helping the pain?

I’m a woman with endometriosis. I’m the 1 in 10. The 2 to 10%. Another statistic.

And 3 years on from having the coil inserted and 3 laparoscopies later, I’m in pain.

I was diagnosed with the chronic disease when I was 24. And let’s just look at that word a second:


  1. (of an illness) persisting for a long time or constantly recurring

So if I really think about it, I’ve had symptoms since I was about 15-16. I was pretty lucky, I hit my period when I was 15. Well, lucky enough. Since then I can only remember heavy 8-day or so periods, hot water bottles, and side-splitting cramp.
When I was at university, I was unlucky enough to experience bleeding after sex (thankfully, I was lucky enough to have understanding sexual partners when those horrifying moments arose) and I thought nothing of it. Just assumed my period had come early and that sex was, well, bloody painful – ‘who’d wanna really do that?!’.
I’d be walking home from lectures, bent-over double on the pavement, thinking how unfit I was because my sides hurt so much from just walking. Thought nothing of it.

I’d been on the pill from 16. They started me on the combination pill – Microgynon – as I assumed they did for everyone that wanted that protection – completely unaware that pumping my body with both hormones wasn’t helping my situation. But I loved it! I mean semi-clean skin? Obviously totally oblivious that some of my skin issue was, and still is at nearly-30, caused by my little friends attached to Ol’ Olga Ovaries. Getting a small say over when I can have a period? Who wouldn’t want to just put it off by a few days to be able to wear that outfit, or go swimming that day?
Ultimately, after 7 years that wasn’t working out for me. The periods were bad. The pain was still there. The mood swings, oh boy were the mood swings ever present. And depression was an unfavourable addition to life every once in a while.

2015 rolled around and this time I listened to my body. After some bed time exercise with a long-time boyfriend, I’d noticed the post-sex bleed had reared its ugly head, the pain was worse than I’d ever experienced, and I was really sore in there. We’ve all been there – you know, that sad pathetic moment when you cry after sex? That was me, because I felt like my body was fighting back from something unknown.

It was my mum that said the ‘E‘ word. Said she had suspected it for a while. Off to the Dr’s I popped.

I was one of the lucky ones. I have close friends and acquaintances that have been waiting years for treatment and diagnoses. I know people who have been battling for years and people just starting to connect the dots with their symptoms. I was seen and referred within weeks. In the meantime between GP appointments and seeing specialists at the hospital, I was put on a progesterone only pill; Cerazette. Same outcome as Microgynon. Solved the period issue to a point, but life was still shit thanks to ol’ Olga and her friends. I’d also been made aware of, and I struggle to say it out loud let alone type it, bacterial vaginosis. Sounds mortifying, crude, unpleasant and unattractive; all the things I felt when I was told I had it. ‘How gross am I?!’ I thought. ‘And my fault too’, I thought. Because no one had helped me piece together the fact that thanks to endometriosis and the way it works, disrupting the pH levels of my inner vagina and all that, that getting it, and the recurrence of it, is something that is just going to happen. Cue me at 29 and living in a tiny town with one Pharmacy and a ‘everyone knows everyone’ attitude, buying your next box of Canesten isn’t exactly secret.

I had my first laparoscopy in 2015. I was 24. They found tissue on my left ovary and removed what they could. They also found some on the right, but not enough to consider doing anything about it. My ‘little’ yellow bloated Winnie-the-Pooh-belly-they-don’t-tell-you-about and I went home to rest. Relieved that I wasn’t crazy about my pain, relieved that there was something there, relieved that something had been done about it.

I was still advised between 2015 surgery and a 2017 GP appointment to continue with the progesterone-only pill.
In addition, by late 2015, it was recommended that I attend counselling. Crying about your complete inability to handle your life in the GP’s office grants you that, and a week’s sick leave, apparently. Because no one tells you about foggy brain and why you can’t remember what you did yesterday, or where you put your car keys – only to find them, after you’ve spent an hour scouring the field you’ve just walked your dog on, dangling from the ignition the whole time, – or why you can’t hold a conversation with someone because you haven’t got the mental capacity, and you just think you’re going mad. The big ‘E’ doesn’t just affect your ovaries, your bladder, your fallopian tubes, your recto-vaginal septum (oh, yah) or even bowels, it affects your entire being.

