Friday, 3 October 2014

My Endometriosis Tattoo

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 overcome. 

#MyEndoDiary

Saturday, 13 September 2014

Endometriosis: What I Want

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 that it's a massive struggle. I want to be able to do things today and still be able to do things tomorrow! Not end up in too much pain because today I went for a walk or cleaned the house. I want to be free of consequences. I want to know that I will definitely be able to have children in the future. When asked how I am feeling, I want to respond that I'm fine and actually mean it. I want to accomplish so much in my life without endo stopping me or changing my path for me without my consent.

Some people may read all my 'wants' and think I'm being selfish or needy. But to someone who suffers from endometriosis or chronic pain they will see it as me asking for one thing only... a cure for endo. Every single thing I listed is what a 'normal healthy' person would take for granted. I'm not asking for the world...

I just want to feel normal.
#MyEndoDiary

Thursday, 11 September 2014

Endometriosis: Highs & Lows

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

Wednesday, 27 August 2014

Endometriosis: What is Chronic Pain?

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 nociceptive pain. This is pain that is detected by soft tissue, muscles or organs. Visceral pain branches off from this which detects pain specifically from your internal organs by your sensory nerves.

There are so many different types of chronic pain that people suffer from, which makes it hard to diagnose or treat. There is not just one type of treatment, it will all depend on the pains and causes. You may have some tests or scans before diagnosis to rule out other conditions. Chronic pain can be treated medically or through physical therapy. When it comes to endometriosis, medications and surgery and usually the way forward.

Speak to your doctor or consultant in order to work out the best plan available to you.


#MyEndoDiary

Tuesday, 12 August 2014

Endometriosis: My Battle With Depression

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 having terrify me, yet now I can't fathom how I could have thought such awful things. It got to a point where I noticed a packet of my sleeping tablets under my bedside table and I started thinking how many would I need to take to just sleep and not wake up. I had this thought on more than one occasion. I felt that I had no purpose in my life. I was no use to anyone and especially no use to myself so what was the point of me being here? I felt my life had already been taken away from me by endometriosis. It took away my health, made me lose my job and stole my social life. I was just existing day to day, waiting for the hours to pass so I could go back to bed. I never felt like I would act on my thoughts but I just wanted to stop the pain... physically and mentally. I was breathing but not living.

I still get days now where I don't feel myself. I get bad days when I can't cope with even the smallest of things. But compared to where I was this time last year, I am so different. I am still out of work and in pain from endo. However, my mindset has changed. I have faith and hope that things will improve. I realise I have a purpose being here by being a daughter, a sister, a best friend and an endosister. Just by being me.

Due to depression being highlighted in the media today I wanted to post this to remind anyone reading this that you are not alone. Please go and talk to someone if you are feeling depressed. See a doctor, tell a family member, a friend, even me! I won't be able to fix you or wave a magic wand but I can listen. It is nothing to be ashamed of. It is not something you can just 'snap out of' or try to 'pull yourself together'. It is a medical condition and you deserve the best help possible. Don't be too hard on yourself. Things will get better. You may not believe in yourself right now, but trust me there are plenty of people who do - even if you can't see it.


#MyEndoDiary

Monday, 11 August 2014

Endometriosis: Pain Management Appointment

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, Oramorph, Paracetamol, Marvelon, Mefenamic Acid and Tranexamic Acid) and how much relief they provided.

Once the nurse had collected all the information (which she needed extra sheets of paper for!) some recommendations were made to try and help alleviate my pain or make it more manageable.

