Deja Vu.

I've been putting off writing this post for the past couple of weeks due to being the guest of honor at my own pity party. However, I've decided if I don't vent, there's a chance my head will explode and the last thing my landlord needs is to be scraping a dead girl's cranial lasagna from the living room walls.

I'm coming to you live from my sofa. With me are my laptop, an almost empty box of Cocodamol, Ibuprofen and my hot water bottle; I haven't showered in two days, I'm wearing a pair of Primark pyjamas complete with a number of questionable stains and my hair is in disarray to the point where if I went outside I'm pretty sure I'd get mistaken for Robert Smith. 

I'm now five weeks post op. The surgery went well without any complications, although they had more to deal with than expected. Speaking to the surgeon in the pre-op lounge he told me that the plan was to rid me of a build up of blood filled cysts and endometrial tissue which was dotted around my uterus and ovaries; this was carried out successfully. The next day, before being discharged from the hospital, I found out that in addition to this, they also had to remove adhesions that had fused together my uterus and bowels, to the point that my uterus had literally folded over onto itself.

I woke up after the op in agony but in high spirits, proud that I had gotten through it all on my own. I was in such a great mood that I started giggling and dishing out compliments to the nurses and anesthetist in a morphine induced daze. I imagine had someone recorded it on their phone, it would've gone viral like those videos you see of people high as fuck after getting their wisdom teeth removed. 

The first few days were just as difficult as I had anticipated, if not more. There's nothing that could possibly prepare you for not only the physical strain, but the mental strain of having to teach yourself how to walk again. It's exhausting to say the least.

I needed constant supervision. My best friend came to stay with me for the first couple of days while my boyfriend worked, and my mum arrived to take over from her at the weekend. I can't thank all three of them enough for being at my every beck and call. 

I needed help getting up out of a seat and sitting back down. I needed help walking to the bathroom, and then pulling my underwear up and down after using the toilet. I needed help getting in and out of bed. I needed help bathing and then dressing myself. I was essentially a toddler trapped in an adult's body for those first four days, temper tantrums included; I'm a little woman with little patience.

After those first couple of days, things started to look up. I was walking around by myself, albeit with terrible posture, but I was moving at a quicker pace by the day. I was less squeamish which meant I was able to look at my incisions and clean them without suddenly getting light headed. I was getting my strength and stamina back slowly but surely and was able to feel a little more comfortable. It all seemed to be going well until eight days after the surgery, I felt a twinge on the left side of my pelvis.

My heart sank immediately. That twinge felt all too familiar, exactly like the painful sensations caused by my endo, and it began to make itself more apparent over the coming days. I tried to ignore it; necking pain relief tablets eight times a day, trying to push the thought to the back of my mind, convincing myself it was probably just my insides healing. I imagined it as two nerve endings sending a shock through my pelvis every time they made a connection, like in those action movies when you see a dude hot wire a car and the cables make that little "BZZZT!" sound. 

I continued to ignore this pain for the next three weeks. I was now at the point where I was alone as my best friend and mum had both returned home after helping me out and my boyfriend had returned to work full time after essentially being a stay at home carer in their absence. My life felt like it reached a sudden stasis of stillness.

My mental health started taking a serious hit around the third and fourth weeks. I was at home, feeling lonely and bored with too much time on my hands but not enough of a concentration span to keep myself occupied, nor enough physical strength to do much housework. Days began melting into one another and when I wasn't scowling at my still-swollen belly in the mirror or staring aimlessly at my tv, I was comfort eating and oversleeping, all the while continuing to ignore the progressively painful pelvic sensations I was experiencing.

This week I've had a little more energy and have been more active at home, doing housework and have been able to venture outside for longer periods of time without feeling as exhausted. I made the decision that next week I'll finally be returning to work because for one I can't afford to stay off any longer and two, I can't stand being stuck at home feeling so unproductive.

Three nights ago though, I experienced pain and discomfort on a level so extreme that the only thing I could possibly associate it with would be an endometriosis flare up. White hot pain started coming in waves, radiating from my abdomen to my lower back, lasting for about five minutes at a time and then passing briefly before returning again. I've never endured labour pains, but this was what I imagined contractions to feel like. 