I’d also started Teacher Training in September 2016, and no one prepares you for that conversation in the interview when you have to explain that you have a majorly inconvenient, hugely debilitating, medical condition, for which you will no doubt need time off because of ‘cramps’. Again, I was one of the lucky ones. My new boss and Headteacher were understanding. Knew someone who knew someone who had it.

Fast forward and it’s 2017. Now the pain was in right side. Shocker. The side they’d left well alone. The GP mentioned the coil could be a viable solution, among others, especially the least-favourable solution I’m sure we’ve all heard; ‘get pregnant’. I can almost feel the anger radiating from you. I agreed to the Mirena coil. I wasn’t great at taking the pill the right way, and this was something I didn’t need to think about for 5 years. At this point I was ready for a full hysterectomy – which apparently at 26 is not to be considered under any circumstances, no matter how many times you cry in frustration at a Dr who cannot fathom why you don’t want to procreate – of your own choice.

2017’s laparoscopy was miserable. Utterly miserable. I woke up from the anaesthetic sobbing as if my body knew the results before I did. When I’d finally come around enough to comprehend what I was being told, I just remember sobbing some more. They’d found more lesions, cells, whatever you want to call the little black spot bastards they show you on those x-ray sheets that hide in your ever-growing medical file. It was worse than they expected. They’d found it had pretty much smothered my right ovary and had a little jolly jaunt to my bladder. They’d not been able to do anything for Olga or Barry Bladder. Not a thing. Nada. Zilch. I was drained. Mentally, emotionally, physically drained. I was beside myself. I cried in the car on the way home. I cried when my mum put my 26-year-old beaten body to bed. I cried when I woke up at various intervals throughout the night when the shoulder pain made it too uncomfortable to sleep. I just couldn’t comprehend how they could have done nothing to remove it.
They were kind enough to insert the coil while I was under, so I have no idea how that’s going to go down when they have to pull it out and inevitably put in another with me fully awake. Future me’s problem I guess. I have another year and a half before the 5 year mark. What you’re not told, or at least what I had to find out for myself through forums, is that the effectiveness of the Mirena coil in subduing endometriosis related pain is good for the first 3 years and then depletes from there on. I hit the 3 year mark in March 2020, coinciding with the time I became fully aware that I’m experiencing symptoms again.

‘We’ll get you on the list to get you back in for another surgery as soon as we can.’ Apparently that’s NHS speak for ‘when you call us to remind us and we get a cancellation, you can drop everything to come in.’ This happened a year later.

Technically 10 months. 10 months of juggling Teacher Training, with 10 months of stress which was no doubt attributing to my bouts of serious pain, with 10 months of a failing relationship with someone who declared at the early hours of the morning that they wanted children. I didn’t. I don’t., and 10 months of explaining, social excuses, brave faces for classes of 30 students, and trying my best.

I remember when I got the call for my 3rd surgery in as many years. I’d made the initiation a few weeks before. Called the GP and went over the symptoms again. Driving home my phone rings; I see it’s the hospital. Obviously, driving safely, I pulled over and take it. ‘We’ve got a cancellation and can get you in, in X days.’ I booked it there and then and called my work. The stress at school was mounting; that week we had pre-GCSE Year 10 Parents’ Evening and I was asking to be excused. I should have breathed a sigh of relief to have such understanding higher-ups and colleagues, but I felt nothing but failure, anxiety and more stress. I spent the next few days making sure everything was covered for my absence and made 30 phone calls home. Some were sympathetic and understanding, some couldn’t believe I was taking time off to sort my cramps problem.

The 3rd surgery was more successful. Liberating even. Most of the BSB (black spot bastards, as I will now lovingly refer to them) were removed and I had to undergo the whole catheter thing for Barry. It was the the most invasive of the 3 surgeries. But now the coil could do its thing and grant me the pain-free life I never thought would be granted. Life was a breeze. I didn’t consider myself to have endometriosis anymore. I was quite delusional even. I felt a little like Smeagol when he got so excited that Gollum had temporarily left him. Like Gollum, Olga’s and Barry’s friends were still there, just lurking, waiting, mocking my total naïvety.

I spent the next few years not having to tell a soul about my ailments. I could happily apply for jobs without fear of having to explain that I’ll be racking up points on my Bradford Factor, old friends weren’t offered BS excuses for my social absences, new friends weren’t privy to my ‘medical condition’, and I could freely travel without worrying that I’d need to take a suitcase worth of Ibuprofen or packets of pills – thank you Mirena.

