Monday, 28 November 2011

The Liebster Blog Award

Today I had a notification to say I had been given The Liebster Blog Award by another blogger and a fellow brave endosister. I will be 100% honest and say I had no idea of what this award meant. After reading the link I was sent I am so grateful to be thought by Endo Joanna from Living With Endo when she was compiling her five favourite blogs for this award.

Liebster is a German word which means "dearest" or "beloved". It is also used to refer to someone's "favorite" and the idea of the Liebster Blog Award is to bring attention to blogs with less than 200 followers that deserve more recognition and encouragement.

I started this blog to help raise awareness of endometriosis. When I was diagnosed I felt so alone and wanted to speak to other people who were going through the same things as me. Twitter and this blog allowed me to do this. I never actually thought others would care to read my blog or my thoughts, it was initially a place to voice what I was feeling. To know that people read my blog and can find some similarities and comfort that they are not alone means so much to me.

Here are the rules:
1. Thank the giver of the award and link back to their blog!
2. Select 5 of your top bloggers & let them know by leaving a comment on their blog!

3. Paste the award on your blog!

Here are my 5 choices for the Liebster Blog Award. Please take a moment to read their blogs when you get a chance. I believe they all provide such honest information and thoughts on their daily life, struggles and successes. All very brave women. The last blog I have referred to also provides updates on research in endo and further links which I think is an interesting read and would recommend.

1. Endo Journey from Endometriosis: The Journey Of A Woman Warrior
2. Begining To Endo from Explore The Journey: From Beginning To End..Ometriosis
3. Foxy from Foxy In The Waiting Room
4. Me Inside And Out from Me Inside And Out
5. Matthew Rosser from Endometriosis Update 

Endometriosis: True meaning of the word 'FINE'

I'm FINE. How many times a week do you hear yourself answering with that reply? Work colleagues, friends, family asking 'how are you?' My default reply: 'Fine thanks'. That one word to you sums up everything yet when answering, the person enquiring may not understand the full meaning of the word.

F.I.N.E = Frustrated. Insecure. Neurotic. Emotional

Frustrated. I'm frustrated that I have endometriosis. Frustrated that I find it so hard to
do 'normal' daily things . If I have a busy day today then by tonight or tomorrow I know its going to catch up with me big time! The cramps will come, the pain will increase. I cannot plan things. There's no exact pattern with endo. It can creep up on you out of the blue. Some days you know straight away it's going to be a bad day. Other days it can be so unexpected it will catch you out. You cannot predict which will be good or bad days. You either just have to say no or take your chances, say yes to a plan and hope you'll be ok. If you're not you end up cancelling last minute...again. That's frustrating. More so is the line 'but you look ok'. Yes, at the moment I may do. But you don't see me curled up on the floor unable to move because cramps are so strong. You don't see me crying and breaking down when the pain is so bad I don't know how I'm going to get through the next wave of pains. You also don't see that I've become a good actress. I may look ok to you but inside the pains are hurting so much I couldn't begin to describe them.

Insecure. I get insecure thinking I'm alone in this. Endometriosis can be a lonely disease. You go through stages where you think pain and extremely heavy periods are normal. Then you realise they're not. But who do you turn to? Who else do you know gets the same symptoms as you? I am so grateful I have an amazing mother and brother who are always there to cheer me up and support me every day. I'm also so thankful that I found my endosisters who know exactly what I go through as they experience it too. On your lowest days you may feel insecure and alone but remember endosisters are always there to chat too.

Neurotic. I feel like this a lot. Before I was first diagnosed I had endless appointments with my doctor. I knew something was wrong, but my doctors at first didn't seem to agree. They said it was just IBS. To go home and change my diet. I knew it was something more but how could I prove it? All the tests and scans were done. Every single one came back clear. I did start to doubt myself. Was I really in that much pain? Yes I was, but endo can't be seen physically. Persistence is needed. If you think there is something wrong you need to voice it. More recently the neurotic feeling is creeping back up on me. I've decided to go for private healthcare and I have an appointment this Friday with a specialist. However already I'm thinking what if he doesn't believe me? What if he thinks it's not as bad as i think it is? If I'm being stupid going private and should just wait a bit longer? Trying to reason with myself he won't think any of the above. He specialises in endo and has experience.

