Adventure awaits…

Adventure and travel are something that people usually look forward to, thriving on the thought of trying something new and feeling excited to get out of their comfort zone. There are many things in my life I have achieved and some of these moments occurred when I was suffering from a flare-up of Endometriosis. I am an expert in ignoring all the warning signs that my body might give me. Instead, I opt to push through and make sure that I am not missing out on anything fun and exciting. A couple of years ago I was kayaking down the Ardeche in France when my body had a massive flare up. I was beyond bloated and exhausted already before I even began paddling. But every so often in my kayak, I would take a deep breathe in, take in my surroundings and feel lucky that I was in the position I was in. Instead of letting it get me down and allowing my condition to take over, I powered through regardless of the stabbing pains in my uterus and at that point, I was incredibly proud of myself. After this trip, I realised it was more about my mindset than simply giving up.

Me in the Ardeche!

Last year I managed to travel around New Zealand as well as complete a 12,000ft skydive over one of their most beautiful lakes. It was the most amazing experience I’d ever had and I was only 3 months post surgery. Whilst getting into the diving suit I remember feeling a surge of pain through my stomach meaning I spent more time worrying I would wet myself or suddenly need the toilet than actually worrying about jumping out of the plane. It was the one time that my illness distracting me was actually rather helpful! Before I left the UK, I was insanely worried about every aspect of travelling with Endometriosis. I would sit up at night thinking of all the ways I could protect myself against a flare up and potential ways of helping ease pain. I packed tones of heat pads and deep heat, my case was lined with night time sanitary towels and I had more pills that your average pharmacy. But I tried my hardest not to let it ruin my experiences. I made sure that I rested when I could and I made sure that I avoided any food and drink that would trigger a flare-up. I did it because I refused to miss out on all the opportunities and adventures we discovered along the way, again I never gave up.

Just before the skydive over Lake Taupo in NZ!

Last weekend, I went surfing in Cornwall with my other half. It was the first time that both of us had ever surfed and I was a little worried. We had 3 sessions over 3 days, which meant not a lot of relaxing and more importantly, not a lot of recovery time! Since being on the HRT treatment I have put on a lot of weight and haven’t had a lot of energy to exercise. So I was really worried that not only would I feel very uncomfortable with my swimsuit on but I’d also be unable to push myself up on to the board, let alone ride a wave. I hid my worries away and focused on planning the trip, packing the bags and getting us ready for a 5hr drive. I was full of questions, ‘what if I need the toilet in the wetsuit? how bad will my endobelly look in a wetsuit? what if I start to panic in the water?’ I ate a little breakfast to prep my energy levels and then I got ready, the only swimsuit I own that fits me now is very old and looks like its owned by a 50+yr old swim instructor from the 90’s. But I couldn’t be bothered to care.

First of all, putting on a wetsuit is one of the funniest things I have done, whilst laughing at myself shrink wrapping my body I realised I might as well embrace it because I couldn’t hide in it! There was no way of holding in my stomach or hiding my flabby arms so I let myself relax. To be honest it felt nicer to be covered up than to have my whole body on show (even if I did get a ridiculous tan!) One part of me that really has been knocked from all of the hormone treatments is my body confidence. I can’t look in the mirror without feeling upset with how I look and how I feel in my own skin. I know that everyone is different and I love that us ladies are learning to embrace our bodies, whatever shape or size. But I think it can take a lot of hard work and a lot of mixed emotions to get to a place where you are comfortable with yourself and unfortunately all the hormone treatments have knocked me off track a bit!

Anyway, I digress… the first session on the beach we were doing a warm-up and I genuinely thought I was going to collapse! I was huffing and puffing before I had even entered the water and once I was in the sea, I felt totally out of touch with my body. I couldn’t get my arm muscles to co-operate with the rest of my body so lifting myself on to the board was hilarious. Swinging my legs up onto the board was even funnier because every time I lifted myself I couldn’t hold it long enough to swing them up and around. I was lying on my stomach so much I thought I was going to throw up in the middle of the sea, which only made me start to panic and made my stomach start to really hurt. Adding to this, my glasses fogged up so much I had to take them off and was then basically blind and the board hit my leg so hard I had an instant green bruise. I came out of the sea feeling really down with myself. But on the second day, my boyfriend pep-talked me up and I felt a lot better about getting on the board. Slowly but surely I began to push myself up with my arms easily and balance myself to actually get on the board. Laying down still felt incredibly uncomfortable because of the pressure being placed on that area but aside from this I was able to push through. Long story short, I managed to stand and ride a wave at the end of the second day!!!!! I felt like I was on a high and it made me realise that all the adventures I want to take and all the activities I want to do shouldn’t be controlled by my condition.

luke and liv

Me and my boyfriend in our wetsuits ready for day 2!

Chronic illnesses can take too much control away from us and limit the goals we set for ourselves. They cause us to miss out on opportunities or dreams we had before we became poorly. But I don’t want to live like that, I want to explore what I can do and what I can push myself to achieve. Yes, there will always be days where I have to listen to my body first and rest or put my plans on hold but I don’t want my condition to stop me from experiencing all the wonderful fun things I can do or from challenging myself. Although I might not like how I look right now and sometimes I have sad or mad days, I am a strong believer in positive thinking breeds positive outcomes! Remember never give up… something Bear Grylls always says…and that man knows adventure!

New Lifestyle.

There are many different aspects to our lifestyles that can affect our bodies and when you suffer with a chornic illness it’s very difficult to pinpoint what is causing your pain. You look to each aspect in your life and think of what might help alleviate it. It’s not an exaggeration to say that you end up trying anything, from fad diets to home remedies. All in the hope you’ll find something to help you achieve some sort of normal feeling. You get fed up of feeling out of control and let down by your own body. 

