My Endo Diary

Endometriosis comes with so many struggles and obstacles that you have to fight to overcome. It can sometimes feel like a burden, stopping you from doing small things such as completing daily task. On the larger scale, it can stop you from achieving your dreams. It can become overwhelming and take over your life. Some days it feels like there'll be no relief from the pain. For that reason, a few weeks ago I mustered up some courage (or some may see it as a moment of madness!) and I went for an endo tattoo! I wanted something feminine that also represented the strength and courage needed to endure this chronic illness. Here is the result: Now I'm not going to lie.... IT HURT! A LOT! But all I could remind myself was that if I can get through endo pain, I could certainly get through a tattoo. I am so happy with the result. Now during times of struggle, I can look down at my tattoo and remind myself of my strength. During happier times it will be a reminder of what I have ...

Preparing for a bad day with endometriosis and expecting the unexpected is becoming a chore. I want to feel normal. I want to go a whole day without taking any painkillers. I want to get through a day without my hot water bottle or electric heat pad. I want to be able to say yes to plans, months, weeks or even just days ahead. I want to be able to go out and not come home early because the pain has crept out of nowhere or it has become to hard to manage. I want to be able to stand for long periods of time without getting crippling back and leg pain. I want to have a normal stomach, not one that swells and makes me look 5 months pregnant. I want to know what it feels like to go a day without a stabbing pain that comes out of the blue and leaves you curled over, holding onto something to steady yourself. I want to have a period that doesn't leave me bed bound for a week. I want to carry out the simplest of tasks like getting out of bed or going in the shower, without feeling...

How do you go from feeling like for the first time (in a long time) you're actually living your life and having a great day with friends, dancing, singing, drinking and generally having fun... to less than a week later, being curled up in bed crying with the pain, praying the stronger meds will kick in? At one moment you get hope, clarity and life, with a big sense of normality. The next you're faced with pain, upset and darkness, with no sense of it ever being normal again. Why does life with endometriosis have to go from one extreme to the other. The lows are definitely more prominent than the highs at the moment. Or maybe that could be because I give the rare high days so much attention, that as soon as they're snatched away, it makes me feel more lost than usual and back at square one. How do you mentally find a balance when there is no way of controlling what endo will do next? #MyEndoDiary

The word chronic is used to describe an illness that lasts a long time or one which constantly reoccurs. When referring to chronic pain, it means pain that has lasted more than three to six months. A serious condition which lasts less than this time scale is usually referred to as acute pain. The most common types of chronic pain include headaches, backaches and pain from an injury. Other sources stem from the shoulders, neck, pelvis, muscle or nerve pain.  Chronic pain can vary in severity, it can fluctuate from mild to severe, be sporadic or continuous. It can be described as shooting, aching or burning feelings. You can get discomfort, stiffness or soreness. Unfortunately, pain doesn't come alone. People with chronic pain also report changes in their moods, fatigue, insomnia and the need to rest a lot more. There are different types of chronic pain which depending on location or illness, are put into different categories. Endometriosis falls into what's known as nocicep...

Today is exactly one year to the day that I was diagnosed with depression. August 11th last year I had my first panic attack after being extremely depressed for a few months. August 12th last year I had to finally admit that I couldn't control it. I couldn't hide it and certainly couldn't cope with it anymore. I was taken to the doctors by my mother and put on antidepressants. I wrote a post last year on my diagnosis which I found quite hard to write. (Click here  to view.) This second one is not proving to be any easier for me. I can write about my endometriosis symptoms quite easily, all the ins and outs of it, I find it as a second nature to be as open as I possibly can. So why when it comes to my mental health do I feel myself clam up and struggle? The honest truth of the situation is I don't think I portrayed the full extent of my depression last year. Even close friends and family wouldn't know the full extent of it. Thinking back on the thoughts I was havin...

At my Gynaecology appointment last week I was referred to Pain Management. I was more than surprised to be contacted the next day to be told they could fit me in a day later. I was somewhat apprehensive on what would be suggested... if anything! I am so used to explaining to doctors about endometriosis and my symptoms to just be met with a blank look across their faces. If I am being completely honest, I thought it would be a waste of time, but worth going as I've tried everything else that's been thrown at me. I'm happy to report that I was completely wrong with my prejudgment. I met an endometriosis specialist nurse at the University of Wales Hospital who went through every single one of my pains and symptoms. A history of my pain was noted as well as current pains, including what types of pain I get during cycles, pains during the rest of the month, energy levels and sleep. Thorough is an understatement. We also talked through my current pain medications (Tramadol, O...

