Posts

Showing posts from January, 2017

Injection Day!

Well, todays the day. The day of my second Prostap injection. I'm nervous but excited too. Nervous that it might make my symptoms worse again. But excited that it might actually make me feel better.

I've taken tomorrow off work just in case I don't feel well, but I'm hopeful that I can actually go out and enjoy my day instead.

I need this to work. Because I'm not sure I can do another 4 weeks like the last. So please keep your fingers and toes crossed for me.

I will update you all tomorrow.

A x

The Difficult Part

Image
You get used to the sympathetic looks you get when you tell people you can't have children. Along with the looks you often hear "there are other ways to have children, you can still have the family you want". And of course you know everyone is right, there are plenty of children needing a good home. A good home that you could provide. But what you really and truly long for is to carry your own child.

I've been putting off writing this blog for over a week now. And its taken me a couple of attempts to write. But I guess its one of the things people want to know. How do you cope with knowing you can't have children? So let me try explain it in my own words.

It feels like a daily occurrence that someone new is announcing their pregnancy on Facebook or another picture of a newborn is posted on Instagram. My instant reaction is happiness for that person. Quickly followed by huge sadness. And then very quickly followed by intense jealousy. I hate how it makes me feel i…

Screw you Endo!

Image
This morning when my alarm went off at 5.50am, I didn't know if I was going to make it to my last PT session. My tummy was heavy, and the pain still blatantly apparent from the day before. I said to myself just get up and see how you feel. So I did. Once I did that, I said go to the gym and watch your bestie do the session from the sidelines. So I did. Once I got to the gym, I said to myself, just try some exercises, don't do it all. So I did. Then I kept saying just a few more exercises then stop. And I kept saying that until the full hour was up and I had completed my last session.

I kept telling myself to carry on all day. I got to go see my good friend for breakfast and a catch up. I got to have afternoon cuddles with my gorgeous Pebbles (see picture below, relaxed much?!) and I got to go out for a lovely dinner with my bestie (see next picture).

Today I pushed through and got to do what I wanted. Today I said screw you, Endo! And damn it felt good!



A x

Endo Flare Up

Hope you're all enjoying your Saturdays. Unfortunately for me, bloated Friday has carried on into Saturday and the pain has been quite intense today.

From my last MRI, it was noted that I had a 4cm cyst on my left ovary. It explains why the pain is much worse on the left hand side, plus I know the endo is more infiltrated on that side too. Feels like someones standing on my abdomen, putting pressure on it and causing uncomfortable pain. Still trying to stay positive about the injection on Tuesday. T minus 3 days.

Afternoon cuddles with Pebbles (my gorgeous cat), painkillers and a hot water bottle have been in order. However, although I'm struggling today I did complete two of my three weekend objectives which I mentioned in my last tweet yesterday (@hooky2), House valued, check! Car washed, check! So my Saturday hasn't been a complete write off.

Lets see what tomorrow brings but I'm hoping it will be a better day pain wise...

A x

Bloated Friday

Been feeling pretty horrid since lunch today. Homemade chicken & mushroom pie and salad clearly hasn't agreed with me and now I look pregnant... which is quite hilarious considering thats never going to happen! Got to laugh!

What foods do you find worsen your symptoms? For me it seems to be anything bad, the dominos, the chinese takeaways, the burgers, basically the naughty stuff that tastes good.

Any suggestions on what to avoid or what helps in terms of what to eat, please let me know!

A x

Prostap Sympathy

Todays post is courtesy of my Best Friend who went to order my prescription for my Prostap injection in readiness for next Tuesday.

Any of these medications which put the body into an early menopause require ordering into the pharmacy. I had it before with the Decapeptyl, and now with the Prostap. And they ALWAYS cause confusion with the pharmacists behind the counter (tip: set up a recurring order so its ready and waiting for you every month). So yesterday when Bex went into Boots she knew it wasn't going to be an easy task.

The lady behind the counter obviously hadn't heard of the name before and so asked what it was for. Bex advised that it was to put the body into the menopause. The lady laughed. Now I'm assuming that was a laugh as she thought it was a joke or something. Otherwise I have no idea why someone would laugh at that!!