After surgery, I stopped eating meat because my consultant informed me that scientists had found red meat contains hormones which contribute to the growth of endometriosis, she advised me to cut it out but once I learnt this I didn’t want anything to do with it anymore. I also cut out caffeine, soya and alcohol for obvious ‘endo belly’ reasons. I had never really thought about my diet affecting my endometriosis before, but looking back, why would the fuel I provided my body not be altering its ability to work properly? Becoming a pescatarian was pretty easy and I felt better for it. However, I was still getting the endo bloat big time and my skin was becoming dry and bumpy. The Depo injection wasn’t working either so I started to develop a hardcore doubt in medicine coming to my rescue. When I was told I needed to take HRT along with Zoladex implants, I began to panic even more. I felt like everything was being taken out of my control and so I took action with the only thing that I could… what was going into my mouth! 

I decided to educate myself first before making any dramatic changes. Obviously, people don’t become plant-based/vegan just for health benefits so knowing I was going to be helping the environment and saving animals was certainly the best kind of benefit! I watched documentaries and read study reports about how lifestyles affect our bodies, one of the documentaries even mentioned endometriosis and after watching a couple more, I felt confident in my decision. I hadn’t realised the meat and dairy products I consumed were full of hormones that were altering the levels of my natural hormones or antibiotics that were slowly building up a resistance in my own body. It quickly dawned on me that I hadn’t been helping myself at all, looking back at all the times I had been treating my body so badly whilst under the impression I was ‘treating’ myself. For example all the late night cheeky milkshakes, study snacking on Cadburys caramel nibbles or sunny days in the pub garden with ice-cold fizzy ciders! None of this has been treating my body correctly at all  and to be honest, I felt like a complete idiot.

Due to veganism becoming a slight trend in the UK, I haven’t found it incredibly hard at all. There are cookbooks on sale, restaurants providing at least one option and supermarkets listening to the demand. I have been vegan for 6 months and I’m definitely seeing an improvement in my endo symptoms. My stomach is rarely tender or bloated and the gas pain has definitely decreased. Unfortunately, I still have problems. It’s hard to tell what symptoms are being affected by my diet or the hormonal treatment that I am on. So, for now, I am going to keep at it. And there is still a lot to be done, I want to try and control my sugar and carb levels as I am putting so much weight on due to wanting to eat EVERYTHING in sight. I had my last Zoladex injection and I am ready to watch my body get back to some type of normal (whatever that is!). But hopefully that means I’ll be able to see the real changes that my lifestyle choice has caused. Taking control over your life isnt easy when suffering from a chronic illness, most days it can feel like your body controls you, physically and mentally, so taking the time to really assess what you can control in your life might benefit you! 

If you are thinking of making the move to plant-based but aren’t too sure about it, I would definitely say try doing it once or twice a week. Make small changes, for example, trade normal butter to sunflower butter, swap the cows milk in your coffee to almond or oat milk and try tofu once a week (its lovely when cooked right – marinate first in a nice sauce then fry it up!!) I have never been more excited to cook and get in the kitchen, everything tastes fresher and cleaner. A lot can be said for just opening your mind to the possibility that there is more to know and accepting that ignorance isn’t okay! My decisions might not be what you believe, think or feel but I thought I would open up about what the changes I have made to my lifestyle due to my endometriosis. Also I am really happy when I think about the good I am actually doing, which when looking at it that way, it’s really not that hard to do at all! 

Check out the following Instagram accounts that I really love for some inspiration!!

@bethany.vegan.kitchen

@becauseimvegan 

@decadent.vegan

@theholttwins

HRT & Me.

I’m 25 years old and for the past three months, I have been on a form of HRT called Livial. I am not the only person I know a lot younger than expected to be on HRT, in fact a lot of girls I know have been on it for longer and are even younger than I am. Firstly I should state the reasons why I am having to take HRT at the ripe old age of 25. I have Endometriosis and as there is no cure, hormonal treatments are used to prevent growth and development. After trying Depo Provera, a hormonal contraceptive injection which didn’t work for me. My consultant decided it was time I tried a stronger form of treatment. Zoladex is an implant that is used to prevent the production of oestrogen, it is injected into the stomach on a monthly basis, currently, and I have had 3 doses. Consequently, this implant causes the body to react as if you’re going through the menopause. That’s where the HRT comes in. As I had already begun suffering from typical symptoms such as hot flushes, night sweats and mood swings whilst on the first hormone injection, my consultant decided not to take any chances and place me on Livial whilst taking the Zoladex. (I hope you’re keeping up!!)

When sitting in your doctors chair and listening to all of the information being poured all over you. Sometimes it’s difficult to take it all in. My main concerns were regarding what the mix of drugs would actually do to my body. I heard the words ‘hot flush’ and ‘night sweats’ so many times I wanted to explode. Hot flushes can hit you out of nowhere and they get worse, the more you stress about them… “Is my t-shirt wet? Is my fringe sticking to my forehead? Can I just pour this water over me without anyone noticing?” Night sweats are the evil twin of hot flushes. All of a sudden, mine and my boyfriend’s night routine flipped. It was me who wanted the window open, it was me kicking off the covers in the middle of the night and it was me who was wriggling around uncomfortable every time he leaned near me. They explain to you the most common side effects and basically leave you to get on with it.