Do you ever feel like you're going round and round in circles? You think you have jumped through every hoop and crossed every hurdle that endometriosis can throw at you... then all of a sudden you end up back at square one? That's kind of how I feel right now.  It was confirmed to me yesterday that I definitely need another operation. In the back of my mind I knew it was coming, but having it said out loud by my doctor makes it somewhat more real. Definite. Thinking that my endo may have got worse is no longer a passing thought that I can put to the back of my mind. The pain I've been having is real. And I'm on the list for a third laparoscopy, my first only being in 2011. The doctors think that more cysts may have developed on my ovaries and are concerned that endo may have spread to my bowels again. They are currently checking my notes from my previous operation to see where on the bowel it was found. From this, they will decide if I need a longer time in surgery....

For most people housework is just a tedious chore that they would rather not be doing. For people with endometriosis it is exactly that but with a huge dollop of pain on top! A simple task like washing the dishes this evening has left me with so much aches and pain. By half way through, the pain in my back from standing was radiating upwards. Making me want to just lean over the sink and hold on. Hoovering is the same. When I finish I am exhausted. I've gone a bit unsteady on my feet a few times towards the end and my mother has to make me sit down. I look forward to the day when cleaning will not be painful, just tedious! With endometriosis you learn not to take anything for granted! #MyEndoDiary

These days, you hear so many people saying they've been on a journey. Or an emotional roller coaster. The term somewhat loses its meaning. Yet when it comes endometriosis, there really is no other explanation. From one day to the next, you don't know what's around the corner. Last week I was at such a low point. I felt that all my strength had gone. I felt weak and extremely down. I even blogged about losing my faith.  It is important to remember that tough times never last... but tough people do! A few days later, I am feeling re-energised. I'm not jumping for joy or bouncing off the walls. But I'm content. And that's a massive difference to how I felt last week.  When these bad days pop up, they can really hit you hard. As much as you try to look for a way through the pain and darkness, it doesn't always present itself. I'm ok today but don't know what tomorrow will bring for me. I wanted to post this update so that anyone who is in a similar s...

How do you keep faith and hold onto hope when you're in so much pain? Where do you find the strength to pick yourself back up and keep going? How do you fight through the next waves of pains? I keep asking myself these questions. Repeating them over and over again. Whispering them so quietly it's hardly a murmur. Shouting them loudly when anger takes over. It doesn't seem to matter which way, I still cant find the answers. This physical and emotional roller coaster has had too many twists and turns for me. Can I just get off? I'd much rather a go on the merry go round, the swings or anything else but this. I sometimes feel like the help I am looking for is completely out of my reach. Faith is believing things will get better, even when you may not be able to see it. In times of darkness, deep down, you just know better things will come. Faith eludes me at the moment. However, my hope remains. One tiny sliver of hope. A wish. I hope and wish on every bad day that I...

These last few weeks I have been speaking to some inspirational women with endometriosis, who just don't stop. Whether it's working, studying, housework, raising awareness, looking after family members or all of the above! These brave ladies are struggling daily with endo pain, very little sleep and relying on medications to get them through the day (and I assume endless cups of coffee!!) But they still put everyone and everything else before themselves. They are selfless, brave and generous beyond belief.  It makes me wonder how it is possible for a woman in so much pain to achieve so much?! Reading this you may think you haven't done much today, or this week, or this month. But take a step back, have a look at the challenges  you face everyday... and realise you've got through them all! You will wake up tomorrow and succeed once again.  So my challenge for you brave ladies this week, is to take some 'you time'. When was the last time you took some...

Today in the UK is Mother's Day. For that reason, I dedicate this post to my beautiful mother - who supports me every single day through my endometriosis journey. Letter To My Mother Dear Mam, Where do I start? People say the best place would be the beginning, but I'm going to jump to right now. Without you, I wouldn't even be at this point. I want you to know how much I appreciate what you do for me daily. I bet you never thought you'd still be making me hot water bottles and checking on me at night. You go above and beyond the duties of a mother. Your selfless ways and generous heart constantly amazes me. Even on days when you may not feel 100%, you will still put everything aside if you notice I'm struggling. From making me endless cups of tea's, reminding me to take painkillers, ordering me to rest and to even helping me dress and put socks on when I'm having a bad day! Endometriosis was a word neither of us had heard of until my diagnosis. Bu...

Thursday 13th March, 2014. This was the day when women all over the world came together, for the first time, to raise much needed awareness for Endometriosis. I am so pleased to have been a part of it. My day started very early! At 5:30 am, my wonderful mother and I left Cardiff to travel to London. I had arranged to meet some endosisters from Twitter in Starbucks beforehand, then walk to the event together. When I arrived, I was the first one there. I was so excited but so nervous at the same time! I had been talking to these women for months, sharing ins and outs, and today was the day we would meet. It was like pre-date nerves! Soon, everyone started turning up and I couldn't have been put more at ease. The ladies were lovely. Straight away we fell into chatting about endo, our symptoms and most of all, how thankful we were for Twitter giving us a platform to be completely open and honest with others who understand. I felt normal! My stomach was extremely swollen, which I was so...

