Sunday, 25 November 2012

Evolution

Image courtesy of http://blog.glennz.com/evolution/
Today's post is about how my goals have evolved over the period of time I've been living with endometriosis and it's really got me thinking about what my goals have been since my diagnosis in 2005.

Up until this year I can't really say that I've had any goals - apart from being able to have children. That's always been there, at the forefront of my mind, niggling away at me. But I've always just settled with the conclusion that I wouldn't know how that goes until I start trying. Apart from that, it's always been a take-one-day-at-a-time-and-see-what-happens kind of goal... Lets see how this treatment goes... Let's see if the Prof. can suggest anything else to try... Lets see if I will be having surgery again... Let's see... Blah, blah, blah!

But this year that all changed when my endometriosis flared up in February. My initial goal was to get the pain to stop. Then get back to work. I never imagined at that point that I would have to take a year out of the job that I'd worked so hard for... The job that later made me redundant! Above everything else this year, besides maybe winning a fortune on the lottery, my goal has been to get better.

It's been a really difficult time. Some days I've felt pretty good and sometimes gone without any tablets (that's happened on about 2 whole days this year!), but then, boom! The pain is back and I can't do anything again. It's difficult having to live your life like that, not knowing what's going to happen, just waiting to see how things go and taking one day at a time.

Since finding out my date for surgery, I've been setting goals to get to that will take me up to the operation. Little things like concerts or our break in London, Christmas time and New Year.

The big goal is my operation in January and as yet I haven't really looked past this. I don't know what's going to happen after my surgery. I'm praying it works and I'll be pain free - I know what happened last time with this surgery but I am trying to be positive and hold that hope tight. This is going to be it, the surgery that will change everything. I'll be back at work as soon as I can and then me and the boy can get out little house and properly start our lives together.

It's keeping me going - that hope. But I won't know if it all pans out until January.

S.
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Saturday, 24 November 2012

No limits

Image courtesy of http://livingwithra-nan.blogspot.co.uk/2011/06/spoon-theory-and-ra.html
Today I want to write about what I would do if I had an unlimited amount of time or funds or spoons in a day - what would I do with those 24 hours?

Well, I'm going to keep this post very short and sweet because it's simple. It's exactly what I have planned for when I've had my operation and I'm better...

I'm going to go shopping in the daytime and then go out for a lovely meal and a night full of cocktails and dancing with my friends and Danny.

It's nothing fancy or overly expensive but I absolutely cannot wait until that day.

S.
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Teaching doctors about endometriosis

Image courtesy of http://members.theunsignedguide.com/news/1801
I must apologise for being a little slow on the posts this week. I'm just having a complete mental blockage and just can't get the words flowing like usual! Even the posts I have managed to do don't seem up to my normal standard... Hopefully I'll snap back in to it soon because it's difficult to write everyday when you can't think.

Today I want to write about something that our doctors have taught us or something we have taught a doctor. Now, I can't say there has ever been a time when I've specifically taught a doctor something about my endometriosis, but it's more the response you get when you ask or suggest something. A blank expression and a "no, that's nothing to do with your endometriosis".

Since my initial diagnosis, it's become more and more shocking how little doctors actually know about the disease. I almost feel like I need to tell them exactly what endometriosis is sometimes.

I remember one time, a while after I'd been diagnosed, I went to the doctor because I experiencing really bad shoulder pain every month around the time of my period. I didn't know what it was, but I did know it played up when I was bleeding so I asked the doctor if it had anything to do with my endometriosis. He almost laughed at me - seriously. I mentioned it to my specialist when I next saw him and he told me that yes, it is due to my endometriosis. Shoulder pain is an indication that you have endometriosis on your diaphragm - which was confirmed in my latest laparoscopy this year. If I had listened to my doctor then I would never have mentioned it again.

At this stage, I'm now quite used to it and quite clued up on endometriosis and my options with it, but if you're not in the same position as me then you might not get the information you need because the doctors are not offering it. What then!?

Have any of you ever had any experiences with this same thing?

S.
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Thursday, 22 November 2012

Thank you

Image courtesy of https://www.instagram.com/sleepy_king/
I made the connection late last night that today is Thanksgiving in the USA so this is quite a relevant post - a thanks post! But before I start, I would just like to wish those of you from the USA a very happy Thanksgiving!

As you all know, this year has been an extremely challenging and difficult year for me... But, I'm going to keep this simple, after all, I'm not blummin' Gwyneth Paltrow!

I am thankful that I have Danny in my life. He has held me up when I've been crumbling, has been my rock through the toughest of times and has stood by me no matter what I've thrown at him. He is the shining star in my darkness and I love him more than anyone could ever know. We are each others future and I'm no longer alone in this. We will share our journey together and I know he will be there always always, bringing me the hope my heart lacks.

I am thankful for my pussycat Daisy. It sounds really daft to be thankful for an animal, but Daisy Bella means the world to me. She came to me in the most traumatic of circumstances but I like to think that Bunty knew that I needed her. She keeps me company everyday and is always by my side. Her and Danny are my own little family and I love her so much.

I am thankful for my family - my own family and Danny's family. They have all helped and supported me this year whenever I have needed it. I am especially grateful for my mama. She's done everything for me even when she has been going through an absolutely horrific time herself. I've learnt that family are the most important thing to me - the ones that are always there for you regardless and after all my family has been through this year, it makes you realise how much they really do mean.

Even though she comes under the same label, I am so thankful for my someday sister-in-law. Thankful for her weekly visits, for her daily texts, for keeping me up to date on the gossip and accompanying me on shopping days - in a carer style! - and for most of all just being my friend when I've needed a friend. I am thankful that she is my family so I'll have her around forever.

I am thankful for the friends who have stood by me this year, who have contacted me, visited me, kept me in the loop. I'm also thankful to all the 'friends' that haven't been there for me because at least now I can stop wasting so much time and effort on them. My mama always said, you'll learn who your true friends are when you need them the most, and I most certainly have.

I'm thankful for all the support I have found online. For my endosisters, who know exactly what I'm going through, for all of you who read and follow the blog, for all of you who take the time to notice me. I am thankful for having found an outlet in EMLWY.

Finally, I'm thankful that I have a roof over my head, that 2013 isn't far away, for my painkillers, internet connection and Netflix, thankful that I am safe here and that I wake up every day with a breath of fresh air in my lungs.

