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Showing posts from 2017

Support Group Reminder

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Hi All,

Just a reminder that tomorrow hosts our next North Essex Endometriosis UK support group. Come along 10.00 - 12.00 at Myland Parish Church Hall, Colchester. Absolutely everyone is welcome, so please come along for a cuppa and a biccie.

Hope to see some of you there!

A x



She's back!

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Its been a while. I said I was going to take a couple of weeks off and its turned into almost a month away. It was needed. I was feeling really low. Writing about how I felt has helped me enormously in the past, not only with getting things off my mind but with accepting the cards I had been dealt. But it was actually starting to make things worse for me. I needed to stop letting this disease completely consume me.

There is a lot of negativity that comes with living with something you know will never been cured. Not long ago we lost a member of the Endo community. The pain and the lack of help made her feel like there was no other way out. I know what it is like to have dark days, but I hope to never ever feel like there is nothing but complete darkness like she did. And that is part of the reason I write this blog. To help me but to also help others know they aren't alone.

So here I am! Back sitting here, writing to you all. Its been a good couple of weeks. A week away on holida…

Taking a break

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Firstly I want to apologise for my lack of blogging recently. I feel like my life is being consumed by this frigging disease. Daily I contend with not feeling myself and dealing with the pain. When I see people they ask how I am and want to know updates (which I appreciate!). And even simple conversations at work about pregnancy can turn my day upside down. So to come home and write about it as well, just seems to be extra hard work.
I go away in a week and a half so I won't be blogging then either, but I'm going to take a break from now for a while. I'm going to take some time for myself. I know there are things that I want to investigate, such as adoption, but I also want some time to not think either. I want to try and give myself some time away from thinking about this dreaded disease and I hope my body will allow me to do that too.
Don't worry, I will be back and I'd like to thank everyone who continues to follow my journey and read my blog.
Rest up. Take care…

Thank you

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I wanted to write a quick blog to thank all those people who have supported me and continue to do so through my good and bad days. I've struggled over the last couple of weeks with not only pain, but with feeling pretty low with it too. Everyone tells you to keep positive but when you're stuck in that rut, you don't know how. I've always said friends and family are what get me through my worst days and I still 100% stand by that. Without you all, I don't know what I would do.

From the bottom of my heart, I thank you.

A x

Never ending pain

I've had some lovely messages of support since my last blog on Tuesday from friends and family. I really do appreciate all your words and although I am struggling, it does help.

Unfortunately, I had to leave work at lunchtime today due to my pain. I had taken painkillers and had a hot water bottle, but whilst I was talking to a colleague at my desk, all of a sudden it felt like my heart was doing somersaults, I felt faint and I was feeling nauseous. I have no idea what it was but my heart was pounding in my chest and I was struggling not to be sick. It was horrid.

I hate what this disease is doing to me. Not only that but I'm embarrassed. I don't want people to see me when I'm struggling, especially at work. Some might say I'm too proud, or simply just too stubborn but thats just how I am. I've had the chance of having a natural family taken away from me, so I find it extremely frustrated that its now effecting the one thing I've thrown myself into. My work…

Hospital Appointment

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I've had an odd day. First thing I headed into London, suited and booted, ready for an interview for an exciting opportunity at work. I was nervous but excited. I was anxious but determined. And although they didn't give anything away, I was pleased with my presentation. I felt good. The pressure had been lifted and I had done everything I could to give myself the best possible chance. I made my way back to Colchester feeling pretty happy with myself.

And then I got a voicemail from the hospital....

As you know I've been waiting for my operation date. I was put in for the op on 5th December 2016. The NHS waiting times state patients should be treated within 18 weeks of referral for the procedure. Keep that in mind when I tell you the next part. The voicemail was advising I finally had a operation date. My first thought "YES!! Finally! Pain free days are coming!". The next part of the voicemail was "you're booked in for 30th November 2017". My next t…

Flare, Flare, Flare

Its been a week for pain. I've written about my flare up over the last few blogs and how its been a testing and intense time. Luckily its not the same every month but one in every few flares, it feels like its never going to end. It drags on and just when you think its easing up, it smacks you back round the face again.
Yesterday was our second North Essex Endometriosis UK support group. I woke up in pain but was determined to get myself to the hall as I had been looking forward to it. I was slightly later leaving home that I wanted due to feeling nauseous and struggling with cramps. But I took pills and got myself in my car. I made it across town in good time and parked up down the road from the hall. Just as I got out of the car, I felt horribly dizzy and faint. I grabbed a post by the side of the road and got myself into the passenger side of my car. What the hell! I was so close, please body don't let me fail so close to getting to the group!! After a few minutes of deep b…

What a week!

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Wow what a week!! Its been stressful and exhausting, but equally motivating and invigorating! This week I have learnt new skills and dealt with difficult and challenging situations. But I've succeeded in each one. I may be knackered but it makes me excited for what the future may hold in my professional career. I've always been keen to develop and move up in my role, but this week I've proven that not only is it possible, but that I am also able to do so in the middle of a raging endo flare up! Now that is a definite accomplishment!

My pain is still pretty horrendous. The burning stomach won't ease up and it feels like its weighing me down. I know that stress seems to make it worse so fingers crossed a chilled weekend will help improve my symptons. Until then, I just need to persevere with it.

I'm looking forward to the weekend. Tomorrow is the North Essex Endometriosis UK support group that I wrote about at the beginning of the week, with guest speaker Mr Barry Wh…

Whats worse...