What they don’t tell you when they recommend HRT, is that whilst it is ‘helping’ towards the issues that are caused by the menopause…it brings with it a WHOLE array of side effects. I wasn’t told about the itchy, dry skin. That got so bad at one point, I asked my other half to inspect my scalp to make sure I didn’t have nits. It was only after seeing my nurse for the second implant that she told me itching was actually a common side effect that wasn’t vocalised as much as the other delights we have to deal with. My scalp is the most affected area but once I start itching, my whole body becomes one big itch. Of course, this isn’t so bad when I am at home but can become very embarrassing when I’m in public! Another issue that doctors apparently like to keep quiet when preparing you for these drugs is regarding your hair growth and its condition. For the past three months, my hair has grown faster than I have ever known it too. I realise this doesn’t sound like a cause for concern, in fact, it might actually be a bonus to popping these pills… BUT that’s not the only problem regarding my hair. It’s also falling out faster than my labradoodle sheds, and its condition has gotten worse throughout the months. Luckily there are treatments on the market which help keep it conditioned but it’s become very thin and breakable, which is just another lovely self-confidence hit I could have happily not had.

One side effect that my consultant was kind enough to warn me about was the predictable weight gain. She even went to the lengths of advising me to buy new clothes in larger sizes, because however hard I tried to keep the weight away, she was sure it would catch up with me. I’d like to say I managed to prove her wrong. However these pills also increase your appetite and although I am vegan, which means gorging on fatty foods is a bit more difficult, I still find myself eating everything and anything in the fridge after I’ve eaten my dinner. Really there is no winning with HRT when it comes to weight gain, it caught up with me in my second month of treatment. The weight doesn’t just cause self-confidence issues but finding clothes that are comfortable to wear can be really challenging, luckily this isn’t something I am a stranger to. As any girl who lives with Endometriosis will know, feeling bloated and bigger than usual is something you get used to. So like everything else that’s been thrown at me in the past few months… I am just going with it. But I still have days where I stand in my favourite pair of jeans unable to zip them up and feel extremely disheartened, I should know better now than to not even put them on. The weight could also be due to HRT increases fluid retention, alas another contributing factor to the never-ending bloat.

Aside from the temperature changes, the weight gain and the itchy skin. Some days you might have to contend with nausea, which is just bloody horrible, painful joints, brain fog and even bowel issues. None of it sounds particularly enjoyable, which is probably because none of it is! I appreciate that you might be reading this thinking, “what a hypochondriac!” (Trust me I have seen the looks) and as much as I would like you to live a day in my shoes, seeing as you can’t… I would probably just tell you to piss off. Understandably not all of these symptoms are solely related to the HRT, we have to remember its being used alongside another treatment that doesn’t come without its consequences in my case! BUT I am giving my experience a voice because when I was first told I had to take HRT, I was genuinely embarrassed. I couldn’t believe at 25 years old, I was having to take a pill that was typically given to women in their later years, I was even having to take it before my own mother. Nevertheless, I have come to understand that our bodies are all different, there is no normal and there is no typical. If I have to stay on the HRT then it won’t be for long and I’ve learnt that HRT isn’t just for older ladies and therefore it isn’t just affecting one generation.

UPDATE: after seeing my consultant last week I have had my 4th Zoladex shot and begin the next month of HRT. 3 more months of uhh fun :/

Versatile Blogger Award

The Versatile Blogger Award

What a wonderful comment to wake up to from Endo Tough! Such a lovely and very unexpected compliment from Courtney (www.endotough.com) who by the  way has a brilliant blog dedicated to giving advice and support to us girls!! Check it out!!

I think this is such a wonderful idea to help us support each others voices and continue to raise awareness! So I believe how it works is as follows: You disclose 7 interesting facts about yourself and then nominate 15 other blog authors that you enjoy reading! (mine will be endometriosis aimed blogs (or Instagram’s)…so you may have been nominated already!)

Here goes nothing…

  1. I used to be an air hostess for a UK airline called Easyjet.
  2. When I was 19 I lived on the Australian Gold Coast for 4 months.
  3. I’m left handed (and therefore grew up being told I was an oddball!)
  4. I have a Labradoodle called Angus and he is black with a ginger beard.
  5. I am allergic to plasters and I HATE needles.
  6. I have a tattoo on my left shoulder (three stars… which really needs re-doing!)
  7. When I was younger I used to want to be an actress.

They may not all have been interesting…but you might know something about me now that you didn’t before… lucky you 😉

So here are the blogs that I enjoy reading and following (I am useless at actually pressing the follow button, I end up just reading and then forgetting to follow! I have rectified that now!) ….