My strongest painkillers did barely anything to relieve the pain. I was squirming uncomfortably for over an hour clutching my hot water bottle before the pain got so intense that I ended up doubled over, sobbing on my bedroom floor. I had no option but to focus on my breathing and wait for it to pass, which thankfully it eventually did.

The same thing happened again this morning. My insides contracted and throbbed so intensely that it woke me up just after 5am and there I was again, lying in a heap on my kitchen floor while I waited for the kettle to boil so I could fill up my hot water bottle. 

"Something's not right here," I was thinking to myself. For a few minutes I seriously considered calling an ambulance because the pain got so intense that everything started going out of focus. The pain passed long enough for me to fill up my water bottle, take some Cocodamol and climb back into bed.

At that point I thought to myself, maybe this is more than just lingering pain from the surgery. Maybe this is my reproductive system returning to it's usual state of being - contracting and bleeding; internal organs fusing themselves together again.

This is why I'm writing this post. I'm angry. I'm upset. I spent the early hours of this morning reflecting on my endometriosis journey and I just wanted to scream into my pillow because I can't pinpoint what is causing this pain.

The whole point of that surgery was to improve my quality of life, if even just for a few months, yet the last five weeks I've experienced nothing but pain that's, if anything, actually been worse than any pain I've had in the last six months combined. When does it fucking end?

Not to be melodramatic, but I feel like I've been somewhat robbed of having a decent, normal life. It's been tainted by chronic pain for the last six years and before that was a monthly occurrence of agony brought on by my period. This illness has effected my social life, jobs, relationships and my mental health. I feel like a prisoner inside my own body, limited to what I can do on a daily basis.

I'm sick of spending so much time in waiting rooms, whether it be at my local GP or in hospitals. I'm sick of being told what a "strong" woman I am. I'm sick of people not knowing what to say to me when they ask me how my day is going and I get a little too honest with them and tell them I'm not feeling so good. I'm sick of feeling apprehensive to leave the comfort of my own home, fearful of how my day will pan out. I'm sick of having to wear unflattering baggy clothes because nothing else in my wardrobe fits me. I'm sick of feeling exhausted no matter how much sleep I get. I'm sick of pain relief tablets making me constipated and having to take laxatives on a nightly basis. 

I'm sick of complaining, but above all, I'm sick of having to apologise for complaining.

Surely there has to be something more that can be done? I know there are women out there who have it so much worse than me but how is it normal to just throw pain relief pills at someone and expect them to just learn to deal with it? I've spent years struggling and it doesn't get any easier.

Therein lies the reason I haven't bothered visiting my GP this week, because I know it's just going to be a case of being given more pain relief and told to just accept it. 

So, that sums it up. I'm planning on returning to work in a couple of days but I have the recurring threat of another "flare up" knocking the wind out of me at any given moment, in which case I'm sending myself straight back to the hospital again and screaming at whoever will listen to me until they investigate what's wrong.

This isn't recovery, this is a relapse with no foreseeable intervention.

... and now back to Sick, Sad World

Damn, Kiera, back at it again after three months of silence!

I feel like every time I post here it's going to start off with some remark about how poorly committed I am to writing. Shout out to all the people out there who blog regularly for a living - do you think if you breathe on me, I might catch your enthusiasm? (Ten points if you get that cult television reference).

Anyway...

March is Endometriosis Awareness Month, where we hope to raise awareness of this awful fucking affliction to women who may not yet have a diagnosis - and aim to bring down the unacceptably long diagnosis time.

If you're interested, I highly recommend researching to see if there are any events in your area for you to participate in. Despite the fact I feel nothing but sheer disdain towards cardio related activities, I've registered to take part in the Glasgow leg of the worldwide EndoMarch campaign at the end of the month. 

The idea is for endo sisters and supporters alike to come together for a short, peaceful walk through the city; to make our voices heard, feel involved in raising awareness and meet others in the same situation. For any of my readers around the UK, there are also marches in Cardiff and London - click here for more information. 