Emotional. So much so, some days I feel like an emotional wreck. I can go from being in good spirits to feeling so fed up and down in an instant. I can cry for no reason at all and find I can't stop. The mood swings are definitely that. Swings. One minute your happy, the next you could scream and shout and scream again. The phrase an emotional rollercoaster is an understatement. It's very tiring.

So the next time someone answers that they are 'fine'...Please remember it is not as straight forward as you think. They know what fine means to them, but it would be another exhausting avenue to go down to explain this to others.


Friday, 14 October 2011

Endometriosis: Why me? Why not?

Why does endometriosis have to be so frustrating?? So annoying? At times making you feel helpless, alone and fragile. Endometriosis - the name itself is complicated enough to say to those not in the 'know'. Why does the condition itself have to be a million times more complicated. This last week has been so up and down for me. Some days I have been feeling great, doing lots. The next day I'm in so much pain I can't do anything. My bleeding has been changing from very light to practically nothing to heavy with extreme pain and cramps. It gets so bad the memories of good days are hard to recall and bring to the front of my mind.

Breaking point came today whilst in the supermarket. It was packed, my cramps had started from the moment I got out of bed. Walking around the supermarket I was surprised people wernt giving me funny looks as I stood in one place holding onto the trolley to try keep me upright. It was hard to walk. Got to the queue to pay when they came worse. I could feel my face going bright red from the pain.. I had tears strolling down my face because the pains and cramps were so strong and sharp it instantly brought tears, whilst trying to act normal at the same time. I don't think it worked. I could see a few people looking over as I was trying to stop myself from crying anymore. I was so humiliated. How embarrassing. I am so grateful my mother was with me so I didn't feel completely mad. As I have been writing this I have had to stop a few times, shut my eyes with my head in my hands waiting for the next waves of cramps to pass.

I could sit here asking 'why me?' but why not?? What makes me so different from others not to suffer from this. No one deserves it. There should be a cure for Endo and I find it ridiculous that at this time the only way to diagnose it still is by surgery and there is still no cure. More and more I find myself getting totally frustrated when my endosisters and I are going through unneccesary pain every day! Added onto the stresses and strains of daily life that everyone has, we also have deal with endo. A word that can be shortened but unfortunately the same thing cant be done with the pains or reality of it.


Sunday, 28 August 2011

Who has the control? Endometriosis Vs Me...

Last night was one of the worst nights I've had in a long long time. It started on Thursday when I had my review with the specialists at the hospital. As I've mentioned before I had the mirena coil inserted in February during my lap. I started taking norethisterone in June due to continuous bleeding, it's now nearly September and even though bleeding is light I'm still on every day :( So during the review I was advised to stop the norethisterone (which I have been taking four times a day) and start taking the combined pill again. The reason they explained for this is that the coil and norethisterone both produce proestrogen. They believe too much of this hormone has caused upset and continuous bleeding.

So since changing meds Thursday and Friday I was still bleeding but pain wise ok.. I felt extremely positive leaving the review on Thursday. I was happy we were trying something new and felt I was making progress. Last night was a whole different story. I started bleeding a lot heavier than I normally do daily. Which inevitably brought on cramps..huge cramps. By 10 pm they were getting more frequent. At 11 pm they were constant. I ended up curled up on my living room floor for an hour and half stuck as I couldn't move due to the pain and cramps. I haven't had them that bad since February/March time. Between 7:30 pm and 1 am I had taken four Tramadol's, four Buscopan's and took two of the norethisterone's to see if it would help. Not one bit. Got to bed around 3 am, must of had only a few hours sleep. Today I feel exhausted! I'm fed up.

To add to the worry I am going away to Mexico with my friends for two weeks on Sunday. I am terrified I'm going to be in that much pain on holidays it will just ruin it for me. I have an appointment with my GP on Tuesday so will see what they advise. For the time being I feel each time I make slight progress, I get knocked back massively. I've heard the saying 'You have Endo, Endo does not have You'.....right at this moment I feel it does have me. I have no control over it. I just don't know what to do next or more importantly I don't know what the Endo will do next..

Excuse me while I scream... AAAAAAARRRRRRRGGGGGGGGHHHHHHHHH!!!!!!!!
Is Endo Winning...??

Thursday, 16 June 2011

Endometriosis: Doctor's need a wake up call...!!!