Anyway, off she went and on her return she had another two members of staff. One of them obviously confirmed the use of the medication which…

Raising Awareness of Endo

I'm excited today. Why you ask? Because I had a lovely lady contact me yesterday regarding an article she is writing on Endometriosis for POPSUGAR UK.

Why does this excite me you say? Because more and more individuals are raising awareness of this horrid disease. The more we share our experiences, the more women will feel its okay to speak about their chronic illness. And the more they do that, the more we can help one another with our own coping methods.

I can't wait to see the finished article and will be sharing it once its live for you all to read.

In other news, March is fast approaching which means Endometriosis Awareness week is almost upon us. This year, once again I'm pleased to see the Worldwide EndoMarch is happening. The London EndoMarch is on Saturday 25th March 2017. You can find out more details here, including how to register for the event.

Short and sweet from me today. Wishing you well Endo Warriors.

A x

Living with a Chronic Disease

Here are my top tips for learning to live with Endometriosis & Adenomyosis

1) Accept that you have the disease

Acceptance is not about giving up but recognising that you may need to do things differently than you have done in the past. Its taken a long while for me to get to this point. But I don't think I fully appreciated the impact it was going to have on my life until more recent times. When my Gynae used to ask me how many days off work I was having due to the pain, I used to always say none, I won't let it stop me. But more and more, I have to accept that it is stopping me and those days do happen. Once you have acceptance, you can move on to learning to live with the pain.

2) Build a Support Team

An important part of the journey is allowing yourself to get both help and support from others. This has been vital to me. I never wanted to put my "situation" on anyone else. After all, it effects me, it doesn't have to do the same to them. But recently I hav…

For all those having a bad Endo day....

Image
Just remember...

A x

Going Public with your Chronic Disease

I've just come across this post on Facebook and wanted to share. This is a great read and one that I'm sure many of us can relate to. Especially when deciding whether to go public with your disease.

https://themighty.com/2017/01/facebook-posts-chronically-sick/

A x

Monday

I'm lacking my inspiration and motivation today. I didn't sleep well last night and so I'm tired. But on this freezing cold Monday morning, I saw that my blog had gone even more Global. Thanks to Endometriosis Awareness on Facebook, my blog was seen by so many more of you Endo Warriors and their families. So firstly, hi! And thank you for taking the time to come and read my story.

I thought I'd give an update on how I'm feeling since my injection. Its a week tomorrow until I get my next Prostap injection which means I'm 3 weeks into the cycle. The pain has eased since the first couple of weeks but I'm still struggling more than I was before the injection. Though according to the nurse that is to be expected. I'm a little anxious about the next one. On top of the horrendous pain, the first bought on a water infection which caused more pain and discomfort. But hopefully that won't happen again. My moods aren't too bad, although I am a little less …

Its not an Excuse!

One thing I was worried about with going public with my disease was peoples perception of me changing. As mentioned previously, I don't want to appear weak or incapable of doing things. I don't want people to think I am using my disease as an excuse for not meeting up, or pulling out of a gym session, or not getting into work for the day.

Every day I am determined not to let this disease shape my life. I am determined to get up, get dressed and go to work on a daily basis. I am determined to get up at 6am and go to the gym and work out because I enjoy it. I am determined to see the people I love, and live each day to the best that I can.

Sure, there are days that the endo and ade do get the better of me. There are days when I have to text my manager saying I can't make it into the office today. There have even been days that I've been sent home because they can see I'm in pain. Yes, I don't get to the gym as much as I used to and my nutrition isn't as stric…

Vitamins & Supplements

One of the symptoms I have struggled to adjust to the most is the dizziness. That moment when you're in the middle of something and all of a sudden you feel light headed or faint. That moment where you panic that you are about to make a fool of yourself in front of your work colleagues, or the strangers in the shop. No doubt its something you have all experienced at some point in your journey.

I started to research what I could do to help with the sudden dizziness that I was experiencing. I was willing to try anything to take away the anxiety that I felt when going out, worrying that at any point I would need to stop and take a seat.

Well ladies, the answer is vitamins. After scaling the internet, I found several other Endo Warriors saying they had tried various vitamins, not only to help with dizziness but also the other symptoms endo/ade put upon us.

I now take Bioglan Womens Multi-Vitamins on a daily basis. In fact I take two a day. One in the morning and one at night. Whats ev…

Friends & Family

Happy Friday Endo Warriors!