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Whats worse than a stressful day at work? A stressful day at work with a nasty endo flare up.

Whats worse than a stressful day at work with a nasty endo flare up? A stressful day at work with a nasty endo flare up and coming home to clear up cat sick on your bedroom floor.

Whats worse than a stressful day at work with a nasty endo flare up and coming home to clear up cat sick on your bedroom floor? All of the above plus standing in some cat sick you didn't see!!!!

And whats even worse than all of the above? Not being able to come home and enjoy a gin and tonic to help the above because it'll make your pain even worse!!

My pain levels are through the roof today. It was bad yesterday but my goodness I am struggling right now. The constant heavy, burning tummy ache is making it hard to walk. Everything takes effort and I'm running on the last fumes in my energy tank. I was awake at 4am this morning which is typical for when I'm having a flare. I also have to wee a thousan…

North Essex Support Group

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Hope you've all had a lovely bank holiday weekend. Its flown by but its been a good one. Plenty of sunshine, family and friend time, plus the added bonus of a successful house valuation today. Exciting times ahead!

Next Saturday, 3rd June, brings the second of our North Essex Endometriosis UK support groups. This months includes a guest speaker, one that I know pretty well! My Consultant, Mr Barry Whitlow, who is a Gynaecologist and Endometriosis surgeon.  I'm looking forward to seeing the ladies again but I'm particularly looking forward to seeing what Mr Whitlow brings to the group.

The session is open to anyone, those who suffer and those who know women who suffer. Come along for tea and biscuits and to meet other women in the same position. The support group runs 10am - midday, at Myland Parish Church Hall, Colchester.

Hopefully see some of you there.

A x


Nothing new

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I know I need to write a blog, I'm just struggling with knowing what to write. I could talk about how tired I am recently and that there seems to be no let up. But thats not new. I could talk about my lack of motivation, and that everything is taking a lot of effort. But thats not particularly new either. I could talk about my frustration about my lack of hospital date, and how every day I get in from work I look longingly for a letter on the doormat from the postman. But again, thats not new.
Basically, theres not much new stuff going on at the moment. I've been spending quality time with family and friends, and working hard at work. I did receive my The Endo Co bracelet this week which was a perfect little treat. Its so lovely and I would highly recommend ordering one, especially as some of the proceeds goes toward Endometriosis research. Find out how here.  
Hope everyone is keeping well. And remember, in Ellen's words, be kind to one another.
A x

Out of Order

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I don't know whats happened this week but it feels like its been pretty hard going. I can't even say its been anything in particular. I've just found work draining. And my tolerance levels have been questionable. The afternoons have hit me like a tonne of bricks. Its been an overly frustrating week, and although I'm all for repping the positive vibes thing, sometimes its easier said than done.

I think I rely on others around me being positive and when that starts to fall, I struggle to go with it too. I know I haven't been sleeping well so perhaps its just me being tired and grumpy too. I'm just glad its Friday, put it that way.

A x

Cream crackered!

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I'm not sure why but this afternoon has caught up on me and I feel like I've been hit by a train. My pain has been relatively bad over the last couple of days but its continued to creep up on me and now its pretty intense. I've come home, got straight in my comfy clothes and plonked myself on the sofa.

I know I've got an evening ahead of trying to perfect an application that I'm writing for a new opportunity at work. I worked on it until 9pm last night and spent another hour on it on Sunday. I really want this. But my goodness I am SO tired. Fingers crossed it'll be worth it.

I've received a letter from the hospital today regarding my appointment last week. Its addressed to my Consultant and details the fact I am struggling with pain more and more. Hopefully it'll give him a little push a long the way to getting the surgery booked in. Who knows, it may even be sooner than I'm thinking.... nahhh who am I kidding. Still a date later in the year would …

Lazy few days

Its been a quiet few days after my birthday craziness. Thursday after my hospital appointment, Bex and I headed into London to see John Mayer at the O2. It was a good night but I was still struggling a lot with pain after my birthday meal on Wednesday. It was also a late night which I have paid for since. So the last couple of days has involved a lot of sofa time and relaxing at home.

After having the reaction to the steak the other night, I am more motivated than ever to get my diet back on track to help ease the pain. I have been eating plenty of veg and avoiding anything I know is going to make my flare any worse than it has been. Luckily, the pain has eased up now, although I'm still bloated.

Its my first full week at work this week, since the beginning of April. I've been using holiday up and now the new holiday year has begun so its time to knuckle down and push on with my project. Hopefully my body will allow me to do that.

Still no movement on my operation date and I&#…

Hospital Update

So I had my hospital appointment at 9am this morning to discuss my bowel endometriosis. I sat down with a nurse practitioner who was very attentive and informative.

She explained the different options that may occur in my excision surgery at the end of the year. Below I have detailed these with a little help from Endometriosis UK website (thanks!).

There are essentially three surgery options for bowel endometriosis, which will be tailored to an individual’s needs:
Affected areas or nodules can be “shaved” off the bowel leaving the bowel intact. This option may leave residual endometriosis.For smaller areas of endometriosis, the disc of affected bowel is cut away followed by the closure of the hole in the bowel with stitches.The affected segment or section of bowel is removed and the bowel is re-joined (re-anastomosis).There is a possibility that a temporary colostomy will be needed. However, I was told this is rare and would only be required for 6 weeks. Some complications to consider ar…

Happy Birthday to me!