  1. Stop Mefenamic Acid. I have Asthma and this medication can make it worse.
  2. When I take Tranexamic Acid, I can take it four times a day (currently told three) and I need to take it between days 1 - 4 of my period. If not done this way, the medication will not work to its full effect.
  3. Buscopan has been prescribed to try and help with pain, spasms and cramps, especially when going to the toilet.
  4. It has been recommended that I should be taken off Tramadol and put onto MST which is a morphine slow release tablet. MST should provide a long lasting relief throughout the day. It will need to be taken twice a day, every day. The reasoning behind this swap is that I have been on Tramadol over two years and the relief I get from it is very hit and miss.
  5. To have Oramorph prescribed on a regular basis so that I can take it for any breakthrough pain whilst taking MST. 
  6. I have been told to purchase a TENS machine to help with managing pains. It can help to block the pain nerves.
The nurse will now send all details to my own G.P to tell him the changes that are required. Normally I have to fight for any help from my G.P's so this will make a nice change for them to process it without any arguments (hopefully!) 

I hope some of you may find this information helpful.

I will do further research into MST and the benefits of a TENS Machine.


#MyEndoDiary

Tuesday, 5 August 2014

Endometriosis: Back At Square One?

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. The waiting list for this operation will definitely be over 6 months, so I feel in limbo at the moment. 

Of course I am happy that I have such a great gynaecology team, my specialist and his staff are so lovely and I spent a whole hour talking to them at my appointment. The doctor listened to everything I had to say and was extremely knowledgeable. I know I am finally getting the help I need and I am extremely grateful for that. I just have a lot of mixed emotions at the situation, being back in this position for a third time is not something I wanted. But then again, endometriosis never gives us what we want. It never plays by the rules. That's just something that I have to come to terms with...again.


#MyEndoDiary

Monday, 9 June 2014

Endometriosis: My Daily Challenges - Housework

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

Saturday, 24 May 2014

Endometriosis: An Emotional Roller Coaster

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 situation can look forward to better days. They will come. I promise. A roller coaster has highs and lows and lots of loops. But it always comes to an end. If things are not ok for you at the moment. It's not the end. Hang in there.


#MyEndoDiary

Wednesday, 21 May 2014

Endometriosis - Lacking Faith

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'll find some faith. Faith which will give me the courage and wisdom that I'm so desperately needing. I'm constantly hoping to find relief from pain. Always hoping for better days.

Never take away someone's hope. It may be all they have.

#MyEndoDiary

Monday, 14 April 2014

13 Ways To Rest, Relax and Regain Energy

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 time out for yourself? You more than deserve it! Here are some idea's that you can try and fit into your day. Rest, recover, regain some energy. Five minutes, half an hour or an hour. Just make some 'you time'.. Even superheroes need a break sometimes...

  • Curl up with a good book.
  • Do some writing.
  • Listen to music -turn the volume up!
  • Take a nap! & don't feel guilty!
  • Take a long hot soak in the bath.
  • Buy your favourite cake or desert - eat it all yourself! Go on, be a rebel!
  • Do a craft - finish that project you've been wanting to.
  • Take a walk - Having some alone time, being with your own thoughts and people watching can be therapeutic and relaxing.
  • Catch up on your favourite TV programme.
  • Meditate - breath, relax, chill!
  • Go shopping. Browse your favourite stores, treat yourself! 
  • Get a manicure! A good varnished set of nails will always make you feel good! 
  • Go for a coffee with a friend. Can't get out? Invite them around. A good catch up with your bestie, a gossip and a laugh will do you the world of good!
#MyEndoDiary

Sunday, 30 March 2014

Endometriosis - Letter To My Mother

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. But now you're practically an expert in the field and can give any Doctor a run for their money! (Which you have, on more than one occasion, much to my embarrassment.) Without fail, you are at every Doctor's appointment, specialist consultations, scans and operations. Making sure I'm listened to. Giving me a voice when I'm scared.

Some days, endo really does scare me. The pain frightens me. The feeling that I'm losing control over my whole life. But you are always there, with your reassuring, thoughtful and tender words. Sometimes when words are not enough, your hugs or kisses on my forehead are more than enough. I know deep down that you worry about me. However, you never let it show. You are there for me every hour of the day, every day of the week.

These last five years have been some of the hardest times of my life. I've experienced my lowest points but you never let me crumble. I know for a fact without your constant support, understanding and encouragement, I would not be where I am today. Even though I'll be 27 this year, you still nurture me, protect me, look after me and support me. Just like you did when I was little. You are not only my mother, but you truly are my best friend. You are my biggest support.