That’s all changed. Which is I guess where this post comes from. Out of exhaustion, the inability to make sense of how I deal with it this time in a tiny town far from home, frustration that there’s not more I can do than what’s been done and, honestly, raging anger that this is part of my life. I needed a cathartic outlet to reach others just like me and educate those who are not.

I’ve travelled a lot in the last 2 years, finally settling in Yukon, Canada. Only here have I been blessed enough to find more people like me, if you can consider it a blessing? Back home in the UK I felt detached and lonely with my condition, only connected to other sufferers through people who knew people who knew people who had it. I felt more like a 1 in a 100 than a 1 in 10. I now have friends in my inner circle that have endometriosis symptoms; cysts, pain, fatigue. I finally have understanding.

It’s hard living with any chronic illness, disease, condition. It’s harder still when your support network can’t relate, or understand, or think you’re lazy because you’ve been caught having an off day. It’s hard to explain that you can’t physically have a conversation with someone because you haven’t got the capacity to do so. It’s hard to explain that you’re bloated, you’re unsociable, you’re irritable, you’re unmotivated, you’re anxious, you’re stressed, you’re forgetful, and totally disconnected from life, just for a moment. And it’s harder still to explain that all that is because tissue that should be behaving normally and lining the inside of your uterus would like to settle elsewhere in your body, and you can’t quite explain to those BSB’s that this isn’t some episode of Escape to the Country.

Whilst researchers, Dr’s, specialist, scientists, whatever-ists, don’t know why it happens, why so many women are affected by it, or how to find long-term relief solutions, it’s a thing. A thing that more people need to be aware of. A thing that people need to be more considerate of. And talking about the ‘side-effects’ need to be far less taboo than they actually are
because if we can’t say words like bacterial vaginosis without looking like Shrek about to burp, then we’ve got no chance of normalising Endometrosis.

This is 2015. A few days after the first bash at BSB. Obviously feeling pretty ignorant about Olga and Barry’s future.
That’s Thor. I highly recommend any Endo sufferer get themselves a supportive four-legged companion, especially when a hot bottle isn’t available.

Happy First Canadian Thanksgiving

Screenshot 2019-10-20 at 12.20.29

So we finally made it to Canada. For the first time ever, I got to experience a Thanksgiving (we know of them in the UK, but we just take the ‘shopping sales’ aspect of it and leave the giving of the thanks to the Canadians and Americans – in November-), so did what I know best: got in the kitchen and baked.

These little delights are chocolate, with an orange buttercream ‘fire’, mini salted pretzel sticks and mini mallows – yes, a Pinterest inspired treat. I used Chipits (this was a risk, I’ve never used anything but Tesco chocolate for melting and baking before!) and melted them in a pan, but just enough to add some moisture to the cake and left little chunks in the mix. Was a nice little surprise biting in and finding a Chipit chunk in my cupcake! Something I will definitely do again.

They took some attempts to get right though. I started by ‘twirling’ (not a clue what the technical term would be!) the buttercream and placing the pretzel sticks against it. But this didn’t give the desired ‘fire’ effect at all! So I tried again. This time, I still ‘twirled’ the buttercream in the centre of the cake and used it as a base to ‘brush’ the buttercream up against it to give an almost ‘flame-like’ look. This seemed to work much better!

Next time, I need to get my food colouring ratio right, as I wanted a mix of colours for the flames, but for a first-timer, they weren’t that bad! Tasted scrummy too! Especially with the mix of sweet from the chocolate and salty from the pretzel.

Happy 60th.

Screenshot 2019-10-20 at 10.26.23

This has got to be my absolute favourite cake I’ve ever made. The pirate of 2013 was pretty good, the (not featured on this blog, unfortunately) 3-tier mountain/snowboarder/ski lift cake of the same year was incredible (if I may say so myself) and the mountain-bear cake of 2018 is top of the list for sure, but this, this cake was something I’ve never tried before.

I’d watched countless Pinterest and Instagram videos and tutorials about how to make the striped buttercream wrap around the cake, and smooth it down and I as desperate to try it. Finally the opportunity presented itself when I had to make a surprise 60th birthday cake.