10th May can only mean one thing, it's my birthday! And what a birthday it's been. For the first time in years I decided to work my birthday. It wasn't all bad as my team took the time  and effort to decorate my desk with LED lit balloons, a banner and a huge badge! They're a good bunch and I hope they know how much it brightened my day.

This evening I've been to Miller & Carter with my family and bestie. Wow! What a meal. But damn am I paying for it right now. I knew deep down eating a steak was gonna become a regret but I wanted to treat myself, after all if you can't treat yourself on your birthday when can you! But within 30 minutes I was in cramping hell! By the time I got home I felt sick and my stomach was absolutely screaming at me. It's not the best way to end the day but the food was pretty amazing so it was kinda worth it!

Thank you to everyone who gave me wonderful gifts and took the time to wish me a Happy Birthday! I love birthdays because…

Is it getting worse?

One of the things I dislike about Endometriosis and Adenomyosis (just one of many things!) is the fact you can't physically see whats happening inside. You never truly know if is getting worse. You know your symptoms and how you're feeling, but you don't definitely know its a side effect of the disease or something else.
I know that in the last year my pain has steadily been getting worse. The pain level has increased. The amount of time I've taken off work has increased. The days out that I have missed out on has increased. And my sofa surfing time has definitely increased! But what is actually going on inside?!
I've started getting a lot more pain on my right side and in particular in the last 24 hours, I've been getting shooting pain in my right shoulder. Its agony and trying to get comfortable is near on impossible. But is it the disease or something else?! I know shoulder pain can be a symptom of endo but what does it mean is happening for me inside?
You c…

20,000!!!

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It doesn't seem that long ago that I was writing about hitting 10,000 views on my blog. But today I doubled that and am now at over 20,000 views! Wow!

I'm humbled by the continued support and response I get to writing my story. It still takes a lot for me to share what is a very personal journey for me, but I appreciate everyones kind words.

Thank you thank you thank you!

A x


Tired but happy

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Well May hasn't started too badly but my goodness I am tired!

Monday I went to see The Shires which meant a late night and 5.5 hours sleep which hasn't set me up very well for the busy week I am having. However, I won't let tiredness stop my productivity! I had a great day at work and smashed out a load of work which has put me in a pretty good mood. Off to London again tomorrow so that'll add to the tiredness some more but these things have got to be done.

Today I ordered my Endo Co bracelet which is in the pic below. I'm super excited to get my hands on it so am hoping it arrives quicker than the 10-15 business day delivery it states!!

You can find the bracelets for sale at the link below. 30% of the proceeds will be donated to the Endometriosis Coalition to help raise awareness and research. https://www.motif.me/collections/trending-the-endo-co/products/the-endo-co-bracelet-10001497

A x



Weekend

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Its been a busy but positive few days.

Friday was a productive and successful day, I managed to sort my mortgage and save myself some pennies. Plus I received a phone call which contained some feedback from work which was so positive and uplifting. I worry about my work sometimes and the impact this disease has on how I perform at my role, including the time I miss due to being unwell. So its a massive boost when I hear that people think I'm doing so well.

Saturday I woke up nervous because it was my first Endometriosis UK Support Group. The idea of walking into a place where I don't know anyone is always daunting but I promised myself I would make the effort to attend. Well, I don't know what I was worried about! Everyone was really lovely and I'm looking forward to the next meeting already. The only problem was I had to leave halfway through because typically my little Pebbles got ill and needed to be taken straight to the vets! £95 and over an hour in the waiting ro…

How to Support Someone Living with Endometriosis

Its always hard for people to know how to deal with someone who has Endometriosis. What do you say? You can't say anything that will help the feelings of loss and sadness of dealing with a lifelong disease. What can you do? You can't take away the pain that they suffer with day in day out. How can you help? You can't do anything whilst they are curled up in pain high on meds.

Its easy to think you can't help or say the right things. But remember, those of us who suffer do hear the nice things you say to us when we're feeling low. We do recognise that you would take the pain away if you could. And we do appreciate all the things you do to help make our lives easier.

This post was a great read and gives some pointers if you're wondering how to help! Have a read here: https://ribbonrx.com/2016/12/03/how-to-support-a-loved-one-who-has-endometriosis/

Thank you to all those that support me.

A x

Back to it!

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YES!!! I made it back! After 3 long frustrating weeks, I got my arse into gear and got back in the gym this morning. Its amazing how much of a boost it gives you when you finally get something done that has been annoying you SO much.

On top of that I got to go for breakfast with my best friend and actually enjoy it without feeling sick or bloated after eating! Woohoo!

I've got a busy few days off ahead. Tomorrow food shop and popping into town, Saturday I have the first North Essex Endometriosis support group set up by Endometriosis UK. Sunday I'm off to the Grand Designs Show at the Excel in London and Monday is finished off with a meal and seeing The Shires at the Ipswich Regent.

I'm excited for the next few days. Its a good feeling after feeling low and groggy for the last couple of weeks. Fingers crossed the positiveness continues...

A x


Bowel Endometriosis

This morning I read an interesting article that Endometriosis Australia posted on Facebook. As a sufferer of Bowel Endometriosis and someone who is waiting for the excision operation mentioned, I found it really useful.

Have a read here: https://www.endometriosisaustralia.org/single-post/2016/10/07/Endometriosis-and-the-Bowel

A x

Rough couple of days...