I've touched on how fortunate I am to have the wonderful family and friends that I do in my previous posts, but I thought it deserved its own post. Through all the medication and procedures that I have tried, nothing is more effective than having those around you that care.

Let me start by saying that this disease sucks. Like really sucks. And I can handle what it throws at me. The pain. The heart break. The realisation that I'll never carry my own child. But what I struggle with is the strain it puts on all my friends and family.

Sometimes I bore myself, repeating daily how I don't feel 100%, feeling like I might as well just have a sign on my forehead stating the fact. All those times that I pull out of meals, or those pre-made plans because I just don't feel up to it. Feeling like a huge disappointment to those around me. I find myself apologising more and more for missed days out or spontaneous trips. Whilst all the time, its breaking my…

Humbled

After another day of horrid pain, and a particularly busy day at work, made longer than expected due to IT issues, I am feeling so very humbled to see so many people reading my posts.

Views from all around the world from the UK to the US, Australia, Portugal, Germany, France, Poland and Canada! Wow!

Thank you for taking the time to read my story, and I hope it helps at least one of you along your journey. Feel free to comment, even if its just to say hi.

Keep strong Endo Warriors.

A x

Injections & HRT

Messing around with hormones, its a dangerous game. Especially when you're putting a mid twenty year old into the menopause!

In 2015, my Gynae said he wanted to try me on Decapeptyl injections to ease my pain. For those who know, these injections make your body think its in the menopause. At the time it was a daunting prospect. I was 25 after all. I'd heard the horror stories about the hot flushes and the night sweats. I didn't know how my body was going to react.

Well, I think I lasted 2 injections. It was more to do with the fact my Uterine Embolisation procedure date came through which meant I had to come off the Decapeptyl, but thank god it did.

I got the nickname "Hulk". I lost any level of patience. I snapped at the slightest thing. To put it bluntly, I was a horrible person. That said, the pain did ease!

Its times like those, that I reflect and think what a strain this disease not only puts on me, but my family and friends too. My best friend got the brun…

Uterine Embolisation

As promised, I thought I would share my experiences with procedures I have tried for my endo and ade. So first up, Uterine Embolisation...

In October 2015, I under went a procedure which was primarily for my adenomyosis symptoms. The procedure involved an operation and an overnight stay in hospital but the hope that it would ease some of the agonising symptoms made it worth it. 
I already knew the ade was pretty bad for me. When I was diagnosed, the consultant told me that they nearly perforated my womb wall as it was so spongy rather than a strong muscle. Since then I've also been told its one of the most prominent cases of ade that he has seen.
The op was done under local anaesthetic and so I was awake the whole time. It involved the surgeons going in through an artery in my groin and pumping in some beads to block off some of the blood vessels in my womb. It was described to me as glue. "We're gluing the vessels". The idea was that this would stop the ade from spr…

My Journey

I guess I should start from the beginning...

When I was younger I had extremely heavy periods and horrid horrid pain. Every month was the same. That one week of the month was hell. I went on to the pill (Microgynon) to control the periods, ensuring they were regular and hopefully reducing the bleeding. But no luck.

I started going to the doctor, asking for advice and whether what I was experiencing was normal. I was dismissed multiple times. I guess to them it was just another young female moaning about their monthly cycle.

Eventually one Doctor gave me the benefit of the doubt. I had internal scans and examinations. I was told I had a thick womb lining and that my womb was tilted but other than that no signs of any cysts or abnormality. By this point, I had been referred to the hospital to see a Gynae Consultant. I had a procedure where they put a camera into my uterus to take pictures and at the same time I had a Mirena coil fitted to help with the pain.

My Gynae, I cannot fault. …

Its been a while...

Hello Fellow Endo Warriors,

Firstly, let me apologise for the huge gap between my posts. I'll be honest, I didn't think writing about my struggles would make a difference so I walked away.

But things have changed. My situation has changed. My life has changed. As my disease has got worse, I have found myself relying on reading about other women's experiences to help get me through my bad days. I found myself searching for reassurance that the pain I was experiencing was normal with the disease.

And so, I am back. Because if I can help just one person through a dark day, like so many have helped me, then it is absolutely worth it.

A x