Now I'd like to shine the spotlight on one of my biggest supporters, my super talented best friend Lauren MacAskill who very kindly spent the month of February fundraising for the charity Endometriosis UK through sales of her Redbubble merch. Although she only receives 20% of the sale price for each item bought, Lauren managed to raise just over £150! (Shameless plug - if you're a fan of RuPaul's Drag Race and would like to treat yourself to some awesome goodies, click here to take a look at some of Lauren's creations!)

Endometriosis UK are a charity that receives minimal funding for the work they do and are financed almost entirely through donations and annual membership subscriptions. Their website has a lot of useful information about the disease and how to cope. They even offer a free helpline for women in need of personal support. Click here to make a donation and read more on their website.

In the spirit of raising awareness, there's something in particular I've wanted to write about, or rather rant about. 

We all know celebrity endorsement is great and it can do wonders for bringing attention to a cause. But! When that particular celebrity begins to disclose false information to a news outlet with a huge worldwide following, sensationalist headlines and social media posts begin to appear - and that results in a mass audience being fed unrealistic expectations.

I'm talking, of course, about Lena Dunham. Already somewhat of a controversial public figure (seriously - just Google search "Lena Dunham pisses people off" and you'll see what I mean), she's yet again gone and rattled some cages, mine included, after a recent essay published in Vogue magazine about her battle with endometriosis.

I'll give credit where it's due, big ups to Lena for being unabashedly transparent throughout her journey. I can certainly relate to a lot of the things she's written in the past, but damn, girl, learn how to use your inside voice sometimes. 

In her Vogue manifesto, she opened up about how she's recently undergone a hysterectomy to rid her of all symptoms relating to endometriosis. Now, this sucks, because it's only going to perpetuate the belief that a hysterectomy is a cure for endo. Friendly reminder, folks - there is no cure.

Upon it's publication, she then took to social media to share another Vogue article that discredited the one treatment that is proven to work - excision surgery. Girl, fair enough that X amount of laparoscopic surgeries didn't work for you, but considering what a mass following you have, it's infuriating that you would give such misguided advice and claim it as gospel. 

All individual cases are different, of course, but for anyone reading this that is currently suffering and struggling to weigh out their options, please don't jump head first into the deep end and request a hysterectomy from your OBGYN based solely on the false ideology perpetuated by Lena that it will rid you of your symptoms.

If you do your research you'll come to find that it's been reported that a hysterectomy is often more successful in relieving symptoms of a condition called adenomyosis, which is a completely different kettle of fish to endometriosis. This is where endometrial tissue breaks through the muscular wall of the womb, as opposed to growing in places outside of it.

One study I found online which looked at the recurrence of endometriosis after hysterectomy concluded there is "an approximate 15-percent probability of persistent pain after standard hysterectomy with a 3 to 5 percent risk of worsening pain or new symptom development". You can view that study here.

Moral of the story, ladies, seek advice from a medical professional before you even begin to consider putting yourself through an irreversible procedure such as this. Furthermore, take every word Lena Dunham spews in general with a pinch of salt.

With all of that being said, you may remember in my last post I shared that I was awaiting MRI results to find out the full extent of my own internal tissue growth. 

Well, there was some good news and some bad news. The good news was that there was no significantly sized endometriomas (blood filled cysts) found around my ovaries, bowels and vagina. Meaning, no immediate cause for concern.

The bad news is, they found signs of scarring, otherwise known as adhesions. Adhesions are what can only be described as sheets of super glue, that fuse your internal organs together due to a "sticky" component within them. This can cause ovaries to be bound to the side of the pelvic wall, or may even extend to the bowels and uterus. 

So, as it turns out, I have to undergo the dreaded surgery I was hoping I could avoid. It was either that or endure a six month trial run with some menopause inducing injections and hormonal replacement tablets. I figured that was too hardcore for me and I'd rather go the surgical route. At least I know from my past experience that this actually provided some (albeit short term) relief. Not to mention the fact my consultant literally told me that if I went with the menopause option, it would be quite difficult to tolerate not only due to the more common side effects but also due to the fact that after a while you literally start losing some of your bone. 