Daily Challenge 3: Getting Out Of Bed To people who do not suffer with a chronic illness, this may just seem like a 'lazy' excuse. However, getting out of bed on a daily basis can prove to be a challenge. These last few weeks I have seemed to be struggling more. It does not matter if I have had a full nights sleep (unlikely as that is), or have been awake most of the night (more thank likely), I will wake up with no energy and aching all over. Last week I had an appointment at 10:30 am. My alarm was set, my alarm went off.. I couldn't move. I had to make the decision of getting out of bed to have breakfast or stay in bed for an extra twenty minutes. You can guess which one I chose! BED! Just to reiterate, it's not the normal person feeling like "ohh just five more minutes, I can't be bothered to get up yet"... It's literally the fact that I CAN'T get up. It can be too painful, too exhausting, or just take up too much of my energy that I need to s...

We are one week into Endometriosis Awareness Month and I am greatly surprised with the amount of coverage its had so far. I would go as far as to say it is the most publicity I have seen since my diagnosis. Endometriosis UK has done an amazing job with getting endo into the media. Firstly, a TV interview took place on Monday on 'This Morning' with Endometriosis UK Young Ambassador, Alice Smith. The resident Doctor on this show talked a bit more about it, stating that endometriosis is 'horrendous pain' and compared it to 'the same pain you get in the final stages of childbirth' . Dr Chris also went further by clarifying that it is not 'just a bad period' and that it causes 'widespread pain' which is not just restricted to your stomach. The next day on the TV programme 'Lorraine', Endometriosis UK Trustee Carol Pearson joined Lorraine to talk about the effect Endometriosis had on her life. It gave particular focus on the loss of her care...

When you suffer with endometriosis, you will begin to realise that this chronic illness follows no rules or boundaries. Pains can be unexpected and your symptoms can change frequently. Pains can get worse at certain times of the month or be more persistent. Therefore, it is useful to maintain a pain diary. Recording your symptoms will help you and your doctor to identify if there are any patterns or triggers. It will also give you some insight into how you are impacted by endometriosis on a daily basis. Here are FIVE things to record in a  pain diary that will benefit your pain diagnosis and management. Pain Location  - Where are you getting pain? If in your stomach, then what side? Are you having pains near your ovaries or around your belly button? What about in your lower back or legs? All details can help to pinpoint pain and work out the causes. Pain Types  - Are you having sharp, shooting pains? Or is it more of a dull ache? A burning sensatio...

When you are first diagnosed with Endometriosis, you may find yourself confused with all the different terminology... Pouch of Douglas, GnRH, HRT, Endometrioma, Menorrhagia and Zoladex to name but a few! Unfortunately, you do not get handed a fact sheet of FAQ's  or information on what you can expect before, during or after your diagnosis. So, to provide some clarity, I have compiled a glossary of 'need to know' terms and phrases, that you may find helpful when learning about this chronic illness. Adhesion:  This is a band of scar tissue that can join your internal organs together. Think of it like a sticky glue, bonding organs to other organs or to your pelvic wall. This can cause a lot of pelvic pain. Anaesthetic:  This is used during surgery to either put a patient to sleep/make them unconscious (general anaesthetic) or to numb a certain part of the body (local anaesthetic). Biopsy:  During surgery for Endometriosis, a biopsy may be taken. This ...

I am really struggling. Endometriosis seems to be taking a hold over my life and I seem to be giving it much more control than I would like. But I'm struggling to do anything different. I'm totally fed up of fighting the pain, taking medication and more than anything, I'm fed up of waiting for better days. For nearly three weeks straight, I've had continuous heavy bleeding with clots. I'm used to this and have experienced it before, but never to the level and heaviness it has been recently. It has really worried me and I've felt quite scared at times. I went to my doctors who prescribed Mefenamic Acid and Tranexamic Acid to help reduce the flow and pain. Along with more Tramadol. My doctor explained that when we have clots with our bleeding, our cervix goes into contractions in order to pass the clots. Which in turn, causes us even more pain. I felt quite optimistic leaving the appointment, especially after talking to a GP that actually had knowledge on En...

