My Endo Diary

What is the definition of an Endosister? For those of us who have Endometriosis, this simple word can mean so much. For those who don't have Endo, it may make no sense at all. I tried to search for a definition but I couldn't find anything to describe it properly. So I thought who better to ask than endosisters themselves? Below are the most popular words and phrases I had sent to me via Twitter. The overall message I took from this was how united and supportive we are as a community. To all my Endosisters, this is how other women view you: brave, beautiful, determined and more than anything else a friend. You don't have to see an Endosister to know they are there... "Silent survivors." @StacyP_21 "A powerfully silent understanding, life saving, light in the dark, a bond tainted with sadness but sparkling with hope...part of something special as a result of something horrible." @RetroQuenie "A global sisterhood of women with...

I'd been feeling a bit rough all day. And tired. Extremely tired. I hadn't slept properly for the last couple of weeks. Not falling asleep until 6:30am was bound to take its toll at some point, I suppose. I had to give my mother a lift, only 5 mins down the road. Before I left, as I got to the front door, I had a bit of a funny turn. My legs felt like they were going to give way. I had such a bad pain in my left ovary and my head was pounding. I took my mother out, drove back up the road, parked up outside my house and literally cried my eyes out. I couldn't move, it felt like I couldn't breathe. I just sat there and cried and cried, sobbing. So fed up & so so frustrated of being stuck in this rut they call Endometriosis.  #MyEndoDiary

So, I'm into my third month of my medical menopause & Prostap. (You can read how Month 1 went by  clicking here .)  How am I feeling? Pain free? Not quite.  Better? Well, yes a little bit.. I personally think I have both Endometriosis cysts and adhesions again. Some of the pain has been stopped by Prostap shutting down my ovaries, but not all of it. The remaining pain I'm assuming is adhesions.  The side effects of Prostap have calmed down slightly. Don't get me wrong, they can still be quite annoying and some days they cause more bad than good! But, I haven't been at the point lately where I'd want to strip off and go sit in a freezer to stop the hot flushes!! By the way, I've never done that. But I have been very very close!! ;) I'm not crying everyday because of the pain. I'm not stuck in bed. Dizziness and headaches have seemed to stay with me throughout these last two months though. I have also found myself becoming quite nauseous at t...

Judgements happen within a blink of an eye. Within a moments passing, a thought, an opinion, is conjured up. Unfortunately for Endosisters, they happen more often than not. The most popular judgement we hear... "but you don't look sick". Don't be someone who makes that judgement. Behind every smile  is a girl who has at one point been broken inside by Endometriosis. It breaks us physically and emotionally. The lengths we have to go to in order to survive some days is unreal. Just to put on a smile and carry on can be one of the hardest tasks. You may not see our scars. You may not see our pain. But trust me when I say you would never want to. Living with this chronic illness can at times be crippling. So, I may not look sick on the outside, as I pass you with a smile. But if you could see what my insides were doing to my own body, you'd soon change your mind. #MyEndoDiary

I sat in my room in complete darkness. Tears rolling down my face. I closed my eyes whilst wishing for things to get better. To feel better. Praying to be ok. To feel ok. I opened my eyes. Nothing had changed... I still have Endometriosis. And at the moment, Endometriosis has me.                                                                #MyEndoDiary

Endometriosis is so challenging! 26 & this will be my 2nd time of going through the Menopause with Prostap! Great! I thought it would be useful to document my time and experiences on it. My first course was two years ago when I stayed on it for 6 months. This time it's been suggested to start on a 3 month course and then it will be reviewed. The overall aim to find out if it is Endo or adhesion's that are causing all my pains. **Please remember these are my own experiences. It may be totally different for someone else. As with Endo, I'm sure you know by now, what works for one person may not for another** Prostap is a hormone medicine that prevents certain hormones from producing. Therefore, it puts women into a medical menopause as it will temporarily shut down your ovaries. Its active ingredient is Leuprorelin Acetate . Similar drugs to Prostap that work in the exactly same way are Zoladex and Lupron. Side effects may vary. My Prostap Diary: Month 1 ...