  1. https://myendoperspective.wordpress.com/ – I adore this lady!! She has been so supportive of me since I started blogging and her blog is full of lovely posts.
  2. www.linktr.ee/iamwendyengland – Wendy is amazing, she has headed up endoeducation and done so much to bring our community together whilst dealing with her own Endo journey!
  3. http://linktr.ee/life.with.kimberli – Kimberli has supported me through the past few months and I am forever grateful for her feedback, advice and kind words!!
  4. https://nicolesendojourney.wordpress.com/ – Nicole writes very honestly about her journey with Endometriosis and I find it really refreshing to read!
  5. https://www.instagram.com/memylifeandendo – Georgia’s instagram is a blog in itself and I love her posts! She’s so lovely and her posts are always so well written!
  6. https://thefrecklyfawn.com/ – This girls is awesome! Brookes blogs are full of wit and lovely thoughts to help keep you positive about living with endo!
  7. http://livinglifeyellow.weebly.com/blog – A young perspective of living with endo and this lovely lady is working towards helping educate ladies in NZ who suffer with endo! – shes pretty awesome!!
  8. https://theendotheworld.com/ – Claire is another fantastic blogger and she writes about endo in such a lovely, relatable way!
  9. http://linktree.ee/endowifelife – Dana is such a huge support! I have recently recorded a podcast with her and shes really given me the confidence to keep my voice loud and proud!! I am very grateful to her!
  10. https://www.instagram.com/chronicallytilly – I am really happy I found Tilly! Her Instagram again is like a blog and I love reading her posts! When I have been down Tilly has reached out and helped!!
  11. https://www.sineadendometriosis.com – If your a lady within the community you should know about Sinead, she is doing so much work to get our disease recognised and her website is fantastic!
  12. http://www.natashaleah.blogspot.co.uk – So happy that I discovered Natasha! Another UK girl writing about her journey!!
  13. http://mindbodyendo.com/pilates-journey/ – Warning!! You will be envious of Amelia’s porridge and dinner bowls but its so worth following her and reading her blog because she posts such positive and encouraging words!
  14. https://www.instagram.com/chronicallyclassy – Another Instagram I know but the posts Karina writes are blogs in themselves, again she gives a very honest account of her journey with endo.
  15. http://endometriosisawarenessweb.wordpress.com – A fantastic blog for lots of information about endometriosis and a really wonderful account of living with it from a young age!

I realise that a couple of these are Instagram accounts – however I feel that some people use Instagram as mini blogs and therefore I enjoy reading them just as much as another blog post! I am looking forward to the 7 interesting facts about my nominees!! Get following ladies! 

Love Liv x

Zoladex 1 – Liv 0

So I have noticed recently on a couple of different Instagram accounts that people are asking about Zoladex. What’s it like? Does it work? How do we feel about it! So I thought, as someone who is currently taking the drug, I might as well give you a little update before I receive my final injection!

For starters, when my consultant told me about Zoladex I requested there and then to be placed on HRT as well. I was already experiencing side effects similar to menopause on the Depo Provera injection and they were making my life hell. So I am taking Livial which is an HRT drug to help with the side effects such as hot flushes and night sweats. Basically, your body is being tricked into thinking you’ve suddenly aged (if you’re me, nearly 30 years!) and hit the menopause. Of course, naturally, along with this comes a whole load of symptoms, not unlike many of the endometriosis symptoms if I am honest. Mood swings, hot flushes, headaches, body aches, brain fog etc, etc, etc. On 22nd December I headed into the nurse’s office expecting the worst. I am not a fan of needles and if you’re not I suggest you don’t look. It wasn’t explained to me that Zoladex is an implant that goes into your stomach releasing the hormones that way, I was under the impression it was a quick injection. My nurse offers me local anaesthetic which I took because… well who wouldn’t? It bruised around where she placed the injection and apart from the initial pain, I only felt a little numb and sore afterwards. 

The first week was magical, I felt like I was back to me. I had been dreading the whole festive period, knowing that my calendar was becoming busy and full of food, friends, family and fun so, obviously, like most of my other endo sisters, I was in full blown anxiety mode. My aches and pains had slowly slipped away and although I was a busy bee during that week I only felt naturally tired. Usually, I would have been totally wiped out. I felt more energetic, I was able to be intimate with my other half without any pain or bleeding and I felt more like me! I even enjoyed a cheeky glass of bucks fizz on Christmas day and felt okay. But as the New Year dawned so, too, did the bleeding. January 2nd, only two days into the new year, I felt awful. My whole body had reverted back to feeling disgusting, heavy and achy. With really horrible stomach pains I had to take my first sick day from work since starting in July. Having a shower was exhausting and I didn’t want to socialise with anyone. I spoke to my doctor after dealing with the bleeding for a week; he advised me that it’s common to bleed, especially on your first month of Zoladex, but if it continued for up to 3 weeks, I was to go in for emergency blood tests because my iron is already very low.

Not only had I been having the bleeding problems (which fingers crossed at this moment in time seem to be easing up again) but I had noticed a little bit of acne on my back which I have never suffered with before. One minute I will be totally fine and the next I can be in floods of tears – this isn’t something that I am a stranger to, in fact since I have been on any form of contraception I have had to deal with mood swings and usually I do pretty well with controlling them. My hair is getting greasy pretty quickly, too, and needs washing way more often than I am used to – so if you use any hair products that are good for greasy hair and nice to the environment please let me know! Although on a positive note I think my hair is growing quicker with Zoladex… so bring on those long locks for summer! Despite eating much healthier and getting my movement up a little more each day, I am still not budging any weight. My consultant had warned me that putting on weight was a likely scenario so I am a little disheartened by this. Since starting the injection treatments (Depo Provera and Zoladex) I have gained nearly a stone and a half in weight and everything I try and do doesn’t seem to stop it happening; although my hunger has also increased, it takes more for me to feel full and I am always getting the munchies without being high! The weight gain is really starting to play with me mentally; I can’t fit into any of the clothes I want to wear and I don’t feel comfortable in my own body. I was doing really well after surgery losing the weight I had gained from a month of no exercise – this was only a couple of pounds, but since the hormone treatments have all started I have never felt this bad in my own body before. 

Although the nurse warned me about the hot flushes and night sweats, I wasn’t warned about the constant itching feeling that comes from having really dry skin. At first I was worried I might even have nits the itching was so bad on my scalp, but after my loving boyfriend carefully examined my head for me, we discovered the skin was very agitated and sore. So now I try and use ‘kind to skin’ products and I’m not playing too much with my hair at the moment. They also don’t tell you about the headaches; I hardly ever used to suffer from headaches apart from when my eyes played up after looking at a computer screen for too long. Now I have to stare out of my office window at least once every 15 minutes to stop my eyes going blurry. But, unfortunately, that doesn’t help with the headaches. They can come on really strong out of nowhere and it can feel like an elephant is sat on my forehead, occasionally kicking me for good measure.