It's some times difficult to remember all the things we have when you feel like you have nothing.

I may not have my health, but I am very lucky to have everything else.

S.
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After leaving the confines of my room


I've been poorly the last few days with a tummy bug. I must have picked it up when I left the confines and safety of my house for a few hours on Sunday but I've been feeling really bad ever since with an upset tum and the worst headache you can imagine.

I've just spent the last few days in bed with Netflix, watching endless films and drinking water. I haven't even been able to eat properly.

I'm feeling a lot better today but my headache is still there. I've had it for weeks now and it will not budge!

I haven't got much planned for the next few days. I'm having to take it easy really because of this hip pain and headache and all my other aches and pains and exhaustion etc etc etc! I'm off to the doctors tomorrow to discuss a few things and then me and Danny are going out for dinner with my mama and her partner. I'm really looking forward to getting out for a few hours. On Friday I'm hoping to get in to town for a wander as Danny is going in to have a tattoo finished. I'll have to see how I feel though because I think tomorrow night may do me in! Then I have a quiet weekend planned round Danny's house. I'm missing our friends birthday night out on Saturday because of how I'm feeling so I'm spending the evening snuggled up in bed with my someday sister-in-law and a cup of tea... So eventful!

Thank you to all of you who have replied to my last post, it's really good to get advice from other ladies in the same position!

Anyway, anyway, anyway, I'm tired and it's very late and I want nothing more right now than to climb in to bed so goodnight all. Hopefully I'll have something more thrilling than lying in bed to talk about next time!

S.
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Monday, 19 November 2012

Back at'cha, sister


For today's post, I'm calling on all my endo sisters for a little advice. I usually just blurt out any questions I have on Twitter or Facebook, but recently I've stockpiled a few for this post. If you have experience with any of my questions below, please leave an answer in the comments section. I'd love to hear from you all!

:: For those of you with endometriosis on your bladder, do you have any problems with wetting yourself?

:: For those of you with endometriosis on your diaphragm, has your specialist ever told you they wouldn't remove it because it was too close to your heart?

:: Has anyone got endometriosis higher than their diaphragm?... How was this diagnosed and what symptoms did you have?

:: Have any of you got conditions other than endometriosis, that have shown up since diagnosis? I'm particularly interested in hearing from anyone with chronic fatigue as I'm showing all the symptoms of it and I know it's more prevalent in women with endometriosis.

:: Have you found any alternative medicines or products that have had a positive effect on your endometriosis?

:: Have any of you found a special diet has helped your pain and symptoms?

:: Have any of you found cutting dairy, wheat and/or gluten from your diets has actually helped?

:: Have any of you used a TENS machine for your pain - has it helped at all?

:: For those of you trying to conceive or those of you who have been lucky enough to have a baby, do you have any tips or things to try? Have you had to try IUI or IVF treatments? How long did you try for before starting IUI/IVF? How long did it take you to finally conceive? Did pregnancy reduce your pain during or afterwards regarding your endometriosis?

:: Do any of you regularly exercise? What do you find to be the most effective exercise types ie. yoga, pilates, running, swimming etc for your endometriosis? Have any of you needed to go through a type of rehabilitation plan for getting back in to exercise after a long period of sickness or an operation?
Thanks in advance ladies.

S.
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Sunday, 18 November 2012

A simple change to healthcare

Image courtesy of http://englishrussia.com/2012/04/19/abandoned-maternity-hospital/
For today's post I wanted to talk about where the NHS could make changes based upon my own experiences of being in hospital, and I thought I'd have a long list of things to discuss. But, actually, the more I thought about it, the more it just came down to the one thing.

I've spoken about my experiences of being in hospital before, so I won't go in to too much detail again.

My first laparoscopy was a quick outpatient procedure so I was only in for the day. The staff were excellent, made you feel very comfortable and made sure you had everything you needed.

For my next surgery, which was my laser surgery and adesiology to remove endometriosis from my ovaries and Douglas pouch, I was operated on at a different hospital and I had a terrible experience. Like I mentioned, I've written about it before so I won't rehash everything again, lets just say that it winds me up thinking about it. When you are feeling at your very worst, especially after a major surgery, you want to be looked after - be given adequate pain relief, some food, a change of bedding since it was covered in blood and a little help to get to the toilet. But nope, I didn't get any of that - 3 days, I was in there and it was horrible.

My last surgery in May this year, my second laparoscopy, was at a different hospital again, and luckily my future surgeries will also be here. The nurses were absolutely fantastic from the moment I arrived until the moment I left and that's the only thing I'm seeing as any comfort for when I have to go back in to hospital in January (I'm trying not to think about my operation because it scares me!). At least I'll be in good hands with people who care about their patients and obviously about their work.

And that's what it all comes down to. I know nurses are underpaid and over worked and short staffed, but when it comes down to it, they have a responsibility to care for those people in their wards and make them feel comfortable - and at least do the basics of their job. I know everyone has their bad days and that most people don't enjoy their jobs, but the patients need to just be given a little more care and attention. A smile. Anything. The hospital I went in to this year is about 10 minutes up the road from the last hospital and the difference in quality of care was unbelievable. They offered me things to relieve the pain, gave me cups of tea and food, helped me get to the toilet and helped me get dressed. They talked to me. They checked on patients regularly and you never saw them having a gossip down the hall way when you needed something.

All I want, is some care from the people who are meant to be giving it to me and other patients. That isn't too much to ask for - surely?

S.
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Saturday, 17 November 2012

(Sort of) a post free day


I've been pretty busy this evening and with not feeling good it's left me feeling more than a little whacked!

I mentioned in my last personal post that I was having problems with my period. Well, on Thursday it finally made a proper appearance, and boy, did it make up for lost time! It was ridiculously heavy but then it decided to stop again yesterday evening and since then I've been back to nothing. I did my second pregnancy test before my period started up properly on Thursday and it was another negative so I think it's just being a pain in the bum! My tummy is so swollen up it feels like it could burst at any moment!... And it's not just the fact that it's huge, it's hard as well and pulling any clothes over it hurts. I've been on my full amounts of tablets since yesterday though (Tramadol, Paracetamol, Ibuprofen and half a dose of Nefopam) and they are really helping with the pain.

I've just been taking it easy the last few days and I've mainly been sat in bed watching films all day, everyday, this week. I spent Tuesday at my mama's house which was much needed because she always looks after me! We've got a lot of problems going on within the family at the moment which is really taking it's toll on all of us so it's nice when we can all pull together and support each other.