Day 4 of migraine and day 10 of having a headache. The left hand side of my head has taken quite a battering over the last 4 days. And I'm still struggling. I must rattle with the amount of pills I've taken to try and ease this migraine. I've lived in my glasses that  I usually only wear at work when I'm working at the computer screen. What a nightmare its been!

Its not just the feeling unwell thats annoying. On Friday I was due to have my next set of braces from the Orthodontist but with the migraine they didn't want to do the prep work that was required. Now I'm already 4 weeks behind schedule for my teeth which is frustrating.

It also means another weekend out of the gym, which makes it 3 weeks out of doing something I enjoy. Not helping my mood!

And to top it off today I was due to be at the London Marathon with my family and bestie. Instead I'm home watching it on the TV whilst on the sofa and my family are there enjoying themselves.

I've spoken ab…

Migraine & Flare up

Well it turns out my positive pants didn't do the trick this time. Yesterday I wrote about a bad headache that wasn't shifting. So you can only imagine my disappointment when I woke with it again this morning. But this time it was even worse!

I got up ready for work but quickly realised it wasn't going to happen today. Sitting in front of a computer screen all day with what now felt like a migraine wasn't going to work. I admitted defeat and texted my manager (hello if you're reading!).

It's been a day of popping various pills to see what helps. Firstly migraine tablets, then codeine. I hate taking codeine so I only give in to it when I absolutely have to. It makes me feel all kinds of funny! But needs must. Now as I'm writing this my headache is still pounding and the stabbing pain has begun in my pelvic area so perhaps it's not just a migraine and actually a flare up that I'm suffering with.

It comes back to the usual situation of never knowing wh…

Positive Pants

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Why oh why won't this headache go away! Its been a week of headaches and its been steadily getting worse. Today I gave in to migraine tablets washed down with some vanilla coke but still no let up. Whats a girl to do!

Work is busy but good. Hoping that my body starts to be kind as I've got a few days in London coming up. I am also dying to get back in the gym. Please please please body, is it really too much to ask?!

In other news its 3 weeks today until my birthday. I'm hoping 27 brings better news than 26, and that it'll give me some relief from pain at some point.

Gotta keep my positive pants on nevertheless. After all, it can always be worse...

A x


Pull your sh*t together!

I'm sitting here in my gym wear writing this post. I should be at the gym, I want to be at the gym and yet my body has other ideas. I've cried through frustration this morning. And as I was told to "pull your shit together" the tears flowed more and anger set in. It hit a nerve and so now I'm a "crazy bitch" too.

I know it wasn't meant to be nasty. I know it was just trying to get me motivated to get to the gym and to stop feeling so frustrated that my body hasn't let up on pain for the last 3 days. Every day I've wanted to get to the gym and every day I've had to give in and watch others do what I want to be doing.

I've learnt more than ever that I have to listen to my body and not push myself too hard. But do you know how frustrating that is?! To watch everyone around you do what you want? To watch people never be able to understand the feelings you have because you have this rotten disease that is eating you from the inside? Its n…

Ginger & Ice Cream

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I've been researching and also speaking to some of you about what you do to ease some of the symptoms that Adeno and Endo present. One in particular is nausea. For a while now I've described it as having morning sickness. Bit of a bad joke considering thats what you get when you're pregnant!! But for a while now I've woken up feeling sick and by lunchtime its usually worn off. Some days it can last all day but it seems to be a common morning thing.
Upon speaking to fellow sufferers and through my own research ginger is of course known to help with nausea. I've tried ginger tea before but it can be time consuming to make in the morning before work. However, ginger shots were recommended as something else to try. 
I've looked into recipes for the famous ginger shot but whilst I was in Waitress this morning, my bestie noticed they did them there. So for £1.50 a shot, I thought I'd give them a go. They taste great! I've got together a couple of recipes to …

Waiting waiting waiting...

Waiting for a hospital appointment is like waiting for rain in a drought. I had my last Consultant appointment on 6th December 2016. It was decided then that I would be put in for the Endometriosis excision surgery.

Since then, I've been taken in as Emergency Gynaecology and had a scan which shows an extended bowel. Still I have no dates in the diary for surgery. So when I spoke to a nurse about my scan results last week I asked for some idea of times.

"Well if you want an appointment with your Consultant, its looking like after August. For your surgery, it will be October, November or December".

I got my Consultant appointment through.... 8th September. Nothing for the surgery. Its looking like it'll be a year since being put forward for the surgery before I get it! How ridiculous!!

I think there are multiple things that make having this disease hard. The pain, of course. The mental impact of dealing with a chronic illness. And the frustration. The frustration that you&…

Just what the Doctor ordered!

Its amazing what a few days off, with great company and lovely weather does for the soul. My 4 days off have been fab. Its been productive but spent making precious happy memories too.

Today I am grateful. Grateful for the people I have in my life. Grateful for the home that I live in with my beautiful fur babies. Grateful that I am so fortunate to be where I am.

Some days Endo can really bring me down. But thats not today. And it won't take away the happiness that I've got from the past few days.

I am ending the weekend a happy girlie.

A x

Good Day

Its been an odd week. I've felt pretty up and down, although with the news from the hospital its been a bit more down than usual. But I've taken their advice and already started to make changes to my diet. I've swapped my Ben & Jerrys for dairy free Perfect World ice cream. And I've swapped my normal semi skimmed milk for lactose free semi skimmed milk. Its a start at least.

On top of making changes, I've got a few days off, today being the first of four days. And its been a good day. I got up and went to the gym, did a food shop, dismantled my old bed and got a lovely new king size bed, put that together, hoovered the house, and cooked dinner. I've laughed a lot and feel like I've achieved something with my day.