I haven’t read that much about Zoladex, there isn’t much out there that’s related to using it with endo and I was told by my boyfriend and mother that I shouldn’t read everything because I usually turn into a hypochondriac. A lot of the reviews and experiences that I had read were very mixed, some women had been on Zoladex a lot longer than me and had a positive outcome with it and others had really struggled with it.

The main advice I would give about using Zoladex is that everyone is different and everyone’s bodies work differently. I have experienced side effects from Zoladex and the HRT that have made me question being on these types of hormone treatments. I’d love to be able to come off and let my whole body be completely natural but, obviously, knowing my diagnosis, there isn’t going to be a natural body without pain and no doubt the growth of endo. If a consultant thinks it’s worth giving Zoladex a try, remember its a band-aid but it could give you your life back for a little while, and sometimes it’s worth it. 

 

 

Clinical Trial

When I was diagnosed with endometriosis my consultant asked me if I wanted to be apart of a clinical trial. It is looking into which contraceptives help prevent the development of endometriosis and help manage the pain it causes. It was something I agreed to without really thinking about it but I am happy to have entered myself into it. It’s research that will hopefully help future women manage their endometriosis and hopefully live a life with a little less pain and a little more freedom. Plus if they are able to find a treatment that lessens our symptoms and decreases the growth of endo, it may just make us one step closer to a cure (maybe…hopefully…I’ve got everything crossed!!) Currently, they are testing three types of contraceptives the coil, the injection and the pill, hoping to see which one gives the best effects. I was placed on the Depo Provera drug which unfortunately hasn’t worked for me (but more about that soon). My first questionnaire arrived the other day and along with it was a lovely letter, it gave instruction on how to fill out the questionnaire and reminded me of the impact my contribution will have for their research and for other women. This made me feel really good about sharing my experience and made me want to be 100% honest. The questions ask you to rate your pain on a scale of 1-5, they focus on how endometriosis is affecting different aspects of your life and each section is made up of around 10 questions.

One aspect that they focus on is your work life. I have read stories about women who aren’t able to take time off work when their symptoms are really bad and others who work with very unsympathetic management when it comes to asking for long periods of sick leave. Many women suffer from their colleagues and managers not understanding the extremity of their symptoms and not appreciating how hard it can be to complete a simple task. This is a huge problem that we need to address in our community, more people need to be educated on the affects endometriosis can have on individuals within the workplace. Workplaces should be able to understand and sympathise with those suffering from chronic illnesses, instead of making them feel bad or guilty. The questionnaire asked if endometriosis had caused you to take time off work due to pain as well as its effects on your ability to do your job. I am lucky enough to now work in an office environment with understanding managers who treat me lovely even though I’ve already had multiple doctors appointments. I left a job that had me on my feet all day, bending and stretching and running myself ragged. Now I am able to rest when I need to without feeling I am letting my team or self down. Since my diagnosis I have learnt not to feel as pressured to do my ultimate best every day as I used to, I now feel more comfortable saying I need a 5-minute break to allow my body to catch up with my mind or to stop staring at the screen for 10 minutes to ease my headache. I have learnt that I work to live…not live to work.

The next topic that they ask about is your social life. The main focus is on how much endometriosis stops you from doing what you want to do socially. How it affects your ability to go out as normal, how it stops you from socialising with your friends and how these affects make you feel. My social life has suffered over the past year due to endo. I have days where I don’t want to go out or see anyone and I shut myself in for the day. But sometimes I find it best for my body and mind to push through and just go out, even if its something small like a coffee with friends or a short walk. I don’t want endo to control my life to the point that I don’t have a social life but sometimes I have to accept that it does win some days. I make sure I have plans during the week whilst balancing it with time off on the weekends or rest days during the week. I enjoy going to the cinema or out for dinner, (side note – I am really careful with what I eat and how much activity I do when I’m out because I hate being caught short. I always know where the nearest toilet is and my handbag is always stocked with essentials for a sudden flare-up). Most of my friends are really understanding and understand when I cancel last minute due to feeling unwell or having a sudden flare-up. Although it’s really nice that I have a supportive unit around me, endometriosis still effects me mentally, especially regarding my social life. I get anxious because my bowels are so unpredictable and I get nervous because I am worried about what might happen if I suddenly need the toilet. I usually always drive to an event or destination so I have an escape route planned out and am able to leave when I want to. I hardly ever like what I am wearing nowadays as well because of the weight I have put on due to the lovely hormone treatment. I can’t stay up late or drink alcohol anymore so I am struggling with feeling like the most boring person in the world and social group! There will always be a constant battle with wanting to rest all the time and wanting to be a social butterfly and when I find that balance I will be very very happy!

The next part of the questionnaire moves on to your personal relationships and sexual life. The questions mainly focus on the pain aspect of our symptoms. So they ask how endometriosis affects you during and after intercourse, as well as how it makes you feel towards sex. In most relationships sex can play a big part, it helps couples feel connected to each other both emotionally and physically. However, when you suffer from a disease like endometriosis, intimacy causes pain and problems so it makes things a lot more complicated. I usually feel a lot of guilt towards my other half, he is so brilliant with accepting all the problems that I am going through and he is so understanding towards the months that have gone by with no physical intimacy. But even though he is so understanding, I still hate how the hormone treatment has made intimacy more difficult and I wish I could go back to how I used to feel. The questionnaire made me realise how upset it makes me and how I hate that I can’t be spontaneous, that I don’t EVER feel sexy or even comfortable to sleep in my underwear next to the man who wouldn’t care if I put on 5 stone let alone 1.