Some people say there are angels on earth, looking after us everyday.
Without a shadow of a doubt you are my angel and my inspiration.

I love you with all of my heart xxx
#MyEndoDiary

Thursday, 20 March 2014

The Endomarch 2014

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 conscious about. I had planned to try and cover it, hold my bag in front of it, keep my jacket on etc... But do you know what - being with these ladies made me realise they all experience this - and I wasn't alone. I didn't have to hide or pretend for a change and that was lovely. 

When we arrived at Kensington Gardens, a crowd had already started to gather. We all set off on our march with sashes, badges, yellow headbands, banners and posters. Mothers, fathers, grandparents, sisters and partners all there for support. The sun had come out too, everything was just perfect. Trevor Dahl, the Chairman of Endometriosis UK, gave such a heart warming and motivational speech. A lovely group of school children were nearby and cheered louder than us! I think they were in a competition with us all, which was so funny, but it definitely got attention! I was pleased to have a chat with Trevor afterwards and can honestly say what a lovely, genuine and caring man he is. We are so lucky in the UK to have him involved with our Endometriosis charity. In front of the Albert Memorial, we all posed for our group photo and set off to finish the march. 


Being able to talk face to face with other endosisters was priceless. Although a few of us had to confirm each other by our twitter names, which was hilarious! We should have all had our Twitter names on some badges to make it easier! It was brilliant to be surrounded by people who wanted to help raise awareness and who actually understood our daily struggles. We certainly created a buzz, an atmosphere and a visual impact in Kensington Gardens. Many members of the public approached the crowd throughout the day to ask what was going on. We got people talking and that's a start! The Million Women March event wanted to empower, educate and effect change. I for one certainly felt empowered and united. I just hope that our voices will now be heard! Here's to 2015 :) 
#MyEndoDiary

Endometriosis: My Daily Challenges - Bed

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 save for the day. Some days, my spoons can run out before I've even made it downstairs! Please bear in mind that having endometriosis does not make a person lazy. What you can do without even thinking about, on a bad day we have to plan our every move. 




<< Click here for previous challenge <<
#MyEndoDiary

Saturday, 8 March 2014

Endometriosis Awareness Month 2014

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 career through living with this chronic illness, which I can relate to. The fact it got so much recognition on two very popular morning TV shows amazes me! To add to this, the talk of endometriosis on social media platforms has gone up a gear. Facebook, Twitter and Instagram have all been flooded with posters, conversations, articles, tweets and hash-tags about the topic.

I am so proud that other women are talking about endometriosis, not just between themselves, but also publicly. There is no reason to shy away from discussing symptoms. There should be no stigma around talking about periods. This is the only way we will get more awareness and recognition. 

This week, I have been sending messages, linking to articles and posting pictures I have made for endo awareness on Twitter and Facebook. I will continue to do this throughout this month (and beyond). At the end of March I will combine all pictures here.

What are YOU doing for Endometriosis Awareness Month? How are YOU making people sit up and listen? Just because this illness is invisible to others, it does not mean it should be ignored!
#MyEndoDiary

Friday, 7 February 2014

5 Things To Record In A Pain Diary


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.

  1. 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.
  2. Pain Types - Are you having sharp, shooting pains? Or is it more of a dull ache? A burning sensation? Twisting or pulling? These descriptive words will help you to notice patterns or changes.
  3. Pain Intensity - Some people find it helpful to record their pain scale rating. Usually on a chart from 0 - 10. Zero meaning no pain at all and ten being the worst pain imaginable.
  4. Medications - Along with the pain intensity, recording the medications you have taken can be useful. What have you taken? What dosage and when? Not only will it help by providing a visual reminder, but if the medications are not providing any relief, you may need to consult your doctor.
  5. Triggers - Have you noticed that your pain flares up whilst doing certain activities? Does standing for a substantial length of time worsen it? Do you get pain during intercourse? Any pain from bowel movements? Or do you notice your pain more at certain times of the day? Do your pains increase in the morning, night, or afternoon?
You can keep a pain diary in any format that suits you. I use a personal journal and write down my information before I go to bed each night. You could use a free printable pain diary available from NPS Medicinewise or record your results online. There are also some useful phone apps available to update your pain diary wherever you are, including one named Catch My Pain which is available for IPhone and Android.