I've gone past the frustrated state I was in this morning. I've gone past the anger, the feeling that I would like to slap that Dr right across the face. Gone past feeling annoyed, wound up and livid. I'm now upset. My first ever blog was about how the majority of doctor's dismiss endo. Today it happened once again.. << Rewind to the beginning of last week (as I stated in my previous blogs), I started a new hormonal medication called Norethisterone to help with my treatment of endo. I am also on evorel patches to counteract the side effects that come with my treatment. Since the new tablets started the patches have not been working and my emotions and mood swings have gone right out of the window. So I arranged an appointment with my GP today for some help with 3 simple things..

1. A sick note to cover me for my time off from work this week.

2. Higher dose evorel/hormone patch to help me cope with the rise in side effects from the new medication.

3. More buscopan cramp tablets as the last few weeks i've been in agony and they only supplied me with a weeks worth last time..

As soon as I walked into the Dr's office, the first words she uttered to me was "You have 10 minutes." After having to wait an extra 30 minutes as she was running late with the last patient I wasn't too impressed but just let it pass. I explained what had been happening the last few weeks, pains, cramps and side effects. Answer - stop the Norethisterone. Simple yes? No. I then had to explain to her what these tablets actually were and what they were being used for, as prostap wasn't working alone it needed this to co-inside with it. If I stopped taking it I would be bleeding all day, every day, very heavy like before. I was then advised that irregular/heavy periods were not a symptom of endo and not very common at all. Ok.. left that go also. The next piece of advice she decided to give me was "I need to put up with some pain"...Oh My Gosh... At this point I wanted to slap her. I 'put up' with pain everyday. I have 'put up' with it for years! I always take my mother into every appointment with me, I have been dismissed so many times she always comes in now to make sure they listen to me. I looked at my mothers face when the Dr said this and knew instantly this wasn't just me being 'hormonal' and taking it the wrong way. My mother quickly informed the Dr that I go for too long without taking pain relief, because I hate doing it, and on a day to day basis she ends up shouting at me to take something because by that time I'm doubled over in pain, usually crying. I thought at this point the Dr would provide me with the prescription she had wrote and I could leave. Wrong. She then went on to ask me "Am I sure I actually have endometriosis and it's not just a bowel problem??"

So Dr, if it's not endo then I had a laparoscopy for the sake of it? I'm having prostap injections every month, being put into an early menopause, wearing hormone patches and taking pain relief tablets nearly every day at just twenty three just for the sake of it? I nearly blew. I normally have the patience of a saint. I'm quite a laid back person, don't take things too seriously if I don't have to, I don't argue back with people. But this time I really felt like blowing. My health I take more seriously than anything else. Why should I just have to 'put up' with things? Now I'm at the point I'm really upset. I've cried a little and cant believe I've let a doctor who knows nothing about endo make me feel this bad. I even started to think maybe I shouldn't have asked for those things? I should have just stuck it out...luckily my sense kicked back in pretty much straight away and I remembered what an endosister said to me yesterday:
"I don't care what HE says, what SHE says, or what THEY say. All I know is what I say AND I know my body best."

Wise words. How true this mantra is, I just didn't think I'd be using it so soon. I'm totally and utterly fed up. Why does it have to be such a battle? Constantly! Why can't doctors actually read up on endometriosis and actually speak to their patients. Learn first hand from us what its actually like, not just read from textbooks. What can I do to change this? I'm running out of steam, energy, patience and idea's.. But if I stop shouting, stop searching then I'd be in a worse situation. No one writes this on an endo fact sheet. Its about time doctors got real..!! 


Monday, 13 June 2011

The Battle Of The Swollen Stomach

At the moment I’m sitting at home after having to ring in sick to work, again, having cramps, vaginal pain, feeling sorry for myself. Its my birthday next Sunday.. I’ll be 24. When I had my laparoscopy in February I really thought by the time my birthday came I’d be recovered. Finished with endo. Done. Instead, I’ll be a 24 year old that still has an extremely swollen stomach. Still looking five months pregnant and living in my oversized black cardigan just to try and hide the bloated look a little. I don’t think it works, I most probably still look fat or pregnant to others, but its become a kind of comfort and I hardly go anywhere without it on.