Earlier this week I read a post called 'The Emotional Causes of Endometriosis'. To say I was a bit shocked at the content would be an understatement. The author of this blog, Elle Griffin, says she is a Natural Fertility Expert and Feminine Vitality Coach... In the introduction of this post, she states "you are not the cause of your hormone imbalance and thus have no reason to blame your body for your endometriosis." However, what comes next is the complete opposite.  The 'theory' that is put forward, is that having Endometriosis is our bodies way of sending us a message, warning us of our self inflicted turmoil, which in turn, is causing all our pain. That if we allow our minds to be in conflict with our heart, we are ultimately bringing on this awful and sometimes cruel disease ourselves. If we just listen to our bodies messages, then we will heal ourselves and cure our endo. Wow! Just wow! Forget the tablets, forget the endless doctors appointments, mult...

This is my second installment in my project 'A Day In The Life Of An Endo Girl' . Read my first entry  here . Again, I just want to bring more awareness to Endometriosis and try to relay what we actually go through on a daily basis! I want people to understand how difficult it can be! 09/09/13 12:30am I've just realised I went through the whole of yesterday without taking any Tramadol's! I wasn't pain free, but I managed a painkiller free day! Wow, a first for everything. 1:55am Can't get to sleep. I have stabbing pains underneath. Curled up with a hot water bottle. 3:30am Dropped off to sleep but just woke up again. I can't get comfortable at all! Pains niggling away. Went to the toilet, a regular nightly thing. 8:25am Been tossing and turning all night. Hardly any sleep. 9:30am Fell back to sleep. Woken up now with pains in my right ovary. Pains are shooting to the top of my leg. 11:00am At the doctors, my appointment is at ten past. The wa...

This post is just to bring you all up to speed with what's going on with me at the moment, treatment wise...  I finally got my gynaecology appointment after six months of waiting. I am under a new consultant at the hospital which I am happy with. At my appointment I saw a Junior Doctor called Claire. I was a bit wary as it wasn't the actual consultant. She asked me what had been going on and let me explain everything to her. She actually listened to everything I said and was so understanding and patient when I became a bit emotional. She stated that my overall problem was obviously pain and if they could help to sort that out it could help all areas of my life (e.g working, depression, social life). Which I agree with totally. She talked through some treatment options. The coil, noristhertone tablets, different pills etc etc. Until I told her I had actually tried all of those options already. To say she was flummoxed as what to do next was an understatement. But instead of fo...

As ridiculous as this sounds, I've been too embarrassed to just come out and say that I've been depressed.. I'm still depressed.. I have depression. Ok, so here it goes. 12th August my Dr prescribed me antidepressants. I have been on them 6 weeks now. Before I went to the doctors about how I was feeling, things had become pretty bad. I was crying every single day, in pain every single day, fed up of taking medication every single day. It got to a stage where I couldn't see the point in my life anymore. I honestly couldn't see the reason for being here. I was never at a point where I would have acted on my thoughts, but the thoughts enough terrified me. I know it sounds awful and other people are in much worse situations than me, but endometriosis and years of chronic pain have worn me down. I saw a television presenter on morning TV talking about depression & what he had gone through. It felt like he was screaming through the TV directly to me! I couldn...

Endometriosis. Endo. Adhesions. Laparoscopy. Endosisters. Words that I had never even heard of before my own diagnosis. Now they are in my everyday vocabulary. Why does the awareness of this chronic illness have to be nearly as invisible as endo itself? I hate what we have to go through on a daily basis. Isn't it enough to cope with pains that no one else can see without having to fight doctors to believe us that they are there? Surely, we shouldn't have to convince people the pain is not all in our heads! From being doubled over in pain to missing work, school, family time and  special events. To then being put through the mill with all the medications that are thrown at us. Hormones upon hormones. Painkillers and more painkillers. Poking and prodding. Surgery after surgery. Add to that endless amounts of hospital appointments and sleepless nights in between. Is it realistic to think in this day and age that we should be expecting more?  More awareness? Especial...