If you think of other important factors to include in a pain diary, or useful applications/websites you use to do this - please leave them in the comment box below!

#MyEndoDiary

Tuesday, 4 February 2014

Endometriosis Glossary

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 is when a sample of tissue is taken for further examination in a laboratory.

Bone Density: As a side effect of certain hormone treatments for Endometriosis (such as Prostap), the strength of your bones can be reduced. This cause cause pain, weakness and bones may become brittle.

Cauterisation: This is the removal of Endometriosis via a laser during surgery.

Chocolate Cyst (Endometrioma): If you have cysts in your ovaries, filled with old blood (dark brown in colour), it is known as an endometrioma - more frequently as chocolate cysts. This is due to their dark colours and liquid chocolate consistency.

Chronic: Endometriosis is a chronic illness. This means a condition is persistent and can last a significant period of time.

Cul-de-sac (Pouch of Douglas): This is the area between your womb and your rectum. Endometriosis can be found here.

Cystoscopy: This is the procedure used so that the bladder can be examined using a small telescope.

Dysmenorrhea: This is the medical term for painful periods.

Dyspareunia: This is the medical term for painful sex.

Endometrial Ablation: This procedure involves the womb lining being removed. It can be done using heat or being frozen, using lasers or electric currents. This will prevent a woman from becoming pregnant.

Endosister: A term used to describe other women who also suffer from Endometriosis (view here).

GnRH Analogue: Gonadotropin Releasing Hormone Analogues (Agonists) are drugs that will put a woman into a temporary menopause. This is reversible. They work by stopping the ovaries stimulation and production of eggs. These can include drugs such as Prostap, Zoladex and Lupron.

Hormone Replacement Therapy (HRT): This is a medication used during the menopause or the medically induced menopause. It helps to reduce the side effects that come with it. These include hot flushes, night sweats, mood swings, vaginal dryness and loss of bone density.

Hysterectomy: This is when the womb is removed during surgery. The extent of what is removed can vary. A total hysterectomy would include the removal of the womb and cervix. A sub-total hysterectomy would be removing just the body of the womb. A third option is a total hysterectomy with the removal of the ovaries and fallopian tubes also.

Incision: These are the cuts made into the body during surgery.

Laparoscopy: Surgery for Endometriosis is done via laparoscopy whilst under general anaesthetic. It involves a small telescope being inserted into your pelvis, normally through your navel. The telescope (also known as laparoscope) will have a camera attached to show the images on a screen for the surgeon to examine. If endometriosis is found, another incision is made to enable its removal.

Menopause: This is when a woman's periods stop due to her ovaries no longer functioning. Menopause can happen naturally or be medically induced with drugs.

Menorrhagia: This is the medical term for heavy periods.

Oestrogen: This is the female sex hormone that is produced in the ovaries. This controls the growth of the womb lining.

Ovarian Cyst: It can be found in or on the ovary. When it is related to endometriosis, it's known as an endometrioma (chocolate cyst).

Progesterone: This hormone enables the endometrium (womb lining) to allow pregnancy by receiving the fertilized egg.

Progestogens/Progestins: These are artifically created hormones that mimic the effects of progesterone. Also used in contraceptives. They can help to reduce endometrial tissue.

Transvaginal Scan: This is an scan that is done through the vagina. This will provide a clearer view of the ovaries and fallopian tubes.

Ultrasound: This scan uses sound waves to produce images of inside your body (including organs and tissue) onto a screen to be examined.

Uterosacral Ligaments: Endometriosis can be found here. These are the ligaments that hold the womb in place.

If you think of any other useful terms/phrases, please add them to the comment box below!