Since all this started, my swollen stomach was the first main symptom (along with shooting/stabbing pains) that I had and knew instantly something was wrong. Since then, my stomach has never gone down to what it was before. Granted some days its not as bad, but its never flat or ‘normal’. I’ve forgotten what normal looks or feels like. I’m fed up of wearing the same clothes all the time because half of my wardrobe doesn’t fit around my stomach. The last week my stomach has been at an all time high. Huge. I weighed this morning. An extra 7 pounds have been added instantly due to my swelling. Half a stone. It hurt. A lot. I cried. Partly due to my emotions lately, mostly due to frustration. Frustrated that I cant control the swelling. I’m all researched out on ‘how to reduce a swollen stomach’. Drink plenty of water, don’t drink too much water, take water retention tablets, dandelion herbal tablets. I’ve tried it. I try to convince myself some days that yes, its working, my stomach is looking better. The next day, whoosh! Huge again, back to the black cardigan.

I think even Google is fed up of me now thinking ‘oh here she is again..’ ‘what does she want this time?!’ I know what I want. I want my swollen stomach to go. I want to be able to wear nice clothes that a 24 year old should be wearing, without having to restrict my wardrobe to loose fitting items, that cover my stomach. That’s what I want. I think that would be half the battle in me feeling better, physically and emotionally. That’s what I want. But how do I get it? I have absolutely no idea. And that’s really getting me down…x

** Please see The Battle Of The Swollen Stomach - Part 2 **


My Endometriosis - Four months on..

Today its June 13th. I had my lap February 15th. Four months on, am I cured? No (wishful thinking).. Have I found all the answers I’m looking for? No not yet.. Am I better? Slightly. But nowhere near as much as I hoped. I now see I was a little na├»ve to think the I’d have the lap and hey presto! Im back to me again! So where am I now? Well to date, I have had four prostap injections. On the last check up at the hospital we realised that it hasn’t been working for me as it should have. For any that do not know, prostap is similar to Lupron - which is supposed to shut down your ovaries and stop your periods. I however continued to have periods while on prostap and for much much longer than normal. Last month I was on for three weeks of the month! They have decided to try me on a new medication called Norethisterone (I have no idea how to pronounce that?!) a hormonal tablet to be taken three times a day. Its been a week and I have had no spotting, no bleeding. Yay! On the other hand my emotions have been everywhere. I cried for four days straight. Over nothing and everything at the same time. I have also been one moody cow! If looks could kill then a lot of people would not have had a chance around me this week! It’s one of the worst feelings when all you do is snap at people, which always seems to be those closest to you, and you just cant control it. Insults and bitchy comments have been flying out my mouth before I’ve even had time to think. And that’s really not me at all. I’m so lucky I live with my amazing mother and brother who for this last week have totally ignored me - literally! Just left me to it. Jokes aside though its really been a tough week. This new medication has hit me hard, physically and emotionally. My stomach has swollen three times its normal size, so embarrassing! Not to mention the tiredness. I wanted to stop taking these tablets but will listen the advice of my mother to continue taking them for now and let my body adjust to them. Mothers know best after all right?? I have two injections left.. And in October I’ll have a review with the consultant who did the laparoscopy.

Who knows what will happen in the next four months. There has been plenty happening these last four. Some days I wish I could see into the future, what will happen, when will I feel completely normal and better again? Then I think what I’ve been through this last year and half. Would I have wanted to know all that? To know what each day has brought? Some days laughter and fun, however most of the time worry, pain, depression, insomnia and more pain? Not really. For now I think I’ll stick to taking one day at a time and just hope for the best.

Friday, 29 April 2011

The Power Of Twitter & EndoSisters...

The last year and half has been a rollercoaster to say the least. Both physically and mentally. For the majority of it, I went through each day thinking I was going mad. That the pain must have been all in my head because every single test that I had done came back clear. The only obvious result I felt was I getting was that I was going insane. Confusion was an understatement and even to this day there is still a lot of it around. Confusion from doctors not knowing what was causing the pain, ignorance from other doctors not believing I actually did have pain, confusion from test results, from wrong diagnosis and from myself. Just not knowing what to do for the best. Who to go to next for help. Trying to convince myself that what I was experiencing wasn’t ‘normal.’ That I didn’t just have to put up with it. So I spent endless time googling symptoms (…bad idea). Although I still do it now - I cant seem to stop myself! I think I may have a slight addiction.. Free Advice: Trying to self diagnose when your not feeling well and in an emotional state that endo puts you in is not a good idea!! I learned the hard way! Eventually the laparoscopy went ahead and confirmed I had endometriosis. So what was I meant to do now? How would this affect me? My life? How am I going to feel? Happy I knew what it was, saddened by the fact it was endo. Confusion strikes again. I don’t think I’ve ever had so many questions running through my head at once, to which I didn’t know any of the answers. Totally not in control of it and I didn’t like it. It frightened me.