Shout out to the Bestie for laughing with me today... and for helping me with my new bed. You're a gem!

I like days like today....

A x

IBS? Gluten Intolerant? Lactose Intolerant?

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Been having a bit of a low day today. I contacted the hospital as I hadn't heard anything about my scan results. The good thing is there were no more cysts. The bad thing is my bowel was extended and they don't know why.

If you remember I said they couldn't find my left ovary. Well it turns out thats because my bowel was enlarged and in the way. When I spoke to the nurse today she said it must have been really enlarged for it to be blocking my ovary. Now the question is, why is it so big?!

70% of endometriosis sufferers are also diagnosed with IBS. Many women also find they have intolerances to gluten and lactose. For those who struggle with Endo on the bowel, it is advised they keep a food diary to see what causes discomfort and flare ups, with the view to removing those items from their diet full time.

My mindset today says isn't it enough that you have taken my chances of having children naturally away from me? Now you want to take chocolate and Ben & Jerrys ice…

A year ago...

A year ago today I sat and wrote a Facebook post about my situation. I sat pondering on whether to post it for ages. On one side, my mind was telling me that it was positive. That people needed to know to help them understand. It felt like it would take a weight off my shoulders. On the other side, my mind was telling me that people would judge me. That it would make me appear weak or that I was trying to use the illness as an excuse.

The first thoughts won. I hit post and quickly shut down Facebook. But the intrigued side of me kept me checking my phone. Every time a new notification popped up on Facebook I felt nervous but excited to see what it was!

Luckily for me, the response was nothing but supportive. I got messages from people I least expected to read my posts, let alone take the time to like or comment on it. From that day on, I have been more vocal about my condition. Not to get sympathy but to help raise awareness of the disease that so many women suffer with around the wor…

A is for April & Adenomyosis

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So March was Endometriosis Awareness month and April is Adenomyosis Awareness month. I'm SO lucky to have both so this month I get to write about my second disease, lucky me! So here are some facts about Ade, and what it means for me in particular..

What is Adenomyosis?

It is a chronic disease where the lining of the uterus grows in the muscle layer of the uterus. It shares similarities to that of its evil twin Endometriosis causing pelvic pain, fatigue, bloating, nausea and bowel/bladder function issues. It has a large impact on womens mental health also. Over time the Ade can cause the womb to grow and enlarge in size, causing women to sometimes appear like they are pregnant.

It is much less common than Endometriosis with 1 in 100 women suffering rather than the 1 in 10 of Endo. It can be diagnosed via laparoscopy and MRI.

For me it has made my womb soft and sponge like rather than tough as a muscle should be. When I had my first laporoscopy back in 2014 the muscle was so spongy,…

Ending on a Positive Note

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What a week! Work has been crazy busy with the project I've been working on and with today being the deadline for some of the work, it was always going to be.

Yesterday I worked from home due to pain and nausea. Well I have no time for that (!!) but I have learnt more so in the last year than ever that I have to listen to my body. But needless to say I refuse for it to stop me for too long so I was back in the office today.

Been lucky to work with some good people on this project so at least theres some laughter to go with the work. And the hard work paid off. Today we finished the week on a high with a good result for the team.

Not only did we finish on a high, it was my last full week of work until mid May. Lots of holiday and bank holidays coming up to make my working weeks shorter. Happy days!

Now its time to relax and enjoy the weekend... hope you all do too!

A x


From Good to Bad

Yesterday was a great day for Endometriosis. It made it into the UK news, with various channels covering the lack of awareness and knowledge for diagnosis. It made me proud to be a warrior.

And then today I start to see some of the comments being left on the online articles. Messages from men saying its sexist and just another excuse for women. Other women saying just get a hysterectomy and be done with it and stop moaning. I literally couldn't believe my eyes.

I wouldn't wish this disease on anyone. But I do wish those people could live a day in the life of someone in the middle of a flare up, and I'd like to see how they would cope. Its not something anyone can understand until they live with the pain.

Use your brains. Have a little empathy. Don't judge something you could never understand.

From one Endo sufferer to another, you are strong, and you should be proud of yourself. And whatever you do, don't listen to those fools.

A x

To my Ma

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I'm very lucky to have a supportive family and my Mum plays a big part in that. We all say how wonderful our Mums are. Especially when Mothers Day comes around. Facebook is full of messages of gratitude saying how much we appreciate them and all they do for us. And its no different with my Mum, so I thought I'd write a blog for her instead.

To my Ma,

When I was younger I always had the dream to have my own family and bring my children up the way you and Dad bought Laura and I up. We were always so fortunate growing up, visiting places that others weren't as lucky to go, doing things that others wanted to do. Having younger parents was always a massive bonus because we got to do all the cool trendy fun things!

We were lucky to have you around as much as we did. And still thats the same today. I don't know how I would get through all the trips to the hospital without you. The endless sitting around whist Mr W runs late for appointments. The days of my operations sitting …

Limits

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When I decided to go public with my Endometriosis and Adenomyosis I was keen to show it not only from the negative side, but also the positive. I truly believe we can do anything and nothing should stop us. Not even a chronic disease. Remember that.

A x

The H Word

I read in so many forums about women asking about hysterectomies and whether they will help with the Endometriosis pain. I know I've posted previously about my situation and knowing that the end result will be a hysterectomy for me BUT this is not due to the Endometriosis. It is due to the Adenomyosis.