Yesterday, after dosing up on all my tablets and sticking a heat pad to my clothes, me and Danny ventured in to town for an hour or so just for a quick wander around the shops. We got a free Elf DVD from HMV with an O2 Priority Moments voucher which was nice and I made the rounds in one of my favourite charity shops and managed to pick up some vintage finds - a beautiful blouse and a leather handbag!

I gave up dairy again this week. I had been a little more easy going on the diet for a few weeks, having a little bit of cheese here and there if I wanted it but I didn't feel very healthy being back on it - actually I just felt like a big fat lazy bum! - so I've come off it again. It doesn't have any effect on my endometriosis but I do feel better already. It's quite nice to be able to find healthier, lower fat versions of foods I'd usually eat or try new things. Tonight I made a dairy free dinner for my dad and Danny and we all enjoyed it. I might post a photo on my Instagram... Maybe. We are just sat down now with some snacks and movies. We watched Men in Black 3 earlier and now we are on to Chernobyl Diaries - which is thoroughly scaring the life out of me!

Tomorrow, if my tum allows it, me and Danny are hitting a car boot (since we haven't been to one in months now) and then going to visit Bunty's grave as it's her birthday on Monday.

Anyway, I hope you are all having a good weekend!

S.
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Friday, 16 November 2012

Pictures to inspire


Image courtesy of http://frecklesandivory.tumblr.com/post/15347503454
For today's post I've decided to share some art that has been inspired by endometriosis. Most of these images have been created by women living with endometriosis but some can simply be linked to the disease through your own interpretations.

Jodie, the lady behind the Facebook and Twitter pages for Endometriosis Awareness Through Art, kindly let me use some of the images she has gathered to show here... Thank you Jodie and thank you to the artists themselves for sharing and creating their work.


Image courtesy of http://belindaotas.com/?p=8268
Adelaide Damoah is a British artist and Writer who suffers from endometriosis. She uses her artwork to raise awareness of endometriosis. You can view more of Adelaide's work on her website.


Image courtesy of http://kayesedgwick.blogspot.com.au/
Created by Kaye Sedgwick who has recently set up the Roses of Endometriosis project which is working to raise awareness of endometriosis. Kaye, a UK based designer, was diagnosed with endometriosis 3 years ago and has since worked tirelessly to raise the profile of the disease alongside Endometriosis UK and The Endometriosis She Trust UK. You can read more about Kaye over at her site.


Image courtesy of http://www.painexhibit.com/ag301_Tupper
Created by Helen Tupper who states: "This represents how a muscle spasm feels. It is a hot fiery ball of pulsating pain which is wrapped up in barbed wires. It is very difficult to break the ball up. The wire bands feel like barbed wires so that when I try to exercise or work on the spasms, the tight bands become tighter and sharper. Pain is trying to win again by putting the tight bands around each spasm."


Image courtesy of http://www.painexhibit.com/ag401_Yolland
Created by Cynthia Yolland who states: "This is an expression of the two worlds that is pain, especially in hidden syndromes and chronic pain. There is the outer world that is normal. "You look wonderful", then the turmoil that is going on inside. I wanted to take the pain out of the hidden box and shake it, then show it to my doctors, and my family and friends. In fact, a copy of this picture is part of my medical records."


Images courtesy of http://abigaildoan.blogspot.co.uk/
These fibre art pieces were created by Abigail Doan and later pinned on Pinterest where someone commented to say that it reminded them of the adhesions that endometriosis causes.


Image courtesy of https://www.facebook.com/urbanidealist#!/photo.php?fbid=477427212280534&set=pb.160877737268818.-2207520000.1353022901&type=3&theater
Created by Urban Idealist Art and Design, this piece is called the "Story of my Pain" and illustrates the artists now nearly daily struggle with endometriosis.


Image courtesy of http://www.photoaccess.org.au/files/Period%20Piece%20catalogue.pdf
From a series created by Margaret Kalms entitled "Period Piece", an exhibition that shows the many aspects of menstruation, in particular the pain and indignity experienced by women. You can view more of the exhibition here which included photos depicting endometriosis.


Image courtesy of https://www.facebook.com/slh.emlwy/favorites#!/photo.php?fbid=437661756290122&set=pb.436188259770805.-2207520000.1353022643&type=3&theater
These paintings were shared by Tina McCurdy on the Endometriosis Awareness Through Art Facebook page. They were created years before her diagnosis, but the turmoil that this disease can cause is evident in both pieces.


"Layers" and "Injustice" images courtesy of http://innovativesupportforwomen.wordpress.com/endometriosis-online-arts-project/595-2/

From an Online Arts Project, created by Tricia, a Creative Arts Therapist, who has also experienced life with endometriosis. These particular pieces were created by "Betty" and you can read her story of living with endometriosis and view more of her art work here.


Image courtesy of https://www.facebook.com/slh.emlwy/favorites#!/photo.php?fbid=437373749652256&set=pb.436188259770805.-2207520000.1353022643&type=3&theater
This is a piece created by Kelli Rossetti - still in progress, but very simple and effective.


Image courtesy of https://www.facebook.com/slh.emlwy/favorites#!/photo.php?fbid=436980866358211&set=pb.436188259770805.-2207520000.1353022643&type=3&theater
This is a mixed media piece created by Megan Wilson.


Image courtesy of http://amandaspatch.com/
Created by Nicole and shared on Amanda's website, a lady living with endometriosis. Amanda also has a YouTube channel for raising more awareness.


I hope you all enjoyed this post. I think it's lovely to see some of the creativity that comes out of this disease - finally a positive!

Do any of you ladies have creative outlets to distract you from the pain and distress endometriosis can cause?

S.
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Thursday, 15 November 2012

Travelling with endometriosis

Image courtesy of http://www.thefreedomexperiment.com/
I've never really had to plan holidays or any travels with regard to my endometriosis before this year. It was always just one of those things that would get in the way. I'd look forward to something, finally being able to get away for a much needed holiday, or even a day out shopping and without a doubt my period would show up and along with that, the incessant pain.

Things this year have been a little different since my pain has upped it's game and has left me not able to do much at all. We have managed to get out for a few day trips and little breaks away but a big summer holiday abroad was out of the question this year - partly down to money but mostly down to the pain I've been in and if something happened with my health while I was away.