What is Endometriosis? Endometriosis is gynaecological problem, where small pieces like the lining of the womb (uterus) are fo und elsewhere. Each month the lining of the womb builds up and shreds during menstruation. Instead of leaving the body, women with Endometriosis find that these chocolate like cysts migrate to other parts of the body. When stuck to other parts, these implants continue to break down and bleed. This causes inflammation, internal bleeding, pain from scar tissue and adhesions forming and overall, widespread chronic pain. Where in the body is Endometriosis found? Endometriosis can be found anywhere in your pelvis, ovaries, bladder, bowel, vagina, cervix, fallopian tubes, any tissues surrounding the uterus or the area between the womb and rectum (known as the Pouch of Douglas). In rare circumstances endometriosis can be found in places such as the lungs, brain and skin. But these are rare! Personal experience: During my two laparoscopies, endometrio...

Wow. I cannot believe my blog on Endometriosis has reached 15,000 views! I'm overwhelmed. Now I know some bloggers get hundreds and thousands of views and they are a lot more known, but for me to have 15,000 views means so much! Every person who has clicked on my posts I appreciate you so so much for taking the time to do it.  When I was first diagnosed with Endometriosis I was at a bit of a loss. I joined twitter and set up this blog in order to reach out to people & try and spread awareness. Truthfully, I didn't expect many (if any!) people to read it. For me it was just a place to rant. What I didn't expect was the love, support and reassurance I received back from people reading my blog. It still amazes me now! Whenever someone messages me to say they can relate to my blog, that it feels like they are reading about themselves & are happy to know they are not alone in this makes me feel so honoured. It's even made me quite teary at times! People being ab...

If you could write a letter to your younger self, (before your endometriosis diagnosis) what would you tell yourself? What advice would you give? Please take time to leave a comment below - let me know what you would say! Here's my letter to my younger self.. Dear me..      The periods you are having are not normal. They should not be causing you so much pain and making you spend days in bed. Don't take today for granted. In a few years you'll need all the strength you can get. There will be some tough patches ahead but I want you to remember that you are right! You know best when something isn't quite right with your body. Go with that niggling feeling! Do not let doctors  or some people you know make you doubt yourself or feel insane. The pain IS NOT all in your head. IT IS REAL! Put your foot down Girl! Fight!      There will be days you're going to struggle with pain. Getting through some days will be hard. But please believe me, you will d...

Dear Endometriosis,      This is my letter to you. I want you to know how much you hurt me. You have caused me so much pain for so many years. When I was 16 my periods were so bad I'd spend days in bed and time off school. None of my friends seemed to have the same problems, yet I didn't think it was that unusual. I didn't know you were behind it. Christmas 2009 I started to feel really down and unwell. By February 2010 you started to increase the pain. Stabbing & shooting me in the stomach, making me jump when the pains came on so quickly. You made me feel completely insane when doctors wouldn't believe me. You go where you want, when you want. You agonise my back and legs. You torment my ovaries, my cervix, my pelvis, my bladder and even twisted my bowel into a loop.      Two operations later, I've had you lasered out and cut out. At 23 I had 6 months of prostap which put me into a temporary menopause. No 23 year old should have to experience th...

When I was first diagnosed with Endometriosis, I noticed on twitter people were using the hastag #spoonies. I had no idea what this was. After some research I found a website  made by Christine Miserandino who created the 'Spoon Theory'. When trying to explain how Endometriosis (or other chronic illnesses) impacts you on a daily basis, this theory could not put it any better! It explains in a brilliant way how people with a chronic illness struggle with a limited amount of energy each day. How the smallest of tasks for a healthy person can leave us feeling exhausted. I recommend any newly diagnosed Endosister's who have not seen it before to take a look! Or, use it as a good way to explain to family, friends, employers or colleagues exactly how Endometriosis can affect you. Click here  to view the article.. I hope you find the link useful! #MyEndoDiary