The next section of the questionnaire went on to ask me about what different medication I have been on and what I use. There are many different painkillers that I have noticed people use and although I used to take prescribed painkillers I now stick to ibuprofen or paracetamol and I try to only take them when the pain is extremely bad. Most days I use heat pads, hot water bottles and rest to ease the pain because I used to take painkillers to often which led them to lose their effect. The Depo Provera injections I was given when I started the trial haven’t has been working for me so my consultant has moved me on to Zoladex, which I will post about in the coming weeks. The trial questionnaire has made me realise that living with chronic pain really isn’t normal when I answered the pain section it made me sad to feel that what I felt on a normal day, the aches, the fatigue, the pain, wasn’t what everyone else felt. Every day I am learning to live with it, I have accepted endometriosis is and always will be part of my life. I have also accepted that how I feel right now may not change especially if I don’t find a treatment that works 100 percent for me. I think its a shame that young girls and women are having to accept pain as an aspect of their daily lives so hopefully one day this trial will find which contraceptive is the best to help prevent growth and symptoms and help ease the pain for those who will come after us. But in the meantime, I hope that I can find natural ways of helping target endometriosis growth, reduce pain symptoms and help give myself, a little bit of me back. 

Baby Talk

Since I hit 25 (and in fact for quite a large chunk of my 24th year on this planet) there has been a lot of baby talk. It’s like I hit the natural peak fertility age and suddenly everyone is expecting me to sprout a child. I’m in a longterm relationship with the man whom I want to be the father of my children but that doesn’t mean it has to happen right now. I am all for people having babies when they want and how they want, with whom they want (as long as they are nice!) BUT please for the love of god stop talking to ME about ME having a baby. Stop asking when it is going to happen, stop making baby jokes or teasing my other half about being scared at the thought of me having a child. I’ve even started getting in on the jokes myself just to keep from getting upset… because here’s the thing you might not realise or know… I may not be able to have them. When you are diagnosed with endometriosis a large cloud slowly moves in above your head. The cloud is known as ‘infertility’ and because of all the hormone treatments, I am on to help with endo, I am unable to find out how fertile I actually am (so please don’t suggest I have strong eggs or some shit like that either).

As my consultant likes to remind me when I start to get emotional in the doctor’s room- many women who have endometriosis fall pregnant without any issues. Of course, I am fully aware of this, I have read my fair share of stories and I am over the moon for any woman who falls without any issues and for those who have to fight a little harder for it as well. But this doesn’t stop me from worrying constantly about the fact I might not get so lucky. When I started to come to this realisation it got me very down for a couple of months, to the point I couldn’t even see a baby without a ball developing in my throat. My other half cottoned on to what was making me so upset and he kept reassuring me that ‘we were young’ and that ‘we’d be alright’. Nevertheless, not a day goes by that I don’t see baby photos on social media or a baby and mother out shopping and feel upset or worried. Instead of finding them utterly adorable and feeling broody for 5 minutes, I feel a flush of emotions come over me that make me want to ball my eyes out. Some days I can’t seem to stop thinking negatively about it, my thoughts circle around ‘what if I never fall pregnant’ to ‘what if my other half decides he wants kids and leaves me’ etc. My mental health has taken a persistent nudging from these dark thoughts and at the moment I feel like a little reassurance would be nice.

The day my consultant told me the mass they had found was on my ovary I remember locking myself in the bathroom and crying for a solid 20 minutes. I was petrified that I would lose it and the thought made me feel like less of a woman somehow. The first thing I asked when I woke up from my surgery, still under a lovely dose of anaesthetic was “did you have to remove it?” Thankfully she had managed to save it in my first surgery but I am now constantly aware that I might not get that lucky next time. Staying positive is insanely difficult when the drug treatments you agree to take to calm your pain, also have harsh side effects that you never really know what havoc they are causing to your insides. It’s a horrible feeling knowing that something might or might not be a problem in years to come and will have a massive impact on your future. I feel like the last thing I have is time, I will forever hate myself if I don’t give myself the longest amount of time to try and have the family I want but at the same time, I am not ready to take that jump. It’s a massive life-changing decision that I am not prepared to make right now even though I am finding it hard to comprehend.

Nevertheless, positivity must strive through. I will continue to smile at babies I see when I am out, I’ll still comment on how cute they are on the tv or social media and I will unconditionally love any little one that comes into my life via family or friends! Because at the end of the day, I know things have a way of working themselves out and if not then me and my other half will have to dedicate our lives to travelling the world till we are both 80 at which point we will have to retire to the South of France, being the really cool aunt and uncle our family hardly ever see because we are on some island somewhere sipping cocktails and dancing the evenings away!! (hmm… that does sound good to be fair!)

Happy New Year

The typical thing to do on New Year’s Day is to make plans about what you’re going to change in the coming year. Like many, I don’t like the idea of having to change myself in the new year for the better, I’d like to think I am pretty okay as I am. However, that being said, there are a few things that I would like to work on next year, some things I want to continue working on and other things I want to make sure happen. I like setting myself goals on a daily basis so the new year gives me the opportunity to set some out that I can at least try and aspire to!