Anytime we have wanted to plan anything, we have had to plan around me and my period. Usually, I can somewhat cope with the pain and discomfort. But the week of my period is a complete no go. Most of the time I can't even really plan anything in advance because it comes down to how I'm feeling on the day.

For today's post I thought I'd share a few tips for travelling when you have endometriosis...

1. If you are planning anything you need to know when your period is due. I try and make plans for the weeks around my period because I know that I won't be able to do much when it arrives. This may not be always possible but if you know when it's due you can at least prepare for what's to come.

2. Remember your medication! I cannot stress this enough! I actually get a little panicked now if I leave the house without my meds because I'm in a mess without them. Make sure that your prescription is renewed in time to cover your needs and that when you leave the house you have enough tablets on you to not only cover the times that you need them but enough to cover you in case you are out longer than expected.

3. Pack comfortable clothing for the days where you feel bloated and don't want anything pressing on your tummy. Also make sure you are wearing comfortable clothing for when you're travelling.

4. Relax as much as possible. If I know I have something coming up, a day out shopping or a night out, whatever it may be, I make sure I leave time to rest and re-energise before and after. It's not always possible to do this but try and make the time. Sit down while you are out and take things slowly. If I don't rest, then it catches up on me and can put me out for days. Remember to pack a book or take your iPod too, these are all things that can help you kick back, especially if you have had a stressful day.

5. Plan your days according to how you feel. We try and alternate our plans so that one day we'll do something a little more energetic than the next day so that on that day I can recuperate a little and be ready to do something a bit more energetic again the next day. You need to be able to find a balance between the activity time and relaxation time.

6. Communicate to the people you are travelling with. It can be difficult when friends or family want to do something that you don't feel your body can take. But explain to them and hopefully you might be able to find a happy medium. But, remember, whether it be on a holiday or a day out, that it's their time out too.

7. Finally, remember to enjoy yourself! This is time taken away from your pain and misery, time to do something fun, relax and chill out. Find the goodness in the situation, even if you can't do anything energetic, sitting down in a cafe with a hot tea can be just as nice.

I hope these few things help you when you next have a day out or a break away... Do you have any tips for travelling?

S.
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Wednesday, 14 November 2012

Dealing with negative feedback

Image courtesy of http://pinterest.com/pin/142356038192720103/

Unfortunately, we can often be the butt of negativity. With people not understanding our chronic pain or infertility issues, we can be a misunderstood target for abuse. But it's not just us endo sisters or spoonies that have to deal with negativity - any and everyone can be faced with it at one time or another. It can appear amongst our friendship circles, in the work place or for no reason at all, online or even out in public.

If you've ever dealt with someone being negative towards you then you know it can make you feel really blue. It can show itself in all forms, from someone saying something nasty to your face, behind your back or sometimes you can think that person is being nice to you, when actually the meaning behind their words or actions is not so nice.

It could also be that the person in question has a pessimistic outlook on life and so they throw their negativity in to everything they say and do. In that instance, it can be very draining indeed to be around someone like this, because even when you are trying to pick yourself up you can be pulled back down by them.

Just try to remember that while people can try and bring you down, you have a choice in how you react to them.

I want to try and focus today's post on dealing with that negative feedback given to you by someone, and not so much negative people in general. Whether it be face to face or online, at work or with friends. I want to try and make you see that things aren't necessarily your fault and to learn to let it go.

The biggest piece of advice I can give is to not engage in the negativity. If someone has said something nasty to you or something that has upset you or made you feel uncomfortable, then go with it and try to get it out of your head. Quite often people can be out for an argument and say negative things just to get someones back up and get a reaction out of them. Sometimes it can come down to jealousy, that you're getting more attention and the person may not like this so they will try and put you down. Online, for instance, this is a key piece of advice, do not bite back. There has been a recent rise in 'trolling' so report the person if necessary, but do not engage in a conversation about it. If someone is simply questioning or commenting on something you have done, then reply, try to make that person understand why you have said or done something the way you have. Many times, someone will be negative because they have no idea about what you are talking about but explaining it to them can make them see what you mean. Sometimes it can even catch a person off guard if you are nice to them - even when they have said something upsetting.

Try and understand the underlying message in someones words and ensure that you yourself haven't misconstrued what they are trying to say. Everyone is entitled to their opinions so you must recognise this and see if there is anything you can take from their words in a positive manner. Maybe there is something you can learn from their words. Sometimes people can be misunderstood because of the language they have used or maybe their lack of tact. Take their criticisms as a source of honest feedback - honesty can never be looked down upon.

Don't ask peoples opinions if you can't handle the truth. Would you rather someone be honest and say something you maybe don't want to hear or would you rather someone be fake and say something nice even if they don't mean it? I know which option I'd prefer - honesty above anything else.

If someone is being plain nasty about you though and not so much something you have said or done, then remember that this person is a negative person. They will believe what they are saying to be true because there is a deep rooted problem within themselves. Maybe they lack confidence or self belief. Most of the times, their criticisms reflect more about themselves than about you. Usually these types of people react this same way to others so do not take it personally.

But, as much as their criticisms can reflect on them, it also reflects on you as to how you react. Why does something bother you? Why does this comment make you feel uncomfortable? It could be because you hold a similar belief yourself or because of something that has happened in the past. Asking yourself these questions may put you at ease and maybe even allow you to gain closure on your discomfort with it being you that needs to change rather than someone else.

And finally, I mentioned reporting people online, but in the real world, if you cannot take what a person is saying, then stay clear of that person. Reduce contact and limit conversations because if communicating with someone is causing you distress, then it's not worth it.

S.
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Tuesday, 13 November 2012

Let's talk about sex, baby

Image courtesy of http://thecollegianur.com/2009/09/03/lets-talk-about-sex-baby/8789/

Today I want to talk about sex.

I definitely don't find it difficult to talk about sex but writing about it is another thing. I've been wondering from what angle to approach the subject for days!

Now, to some, sex isn't a taboo subject but when it comes to linking something to this disease I can't think of anything else more taboo. I mean, I don't really leave much else to the imagination on this blog! But I've only briefly spoken about sex before and it's something that isn't really spoken about too often when it comes to endometriosis. I've seen it discussed in terms of it being painful but I want to try and get down to the nitty gritty a little more.