So I turned to twitter. I had been using it for a while before but decided to make a new account. My aim was perhaps a bit selfish to start off with. To start an online diary of my day to day life with endo, how it was affecting me, how I was coping. I also wanted to raise awareness about endometriosis. So many people I talked to had no clue what it was. And if I’m totally honest, neither did I until I was diagnosed. I didn’t know if I would get any followers or if anyone would be in the slightest bit interested in my tweets about endo but I’ve never been so wrong. I have met and talked to some amazing women that totally get how I’m feeling. If I don’t feel the best I only have to put one tweet on and almost instantly I’ll get a reply. If I need advice about symptoms, medicines, tips on anything then the women I’ve met are so open they will tell you all that they know and try and help in anyway possible. Its unbelievable how supportive total strangers can be yet I feel I’ve known them for years. I think it’s because you can say exactly how you feel without being judged. Even on my worst down days when the pain is unbearable and at some points I just want to give up, my endosisters can just say ‘I understand’ or ‘I totally know how you feel.’ Other people can relate to you so much but they don’t actually understand the pain and emotions you go through daily. I never knew by having people on twitter who instantly knew how you’re feeling would help so much. Make me feel supported. That im not going mad after all. Mainly make me realise that I’m not alone. The endosisters I’ve met are so inspirational that even on days when they too may be feeling awful and in terrible pain, they still have time to ask how I am, crack a joke or even share the tears. Many nights I have logged onto twitter with tears strolling down my cheeks and by the time I’ve logged off I’ve been laughing my head off and still giggling later on that day over something we’ve talked about.

So really, I just wanted to thank each and every one of you that’s asked how I am, made me laugh, cried with me, given me advice, tips and support. I've said it many times but setting up this endo twitter account is the best thing I have ever done. It’s made me feel normal again. So thank you so sooo much. I’ll be forever grateful and here to help in any way I can if you ever need it...x

Thursday, 14 April 2011

New Chapter...

So, it's been a week and half after my second Prostap injection (similar to lupron/zoladex) and I feel (dare I say it...??) FINE! :) Great actually.. Someone asked me this week how I was feeling and I answered 'happy'..I had to double check it was me who wrote it! I even caught myself singing on the weekend! ;) Wow! It's honestly been the best I've felt in over a year! I was umming and ahhing whether to write this blog or not because I didn't want to 'jinx' myself and set myself up for a fail. But I come to the conclusion that it's definitely something to blog about, a cause for celebration! Don't get me wrong, I still at times feel awful. Mind of a 23 year old, body of an 80 year old with all my aches, and I still get days when I can't even bring myself to get out of bed. Other times i'm wide awake til stupid o'clock in the morning, only to sleep a few hours then BANG! Wide awake again. I still need to take painkillers, have backache and my stomach still doesn't last all day! It comes and goes. Manageable! I've even gone once this week without taking any painkillers all day. If I was told this six months ago I would never have believed it. No chance. Zero. Zilch! I would have laughed in your face (or most probably would have cried - yes I admit now i've been slightly emotional these last few months..) Even this time last week when I literally slept in bed all day, had to be woken up by my mother to make sure I ate something, then went straight back to sleep, I wouldn't have believed it. I physically couldn't do anything that day. I think it totalled to 36 hours I slept for. Really think it was my body's way of screaming at me, "STOP! SLOW DOWN!" Helping me to heal. Well it helped lots!