2017 has been a challenging year, it began with a lot of pain and multiple tests which caused a lot of worry and confusion. Like so many other girls I had plenty of trips to the doctors being ignored or given false diagnoses until finally being listened to by a specialist. I spent a trip to New York having hours that were good and hours that were bad (and man did I make good use out of the good hours!) only to come home and slip straight into a surgery bed. After my diagnosis of endometriosis, the weight that had been hanging over me for the first half of the year suddenly lifted. I had an answer for the pain I felt in my lower abdomen, the pain I felt after sex and the pain I felt all through my body. I felt so much relief from having the answers to the questions of why my sciatic nerve hurt so much, why I kept on bleeding and why my whole body felt tired after doing nothing all day. But although I finally found out what was wrong it didn’t stop or help any of these problems. It left me with more questions and a lot more problems to face.

Since then, the rest of 2017 has tested me more than I have ever been tested. With a horrible range of symptoms coming straight back after recovery, I managed to travel halfway around the world with my lovely other half and his family. I learnt how to handle my pain throughout the whole three weeks in New Zealand, I didn’t drink, I ate as simple as I could without starving myself of fun foods and I pushed through when I felt awful. I made a hard decision to leave a job that I loved because it took a lot out of me physically and I took a small part-time office job which I have begun to really enjoy. The pay cut has been difficult but the choice to focus on my studies has been the best decision I could have made. Although my body has kept giving me hurdle after hurdle to jump over I decided it was time to talk about it and towards the end of 2017, I joined the endo community as a blogger and Instagrammer. Something I never thought I’d do but I’m so thankful for!

Next year I want to make sure that I am making the most of my time, I want to focus on myself more. The weight that I have put on needs to be banished off my body!! My self-confidence has taken a mighty hit this year so clean eating and exercise will begin!! My studies need to be more focused on as well, instead of succumbing to the pull of my pyjamas and bed in the afternoon, I need to make my way to the library and really fight the brain fog. I want to spend time with the people that have really been there for me throughout this year and not waste my time on people who haven’t. I want to stop caring so much about what others think and learn that not everyone thinks and feels the way that I do. Spending more time with my family and of course, my other half is also extremely important to next years plans as well as seeing more of this beautiful world! Although I want to keep on top of my blog and social media I also want to make sure I am not glued to my phone.

2017 was the year I learnt to ski and even skied in a blizzard, I skydived 12,000 ft over a beautiful lake and I learnt what the term ‘self-care’ actually means. I may have been diagnosed with endometriosis but I sure as hell won’t let it stop me from building memories, experiencing amazing new things and working on myself each day. Here’s to 2018 ladies, may it be filled with love, laughter and life 💛

Young diagnosis

 A year ago my younger sister who is now 18 years old, began to feel incredibly ill. She was having extremely heavy periods, she was told the same as I was, that they just ‘ran in the family’ and she was given mefenamic acid to deal with the pain. It was exactly what happened to me. But things quickly got worse for her, she started having dizzy spells and feeling faint, my mum would find her sleeping during the day and she’d complain about having incredibly uncomfortable, excruciating pains all through the day and night. It got to the point where my mum was finding it hard to get her out of the house to school, to shower or to even feed her. My sister has never been one to show weakness, even when we were little she was always the boss but during that time I had never seen her so low, it was heartbreaking to watch. Her persistence at the doctors meant she had a ridiculous amount of blood tests done and the word ‘anaemic’ kept being tossed around because of her large amount of blood loss, weight loss and the weakness she was feeling. She was sick a couple of times, she completely lost her appetite and her immune system couldn’t fight off any common cold symptoms. The tests kept coming back with no signs of anaemia and they couldn’t figure out what was going on. During this time I was being put through similar tests and finally, after disclosing my painful sex problems, I was sent to a consultant, given an MRI and multiple tests which lead to exploratory surgery and finally my diagnosis of endometriosis. But as my sister wasn’t sexually active, it hadn’t occurred to us straight away that we may be suffering from the same problem.

After around 6 months of constant doctors appointments, several days missed of sixth form, meetings with teachers, meetings with doctors and both my mother and sisters stress levels being tested. The doctors finally decided to try my sister on the contraceptive pill. Although looking back now, they should have been aware of my history with it and realised that maybe it would potentially make things worse. Which it had for me and which it did for her! After having problems with 1 pill she went on to use another 2 types of the pill and currently has found one that’s not making anything worse…but it’s not necessarily making anything better either, and she is still taking prescribed painkillers. But what I find the most painful of it all, is that as well as all the pressures a normal 17/18-year-old has to go through, such as exams, friendship groups and meeting boys. My younger sister also had to deal with her body letting her down each day, her doctors letting her down every week and her school and friends not understanding what she was going through. Some days she would sleep in and not bother getting out of bed at all. But others she had to push herself out the door to make sure she passed her exams. I am so proud of what my sister achieved in that year, she did brilliantly despite the constant pain and bleeding she was going through.

On trips to my consultant to talk about my surgery and post-op before leaving my mum decided she would bring up my sister and her issues. After two meetings my consultant decided she wanted to meet her and see how she was for herself. Acknowledging my diagnosis and that endometriosis can be hereditary, my consultant believes she is suffering from endometriosis (although no diagnosis is definite without surgery proof). But because of her young age, the doctors are reluctant to push further with more tests or surgery at this point. Though this is a good thing, rushing into any surgery on that biological area of a young girl can have serious consequences, it also highlights the problem that at a very difficult age there are many girls out there living with the issues that endometriosis brings. I remember that dealing with my periods when I was younger was horrible, I learned self-care without realising I was looking after myself and to be honest I did a bad job of it. My sister is luckily managing well right now but she still has very bad days and is in a lot of pain at certain times of the month. But like all of us, she’s learning to listen to her body and understand ways in which it needs her support. 