#MyEndoDiary

Thursday, 30 January 2014

Endometriosis: Can Someone Lend Me Their Hope?


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 Endometriosis.

At the moment, I feel like I'm back at square one. The pain is so intense. I am terrified that my Endometriosis has got worse. I just have a gut feeling about it and know that its progressed again. It's worrying me that I cant do anything about the pain apart from resorting to morphine. I'm running out of ideas. I've asked for a letter to be sent to the hospital, to see if my referral could be prioritised.

I'm frustrated at the situation I find myself in. I'm frightened of the unknown and above all, I'm so fed up of hoping. Can someone please lend me their hope?

              
#MyEndoDiary

Saturday, 25 January 2014

Endometriosis: My Daily Challenges - Shower/Bath

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 a pretty sight for whoever would have to come and help me!!
  • Drying afterwards. By this time I just want to sit down!
  • Now for my hair. To dry or not to dry?! By this point I would have had to have a rest. Given myself ten minutes to recompose. Do I go through the whole process of blow drying, brushing, straightening my hair or leave it au natural and end up with a frizzy mess. Any spoonie will tell you that you need to prioritise your spoons. Frizzy mess it is then... 
  • PJ's back on & rest!!

<< Click here for previous challenge <<      >> Click here for next challenge >>

#MyEndoDiary

Endometriosis: My Daily Challenges - Stairs

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 pain in your stomach/lower back to pass. This was my challenge today!


>> Click here for next Challenge >>

#MyEndoDiary

Wednesday, 22 January 2014

Endometriosis Awareness Event: Endomarch 2014

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 awareness is needed about Endometriosis. The Endomarch will be a perfect opportunity to do just that!


The goals of this march falls within three categories..

  • To Empower
  • To Educate
  • To Effect Change

Come and join us in taking a stand against Endometriosis. Let us educate each other on this awful illness. Promote education within the medical field too. Once this is achieved, we can help change the outcome. How about finding a cure? Better diagnostics? Better treatment?

Anything will be possible... so let's start by marching!

Who's with me??

Click here to find more information from the official Endomarch website.


#MyEndoDiary

Thursday, 16 January 2014

Endosisters: People like us..

"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
They try and knock us down
But change is coming, it's our time now

Hey… everybody loses it,

Everybody wants to throw it all away sometimes
And hey… yeah I know what you're going through
Don't let it get the best of you, 
you'll make it out alive

Oh People like us, we've gotta stick together

Keep your head up, nothing lasts forever
Here's to the damned, to the lost and forgotten
It's hard to get high when you're living on the bottom

Oh whoa oh oh whoa oh

We are all misfits living in a world on fire
Oh whoa oh oh whoa oh
Sing it for the people like us, the people like us

Hey, this is not a funeral

It's a revolution, after all your tears have turned to rage
Just wait, everything will be okay
Even when you're feeling like it's going down in flames..."


#MyEndoDiary

Saturday, 4 January 2014

Endometriosis: My Top 10 Posts Of 2013

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


  1. The Day In A Life Of An Endo Girl 16/04/13 http://bit.ly/18vldq2
  2. The Endometriosis Effect http://bit.ly/19TN3dL
  3. The Emotional Causes Of Endometriosis: My View http://bit.ly/179xNvr
  4. Endometriosis: My Letter To You http://bit.ly/17jccQN
  5. Endo Doesn't Come Alone http://bit.ly/1aws9kT
  6. Endometriosis: A Letter To My Younger Self http://bit.ly/14XRJzW
  7. Endometriosis & The Spoon Theory bit.ly/169OTst
  8. Endometriosis: My Depression Diagnosis bit.ly/14CFR6n
  9. The Definition Of Endosisters http://bit.ly/1by4wYW
  10. Endometriosis: Don't Judge Us! bit.ly/1bdpMIY
#MyEndoDiary

Friday, 3 January 2014

The Battle Of The Swollen Stomach...Part 3

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 I'm struggling with. The unpredictably. The lack of control.



Are any other endosisters finding this particular battle a hard one to fight?
#MyEndoDiary