I just can't wrap my head around why that would even be an option. Like, hey, let's put your body through physical and emotional turmoil in a bid to rid your body of physical and emotional turmoil. Ugh.

I'll admit, I haven't been the most pleasant person to be around lately. I've been gloomy as fuck, not only from being hit with the surgery news but I've also been experiencing more frequent flare ups. I can sense people are beginning to get sick of hearing me complain. Believe me, I'm sick of hearing myself complain.

I want to end this on a positive note though, so I just want to reiterate how grateful I am for the people who continue to love and support me, even when I make it difficult for them. I'm nothing without the support of others.

Kiera xo.

What's your diagnonsense?

Evidently, I'm terrible at this blogging thing. I told myself I'd try to write at least once every two weeks yet here I am with my first post in three months. 

To tell you the truth, the last few months have felt pretty chaotic. A lot has happened in my personal life - a new job, changes in my living situation, mental health highs and extreme lows with multiple hospital visits in between. 

On the plus side, progress is being made with my endo. Back in June, I had the contraceptive implant fitted in the hopes of it controlling my hormones and reducing my chronic pain. Much to my surprise, it has actually helped a great deal.

I'll admit, it took my body a good three months to adjust to it, and those three months were a nightmare. I suffered extreme mood swings, major bloating, random spotting and super heavy periods that lasted for - I shit you not - fourteen days; not to mention a serious flare up at the beginning of August to top it all off.

Thankfully, once September rolled around, my chronic pelvic pain began to reduce significantly, which was fucking awesome. However, something the implant didn't seem to help with was the pain I frequently experience during intercourse. 

(Spoiler alert: it's about to get TMI all up in here.)

It's sad but true. Pain during sex is one of the most common symptoms that endo sufferers experience. Allow me to paint you a picture... 

Imagine a penis - your boyfriend/husband's, Tom Hardy's, whoever's. Now, imagine that penis is a red hot fire poker, stabbing you repeatedly in the Holiest of Holies. That's the sensation that I, and many others, have to deal with and believe me when I say it's just as unpleasant as it sounds. 

As I'm sure you can guess, my libido borders on non-existent when this is all I have to look forward to. Luckily I have a wonderful, supportive boyfriend who understands and doesn't mind not getting his rocks off 24/7. 

Pro-tip: if you ever feel the need to abstain from sex for a while due to how painful it is and your partner isn't 100% understanding - drop their ass like a hot potato. YOU DESERVE BETTER. Ain't nobody got time for this "but what about me and my needs?!" cry-baby bullshit.

Anyway, with that all being said, I mentioned the extreme pain and discomfort to my gynecologist and after a rather uncomfortable physical exam, she concluded that I may have what's called 'rectovaginal endometriosis'. This is when the endometrial tissue has began to penetrate and grow deep into the vagina, surrounding the cervix as well as the tissue that lies between the vagina and rectum. Yikes.

She then referred me for a pelvic MRI scan so they could get a better look at my insides. I went for said MRI two weeks ago. I spent 45 minutes lying in a claustrophobic tube with headphones on that were essentially pointless because the machine was so loud it tuned out nearly every song that played on the radio. 

I remember I did get to hear five second snippets of Toto's "Africa" and Lionel Richie's "All Night Long" in between the intermittent banging and whirring noises though, so that was nice.

Right now I'm still waiting on the MRI results. Depending on how far the endometrial tissue has spread will conclude whether or not I need to be referred for surgery again, so I'm sort of dreading hearing back from my doctor.

September marked two years since my first laparoscopy and official endo diagnosis. The surgery and eight weeks of recovery time that followed aren't exactly some of my fondest memories, so you can imagine why I'm not looking forward to possibly having to go through that again.

On the bright side, being hooked up to a morphine drip is always great craic. Being rectally administered pain relief, though? Minus craic.

Anyway, that pretty much brings us up to speed. Considering my lack of commitment to blogging, I guarantee the next time I post here will be sometime in the new year, granted I don't get hit by a bus or fall down a well.