Endometriosis is where the cells from inside the uterus appear and grow outside the womb. They still act in the same way as they would inside the uterus so each month they go through the process of swelling and shedding, i.e. a period. With nowhere to go, the blood builds up as scar tissue in the pelvic area and on other organs. Removing the womb will not stop this from happening!

At the same time as a hysterectomy, you would also require the excision procedure to remove the Endo from other areas. If the surgeon doesn't get all the Endo, it will remain and still act in the same way as before.

Sure for some women, they only require one excision operation and they may not need ano…

Endo Husband Article

I love this article from an Endo Husband. I thought it was particularly good at capturing the points about us Endo Warriors wanting to do things and sometimes just having to admit defeat. And also around when Endo visits, you just have to accept that some plans already made may not happen...

Have a read at http://sarahmaree.com/endohusband/

A x

Days off!

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I've enjoyed the last couple of days. Thursday I had a trip out with my Mum to Chelmsford for some shopping and some lunch. Yesterday I spent chilling with my bestie, and today I've enjoyed cuddles on the sofa with Paws and Pebs.

My pains been horrid today. Lots of low tummy pain, going into my right hip and thigh. I'm still tracking my worse days in my pain tracker app but theres not too much pattern so far.

Bex and I made a pretty good red thai curry for dinner tonight. Nothing like a bit of home cooked comfort food to help.

Hopefully the pain will ease for tomorrow so I can enjoy my last day off before heading back to busy work on Monday. Fingers crossed!

A x


Hospital Scan

Let me start by saying I hate hospitals. Like really hate them. The smell as you walk through those front doors. The old cream coloured walls. The tired worn furniture from where hundreds of individuals have sat and waited for appointments or loved ones. And the beds. Oh the beds. They have always freaked me out. I don't know why but they send shivers down my spine.

Now once I've got over the initial hatred of the hospital, I have to make my way to the gynaecology department which is right over the other side of the building. Typical. If it isn't enough that I'm dealing with the million voices telling me to head for the nearest exit, I get to the seating area and I'm sitting with pregnant women. Turns out the ultrasound areas are the same ones that are used for pregnancy scans! So there I am, sitting waiting to find out if I've got new cysts on my ovaries, whilst hearing the excited expectant mothers and their partners going through their pregnancy packs and wa…

From another view

Today I saw the following article which is from the point of view of a husband with a wife struggling with Endometriosis. I found it a really interesting read.

Us Endo warriors know it's not just us that this disease ends up effecting, but what he says around words meaning a lot, or the small things making a difference, really is true

Have a read here

A x

10,000!!!

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Wow. Just wow. I've hit 10,000 views on my blog! Thank you all so much for taking the time to read my posts. I hope it gives at least some of you some reassurance that you are not alone. And for those who read it who don't suffer with the disease, I hope it gives you some understanding of the disease.

When I started this blog, I wasn't sure it was going to be worth it. But it absolutely is.

From the bottom of my heart, thank you.

A x


Finally its the weekend!

What a week! I haven't posted due to being pretty busy over the last few days. But its genuinely been a really good few days...

I've been dreading my Advisor Milestone course in London since it was booked last year. I knew it was going to contain role play and I really couldn't think of anything worse. But it wasn't what I expected at all.

Instead it was actually enjoyable. I got to meet new people from all over the world. Make new friends. And I actually smashed the role pay parts of the course! Not only that but I got to meet up with my old team leader for a coffee before the course both days.

Its been tiring but I feel like I've achieved something. And now the course is done, it feels like I can actually start looking ahead, instead of dreading these two dates!

My pain has been letting me know its not far away, I know my limits, I just have to stay within them rather than pushing myself too much. Thats why this weekend is gonna be nothing but relaxing.

I'm i…

Jinxed Myself!

Well I jinxed myself yesterday! Shortly after writing my blog last night, my pain got pretty intense and nausea came with it. Unfortunately, its continued into today. Which means my day has involved hugging a hot water bottle constantly. I always laughed at my sister for carrying her hot water bottle around and now here I am doing the same!!

Luckily, my pain app has enabled me to see that it was 4 weeks ago when I had my last bad flare up. Really hoping it won't be the same considering that involved a hospital visit!

Anyway tonight involves more painkillers and a night on the sofa in my joggers. Lets hope the pain holds at bay...

A x

Sparkle

I'm not sure if it's just a coincidence, or whether I'm just having a good stretch but I'm feeling positive. The pain is there but not half as bad as it has been the last couple of months. My mood is on the up and I'm feeling optimistic about things.

The only downside is my skin is breaking out since stopping the injections but I'm guessing that's my body getting used to those lovely hormones again.

It's amazing when you have a period of time where you start to see your old self coming through after a dark painful time. It feels good. Like really good.

Don't let Endometriosis take away your sparkle!

A x

Post Prostap Update

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I haven't given an update recently on how I'm feeling now I'm no longer on the Prostap injections. Well Ladies, I was due my next injection last Tuesday and without it I'm pleased to report my Endo pain appears to be holding at bay. In fact I'm starting to sleep a little better and I'm starting to feel more like my old self again.

What works for one person may not work for another. I was given the Prostap to help my pain, but for me it looks like it made it worse. I know we have to try these various medications and procedures. And yes it is trial and error, after all nothing is guaranteed to help. But no wonder this disease is such a rollercoaster ride! We get our hopes up when we hear that something may help ease the day to day struggle. And so when it doesn't work it makes it so much harder to stomach.

