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Endometriosis. Period!

By Vicki.

In my professional life I work for the Stroke Association. In my spare time, I enjoy spending time with my partner, family and friends, and their children. I’m also slightly obsessed with my cat Betty (pictured below!). I enjoy photography and have recently set up my own Instagram page with photos I have taken and this is something I want to get into and plan to after my operation.

EndoPicI am writing this for a number of reasons, but mainly to raise awareness especially in light of Endometriosis Awareness week. And to help those close to me to understand why I am like I am, to get a clearer understanding of the whole situation myself and I guess, writing things down is quite therapeutic and something I really need right now!

So, since I was ten years old and still at primary school, I have struggled with bad periods – starting my period at primary school in itself wasn’t the best thing in the world, but when that came with excruciating pain, it was a bit of a harsh realisation that this was potentially what I could expect for a good few years, little did I know just what I had in front of me!

I am 35 now, and have pretty much spent the past 25 years struggling nearly every single month. When I was 21, I found out I had Endometriosis.

Endometriosis (en-doh-mee-tree-oh-sis) is a chronic, incurable condition where cells like the ones found in the lining of the womb (uterus) are found elsewhere in the body. It is a debilitating condition that can cause heavy and painful periods, and can also cause infertility, fatigue and bowel bladder problems – it is basically an embarrassing condition, which is literally a pain in the backside!!!

It is one of those conditions, which no one really understands. According to Endometriosis UK around 1.5 million women of childbearing age in the UK alone are currently living with the condition, regardless of race or ethnicity! Around the same amount of people are affected by diabetes! 

Endometriosis has had a significant impact on my life, in more ways than just being in pain once a month. At 14 years old I was put on the pill to cope with the pain, and I even fainted with pain and even had days off school.

My first laparoscopy (keyhole surgery) was when I was 21 years old, ten years after I had started the periods that left me in agony. My GP at the time thought I must have an STD, or ongoing water infections. I suspected, though, there was something more going on. My Dad had private healthcare and I was able, through this, to have an operation done to do further investigation.

So when I came round from the operation I was told when I came round that I did in fact have endometriosis and it was in quite a few areas but they left it untreated and suggested I have hormone treatment. My boyfriend at the time’s first question was whether he could catch it... it dawned on me right at that moment that this was going to be a continual struggle, despite being diagnosed.

I began a course of hormone treatment, which went relatively well, but it was only for 6 weeks and as soon as I came off the tablets, I was at the gym and fainted... so what next I wondered?! So I had a further laparoscopy where the endometriosis was burnt away. I was having a lot of time off work and they just didn’t understand it, I looked OK from the outside (with make up on, which at the time, I would never go without!) so in their eyes, I wasn’t taking my job seriously and they let me go.

14 years down the line, I’m now 35, I have had a further three surgeries (all keyhole) where endometriosis has been cut away. My most recent one was in 2014 where they found this time I had something called adenomyosis, which is endometriosis inside my womb and small fibroids on my womb and the only option then was a hysterectomy!

So to save a hysterectomy, because having children is something I want more than anything, I chose further hormonal treatment (this was literally my last option as I had tried ALL of them – the coil, the pill (numerous ones), etc. So this option was to go through an early, temporary menopause – basically hormone injections once a month for six months, which made my body believe I was going through the menopause and literally overnight, my body knew about it! I gained a lot of weight, I was having hot sweats, mood swings (even more than normal), I did not sleep AT all, I felt depressed, anxious (again, even more than normal!) I soon came off the injections as yet again, hormone treatment is just not the best option for me, my body cannot tolerate it and the weight gain in itself was enough to make me feel even more miserable.

Believe me, opting for my periods to return was a big decision to make, but sometimes the pain can be unbearable, but I know it’s there and I know my limits now and how I can manage it, even though it massively interferes in nearly everything I do.

So it continued; my periods started again at full bolt, the pain returned, the pain around my periods came back, the aches in nearly every part of my body, the severe fatigue, which is one of the biggest curses of endometriosis came back but the alternative was constant insomnia with the injections.

However, early last year I saw a new consultant and chose to have the hormonal injections again and overnight, my body thought it was going through the menopause, but this time I was given hormone replacement treatment patches to cope with the hot sweats, insomnia, weight gain etc. This was the most awful I had felt in a while, I did not sleep for days, I was depressed, anxious and fat and had even more time off work, so the injections stopped after 3 months and my periods soon began again with a bang! Below is a photo of me during the injections, whilst I was sitting in the GP surgery for more blood tests, this is the worst I have ever looked/felt...