The cake was something I’d perfected over time: white chocolate and fresh strawberries. I made it as 2 large tray bakes and when chilled, cut them into circles with a cake tin. I found that this was much easier, not just because I got a few leftovers to nibble on and share, but because I got a smoother edge to work with and the top was much flatter than if I’d have used 2 circular cake tins.

The layer inside is just vanilla buttercream and strawberry jam, to compliment the white chocolate and fresh strawberry cake.

I mixed some of the buttercream with red food colouring and left the other bowl ‘naturally’ yellow/white. I found French butter to be an absolute nightmare to work with for buttercream and couldn’t wait to get home to use some good ‘ol Stork! I then piped big lines all the way around the cake, changing the layers as I went. I travelled with a cake decorating kit (yes, I was just that prepared) and used the flat edge to smooth the buttercream around and merge the lines.

Then the pièce de résistance, or so I think, is the fresh fruit topping. We were lucky in France that the physalis still came with its leaves which adds another dimension to the cake, and I chopped a couple of strawberries for the edges and ‘casually threw’ some raspberries in the mix.

I just loved it.

She Said Yes!


This was part of a couple’s magical New Years’ Day when he proposed to her, and it was all lovely, and luckily(!) she said yes!

It’s just a Victoria Sponge with buttercream flowers and royal icing text. I just wish I’d made the flowers a little bigger to finish with the desired effect I originally wanted, but all in all, it all got eaten.

We’re Off To The Alps, Better Get Our Game On


This ‘ere subtle looking thing, is basically #diabetesinacake. We’ve got a chocolate base, with a salted caramel chocolate frosting, mini marshmallows and chocolate shavings.

I’ve always been nervous about making chocolate cake, whether I’ve used the wrong powder, it won’t be (and let’s just get past this word without cringing) ‘moist’ enough, or somehow it’ll transform in the oven to a crisp chocolate biscuit. But this one turned out so well, it travelled all the way from Margate to Cambridge and got devoured by a house of hungry  students.

The only thing I would have done differently, was mix the salted caramel with the cake mix, rather than add it to the chocolate butter cream frosting as it was a little over-powering.

When You’re 27 and You Have To Bake Your Own Cake…

Screenshot 2019-10-20 at 10.35.40

As I had to bake my own Birthday Cake, I made my favourite. Victoria Sponge.

I had a great time trying something new with this cake, using sugar paste (as it sets hard) to make the toppings. I have a new thing for geometric art (the monkey tattoo is testament to this) and my love of mountains inspired this one. I used edible ink to draw the lines, some were freehand, some I indented with a knife and went back over to make sure I had it right. Blue fondant icing wraps around the cake to make a mountain scene.

I absolutely love the toppers, but need more practise with the wrapping of icing to make sure it’s not lumpy. It was a frustrating cake to make but one of my favourites! Totally worth it. Tasted great too!

The boy turns 3

Screenshot 2019-10-20 at 10.32.34

A ‘Cheesy nip’ treat… (they are really called Cheesy Bites or Nibbles, I think, but my family changes the names of everything, so here you have ‘Cheesy nips’.)

Peanut Butter, oats, banana, shredded carrot and a little honey to hold it together. Baked in the oven until golden brown(ish). Topped with Philadelphia and peanut butter frosting and a small treat of your choice.

Can be frozen (without the topping) for a later date. These last for ages, and Thor now expects them to be defrosted in time for dinner.

‘Is this a dagger which I see before me?’

Screenshot 2019-10-20 at 10.32.03

Vanilla cupcakes with a chocolate frosting, covered with red sugar beads, and fondant icing daggers coated with edible silver paint.

These were made for students partaking in the Shakespeare Fest 2018. Granted, they were made in a rush and on par with the icing/potato mash mountain disaster of 2013, but they went down a treat.

A review of sorts for David Cable’s Rails Across…

Anyone that knows me personally knows I am not a train fanatic by any stretch of the
imagination. I grew up with a Thomas the Tank Engine train set and have since held a grudge towards my father for it (no matter how much I really loved it deep down – you know the one: wooden train tracks with the wide grooves, plastic trains with the magnetic dome to link with the carriages…)

So for me to review a ‘train book’ is a first. But all things considered, David Cable’s Rails Across series isn’t just your average collection of ‘train pictures’. I’m a sucker for National Geographic-esque photographs, the ones that exhibit such spectacular scenery you can’t help but investigate every tiny detail, and that’s exactly what you get with Cable’s books.