Have a lovely Christmas! 

Kiera xo.

Chronic pain is such a drag...

I'm not gonna lie folks, the future of this blog was a bit touch and go for a while there. After getting so much positive feedback on my first post, I wasn't quite sure what direction to go next or how to keep the ball rolling.

On that note, thank you to everyone who reached out to me for my first post. I received an overwhelming response that literally brought tears to my eyes. It was nerve wracking to put myself out there, but the pay off has been more than worth it. I've even had a few ladies get in touch with me to thank me for cluing them in on the condition who have been able to relate and are now having their own symptoms investigated. If you're reading this, girls, I'm rooting for you. 

August was a long, busy and generally shit month for me and the last thing I wanted to do was sit down and write anything. Mercury was in retrograde and my insides were flared up the wazoo. I mean, that's hardly out of the ordinary but I had so many plans I had to flake out on at the last minute just because I didn't want to leave my bed, or felt like I physically couldn't. 

One of my biggest pet peeves has always been unreliable, flaky people. I now fall under that category. There's no rhyme nor reason to when my endo will flare up so more often than I'd like to admit, I find myself in situations where I decide to bail on plans a minute before walking out the door because the best thing for me to do is lie in bed in the fetal position and refrain from moving. 

You don't have to tell me twice, I know what a bad friend that makes me. I'm always weighing out the options in my head of whether or not it's worth me going on a night out and struggling to fully enjoy myself, or staying in and chowing down on painkillers and finding some degree of comfort with my feet up watching Netflix.

Sometimes I have to be selfish. I'm well aware I'm becoming a fully developed recluse, but I can't help that the latter option appeals more to me.

Following on from that, as the end of August began approaching, I started to grow increasingly apprehensive about a trip to London I had planned with my best friend Lauren. I mentally prepare way in advance when I have plans to go travelling; having to think logically about the extent of things I'll be able to do and how long for before I feel like I need a rest. FYI: chronic fatigue is another side effect of endo.

I feel like the human equivalent of a mogwai sometimes, or the poor dogs nobody wants to adopt from the shelter because they've gotten old. If you gift wrapped me, the box I came in would include a floor length piece of paper with care instructions to follow. 

Anyway, I digress. The purpose of travelling down to merry 'ole London was to attend Drag World, a convention for, you guessed it, all things centered around drag. It's a place where members of the queer community can come together, let their freak flag fly and be themselves without fear of judgement. This was an event that I'd be pissing myself with excitement to attend, but the closer it got the more I dreaded it.

Lauren and I had previously been approached by a mutual friend of ours to work at the convention. If you're a fan of RuPaul's Drag Race and you follow me on social media, you'll probably know that I'm lucky enough to call myself a friend of Katya Zamolodchikova - the illustrious queen from Drag Race Season 7 and Season 2 of Drag Race All Stars. 

I've worked with her before at various drag events and I know just how quickly it can turn to pandemonium. Naturally my mind was filled with the worry of whether or not I'd be able to remain on my feet for an entire weekend, maintaining a high standard of customer service in a busy environment without ending up doubled over in pain. 

At the end of the day, I'm representing someone in the public eye who has an incredibly large fan base, at an event which is the first of it's kind in Europe - the pressure was already on. Not to mention, the last time I saw Katya was following a particularly bad flare up back in April, which was so bad I had to make an emergency trip to the hospital. I had been crippled with pain to the point where I couldn't even stay out at a club to watch her perform. 

I didn't want our reunion in London to be ruined under similar circumstances, neither did I want to let her down as her 'employee' for the weekend - I know how lucky I am to be asked to work for her, but there was a real possibility that this condition outside of my control could hinder my abilities to help out.

Thankfully, the weekend came and went without a hitch. The convention was chaotic at times but thanks to the magic of ibuprofen and co-codamol, I made it through with minimal endo pain and I had a blast. The biggest problem I had was trying to cool off in London's 26 degree weather and figuring out what to wear that would keep me looking cute while comfortable yet still managing to hide my bloated endo belly. 

