Thoughts.

As many of you are aware I was finally diagnosed with endometriosis on Thursday. I said after about a year or two but in reality I’ve been battling this since 2014. In a nutshell, Endometriosis is where tissue grows on the womb, and other places including the ovaries, fallopian tubes, inside the tummy, and in or around the bladder or bowel. My aim of this post is to raise awareness and educate people on endometriosis as I think it is such a bleak subject. This thing on a whole is still very raw for me and I’m only touching the base of my story as I am very emotional about it all.

In 2014 I started noticing significant difference in my periods. They were becoming less and less but more painful. My normal menstrual cycle would be around the same time every month on the dot, for about 4 days and I very rarely suffered from pain at all. From 2013- 2015 I had the most stressful period of my life, this is where lost my dad and my mental health state went to pot. I eventually managed to get myself to go to the doctors in 2016 where by this point I had a mega long list of symptoms that didn’t make sense.

As I stated before my first noticeable change was my periods:

My periods had become less and less but more painful. They would only last a day or two, I’d have one very heavy day usually the first but then after the second day it would just be spotting but the pain would linger for the length of normal period ranging from 4-7 days. I began noticing very strange things happening such as bleeding upon wiping after going for a wee when I wasn’t on my period, or after a no.2, I had streaks of blood in both. My bowels have always been temperamental, which is why it was harder to diagnose. Often I’d wake up in the middle of the night in a pool of blood (no exaggeration) and eventually ended up sleeping with a towel in bed my so I didn’t ruin any more sheets. I honestly must’ve ruined about 10 bed sheets. You’re probably wondering why I didn’t use a tampon or sanitary towel: the answer to that is because I didn’t know when I would bleed or not.

Throughout the day I would pass blood clots, again without being on my period, my underwear would constantly be blood stained, as if I was spotting.

I’d have a constant dull ache sometimes sharp in the lower region of my stomach, with occasional lower back pain which worsened in the week before my period, the week of my “period” and the week after, so essentially I would have one week free of pain. I ended up living of co-codamol, which probably isn’t advised but my GP refuses to give me anything stronger, especially as I have a sluggish bowel.

I am constantly bloated, which makes me incredibly self-conscious, body image and body positivity had disappeared I don’t feel attractive. Which I won’t lie I am finding incredibly difficult at the moment. I just don’t want to make effort with my appearance, I can’t stand the way my stomach look, my face is constantly puffy and I look exhausted 24/7. If I could wear a balaclava ALL the time I actually would. I know looks aren’t everything but it’s making me miserable.

LET’S TALK ABOUT SEX BABY. Haha no jokes here though. I experience pain during sex a lot of the time to the point where sex doesn’t even appeal to me anymore because I’m petrified of the pain during and after sex, I also bleed a lot after sex, it’s rather messy. (sorry to be grim) It puts a massive strain on the intimacy levels, because ive found that my partners always think they’re hurting me. Which isn’t the case.

My GP in 2016 diagnosed me with stress, and put me on the pill to help regulate my periods. Which I wasn’t 100% for because I knew something else was going on. I stayed on the pill for around two months and decided I still wasn’t happy. Nothing had changed either.

Two months later I returned and said I still wasn’t happy. She sent me for an external and internal ultrasound. My ovaries and other parts of my reproductive system all came back normal, a relief in one sense but still a pain because I still knew something wasn’t right.

I was made to feel like I was over exaggerating.

I knew something was majorly wrong with my body, as I used to have normal periods, I never had all of these problems when I was younger, so why now?

After being fobbed off so many times I decided to leave it, as they were obviously right.

In 2017 a lot of things started to get worse, I was having time off work because of the pain, I was bleeding irregularly more often, and I was miserable, I was stressed out and I thought there was something malicious going on.

I went back to my GP, ended up seeing a male doctor this time, and demanded that he sent me to a Gynaecologist. I showed him my symptoms and for once someone didn’t argue with me.

A month later I had my first appointment with my consultant, who listened to my concerns and explained to me that she thought I had endometriosis. DIDN’T HAVE A CLUE WHAT THAT WAS. After our chat my consultant tried to examine me, she didn’t get very far, I was in so much pain, and was bleeding on examination she decided to leave me be.

I was booked in for my Laparoscopy on 21st September 2017.

On the day of my laparoscopy I was mega nervous, I hadn’t slept a wink and I just wanted it over and done with. I got there about 11am and was sent down to theatre at 1pm. I didn’t return to the ward until 14:45 as I spent a lot of time in recovery (Didn’t come round well apparently)

When I was finally awake properly I was in agony, my body was so weak I couldn’t speak, all I could do was cry, I was in the worst pain imaginable they gave me some morphine when I was in recovery, and I had some codeine when I was on the ward. When it all had kicked in, I was high as a kite, my consultant came round to see me and explained that things had gone well but like we had expected I do have endometriosis, it was found on my womb and was burnt away as much as she could possibly could. I was initially shocked, tearful, but at peace because I finally had answers. When I was under general anaesthetic I had a hormonal coil inserted which will hopefully help with the pain, fingers crossed it does or that’s a waste of time.