So, two days into this week and I honestly cant imagine what else is going to happen. Sunday night ovary pains started to come on. All around my left ovary. Stabbing, cramping. Monday morning the pains were still present in the exactly the same place. Next I had a funny turn. Felt so sick, dizzy and became really sweaty. That passed within 10 - 15 minutes. Later on in the afternoon, the sickness came back. I was out at the time and had a 20 minute drive home. I really thought my mother would have to pull up on the side of the road for me to be sick. Luckily I got home - just in time! I absolutely hate being sick, it makes me feel so unwell & scared. Nausea didn't pass for the rest of the day, neither did the ovary pains. Day 1 of this week done. Day 2 today. Woke up feeling like I'd been hit by a bus. Ovary pains were now going from my left ovary to the right and back again. Got washed and went downstairs to make a hot water bottle. Really wasnt feeling well or quite wi...

These last few weeks have been some of the hardest ever.  Endo is definitely controlling me.  My whole life feels like its just stopping. Physically, the pain has been exhausting. I have spent so many days in bed not being able to get up due to the pain. Stabbing pains, severe cramping, backache. I've been feeling so nauseous & getting headaches. Sleeping at night is just a no go area. Doesn't happen. I find myself going to bed tired but laying there most of the night unable to sleep, mostly due to pain, sometimes I just cant drop off. I've been trying to get naps in the afternoon/early evening just to try help me get through the days. Endless  hot water bottles, tablets and medications. Tramadol, Paracetamols & Cocodamols included. Emotionally is where I'm struggling the most though... I've never felt so low. I feel totally on my own and very lonely. I seem to be crying a lot. Some days I cant even stop myself and have tears in my eyes all day. I...

Seeing as I've named my Blog 'My Endo Diary' I've decided to start this project, 'A Day In The Life Of An Endo Girl' to portray just a snippet of a day with Endometriosis. Women with Endo are not lazy. Some, such as myself suffer daily pain. Chronic pain. Sometimes mild, sometimes exhausting, sometimes severe. Small things hurt massively. What some people take for granted doing, can take all of my energy. Even down to doing the dishes or making food. Endo is unpredictable. Tomorrow may be a better day. It may be worse. If I look or sound OK one day it doesn't mean I'm better. I'm either hiding the pain from you (I've become quite good at this), having an 'up and down day' (explained below) or on the rare chance having a good day. Every day with Endo for me, is different. However at the moment, they all contain some sort of pain. So here's my first entry. 16/04/13                   5:45am Woken up by E...

I have mentioned a few times that  Endometriosis does not come alone.  (Click to see previous blog). It has an impact on all areas of our lives; our health & well being, social & emotional interactions, physical capabilities and our employment amongst others. This week my employment status has taken a direct hit. As from tomorrow, Tuesday 5th of March I will be officially unemployed. I have worked for my current company for 9 years. A few weeks ago I was called up for a meeting with the Operations Manager. I was told they were starting the process to terminate my contract due to 'job capability'. Not that I am not capable of doing my work correctly and achieving all targets set, but due to my illness and sickness from work. This week I handed in my notice as I didn't want to be fired for something, which at the moment, I can't control. I had a feeling this day would come sooner rather than later. I've had to take so many sick days and long ...

Hi Everyone! Firstly, I apologise that I haven't posted recently so thanks for staying with me and still reading my blog in the meantime. Really means a lot to me. If one person can relate to anything i have written, that's good enough for me! To feel you are not alone and not going mad is something I quite often need reassurance of - so hopefully my blog will do the same for you. The last few months have been quite testing for me. Yesterday was one of the worst days I've had in a while. Continuous pain for two days running resulted in me nearly fainting yesterday afternoon. Came on so quick, so dizzy, felt like I was going to be sick, sweating so much it was running down my face. Was so glad my mother was with me who quickly sat me down, stripped me off and cooled me down with a cold water compress. Scared the life out of me. Went to bed at 4:30pm and stayed there. I realised pretty quickly when I was first diagnosed with Endometriosis that it doesn't come ...