Painful sex is just another thing us ladies with endometriosis have to deal with - unfortunately. But, sometimes, it can be one of the first indicators that something is wrong with your body. It was for me anyway.

I lost my virginity when I was 17 and so I knew what felt 'right'. I didn't have any problems for a good few years. On the odd occasion I would bleed during sex but I never thought this was anything to be worried about. The only real problems I had were thrush and cystitis which I would get repeatedly but I always put this down to the fact that I was out on the town, clubbing and drinking, like a normal teenage girl, every weekend - and weekday night if I could! I put it all down to an unhealthy lifestyle. I always used a condom and I was on the pill on and off from when I was 15 and then full time from when I was 17.

The first time sex became painful was when I was 21. I first thought it was the position we were in but changing position didn't take the pain away so I thought I must just be a bit sensitive inside - sometimes, at different times of the month, I find I am more sensitive than at other times of the month. But things didn't change and that's what eventually led me to the doctors and, later on, to discovering that I had this wretched disease.

So, is this the same for everyone? Will every woman feel pain during sex? Well, no, is the simple answer. Endometriosis occurs differently in every woman and can be discovered under a whole range of circumstances. Not every woman will feel pain during sex (the lucky few!) - you can see here on the 'back to basics' series that not all women suffer the same symptoms.

But, for us unlucky souls that have to bear the brunt of painful sex, what can we do about it? I think in one way I'm extremely lucky because I'm in a loving relationship and Danny understands exactly what I go through. But I've been single too since I've been diagnosed and it is hard. Sometimes you want to enjoy yourself and have some fun, but then there is the pain. And the fear of the pain too. I've been having sex before when it's suddenly become painful and when you're in that situation with someone new that you haven't told about your condition, what do you do? I always gritted my teeth and got on with it or changed position quickly, but, I have to admit, being single with this disease is hard work and sometimes a real embarrassment. The only piece of advice I can give to you single ladies is to do what feels right for you and the situation. If the person you are with cares about you then they should try and make you comfortable anyway and if it's not that type of sex, then just try and work with what you've got.

There are ways around painful sex. The key to a successful sexual relationship (no matter the sex of your partner) first of all is communication. You have to be able to talk to your partner. Tell them when it hurts, what feels good, what doesn't feel so good. Guide your partner around your body. You'll discover what works well for you both position wise but I find the positions where I am in control are the ones which hurt less. Anything where you're on all fours or on your back is usually a bad idea when you're already in pain because it means your partner can penetrate you deeper (which sometimes is a bad thing!). If you are still in too much pain but in the mood, then try experimenting with non-penetrative methods. Oral sex can be just as good as penetrative sex, if not better.

Very often, amongst the haze of hot flushes and emotional breakdowns, we may not feel like being close to our partners. But don't push them away without explaining. Danny is always hugely understanding when I actually talk to him but it's when I don't that things can becomes a little stifled. But it is normal to not feel in the mood. Don't think there is something wrong with you if you just don't feel like it. It's surprising just how much those tiny little hormones control us.

I guess I have to wrap up some where... The most important point to come out of this post is that painful sex isn't normal, so please, if you experience any pain, see your doctor and push for a reason behind it. It may not be endometriosis but wouldn't you rather have enjoyable painfree sex again rather than suffering in silence?

And for those of you who haven't had sex yet, please, don't be scared by this post. Sex can be scary enough without thinking about the complexities of positions and pain.

So, what do you ladies think? Or maybe your partner has endometriosis... What do you find works for you? Do you find sex a problem or do you not have any problems at all? Please feel free to comment below because I'd like to see other people thoughts on this.

S.
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Monday, 12 November 2012

Periodical confuzzlement


I mentioned the other day that my period had started, well, if you follow me on Twitter or Facebook, you may have seen that I'm a little confused by it.

Usually, ever since I had my coil removed up until this month, my period has been around 5-7 days early and has been heavy and painful from the word go. But this month, it started it on the day I was due, but, well, it's not really started. I've just had a little spotting.

My obvious thought was that I could be pregnant but I did a pregnancy test and it was negative. I will do another test in a few days if things do not change - just to be sure.

I'm also getting these odd pains on my left side still. They are really hard to describe but they aren't like my usual pains. It's all concentrated around my left hip/ovary area and feels like something is 'on it'. I can't lie on my left side at all as after a few minutes it aches and goes completely numb and walking is a real problem with it, especially going up and down stairs. I have all my tablets to take the pain away but I can still feel this pressure there.

If the pregnancy test had been positive I would have assumed I was having an ectopic pregnancy but it wasn't, so now I'm a little lost as to what is actually happening.

I did wonder if my antidepressants were effecting my period and having had a read online they can apparently have some effect - either by making your bleed heavier or lighter. But this doesn't explain my pain.

I haven't changed anything else recently other than having come off my Naproxen - which has now been replaced by Ibuprofen, which I think does actually feel like it works better, though, unlike Naproxen, I don't take it everyday. Due to my Citalopram (antidepressants) I can only take it when I feel I need an extra 'boost'.

So, does anyone have any clue what this could all be? Has anyone else ever had a similar experience?

I just don't understand it all - it's certainly not normal for my body!

S.
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Sunday, 11 November 2012

My favourite topic

Forever feels like home ♥

Today I want to talk about my favourite thing and I bet you could never, ever, in a million years guess what that is.... Yup, got it in one: Danny.

I met Danny through a mutual friend years ago and we used to go out on the town within a group of friends (as friends) every weekend. It wasn't until 2010 that we actually got together. I'm not sure how it eventually happened. I think I'd shown him some interest a few months prior and he said he was just waiting for the right time because I'd been going through a painful breakup with an ex. So, yeah, it just happened.

We've now been together two and a half years and he is the most wonderful man I have ever met. He understood me from the word go and no matter what I threw at him - no matter how many times I thought he would leave me because of how messed up things have been - he's stuck by me, giving me wise words and the love I need.

I did tell him pretty much from the outset about my endometriosis, but at that point, I'd only had my coil in for a short time so everything was going well still. It wasn't until I started having pains again last year that he started to see any effects of the disease. When I had my flare up in February I think it shocked him... Not that I would be surprised by that reaction - I did start screaming and writhing around the bed in pain at 4am!