My main concern with all of this is that I wouldn’t be able to have children, I still don’t know whether I can but I do know that if I get any growths on my ovaries then it will make it a lot harder for me to conceive, then I have the battle with my lungs, I’m hoping that they stay on my side and keep me healthy enough so that if I am ever lucky enough to conceive I am also healthy enough to carry a child. Right now it feels like my body hates me, I know that my health can be a lot of worse and I’m not complaining but I just feel like a ticking bomb. Ticking away and I don’t know which ones gonna blow first, my Endometriosis or my Cystic Fibrosis.

 My recovery seems to be going okay, I’m able to walk around a lot more, I can’t bend as much as Id like, the pain is unbearable of a night time, and I’m sleeping most of my days as I’m so tired. So if i don’t reply to you all for a while I’m not being rude I’m literally exhausted.

but on a more positive note Thank you all for your lovely get well soon messages and feel free to message if you have any personal questions, I will always try and help you as much as I can x

I take my hat off to the kids who have lost a parent. The children who think that they’re weak because they’ve had a few rough days and they’ve cried a few times. The ones who feel like outsiders to their peers because they grew up too fast and have a wise head on young shoulders. You should be so proud, because it’s not easy. It’s frustrating but you are strong, don’t give up. There’s a blessing in every curse. We are here to support others the same as us, we are strong in different ways. 

Growing up I recall my dad telling me I had a wise head on young shoulders. For a really long time I hated it, throughout my teenage years I had desired to fit in and became frustrated when 9 times out of 10 I realised I simply couldn’t. However I’m now in early adulthood and have found that the desire to fit in is no longer burning, neither is the desire to stand out. I have come to find that I have a passion for standing for what I believe in and to be carefree in so many ways. For once I have the upper hand.

After my dad died I decided to focus on being a normal nineteen year old for a while instead of a middle aged woman giving her hand of life experiences and words of wisdom. It was eventful to say the least. There was moments of laughter, lots of them, tears more than originally anticipated. I decided 2016 was the year to throw myself into things pretty recklessly, and I’m so glad that I did. We’re in 2017 now and I am the most open minded person I’ve ever met. There were plenty of times in 2016 that I really wanted my dad’s advice and things were really pushed to a limit and the only person I had to depend on was myself. So in 2016 I found me, and by me; I mean the real me.

You’re probably confused and rightly so, because so am I. If I simply cannot talk about my issues, how can I write? I haven’t figured that out yet, all I know is that writing is a positive experience for me, but also a very scary experience. I’m not just opening myself up to one person in a small room (which seems like the easier option) I’m opening myself up to hundreds of people who I don’t even know. People warm to openness though, especially in a vulnerable way. Some may find it easier talking to a counsellor who can give so many answers and help piece things together and so on, with my writing I’ve found I manage to reach out to people on the same level they are. I relate. I somehow manage to help a few people which in reality is a fantastic combination.

From the experiences I’ve had within my life I didn’t always have someone alongside me who I felt comfortable to reach out to that had been through the same thing. Many people hold their personal lives really close to their heart and even though I’m not able to talk to the people who have been through similar situations to myself, sometimes a piece of writing does the trick in the moment. You read it and instantly feel the “hey I’m not alone in this” which for me was a massive relief, because that person who wrote that is still here, able to tell their story. No matter how hard, emotional, scary they got there.

I fear that one day I will forget the sound of your voice, the feeling of your warm hug or the sharpness that would hit my heart when you’d tell me off. I don’t want to forget those things, I don’t want to forget the small things, the advice and most importantly I don’t want to forget who I am. I want to be happy, and I want to enjoy my life, but it’s constantly contradicted by should I really be this happy? Should I really be feeling as free as I am 

The answer is YES.

Grief has no rules, who says I have to spend the rest of my days crying over what I can’t change. No amount of tears will bring you back because if they did my god I would cry a river. If there’s one thing you taught me about life is that you have to carry on no matter what it throws at you. Losing you taught me that I must grab every opportunity whilst I can because you never know when forever may be never again. 

So no matter how many times that fear enters my head, your presence will never leave my heart.

So we found out today that my dad’s cancer has spread to pretty much everywhere, treatment has being stopped and there is nothing they can do for him. He and this blog are the only place I will open up to properly anyway, and I'm so fucking gutted it’s come so soon, I knew this day was going to come but never in a million years did I think I’d be sat here two years after diagnosis saying that this will be my Dad’s last year.

My dad isn’t just my dad, he’s my best friend, the person who knows how to cheer me up on the shittiest of days, the person who gives the most honest opinion and best endless advice I could ask for. I said it in my last post and I’ll say it again, thank you for being my Dad I couldn't have asked for a better one.