I'm itching to get away again and explore new cities. I have to remind myself not to let my physical symptoms be a setback and stop me from stepping outside of my comfort zone sometimes. It would've been so easy for me to stay in the hotel all weekend out of fear and the anxiety that stems from my condition.

So, I'll end this by reiterating some solid advice I once learned from a dear friend of mine; "don't let the toxic mixture of fear and laziness fuck with your goals, ambition and productivity."

Kiera xo

Introduction

Hiya! I’m Kiera. I’m 25 years old and I hail from Belfast, Northern Ireland. I currently live in the vibrant city of Glasgow, Scotland.

If we’re already acquainted, whether that be personally or via my various social media handles, you’ll probably know me for my love of makeup & drag culture, horror movies and anything that harkens me back to the early 90’s.

I’m an avid supporter of the LGBT community, feminism and the right to clog your Facebook feed full of dog related memes.

However, beneath this eccentric, cheerful exterior and the witty, pop culture-loving image I portray online – dark and dramatic plot twist coming up, guys – I happen to suffer from an illness that is eating me up from the inside.

Okay, I don’t mean that literally. Something isn’t actually physically chowing down on my internal organs.. although it does sometimes feel like that. The truth is, I have a debilitating, chronic condition called endometriosis. Maybe you’ve heard of it, maybe you haven’t.

Endometriosis is a condition which isn’t as widely known or well understood as it should be. It’s a disease which is so common that 1 in 10 women worldwide suffer from it. There’s no known cause and more importantly, no cure.

The real kicker being that not all women are aware they have it. In cases such as these, where it’s not diagnosed early enough or at all, women tend to experience difficulty falling pregnant, or infertility altogether.

It’s for this reason that I consider myself (somewhat) lucky that my body began to show symptoms which prompted me to seek help. I had already suffered ten years of agonising, heavy periods before an additional two years of ongoing excruciating pelvic pain then came during the remainder of my menstrual cycle. It wasn’t until then that I was admitted for a plethora of tests and examinations. Lastly came my diagnostic laparoscopy. I’ll save you a Google search – surgery is required to receive a diagnosis.

So, I guess this is why I’ve decided to start a blog. I suffer from a number of symptoms due to this shitty illness that hinder me from leading a so called “normal life”. I’ll try to skip the gory details – or, maybe I won’t. My primary goal is to raise awareness because I feel that’s something that’s really lacking, and perhaps being as open and gritty as possible is what’s needed to open people’s eyes.

I’ve always wanted to speak more openly about my condition and how I cope on a daily/weekly basis, not just in the hopes of it bringing comfort to other sufferers to show they’re not alone, but also to gain understanding from people and let them see how the most routine tasks can be challenging for me to tackle on my “bad” days.

Some days are harder than others and I can’t stress enough how much it takes a toll on me. Endo has effected and continues to effect my social life, personal relationships, jobs and probably most importantly, my mental health.

Over the past few years, I found one of my biggest struggles was having nobody to relate to. I constantly battled with the frustration of nobody understanding exactly what I was going through, and more importantly, not taking me seriously. I guess that’s part and parcel of invisible illnesses.

I now have an incredible support network that surrounds me full of people who remind me just how strong I am and encourage me on the days when I need it most. I know not everyone is lucky enough to have that, so if I can be a figure of support for someone reading this, then mission accomplished.

This introduction post isn’t a cry for help, nor is it intended to be a sob story. I’d like to use this blog as a platform to let my fellow endo-suffers know that there’s a light at the end of this long, shit stained tunnel (yep, that was an IBS joke). Not to mention, I find screaming into the abyss of the Internet to be quite cathartic sometimes.

Don’t let this put you off though, I’m not all doom and gloom even if I might appear so; I mean I wear a lot of black. I’ll be featuring (somewhat) frequent posts on general goings-on in my life and maybe the odd review now and again of beauty products I like. I mean, that’s what people look for in a blog these days, right?

Failing all of the above, perhaps I’ll just say fuck it and turn this into an online shrine devoted to pictures of dogs. Stay tuned, I guess!

Kiera xo