This week, I have had a night out with my three best friends, got to wear my new dress, I even DANCED!! Shocked myself there lol! I'm not quite dancing on the tables yet, (my legs currently ache too much and i'd most probably get stuck on the way up!) But i'm working on it lol. I have been for a beautiful walk around a whole lake, not half of it then stopping due to pain! And I've worked one shift. I've even painted my nails..! I normally wouldn't have gone a day without putting my nail varnish on or changing the colour - I think it's been about four months, shock horror!! But this week im back on top of it! Bright Pink! Yes, I know it's only something small but I havent had the energy up until this point to do it or even care. I've even had two people tell me that my stomach seems to have gone down. This is one of my major symptoms with endo; swollen stomach. I hate it! It literally became really swollen overnight in June last year and just decided to stay. To the point of looking five months pregnant and none of my clothes fitting. Of course I put forward plenty of opposition, but it didnt listen. Endo has a mind of its own. The last few weeks i've been taking water tablets and now for two people on two separate occasions to mention they can see the difference in my stomach - I felt like jumping!! I've also realised this last week that there are certain people I dont need in my life.

"Some people make your life better by walking into it, others make it better by leaving..."

I may have learned this the hard way but at least I've learned it now. Moving onwards and upwards it's been a great week, tomorrow also is my last day in college, EVER! I'm then a qualified childcare worker and i'm soo excited about the new possibilities it can bring. To get a new job that I will love and not hate going to each day..still dreams at the moment, but they're starting to get closer :) This feeling may not last long but I decided to write this blog to remind all of us that the next time we're having bad days that there really are better ones to come. It's just over two weeks until my next injection. I'm really not looking forward to feeling as horrible as I did after this months one again, but I think i'd rather have two or three bad days then twenty nine good/manageable days to follow. Better than feeling ill every single day like I have been. Gotta be worth it in the end, right?! Here's to hoping & new chapters for all of us.

Sunday, 3 April 2011

Endosisters Are Superheroes

As I was blasting the music out of my headphones this week, this one song in particular really stood out.. 'Alicia Keys - Superwoman'. The words all the way through the song are spot on and can mean so much to so many different people. But I thought how true these words in particular were for us endosisters dealing with endometriosis on a daily basis...

"...Even when I'm a mess, I still put on a vest
With an S on my chest
Oh yes, I'm a Superwoman..."

But somedays, we just have to. No matter how much pain we may be in that day, no matter how emotional or all over the place we are feeling, or just plain exhausted. We just have to carry on and get through the day the best we can. Whether its because we have to work, go to school, college, do the weekly shop, look after children, housework - anything. Even the smallest of things can be a huge mountain to climb at times. But I just wanted to let every woman who may be reading this know that we are superwomen! Every day we get through turns into a week, a month.. At times it feels like we won't even make it past lunch time never mind the rest of the week! But we do. How we do it somedays amazes me - when all I feel like is crawling back into bed and just hiding there. And at times I do! I'm sure it's the same for many of us.. But each day is a new day. We put back on our vest's with an 'S' and get on with it the best we can. Again..! Im proud of myself and all other endosisters for getting through yet another day with endometriosis. Definitely something to celebrate and smile about!


Saturday, 2 April 2011

Back To Reality

This week was the first week in over a year that I started to feel myself again. Dont get me wrong, I've still had down days and im sure there's more to come, but recently they've been just days or sometimes just hours, not weeks. Started back to work on monday, granted I havent done much there yet but im easing myself in. What i've been finding though is because I work 5pm - 10pm, by half past seven/eight o'clock im exhausted! Been struggling to keep my eyes open and thats not good when working in a call centre! The 'PING' noise when we get the next call through should wake me up though! Then when im home im wide awake and cant sleep! The proper work will start next week so will have to see how I go. Wish It was a job that I loved, then it would make it so much easier going to work and try to cope.. Boses have been asking me what am I going to be like next week? How will I cope? What will I do if im not well on a call? Honest answer...I can't tell you. I have absolutely no idea. Endometriosis doesn't play by any rules. It comes at anytime. It's unpredictable, a complete and utter pain! But i'll have to cross that road when I get to it.

I also started back college. I didn't stay the whole day, yes I only managed a few hours but i've started thinking in a more positive way. If i've had three really bad days in a week now im starting to think well at least i've had four ok days and vice versa. Realised that im not going to be fully recovered overnight and it's going to take time. Patience is needed with endo. Lots of it!! But I think it's good to acknowledge the good days or even the days when you feel 'not too bad'. Little steps girls will get us through. So, I'm going to set little goals for myself and once achieved maybe it'll feel like im progressing that way. All i've been doing lately is focusing on the negatives and it's not doing me any good. So first goal: night out with my girlies next Saturday! It'll be the first time i've been out with them in 2months properly, i'm going to hit the town and paint it red! Ok..maybe not red - but a deep shade of pink at least!!