EndoPic2I would be a billionaire if I got a pound for every trip to my GP surgery, or blood tests to see if there was something else going on (because of course, endometriosis cannot be the root-cause of this pain), most of which has been pointless but one visit last year, I felt absolutely exhausted and explained that even when I’m not on my period, I feel so tired and ache all over, every morning I wake up (no exaggeration, I promise) and I have a new pain somewhere – my legs, back, hips, shoulders etc etc. as well as daily pains in my stomach, where I can only explain I feel like I have a pineapple being turned around and around and pushing on my bladder – sometimes I feel if I don’t have a wee immediately, I will self-combust!

I was confused how endometriosis/adenomyosis can cause these aches and constant fatigue, and she told me I more than likely have fibromyalgia as well and endometriosis and fibromyalgia can be linked.

So on top of all the other painkillers/medication I am on, I was prescribed a drug called Gabapentin, which is used to treat neuropathic pain. I take around 300mg-600mg per day, as well as an antidepressant, and daily painkillers – mostly cocodamol and naproxen. So another condition to contend with – what joy! I did see a rheumatologist at the end of last year though and am awaiting a referral to a ‘fibromyalgia clinic’ to support me with coping with this.

Over the past 12 months, I have honestly never felt so rubbish. Every single day is a struggle, I am so tired all the time, if I make plans, I have to ensure I can fit in a nap beforehand, and make no plans the day after. I honestly ache like an old lady, in fact some people older than me have more energy than I do, I have seen my pillow more than I’ve seen anything else! I have gained a lot of weight, and that’s simply because I don’t have the energy to exercise; my diet isn’t bad, especially Monday-Friday, I make sure I eat well. I have started to get spots, which I’ve never had before, I have constant back ache, and I feel like someone is pulling at my stomach 24/7. It makes me irritable, moody and teary, and all I want is to feel like a normal 35-year-old. I even had an ambulance out to me recently & sent to A&E for morphine, and gas and air for the pain!

My wife is amazing but there is only so much someone can do for you, I am sure she has questioned numerous times whether I just have a low pain threshold, or in fact I am just lazy and like my bed too much! I dread my periods, I have learnt now not to make too many plans, especially when I do have my period as I know I will end up letting someone down. Working full time is hard work and even though they are amazing and understanding, they still pay me to do a job and sometimes it is impossible to concentrate or even turn up at work at all – I feel so much guilt for this and feel I have to try that much harder to do a job which isn’t relatively that difficult.

My job can be emotionally draining, but I do realise things could be a lot tougher than they are, and some people don’t even have the option of going to work, or meeting up with friends or leading a normal life and that’s one of the reasons why I have made the decision I have.

So last June, after much consideration, upset, and conversations and arguments with my partner I have decided my last hope of leading a relatively ‘normal’ life is to have a hysterectomy. I have now been on a waiting list for around four months to have this procedure and I am booked in for the 12th April – to say I am terrified is an understatement, but this weekend I have yet again been stuck to the sofa, with a hot water bottle glued to me with terrible period pain and tiredness like you wouldn’t believe, so I am now counting down the days and how many periods I have left!

I have always dreamt of having children, being a mom is probably the one thing I know I will be brilliant at – I have a lot of love to give, and my own childhood wasn’t the easiest, which makes me want to give a child more love! This is probably the biggest reason I didn’t chose a hysterectomy in 2014 as I naively believed we would have children, and it would all be OK, but some things aren’t possible, but I know that doesn’t mean to say I still can’t lead a happy and fulfilling life, which right now I’m not.

When I made my decision, I could not stop crying, and when I have a drink, I end up getting upset about not having children, which makes me feel guilty for potentially ruining nights out, but it is a massive decision to make and something I will not get over in a day, but I have some wonderful supportive people around me, but I do try not to burden people with it too much. I’m considering having counselling to help support me.

Who knows how I will feel after the hysterectomy, but if it means no more painful periods, less fatigue, no tablets, which I am hoping to stop taking by the end of the year and more energy, then this decision is worth it, I hope. I will be having my womb and cervix removed, and my ovaries will remain (for now), so I won’t go through an early menopause, but it may come a bit earlier than normal, and I won’t have any more smears!

Endopic3I hope this blog has raised a little more awareness of endometriosis. There are obviously so many more conditions out there which I could have and some which friends and family do have, some of which are life limiting. I just don’t understand why so many women have to struggle with this horrible, cruel and chronic condition and hide away from it. We need to speak about endometriosis and speak about how much it can affect us, but also those close to us. It is a debilitating condition and something I wouldn’t wish my worst enemy to have.

Thank you for reading. By the end of 2018, I hope to feel like a new person. I can finally get on with my life and fulfil my hopes and dreams, firstly starting with losing some excess weight!!!

The photo of me when I actually felt well at our wedding in 2015 – is how I want to look again, but I want to feel even better than I did in this photo and be able to walk around without feeling like I have an elephant pressing on my stomach and back!

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