My story so far.....

Hey guys!

So I thought it was a good time for me to share my story so far, so you lot know a little bit more about me and my journey with PCOS and Endometriosis. I'm sure many of you can completely relate- and if not, then it my give you a few tips on what to look out for and what to expect with these two conditions.



I have a habit of being overly frank in the way I speak, but I think it's important to get used to talking about these issue's as they're so important!

BRACE YOURSELF. THIS IS A LONG AS HELL POST.

PCOS

(Polycystic Ovarian Syndrome)

At the age of 14, the dreaded periods started to happen!(GASP!) I remember the first time sitting and thinking "oh my god, is this what it's really like?", I recalled being in a science lesson in which the teacher had said a woman will lose around half of an egg cup in blood during her period and I was instantly paranoid that something was wrong. Half an egg cup?! Half an egg cup?! How am I still alive?! I've lost about 10 egg cups in the space of a few hours!

The pains that started were excruciating and I was constantly asking my friends and other girls if their experiences were similar- many said they had the odd cramps but they never had extreme blood loss or the pain I'd described. I'd spoken to my mum who had reassured me that everything would be fine as she had always had similar problems when she was younger. I carried on for quite a few months trying to ignore the nightmare that I knew would be coming each time. I had to change continuously all throughout the day and the pains wore on. Eventually I spoke to my aunt (I'll probably speak of my beautiful Aunt frequently who passed away 5 years ago) who suggested we go to the doctors to see about me getting put onto the contraceptive pill as it was helpful in regulating and controlling hectic periods. After being put on Dianette/Co-cyprindol at 15, I became very regular however I was still having intense cramps all day, extreme back ache, heavy bleeds and chronic fatigue. I continued on this way for around another year before I realised that things were getting increasingly worse- my skin was absolutely terrible. Forget normal teenage skin, but full blown enraged acne wreaked havoc on my face, back and chest- I cant tell you how much bullying and crying myself to sleep I did before I finally got referred to a dermatologist who put me on Roaccutane at the age of 18. I also suffered terribly from Hirsutism (excessive hair growth) particularly on my forearms. It made me miserable. After countless trips to my GP (now 16) and after researching online I suggested that maybe it was possible that I had Polycystic Ovaries, this was swiftly dismissed being told that if this was the case, my hair growth would be more extreme and that my symptoms were normal. Months went by, being miserable and suffering worse than ever. The worst part was, I felt deep down in my gut that there was definitely something wrong, yet everyone was telling me that I was fine.

I picked up the courage to go back to my GP and begged to be referred to a specialist who might be able to help. I saw a gynaecologist who also said it was highly unlikely that I had Polycystic ovaries and so I was dismissed again. I wasn't happy at all, I pushed and pushed until finally he said that they would reluctantly offer me a diagnostic laparoscopy to see what was happening.

My first Laparoscopy at the age of 17 was overall an okay experience. The surgery was fast- and minimally invasive- I had only a small scar on my belly button and towards my bikini line. I was very sore but so relieved when I came round and the doctors told me I had been right all along and that I did indeed have Polycystic ovaries. FINALLY! A DIAGNOSIS! PRAISE THE LORD! I was pretty smug at the fact that I had pretty much correctly diagnosed myself when so many other "professionals" has disregarded me.

For many years I remained on the pill, suffering constantly with my periods every month which were getting increasingly worse. I would become so tired I could barely stay awake, I began nodding off in college and also after college when I was working. I would work and sleep and work and sleep. Things began to get seriously worrying. I began losing so much blood that I would almost pass out. I could barely stand up most days and no amount of pain killers would bring me any relief. I'd curl up fetal with a hot water bottle for comfort just praying for it to end. I began to pass large amounts of blood clots and would get searing stabbing pains in my pelvis during my period which carried on daily. I became more and more depressed- after being on anti-depressants since the age of 14. Initially I was on amitriptyline (which made me so horrifically tired I had to stop taking it) which then moved on to citalopram which I felt didn't help at all. My moods were constantly low. I would cry for no reason and find it impossible to stop. I could easily wake up in the morning, stay in bed, cry all day and then go back to sleep and continue this over and over again- infact I did. for years until I was around 22. After giving up on citalopram and being off anti-depressants for years I began to struggle continuously with my emotions and feelings. I was convinced there was something wrong with me. My family branded me as "overly sensitive" and my mum, being raised in a tough Scottish background was less than understanding. If I was feeling low or if I was to cry she would tell me to "man up" or "stop blarting" so I began to hide how I felt from most of the people around me. I'd cry in private, in the bath, in toilets, and in bed at night. I struggled constantly with everything within my life. Everything became an effort and for months I drifted, unemployed, miserable, suffering terribly with my body and being branded as lazy. It wasn't that I didn't want to work or do normal things like most people, it's just that I didn't have THE ENERGY. I just couldn't bring myself to do anything. People intimidated me and I would get incredibly anxious. After the breakdown of a relationship I slipped into a deeper depression which lead me to have a mental breakdown. I had signed up for a Fine Art degree at Staffordshire University and was due to start my first semester. My family held an intervention of sorts and took me to the doctors after I'd made threats on my own life- I was diagnosed with clinical depression and placed onto Prozac/Fluoxetine. My hair started to fall out with anxiety and stress and I ended up losing half of my hair. Determined to turn this into a positive I began documenting this to use as part of my fine art first year work.