Even though my stomach is still swollen (gutted it hasnt gone down yet..) I may even go and buy myself a new dress, jazz myself up a bit, get back to my old self because I don't like this version of me at the moment. The boring, staying in, unwell me. I was out nearly every weekend with my best girlies before this endo hit me big time, so enough is enough, it's not going to stop my life anymore, i'm not going to let. I know i'm going to have days when i'll be so fed up of everything, the side effects of the medication will get me down, the endo pain will hurt me..but i can't leave it ruin my life. When those days come im sure I won't be feeling this positive, i'll most probably be depressed, crying and won't be able to see a way forward. But i'll have to. I've stopped living these last few months and I want to get back to me. Back to reality.. So thats exactly what i'm going to do. Endo is not going to control me...x


Saturday, 26 March 2011

Endometriosis: The Power Of A Smile..

I love quotes. Quotes about love, quotes about friends, about family, happiness, times of sadness or celebration. Pretty much every subject. I have been collecting quotes for over four years now and have a book full of all my favourites. However, I recently came across one that really made me think.

"You only see what I choose to show.. There's so much behind this smile you just don't know.."  

It made me think how greatly this relates to us girls with endo and also applicable to many, many other things in life. It's amazing what a smile can hide. Such a little thing, yet it covers up a whole backlog of emotions. It can hide pain, lots and lots of pain. When our bodies feel like they're screaming out and the whole world can hear. It can't. For us inside it's like a constant scream, cry or sometimes when lack of energy hits, just a wim
per. But when people ask how I am, I've noticed my usual response is "Im ok thanks, getting there" or "Im fine". The word 'Fine' I once heard being described as 'Frustrated, Insecure, Neurotic, Emotional'. Yep, that pretty much sums up how I'm feeling. I want to tell people that some days I feel like I'm all over the place, some days I'm an emotional wreck, I'm fed up and I'm hurting. But most of the time I don't. I just say Im fine - with a smile. A smile also covers up your worries, your anxieties. On the outside your smile is painted on. On the inside you're stressed to the max, with a million and one questions, all running through your head at once. Worrying about the pain, the medications you need to take, your job because you've had so much time off sick, college work, relationships, the future.. The only person who can truly see through my painted smile is my mother, the amazing brilliant mother who I'd be lost without. There's no point in even trying to hide it from her because each time it'll result in "no you're not fine.." But what I've learned from that is sometimes it's ok not to be fine. Your not weak in admitting it. Your actually stronger than you think. Admitting that you need help or just someone to talk to. It works. On the other hand, the only person that can have me doubled up in laughter and always brings a smile to my face is my brilliant brother. One look from him with his big grin, one word and he'll have me smiling. Sometimes laughing so much I need to walk out of the room away from him, because i'll have tears of laughter rolling down my face, not sadness. Which is so badly needed on a down day. I'll be forever grateful.

One thing I have found on '@my_endo_diary' Twitter account is that it's amazing how honest you can be about how you're feeling, with no judgement from others, because at some point they have all felt the same. You can scream if you like, cry while typing messages, tears can fall onto your laptops, you tell the world how annoyed you're feeling. No smiles are neccesary. But when you laugh, you can laugh together, share experiences and get things off your chests. Which I have found does result in a smile in the end. Knowing that others understand exactly how you are feeling somehow makes you feel slightly less mad, and happy that you are not alone. 

You see the power of a smile works both ways. It can cover your emotions but can also bring happiness to others. One smile to others can change their day. Even if it's a stranger. If a person is having a really bad day, a stranger passes them in the street and smiles. It's contagious, you automatically smile back. One smile can totally change a person's outlook on that day, even their week. Especially with the amount of down days I know myself and others with endometriosis can get.. A little bit of warmth can go a long way, the power of a smile can do wonders...x

Friday, 25 March 2011

Doctor Who, Endometriosis What?