Danny hadn't really had a chance to get himself accustomed to living with my endometriosis before it kicked in big time and you all know how it's been for me since that night. Danny, however, has been fantastic. He's stood by me at every step of the way: sitting up with me when I've been crying during the night; helping me around the house when I've not been able to move easily; driving me any and everywhere; talking and listening to me when I've needed support... I couldn't have asked for any more. I never thought anyone would be able to understand what I have to live with and still stick with me and yet, he does.

We have our future planned out and even though our relationship is still in it's relatively early days, I know he is my forever. I knew it from the moment I kissed him.

So, Daniel... Thank you. For all that you are and all that you continue to be. I would have fallen so many times had it not been for you being there to hold me up and show me those bright stars of hope. I cannot wait for our future to begin next year. I love you. Always, always.

S.
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Saturday, 10 November 2012

A little bit of personal time


I haven't written a personal post for a while so thought I'd just give you a quick catch up with what's been happening recently.

As per usual, I've not been up to too much. I mentioned previously that I'd been in a lot of pain and that's still there. It got so bad last weekend that I was all ready to go to the hospital with it. My aches and pains have been very strange recently - they haven't felt like my usual pains and so I've not been able to cope with them in the same ways as I would usually. My left hip is aching so badly all the time and it's affecting the way I walk and sleep. It feels like there is something on it all the time. Even now while I'm sat in a big comfy chair typing this, it's aching like mad. I've been on extra tablets and it's been controlling it but not really taking it away.

I wouldn't mind all these things so much if I could sleep properly but I can't get comfy in bed because of my hip so cannot sleep too long... Though I am so exhausted I feel I could sleep forever.

I managed to have a bit of a night out last Monday as me, Danny and some friends went to see Steel Panther live in Nottingham. It was a brilliant gig, absolutely hilarious, and it was great to be able to spend time with my friends again but I've definitely suffered for it this week. I'm stuck in tonight as Danny has gone out for our friends birthday - which I should have been going to also. But nope, endometriosis once again stands in my way.

I parted with the last of my spending money (before major savings start for Christmas) by getting some more of my body tattooed. I now have some beautiful roses on my foot and I love them. I know some would have quite a lot to say about me spending money on tattoos when I am on benefits, but I pay all my bills and like to enjoy the very little money I have left over.

My emotions are not quite as bad as usual but I am still very teary and tonight especially, I just feel like I want to go to sleep and never wake up again. I am so fed up. I have been waiting for my period to start and 2 hours before I was late, it starts... Thought we might have been thrown some luck finally. I knew I was wrong to build up any hope.

I've spent almost all day working on the blog now so I'm going to crawl in to bed with some chocolate and a film and await Danny's return... Night all.

S.
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Talking online about your health

Image courtesy of http://theeuropean-magazine.com/310-mong-attila/311-hungarys-media-law

Today's I want to talk about whether it is right or wrong to talk about your health on Facebook because this is something I have had to face over the past few years.

It may be different with other heath issues, but when you have something that no one knows about, you feel compelled to tell people (in some ways to justify what has been happening) and try and raise as much awareness about it as you can. I've never forced any information in peoples faces, just the odd thing here or there about how I've been feeling, but quite often I've seen people on there complaining about too much information in peoples status' and moaning about not wanting to read things like that.

When I started writing the blog properly, I began to realise that in some ways I didn't want to share this with my 'friends' on Facebook. I didn't want the judgement from them. So, instead, I started a Facebook 'fan page' where people could get updates on me and the blog - and if you don't 'like' the page then you don't have to see anything I post. I invited all of my 'friends' to the join the page, not hoping they would 'like' it but just to read the word endometriosis, but some, a meagre few, did like it and comment regularly. I now realise that these people are the ones who care about me and want to know what is going on in my life (don't get me started on a Facebook rant right now!).

I really think it's important to raise awareness of lesser known illnesses, and even for well known conditions, things are different for every person who has it so surely it's better to share information than to not talk at all?

I've come to the conclusion that some people are just far too ignorant to care. I used to think they were just sensitive and I was throwing it in there faces but no, now I know they just don't care.

I know it can be difficult to talk about the problems you are going through, especially if they are very personal issues, but just use your own common sense. Make sure the timing is right and if you want to say something, then say it. People out there need to know about real problems in this world not (just) about who should win X Factor or who has got a hangover. And I agree that Facebook is the same as any other social platform and should be a fun place as well as a level for more personal outbursts, but hey, if you were sat around a table with a bunch of friends, would they, your real friends, expect you to just give a constant barrage of jokes or would they want you to talk to them about real life things - like friends do?

S.
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Friday, 9 November 2012

Memories

Image courtesy of https://twitter.com/katie_hogg/status/266461356524453889/photo/1
I had planned to write about my experiences and memories of being in hospital for today's post, but then, one of the lovely ladies I talk to on Twitter posted this little picture and it made me think a lot about my past and my future.

For so long now, I've been longing for my past life. Being unable to work or see friends and still living at home because you have no money is a pretty rubbish way to live - at this age anyway. I want to be living it up and enjoying the last years of my youth before I hit the dreaded 3-0.

I've been looking at lots of photos recently which have made me remember back to nights out or being at concerts with friends. I feel like so much time has passed by since then. These times were so much fun, spent giggling with friends and dancing till all hours of the next day. Drinking as much as we could, listening to music and having fun. Gigs where we would rave away or rock out and then spend the next day not moving from hangovers. Even remembering back to times at work, admittedly spent being stressed out and never having enough time in the day, but being around people every day and working hard to climb that ladder.

I feel like I have grown up so much since these times. I am different. I look at the world from a different perspective now and certainly do not worry about the things I used to. Most days I would worry about work or something daft like what to wear at the weekend. But now it's the important things that matter. My health comes first and obviously my friends and family. Being in this situation buffers out the little things. I do worry about times to come but from this is making me look forward and forget the past.

The past is now a memory. I had some great times but I have many more great times to come.

S.
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Thursday, 8 November 2012

A letter to my endometriosis

Image courtesy of http://uponafold.com.au/blog/page/3/
Dearest endometriosis,

My closest and yet, most loathed acquaintance.

I have finally decided to face you. To talk to you and find out why... Why? Why? Why?... So many questions. I also write in a bid that you will indeed get the message and leave me alone forever, for you're not welcome here. I never invited you - you turned up out of no where, took me by surprise and took up residence in my uterus. I get no rent from you even though you seem to have spread your weight around and have now invaded my diaphragm. What about me? Do you not think about anyone but yourself? You are one selfish disease. You invade someones life and then laugh in the face of science and reason. You resist treatments and take decisions upon yourself.