We definitely need to focus on finding teachable ways of dealing with this disease because at such a young age it can really do some damage. If someone had spoken to me about endometriosis before I was 24 I think I would have definitely pushed harder to find out if I had it. Of course, we want to find a cure but raising awareness is the first step to achieving any funding, government help or charitable help. The incredible Carla Cressy is doing fantastically with her campaign in the UK for spreading awareness within the young community and she has a lot of exciting plans for the new year. Our Australian sisters are also doing amazing work to help push awareness globally for all endometriosis sufferers! These are all small moves in the right direction, but there is always going to be more that needs doing, there will always be more young girls needing guidance and support. I recently had a message from a lovely girl worried about what was going on with herself but she was worried about bothering her doctor about it all. It’s not normal to be in so much pain all the time, heavy bleeding and blood clots are not normal. Back pain, fainting, nausea and sickness during your period are not normal. Bloating out so much that you look 6 months pregnant is not normal! So to any young girls out there reading this, I urge you to be persistent, keep going to that doctor, keep pushing to have things looked into further and don’t settle on a diagnosis if you don’t believe its right. (It wasn’t bloody IBS!! and I knew it!! – refer to one of my previous post on my blog :))

F*** you fatigue.

Of all the many symptoms that endometriosis brings, I am currently battling with one that I haven’t had the pleasure of fighting before. For the past few weeks it’s been taking over my life a little too much for my liking but unfortunately the nature of it demands my attention. Unlike the daily bleeding which I now don’t even think about or the lower back pain which is usually cured by a handful of painkillers and a hot water bottle. Fatigue is really kicking my butt. I’m not brilliant at sitting down for a whole day without wanting to get up and dust the side or hoover the living room, just to keep myself busy. I like to make plans and stick to them and even if I am home all day I like to have jobs to do that keep me on my toes. Even whilst sitting and watching TV I will usually be cross stitching or writing.Basically I enjoy being a busy bee, or at least I used to.

I try my hardest not to let any of my symptoms affect every aspect of my life and I think that’s a good way to live. Any chronic illness is awful but you can’t just pause your live until it gets better because they don’t work that way. However chronic illnesses teach us to really self-care, to put everything down and just let your body and mind catch up with everything. Some people think that working part-time means that I don’t have anything to complain about, but when you find it difficult to get out of bed in the morning or get to work on time, it really isn’t a lie when I say that part-time is all I can handle right now. Sometimes I can be hard on myself, getting annoyed that I’m not finding everything as easy as I used to and feeling like I’m constantly chasing my tail with my university work or the house cleaning can really get me down. But as fatigue can hit you from out of nowhere and usually when you are in the middle of something, it’s pretty hard to live your life around it. Not only does it stop you from doing things you want but it plays havoc with your body. My eyes are the biggest give away that I have had enough, they become very heavy, sore and really red. I also lose the ability to concentrate properly which is super helpful for a student! My whole body aches and tingles, even the sides of my torso can hurt and when I do finally stop and rest, I feel so heavy that I can hardly move. My poor boyfriend is having to lift me up off the sofa most evenings. 

With the festive period in full swing I am finding it really hard to say no to making plans. I want to be out and about, seeing people I don’t see often or helping others with bits and pieces. Plus saying no is so extremely difficult and guilt-ridden that I hardly do it. Fast forward to when the time comes to then going out I am panicked and worried that I won’t be ‘fun’ or ‘happy’ enough for other people to enjoy themselves. I am worried I will ruin their day as much as mine. When I get home I feel like I’ve been on an expedition up a bloody mountain, not a couple of hours walking around the shopping centre or having a meal with friends. This will be my first Christmas period where I haven’t worked retail so THANK GOD I am not going to be tending to the public whilst trying to drag my body behind me.Chronic fatigue or not, people are the most demanding at Christmas (to any endo sister working retail this Christmas my thoughts are with you!). Although this will be a lovely change for me it also means that I want to make the most of my time off. I have already booked a trip to a PolishChristmas market (which I go on tomorrow) for one night, I have multiple road trips happening next week and I have already booked to catch up with friends. Making these plans is brilliant and I’m honestly so excited for them, but there is a sense of dread that comes with them. I worry that I will have to cancel or that I will feel so awful I won’t manage to do it all. My body is really fighting with itself at the moment from the minute I wake up to the moment I flop onto the bed. 

One of the worst parts of fatigue has to be the sheer irony of it. When you finally get in to bed, sleep eludes you. It doesn’t matter how tired your mind is, how tired every inch of your body is, falling asleep is so difficult. I lay awake staring at the ceiling willing myself to fall asleep but even though my eyes are sore and dropping it still takes about an hour for me to nod off. Even then I will wake up two or three times in the night, usually in a hot sweat or freezing cold and shaking from a horrible dream I was having. In fact, this may or may not be related but I have also been having very vivid dreams recently. I’ve never been one to remember my dreams very well but theseseem to be more vibrant and vivid with strange things happening! (Probably shouldn’t have binged Stranger Things!)

Right now it’s full steam ahead, I want to keep going, I want to enjoy this last month of 2017. I don’t want my friends and family to see a puffy eyed, slow moving, worn out me every day of December. This year I’ve felt so run down and poorly that I don’t want to end that way! So I will make sure that I keep a day free each week or an hour a day to rest, to gather my body in for a hug and look after it properly. I’m focusing on finding ways to battle this, to help try and strike the balance to give me a social life whilstalso allowing my body to live that social life comfortably. Although secretly I am always hoping that it is just a phase of my symptoms and that this fatigue feeling isn’t a permanentresident in my body.

To all the ladies fighting fatigue, I wish you a days rest and a good night out all at once!