Please don't let it it put you off though. We've all got to jump on that rollercoaster. Because one of those options may help us, even if it doesn&…

Endo Facts

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You'll notice this month that a lot more women will be trying to spread the word on Endometriosis. Why? Because March is Endometriosis Awareness month.
So to fit in with this theme, todays post contains some of the top facts on the disease...

1) Endometriosis is pronounced as end-oh-me-tree-oh-sis

2) 1 in 10 women suffer with Endometriosis. In fact it is estimated that it affects 176 million women worldwide.

3) If you put those 176 million women together and formed a country, it would be the 8th largest country in the world.

4) There is no cure for Endometriosis.

5) The average diagnosis time for the disease is 7.5 years. That's a long time to be in pain without knowing why!

6) There are 4 stages of Endometriosis, ranging from mild to severe. These are graded on how infiltrated the disease is, where it is, and the amount of adhesions and cysts found.

7) Up to 50% of women who suffer with Endometriosis may experience infertility.

8) It is classed as an invisible illness as many would …

Snotty, grotty, Amy

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I've been struck down by the dreaded "common cold" since Friday evening. I have my Bestie to thank for bringing the germs in the house and turning me into a snotty grotty sneezing machine. Still, I don't let Endo beat me so I definitely won't let a silly cold.

On the plus, my pain has been a bit more manageable. Had some bad moments today but on the whole it isn't as intense as the last couple of weeks. I would have been due my next Prostap injection today and I finished my HRT so it will be interesting to see how I feel over the next few weeks as the hormones start to rebalance.

Got my scan date through for 15th March. Not too long to wait. Really want to know if they find more cysts. Kinda hoping they do as it would explain the increased pain. But lets see.

March is almost upon us which means its the month to share the word about Endometriosis. What are you doing to get involved?



A x

A Parents View

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As a parent, one of your roles in life is to look after your children. You pick them up when they are down, nurse them back to health when they are ill and provide a shoulder for them to cry on. The problem is, being a parent of someone who suffers with endometriosis and adenomyosis, you can't nurse them back to health, all you can do is try to keep them positive and make them know you will always be there to support them. 

If someone told me if I gave up my expensive car, my numerous holidays a year and the latest gadgets, my daughter would have a lot more pain free days, I would do it in a heartbeat. There is nothing more frustrating than seeing someone you love in so much pain, knowing that there is nothing you can do about it. That is not what is suppose to happen, I should be able to fix everything as a Dad, but I can't. If I could share some of the pain I would do it in the blink of an eye. It makes me very sad that this can never be the case. 

So what can I do as a parent…

Its the small things

This disease seems to make life go past in slow motion. You spend hours on the sofa in pain whilst everyone else is going on with their normal lives. You watch as people do the things you want to do, or go to the places you once said you would visit. You hear of people settling down, getting married and having children as you had once planned. You admire people from a distance who are getting promotions and moving up in their jobs, hitting the targets you had promised yourself you would reach. All the while, you are stuck in a bubble of pain, watching life pass you by.

For you, a day with no pain is a rarity. You rely on the small things. You book plans in to have something to look forward to, whether that be a holiday or catching up with friends and family. You class being able to get out for an hour in the fresh air as a productive day. And you know that sometimes just laughing with your best friend is the highlight of your day. You no longer buy the latest fashion but buy clothes t…

Making room...

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I've completed my three days of work this week and now I have four days to relax. Bliss!

Unfortunately, my pain has got a little worse since I got home but I'm in my comfy clothes on the sofa just trying to ignore it. I know that it will more than likely haunt me over the next four days too, but I won't let it control me, and it certainly won't beat me.

I've just accepted it will always be there, and so I'm making room...


A x

Back to work

I was determined to get back to work today. I woke in pain at 5.20am, with crippling stomach cramps. My only thoughts were "Oh no Endo, you ain't gonna stop me, not today!".

I've still felt pretty rough all day. Bad pain in my pelvic area and feeling particularly light headed. I tried to keep up with healthy snacks and plenty of water all day to try ease the fuzzy head. The 30 minute walk in the fresh air and sunshine at lunch really helped to blow the cobwebs away and I actually felt much better after.

Isn't it amazing how a little sunshine can really lift your spirits. It makes me excited for the Spring.

Today was a better day. And thank goodness it was.

A x

Just keep smiling...

When I woke up this morning at 5.30am and knew I was still in pain, I was heartbroken. I didn't want to waste another day feeling sorry for myself under a blanket in pain. When I went downstairs and my Bestie asked how I was feeling and I responded saying the same, her response was "you don't look unwell". She followed on by saying I was always smiling and its only since I started this blog that others really appreciated what this disease was putting me through.

I've always been pretty discreet about it all. I've never wanted to be seen to complain and I've never been particularly forthcoming with the details on my illness unless someone asks. For most people, the mention of anything that involves "womens stuff" is enough to put them off asking any more questions.

I am feeling a bit better today, I can see light at the end of the tunnel (or this flare up at least). I'm still poorly, but not like the last few days thankfully. I've got a c…

What is happening to me?

Its pulling me apart from the inside out. The pain is so intense and its zapping me of any energy. The heavy weight, feeling like a tonne of bricks sitting in my womb. The ache in my back, making it impossible to get comfortable. The shooting pains from my hips down through my legs. The tension in my head, making it difficult to concentrate. And the nauseous feeling, sitting there as a constant warning.