Why did you choose me? I realise my uterus must feel like a nice, cosy abode to bed down in at the end of each hard working day, but seriously, why me? What makes my uterus different to the next woman in line? How do you decide where to invade? Why do you insist on making me so unhappy everyday and why, why, why do you make it so hard to have a tiny little baby to love and cherish forever?

I know it's your life and your job to create such chaos but you are a hateful, ugly thing that actually just needs destroying. You make my life hell. I hate you. I want you gone... Stop laughing at me! I'm being serious. No more fun and games now, you've had your time in there, and now is the time to leave.

You'll be out on a limb in the cold midst of winter while I recover from your incessant torture in the warmth of a safe hospital soon. Soon indeed. The time is coming.

I will overcome your power. I will no longer be in your harsh grasp.

Yours now but not forever.

S.
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Wednesday, 7 November 2012

Be mindful

Image courtesy of http://justafuckingteen.tumblr.com/
I find it very difficult most days to to stay positive and fight against my endometriosis and my depression. I don't even care if it makes me look or sound weak... When you have been in the situation I've been in then you will feel defeated. Some days, I'm happy to stay defeated. To let my loneliness, unhappiness and pain eat me up inside and to hide away from the world. But then, as much as I'd like to hide away forever, you simply cannot. Life gets in the way. You have to get on with things and see people and put on a pretence that everything is a-OK. But, having those days of having to see people and do things, makes you remember that you do have a life. Not everything is horrible. There are still people who care about you and things you can do - even if it's just something small.

Sometimes, when I get a moment of clarity and come out of my hole, I can see that it's just all in my head and that things will get better. I have to remind myself of this and keep telling myself that things won't always be like this - everything will get better once I've had my next surgery and I'll be able to get my life back to how it was before. But it's hard being able to find that centre, to be able to keep that positive head on. Sometimes I just cannot fight against it.

There are things that still make me happy though and stop me from sinking. Being around my family and friends, talking to people, being out and about - whether it be a day trip or shopping in town or just going on a little walk, music and books, dressing up and making myself pretty, even if I'm not going anywhere, and, finally, the blog, which helps to keep my brain ticking, keep me busy and a place to vent my frustrations.

But sometimes, the best thing to do is to just stop thinking. Be mindful of yourself. Stop struggling against the tidal wave of information and pressure and go with the flow. Remember to breath and find your inner peace. Find your centre of calm and relax. Focus on yourself and not the world around you. There is nothing else but you and your mind and you need to keep it free of clutter and not let the hardships of life strangle it.

Things happen in life that we cannot change, but things always have a way of working themselves out.

S.
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Monday, 5 November 2012

#listof3

Image courtesy of http://thedecor8.wordpress.com/
Today, I'm making a list of 3 things that I'm excited about. I've chosen this option as an aid to help me keep an eye on the goal and to remember that I'm not going to be spending every day stuck in my bedroom. I have got things to be excited about and good times are just around the corner...

1. Plans, plans, plans
I have a little list of things that are happening to use as goal posts to get me through to my surgery and to look forward to beyond then. I have tickets for several concerts and our little Christmas theatre trip to London on my birthday to keep me going this year and then next year, well I will have the whole world at my feet and I have so much to look forward to then. I'm also hoping we might be able to get away for a summer holiday somewhere hot and sunny. All things are achievable when you have your health... And money!

2. My operation and the prospect of getting my life back
I'm not excited for the actual operation in the slightest. In fact, quite the opposite! I've been worrying about it for weeks now and I still have to wait until January. But I'm so hopeful that this surgery will get me back on my feet and get me back to work and back to having a life again. I hate being in pain every single day, having to take copious amounts of drugs and sitting around not doing anything. 2013 will be a new year with lots of new beginnings because I will be better and everything can move on again. I will be better. I will.

3. Our house
I talk quite often about 'our house' but all it is is imaginary at this point. Me and Danny had planned to move in to our own little home in May time this year. We spent most of last year saving and buying things so we would be fully prepared. But then of course my endometriosis flared up and all our plans had to be put on hold until I was able to get back to work and bring in a monthly wage again. So for now, Danny's lovely Nanna is storing the bulk of our treasures in her spare room and we have filled cupboards in our own houses and every nook and cranny that's going free with things. But, at least we are prepared! The only thing we have to buy now when we move out is a wardrobe and a sofa! I am so excited about this though. I cannot wait to be able to wake up next to Danny every day though and have our little family (me, Danny and our Daisy Bella) together.

S.
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Sunday, 4 November 2012

Disclosure post

Image courtesy of http://www.suitupordie.com/
"Sharing our stories with others, gives our pain and suffering purpose. It offers hope to those who may not have any. It strengthens both them and us. Although we may be left with scars, the pain subsides and the wound closes. We grow stronger, our character builds and we become healthier than we have ever been before".

Today I'm going to talk disclosure. What I share, what I do not share, and how I decided to share things.

When I started EMLWY, my initial view on things was to share the bare minimum, and in my first 'real' posts, I told my story but glossed over the personal things. I didn't talk about my life with this disease, instead I spoke about the disease. Just the disease. It was only in July this year, after a long time away from the blog, that I took a real look at where I needed to take my writing and what I needed to actually talk about. I needed to get personal to make the blog work.

I know now that there are lots of endometriosis blog's around, which at that point I hadn't yet found, and some of them are brilliant. They give the information that women in my situation need to know - advances in research, new treatments and ideas to ease pain, dietary advice and stories from women across the globe. But sometimes, when you're experiencing a very embarrassing issue, you want someone to be going through the same thing also. To be able to read about it and know what to do to combat it. Sometimes you'd rather read about these issues than go and actually talk to someone in real life about them.

On EMLWY, I've talked about everything from sex, to self harm, to constipation, to showing my insides on surgery photos to talking about wetting myself. And yes, it's difficult to write. Very difficult. I have friends who read this and I openly 'advertise' EMLWY on social networks and I do think about everyone reading these intimate problems I'm having and judging me. But if you are not open and honest about what this disease entails, then what hope is there for raising awareness? As I said the other day, I'm long past being embarrassed about my problems. Danny hears me moaning daily about my vagina and ovaries and, although I haven't yet gone in to any detail, I quite happily would talk about these problems in full, explicit detail, if it would make one more person in the world understand what I have to live with daily and what other women worldwide will have to deal with for the rest of their lives.