Of course though, you must bear in mind that the subject of each photo is a train (expect for in Rails Across Australia where the subject is a witch-looking tree, I guess you’ll have to buy the book to decide for yourself) and so for some readers it can get a little tedious – some of the photos only feature a specific engine without a fantastic backdrop – I didn’t like these.

At the beginning of each book Cable includes a short intro that looks into the history of the area, his involvement in the photo taking and who helped. It doesn’t go into great detail, but for the amateur reader it is plenty and gives a basic understanding for what they are looking at. Each photograph comes with a very short caption that identifies the locomotive and, sometimes, location. Thankfully for me, I wasn’t too bothered, being interested only in the photo, but I can see that for some this may not be enough.

I highly recommend these books to the train fanatic, the photographer and the landscape lover. It’s an incredible collection that documents the way of the land in a different, and sometimes very beautiful, way.

Bok 8.jpg

I haven’t reviewed each book in any particular order, but I have started with my favourite; Rails Across Canada.

There are 200 pages of glossy-paged photographs, and I have no doubt that readers will have chosen different images for different reasons. I have four that I absolutely love from this collection.

Being a young’n still, I love the advertisement on this 6424, decorated for the NFL Super Bowl in Ottawa ON, 1985. (Courtesy of David Cable and Pen & Sword Books)

Oh man, just look at that powder against the bright orange and yellow. A spectacular shot. (Courtesy of David Cable and Pen & Sword Books)

Just for the mountains and that crystal-blue river. (Courtesy of David Cable and Pen & Sword Books)

It’s Christmas in one picture… (Courtesy of David Cable and Pen & Sword Books)


Next up; Rails Across North America

The landscape featured in the photographs from Rails Across North America are not too dissimilar to Rails Across Canadaexcept that it seems the land is drier, more arid and agricultural. The Union Pacific reminds me of a Disney Pixar character.

I admire Cable’s eye and appreciate that he hasn’t just compiled a selection of books based on photographs of an engine; the composition of landscape and locomotion, in most cases, is incredible. The Chicago skyline (May 1993) and industrial-looking Amtrak F40Ph create a fascinating photo with the solid grey collection of skyscrapers, grey offices and stark blue sky.

Here’s Rails Across Australia. Don’t worry, there are no super-huge spiders or slithering snakes. Nor are there any Kangaroos, sorry.

The fact that there are only four photographs in this selection is absolutely no reflection on the book. It’s awash with amazing images showcasing a variety of landscapes and locations. Personally, I only liked these ones; one for it’s postcard potential (im. 3) and another because it looks like a miniature modelling scene (im. 4).

These photographs seem a lot less professional than in perhaps the other books, but I don’t feel like that takes anything away from them. In fact, it makes me like them more. The blurry, grainy texture gives them a retro feel. Cable explains that they were taken while he lived in South Australia between 1967 and 1973.

Lastly, Rails Across Europe: Northern and Western Europe. Now, this one is completely different to the other three. The landscape changes dramatically (obviously) and the photographs themselves focus more on the locomotive. Cable has explored Belgium, Denmark, Estonia, Finland, Northern France, Germany, Great Britain, Ireland, Latvia & Lithuania, Luxemburg, Netherlands, Norway, Poland, Russia and Sweden. As you would expect from European architecture, some of the photographs are outstanding. In one, an AM86 EMU 914 awaits departure from Antwerp Centraal station back in 1991; the stark contrast of the grand architecture of the building makes the simple-looking locomotive stand out like a sore thumb.

Rails Across Europe: Eastern and Southern Europe continues across the continent, looking at Austria, Bulgaria, Croatia, Czech Republic, Southern France, Greece, Hungary, Italy, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Switzerland, Turkey (in Europe) and Ukraine. As you would expect, the photographs from Austria are just stunning; luscious green grass and snow-capped mountains. If there was a Rails Across that you had to add to the pile, it would be this one. It is due for release at the end of August, 2016 from Pen and Sword Books.

All other titles in the series are available to buy from Pen and Sword Books. RRP £25.

All photos have been published here with the permission of the publisher and not subject to redistribution without prior consent. I thank Pen & Sword Books for allowing me to publish them on this post.