How many doctors have I seen and received totally different advice from? In the last year alone, at least six. Whether all that information was correct, I beg to differ. It seems that during my time coming to terms with having endometriosis I have done so much research on it I actually believe I know more on it than most of the doctors I have seen. Why haven’t the doctors done this type of research? I mean this is their jobs right? Yet I find most of my time repeating my symptoms over and over again, trying to explain myself and convince them its not 'normal'. When I first felt something wasn’t quite right, with reluctance I went to my doctors and explained my symptoms of pains in my stomach. Sometime short, sharp stabbing horrendous pains, others dull aches or a twisting feeling inside, tiredness, emotional.. She dismissed me. Told me to keep an eye on it and come back if it gets worse. Gee thanks, great help that doc! Being naive as i was at that time, that’s what I did. Four months later the pain was unbearable and my stomach was so swollen i looked five months pregnant, periods were all over the place and i had become an emotional wreck. This time i didn’t want to go to the doctors at all. Just to be fobbed off again? No thanks. What was the point? But I did after being forced to by my mother (it's her job I've been told).. Well, Doctor number 2 actually believed me..major relief! But then swabs done, internal examinations done (one of the most horrid things I’ve experienced!) blood tests. All clear. At that point I was more worried than the start. Back to square one. If it wasnt something simple then surely it had to be something bigger? But no one could tell me what. Doctor number 3 advised me I only had IBS. To change my diet, more fibre needed and I 'just had to put up with it'. Back and forth so many times after that I've lost count. I knew it wasn't just IBS. Then polycystic ovaries was mentioned. But not confirmed. Finally sent for a scan by doctor number 4. Yay, getting somewhere! Results = Clear.. Aaarghh! I started learning here that whatever it was I had, it wasn't going to be an easy ride and it certainly didn't play by the books. No sticking to rules, it was going to do what it wanted.

After countless visits the word endometriosis was mentioned. Endo what? I couldn’t even pronounce it let alone understand what this would mean. After my laparoscopy it was confirmed. I didn’t know quite how I felt at this point. Relieved. Relieved to know I wasn’t going mad, it wasn’t all in my head and now it had a name. Scared. Scared that it was a disease that has no cure. How was I going to cope? How would it change my life? I guess those are things I’m still working through. But now I have a diagnosis at least things would be easier with my doctors now right? Wrong! Hospital told me to take co-codamol for the pain. Doctor then tells me to stop because they are causing the cramps I’m having and should just take paracetamol when needed. When needed?! All the time mate! Tried to explain paracetamol doesn't touch the pain..doctors response "ah right, well.." and that was it! So I did what they said. Still had cramps. Next doctor told me that was wrong and to keep taking co-codamol because it will help with cramps. Round and round in circles. This week was yet another visit to the doctors to see yet another doctor. With advice from my lovely twitter friends, I went in all guns-a-blazing. Backed up with my symptom list, diary and of course the mother! Changed my medications again but this time to things I had researched myself. I really cant understand why the doctors keep providing such inconsistent, sometimes way off and wrong information. So many misdiagnosis by doctors when all the symptoms are staring them right in the face! Told over and over again but they are never linked! Surely with other illnesses, patients don’t have to research it all for themselves then take it to the doctors to explain it to them?! No wonder there is such a lack of awareness regarding endometriosis out there. If the doctors themselves do not fully understand it or how to treat the pain once it is diagnosed, what chance do we have? This is just my experience and I’m sure there are GP's out there that are very helpful with endometriosis cases, but unfortunately for me I’ve only ever met one.

So, its a start of a new journey for me, dealing with endometriosis. Living with it, coping. Or at least trying to. But as I go through this new chapter I am going to try and do everything I can to raise more awareness. I want people to learn that 'Endo What??!' is actually ENDOMETRIOSIS. Learn how to pronounce it (end-oh-meet-ree-o-sis!) and most importantly what it is. A horrible disease that one in ten women suffer from. The second biggest disease that affects women. And that it's not just bad periods. The symptoms we experience are not 'normal'. We shouldn't have to put up with it . All these Doctor Who's need to listen. Need to research. Need to believe. We are the ones who know our own bodies and if something isn't quite right, we know. Hopefully with more awareness raised, everyone will benefit from it. Whether we are sufferers, doctors or families of those who suffer. So, here it goes, wish me luck!