ENDOMETRIOSIS

More time passed by with my pelvic pain and chronic fatigue getting worse, including constant re-occurring UTI'S and kidney infections which no anti-biotics could remedy. I was stumped, my doctor was stumped. The pain would be so bad I would hold my breath and hope to die, or at least to pass out. Anything to stop the pain. This carried on until convinced something else was wrong- I went to my GP. I'd be researching online conditions that could cause such pain and such discomfort. All of my symptoms lead me to Endometriosis. My doctor once more said that it was highly unlikely that I would have endometriosis and I was sent to several ultrasounds which only showed my PCOS. (Afterwards I always thought this a stupid course of action as Endometriosis doesn't show on ultrasound) DETERMINED to get to the bottom and have some relief I begged my GP again to refer me to a specialist. I was then sent to a gynaecologist at The Hospital of North Staffordshire where I was seen under the clinic of MR Misra.

He suggested that I have another laparoscopy in order to diagnose what was causing such pain. After months on a waiting list I finally had a date for my surgery. I had my surgery in February of 2013 which was a very difficult experience for me. The surgery was painful, very painful and I had to stay in hospital due to complications with my bladder which was rather depressing. I had 3 more scars across my abdomen, one either side of my stomach and another in my belly button to the side of my previous scar. Once I had seen the surgeons they had told me that I did have Endometriosis and that they had cut and burnt away what they had found which was at the back of my womb and around my left ovary. I had a painful recovery- which was dismissed by most of my family. I was made to feel as though my Endo was exaggerated and expected to just resume life as though nothing was wrong. This made me even more lonely. I had tried to explain it to my sisters and my mum on many occasions and whilst they listened, not a great deal was said and I didn't feel particularly supported. So as usual I kept my pain and sadness to myself. Months went by and I noticed a significant improvement in my pelvic pain. I could go weeks without any pain at all which was absolutely amazing. I felt invincible! Sadly this didn't last long before the pain started to return, still I battled on determined not to let Endometriosis control my life. I spent most of my time alone, at home focusing on my artwork, drawing and painting and reading and trying to do well at university.

 It all came to ahead in Christmas of 2014 when I had begun to have serious blood loss. I had passed so much blood and so many clots I was unable to stand. I was ravaged. I couldn't walk or move and the pain was so severe I was crying out and begging for it to stop. Begging my mum to take me to the hospital as I couldn't bear another instant of the awful pain. I was taken to Accident and Emergency and assessed by several nurses and doctors to rule out the idea of a miscarriage- they didn't think that it was miscarriage related but as I was so worn out, anaemic, fatigued and dehydrated they admitted me with a severe Endometriosis flare up and I stayed in hospital for 2 days on painkillers until I was well enough to go home.

Another trip to my GP had me being sent back to gynaecology to be investigated once more- after 4 different both internal and external ultrasounds, my results had come back clear, revealing nothing but my polycystic ovaries and I had had no other treatment advice other than to continue taking painkillers and my pill back to back for 3 months at a time. I tried this, reluctantly and it only made my symptoms worse, my periods became irregular, late, lasted almost 2 weeks and all the while the pelvic pain never relented. Severe bladder and bowel complications started to happen. I could no longer hold a small amount of urine without my bladder aching painfully, I find it difficult to go to the toilet and would be unable to for days, then other days I would have to go several times a day, all the while needing to wee every 5 minutes and constantly having sharp pains within my bladder and bottom. After another consultation with my gynaecologist, I had been referred to a urologist who performed a cystoscopy on me (an inspection of the bladder with a fibre optic camera inserted through the urethra) WHICH WAS A TOTAL NIGHTMARE. The numbing gel didn't work and I felt the whole thing as though someone had inserted a flaming hot metal rod covered with razor blades into the area you pee from. It was that awful following this procedure I had to go onto Tramadol to help with the pain. I could only wee if I was in the bath and it would take me half an hour pressing on my bladder, sobbing, shouting in pain just trying to expel a little bit each second.  It genuinely hurt me more than anything I've ever experienced. WOULD NOT RECOMMEND my friends!

So I had asked if it was possible to have another surgery, which was dismissed on the basis that the chances were Endo had not returned so quickly..... and so this is where I am, currently waiting for a response from gynaecology to let me know if it would be possible to have another surgery to remove endo.

So once again I'm in limbo. My symptoms are worse than they have ever been, my bladder pain is constant, my toilet issues are constant, my pelvic pain is constant and my periods are never ending stretches of agony and hell.

So it all sounds a little bleak right? Luckily, I have a lovely and very understanding boyfriend who supports me through all me endo and pcos and depression and anxiety hell and I am extremely grateful. He puts up with my irrationalness, my low moods and my depressions and it means the world. Thankfully he doesn't mind that it plays such havoc on our sex life due to the fact that sex is so incredibly painful it's like being attacked with a flaming baseball bat dowsed in acid. Not very appealing.

Yet I STILL HAVE HOPE.
Because I'm a tough little bitch.
I'm determined to get my degree, i'm determined to become a parent and i'm determined to tell endo every day to fuck itself!

Sorry this post has been so incredibly long. I really wanted to give you a detailed account of my experiences up to date with these conditions. My advice to anyone who is suffering from similar symptoms is to trust yourself, trust your body and your gut. If you feel something is not right, tell someone and push and push until someone listens and offers you the help and relief you so rightly deserve. We may not be able to cure these terrible diseases, but we can help to spread awareness and support each other through our worst and best times.

My next blog post will be on the concept of infertility and how us endometriosis sufferers are faced with some really tough barriers!

Until next time and thankyou for reading!
Love,

The Endo Artist.

x