This week has been one of the hardest I have had since being diagnosed. The worry about whats happening inside. The concern about whether I need to go back to the hospital. Is this normal? Is this part of the parcel?

I want to cry. Cry because it hurts. Cry because I am frustrated. Cry because I miss my simple normal life.

What is happening to me? Why is my body struggling to fight so hard this week?

A x

Unexpected Hospital Visit

Firstly, I know I've been a bit slack with my posts in the last week or so but I haven't been feeling my best.

It started on Saturday. I mentioned in my post that I was struggling wth the pain and spent a large amount of the weekend under my blanket with a hot water bottle. It was deemed a water infection and I was prescribed 7 days of antibiotics.

Well yesterday I left work at lunch because I was still feeling poorly. My head was pounding and I felt sick. I thought it was all to do with the water infection so when I woke up in even more pain today it started to ring alarm bells.

I rang my Doctors first thing and got an appointment with a Nurse at 10am. Luckily for me, my Ma came to pick me up. My symptoms had changed since the weekend. I had a particularly bad pain in my lower right abdomen, low into the groin. I had generalised pain across my tummy and in my back/sides. I also felt very sick.

Upon arrival at the Doctors, the Nurse stated that due to my symptoms and the fact …

One step forward, two steps back

Thats what it feels like at the moment. Yesterday I mentioned that I was on the sofa feeling like I was being punished after completing the tasks that I planned for the day. Well it turns out I have ANOTHER water infection.

I spent my Sunday afternoon at the Walk in Centre waiting for some antibiotics. I've had them enough to know the symptoms. I think I just like to stick my head in the sand sometimes. Doesn't everyone at some point?! Well I asked the Doctor what I can do to prevent these recurring infections. His response was "well if its the endometriosis causing them, theres nothing you can do." Well thats just great isn't it! This disease continues to throw more and more curveballs my way. I just wonder when they'll stop.

So another 7 days of 4 tablets a day and another £8.40 spent on a prescription. Endo is getting more and more expensive for me it would seem. But needs must.

My parents have bought me a TENs machine to see if it gives me some relief. I&…

Oh Mr Grey!

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I woke up today determined to complete the plans I had made. So off to the gym I went first thing. Next on my list was getting some treats from my fav bakery in Colchester, Crouch Street Bakes. Another tick in the box. And finally, clearly the most important part of the plan, to get to the cinema to see Fifty Shades Darker with the Bestie.

Well let me just firstly say, Mr Grey didn't disappoint. Whilst I was sat in the cinema with horrid tummy pains, the man on the screen was a fab distraction for a couple of hours.

Unfortunately since then I've been home on the sofa with a hot water bottle and blanket. Perhaps my determination for completing my plans means I am paying for it now. But nevertheless, I beat you today Endo. You didn't stop me. Hell you would have been in serious trouble if you had made me miss watching that fine specimen of a man....


A x

Inspire Others

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Speak up and inspire others. Don't be ashamed of your struggles and experiences. We can all help one another. Because we are Endo Warriors. And we are stronger together.

A x

Keeping track of the pain

Hi All,

Today I've been investigating how to keep track of my symptoms and diet so I can help determine if I have certain triggers that make the pain worse.

I've got two apps that I'm testing on my iPhone at the moment. Pain Coach by WebMD and Nanolume. The second only allows 10 free entries before it costs which isn't ideal but its minimal for something that could potentially help.

Has anyone got any apps that they would recommend for keeping track? Please get in touch.

In other news, its been a week since my second Prostap injection. I think the nurse lied to me. Just saying.

A x

Fatigue

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My pain has been almost unbearable today. The backache, the pelvic pain, the hip pain and of course the headache which hasn't left my head for a week now. Whilst I was driving to work this morning, sitting in the daily traffic in Colchester, I was clouded by nothing but negative thoughts. The constant encouragement to get yourself to work, the wondering how many hours you will last before needing to go home, the overwhelming urge to just turn around and drive home so you can curl up in a ball and sleep. It was a long 25 minute drive today.
I've naturally experienced tiredness before but since being on these Prostap injections, I've found out the true meaning of fatigue. Chronic fatigue. The feeling of just being in a room but not taking anything in around you, whether it be sounds or movements. The feeling of your heavy body, not wanting to move, even to take a sip of your drink. And the worst of all, knowing you look exactly the way that you feel. Like poo.
I've got a…

Getting back on the healthy train

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Determined to get back on the healthy train to make myself feel better. Tonights meal was a steamed haddock fillet, green beans, broccoli, roast sweet potato cubes, and a chilli and garlic dressing. Pretty tasty.

Just need to get my sleep back on track next please!

A x

Some Days It Creeps Up On You

I knew I wasn't completely myself when I woke up this morning. You know when you just know?! So when I got a text this morning announcing someone I knew was pregnant, it wasn't a huge surprise when the tears started falling down my cheeks.

Its the first time I've cried when hearing the news of a pregnancy. I've written previously about how hard it is but I've never actually cried. But this morning the tears wouldn't stop. It stopped being about the other person and all about the sadness for myself. The fact that they had what I was never going to have. The fact that it had happened to me. The fact that right in that moment I felt alone with my sadness. And then I felt guilty. Guilty that I had made it about myself. Guilty that I was crying over what is the happiest news for them. Guilty that I had so much to be grateful for. Which of course then led to more tears.

It didn't last long. I needed to cry but I wasn't going to let it rule my day. So after 20…