Daily Challenge 2: Shower/Bath A daily challenge when I have pain from Endometriosis burning up inside of me, is managing to get in and out of the shower/bath. Does anyone else need to sit down and have a rest once they come out of the shower?! Please say it's not just me! It can be exhausting! What some people take for granted can cause me so much pain! The energy it can take to carry out this simple task when you have Endo is unbelievable. The challenges I face can include: Firstly, finding the energy/strength to go in! Standing up in the shower, trying to wash your hair when you're in pain is no easy task! If having a bath, (yes I know I get to lie down in between) but the energy it takes me to get in and don't mention getting back out of the bath is unreal. A few times I've panicked thinking I'm going to be stuck in there Either from pain and I've found myself not being able to move, or literally zero energy!  Let me assure you, it wouldn't be...

Having Endometriosis can impact all area's of your life. I find it presents me with daily challenges. So, I'm going to share with you some of these challenges in the *hope* that I'm not alone! Hopefully it may also help those without a chronic illness to understand how such simple daily tasks can zap ALL of our energy or cause so much pain! Daily Challenge 1: The Stairs Having a bad day with Endometriosis and climbing the stairs. Mine don't seem to mix.. The staircase in my house only has 13 little steps. 13 footsteps to get from A to B. From downstairs to upstairs. Some people can run up them. Others can take them two steps at a time. For me, every step is a challenge... You know you have Endometriosis when you just about make it to the top of the stairs, (having to stop two or three times during the process!!) to crawl to your bedroom and collapse on your bed. Then, needing to take two Tramadols whilst stuck lying on the bed waiting for the enormous surge of ...

Thursday 13th March.  The day of the Endomarch 2014.  Put it in your diary, it's a date to remember! This is the date when Endometriosis Awareness will be shouted from the rooftops. It will take place in many country capitals, including; Athens Berlin Dubai Johannesburg London Mexico City Rome Stockholm Washington D.C ......... AND MANY, MANY MORE!  This is an internationally coordinated campaign where Endometriosis sufferers, their friends, families and doctors, will all come together to raise awareness. Hopefully the impact of this will make people stop and listen. People will hear our pleas for more awareness and our hear voices when we explain our struggles. Sound's great right? I will hopefully be attending the Endomarch in London. Around 176 million women worldwide suffer from Endometriosis. A chronic illness that to many people is invisible. But to those who suffer from it, it can turn their lives upside down. Much more awarenes...

"People like us, we've gotta stick together..."  Endometriosis binds us all together. So who better to talk to when we feel like we're sinking into a world full of pain and despair? The answer... Endosisters! There is nothing better than talking to someone who knows exactly how you are feeling, understands what type of pains you are having, or has experienced the next treatment you have to 'try'. Having people who understand that daily life with Endo, can sometimes, get a little too much, is a massive benefit. Endosisters know that you may be overcome with emotions one day and struggling to get through the pain, but ready to fight the world the next day! But they will always be there. Good times and bad. Helping each other through. That's why we stick together. The words to this song I think are so fitting & gave me a massive boost when I first heard it! Lyrics "We come into this world unknown But know that we are not alone The...

Here you will find the 'Top 10' posts from my blog during 2013.  I hope you enjoy these posts and more than anything else, I hope you will be able to relate to them! Thanks for reading my blog! MY TOP 10 POSTS OF 2013 The Day In A Life Of An Endo Girl 16/04/13  http:// bit.ly/18vldq2 The Endometriosis Effect  http:// bit.ly/19TN3dL The Emotional Causes Of Endometriosis: My View  http:// bit.ly/179xNvr Endometriosis: My Letter To You  http:// bit.ly/17jccQN Endo Doesn't Come Alone  http:// bit.ly/1aws9kT Endometriosis: A Letter To My Younger Self  http:// bit.ly/14XRJzW Endometriosis & The Spoon Theory  bit.ly/169OTst Endometriosis: My Depression Diagnosis  bit.ly/14CFR6n The Definition Of Endosisters  http:// bit.ly/1by4wYW Endometriosis: Don't Judge Us!  bit.ly/1bdpMIY #MyEndoDiary

My endometriosis battle continues. The part that I seem to be most at war with is the 'swollen stomach'. It was June 2011 when I first posted about the swelling, ( click here  to view) so right now, I feel defeated. When it swells, it literally blows up and at that moment there is nothing I can do about it. People would actually think I'm pregnant. I used to have my 'favourite black cardigan' that I'd wear as a comfort to hide the swelling. Even that won't hide it these days. It's so depressing. It's embarrassing. Along with the ballooning size, also comes pain and the feeling of being so uncomfortable to the point where even breathing hurts. You can't sit, stand or lay down without feeling awkward.  Everything is a struggle. Here's a picture of my stomach when it started to swell...and this is not the worst it gets. It gets bigger. Much bigger. Much to my disappointment and resistance. But I have no control over it and that's what ...