However, as open as I am about my own life, I keep details of my family and friends at the minimum. A) for all the information I share on here, there are still things in my life that I wish to keep somewhat private, and I think anyone would understand that. That's also why I don't accept friend requests from people I haven't met in real life on my personal Facebook account. I don't want the whole world knowing every single detail of my life... Not that I put every detail of my life on my personal Facebook, but I think you have to be careful nowadays. And B) if I started talking about my friends and family in full detail then it wouldn't be fair on them either. I don't share many names and I never talk about where I am going until after I've been there - or sometimes, not at all. I think you have to remember your own personal safety and the safety of those around you before the online friendships you have with fellow endo-sisters etc.

To sum up, as in life, I am pretty open to any and everything. If there is something you want to know then ask and I shall tell. In general, nothing phases me. But I will always put safety before openness.

S.
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Saturday, 3 November 2012

A conversation with my doctor

Image courtesy of http://www.nhs.uk/NHSEngland/Healthcosts/Pages/PPC.aspx
One thing that I meant to include in my 'Shake, rattle and roll' post from my visit to the doctors on Tuesday was a discussion that we had concerning prescription prices.

I don't know how it works in America or anywhere else, but in the UK, the prescription prices have risen to a whopping £7.65. Now, since I am on a humongous amount of painkillers and now antidepressant's, the costs are really stacking up. They have been since February but with it now coming up to Christmas and me only being on ESA, I am beginning to struggle with it.

When I went to the doctors on Tuesday I had 3 prescriptions, then on top of this had to get more Paracetamol and Ibuprofen. In total it came to around £25.00 which is a lot of money when you have very limited funds.

When the doctor gave me these prescriptions I asked him if there was any help I could get with paying for them as all I could see on the internet previously was that you get free prescriptions if you are on Jobseekers (actively seeking work) but not if you are on Employment and Support Allowance (for long term sick) - which to me makes very little sense. Surely you should be able to get help when you most need it? A friend had told me that she had once been given an exemption certificate from the doctors which entitled her to 5 years worth of free prescriptions, but, when I mentioned this to the doctor he seemed completely dumbfounded. He said the only type of exemption certificate he knew about was for long term health problems such as diabetes or heart problems. Surely endometriosis falls under this same band? Nope, apparently not. His best advice was that I could purchase a prescription payment certificate (PPC) from the chemist where you buy up front and this saves you money.

:: A three monthly PPC is £29.10. This saves you money if you need four or more items in three months.
:: A 12 month certificate is £104.00 and saves money if 15 or more items are needed in 12 months.

I have just come across this website which shows all the details on UK prescription charges and how to get help with the costs and it states

You are also entitled to free prescriptions if you or your partner (including civil partners) are named on, or are entitled to, an NHS tax credit exemption certificate or a valid HC2 certificate (full help with health costs), or you receive either:

:: Income Support
:: Income-based Jobseeker’s Allowance
:: Income-related Employment and Support Allowance, or  
:: Pension Credit Guarantee Credit

It then states

To apply for an HC2 certificate, you should complete form HC1, which is available from Jobcentre Plus offices or most NHS hospitals. Your doctor, dentist or optician may be able to give you one, too.

So, after all the information I have previously read and been told by the doctor, it does indeed look like I can get some help.

I just felt so cheeky for asking and then for him to turn around and say that exemption certificates are only for long term health problems felt like a real kick in the teeth. Does having this disease from the age of 12 and possibly way past the menopause not qualify as long term, when someone that could have just been diagnosed with diabetes this year is?

Has anyone had any experience with this issue or been in the same position? Any advice would be hugely appreciated. I'm fed up of people looking at me like I'm scrounging when I have very little money and I'm struggling to afford the medication I need.

S.
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Friday, 2 November 2012

The weirdest thing about endometriosis


Image courtesy of http://pokec0re.tumblr.com/post/33462008545
I think the 'weirdest' thing about endometriosis is that no one knows about it. I think it's understandable for people to have questions over something even when it's as common as cancer, but to have not even heard about it, for it not be featured in magazine or news articles, for it not to have any place on TV or be part of lessons when growing up is very strange.

Endometriosis is now such a common condition that I think teenage girls should be told about this and other gynaecological conditions (such as PCOS for instance) when they are learning about menstruation. Girls at that young stage in their lives need to know what is right and wrong, they need to know that being doubled up in pain, laying on the bathroom floor in the foetal position and bleeding so heavily it's like a tap has been left on, is not normal.

I went to a Roman Catholic school so sex education and any discussions about what was happening with your body was extremely limited, to the point where we didn't have any lessons in it. I don't know if that is still the case at RC schools nowadays (I left school in 2000) but I do know from speaking to friends that other schools, non-religious schools, did have lessons in what to expect and 'normal' sex-ed lessons. This isn't a discussion for sex education right now, so I won't get in to that (since everyone has their own views on whether it is right or wrong for teenagers to learn this from their teachers and not under the guidance of their own parents), however, I do feel that it's vital that teenagers learn some basic lessons in what is right or wrong in what to expect from puberty - both boys and girls.

Yes, everyone is different, and at that young age you may not yet be dealing with any abnormalities, but I've spoken to girls who were in my year at school and have discovered, only now, that they were going through the exact same experiences as me, but we all just thought it was normal and carried on without speaking out and knowing any different.

Growing up, I thought it was normal to have ridiculously heavy and painful periods because my mother had the same problems... Whereas now it seems that she could have indeed had endometriosis also. That we will never know now, although recent research has pointed out that endometriosis does seem to be hereditary. But, had someone just uttered the simple sentence 'it's not normal' to me, then I would have investigated then. I started my periods when I was 12 years old and was diagnosed when I was 21 (although I only questioned my problems when sex became painful). But then, is everyone clear enough on knowing that sex shouldn't be painful? I knew it wasn't normal because I'd been sexually active for a few years and noticed a change when I was 20, but what if it's painful from the very first time. What if girls/women are to embarrassed to ask about what is right or wrong? What happens if they question someone else and they believe it to be normal also?

I think if you ask any woman who is dealing with endometriosis what their wish for the future is, it would be for a cure, so we can stop living a life of constant pain and upset. But second on the list, and probably even more important than an actual cure, is awareness.

If only one person had told me these things weren't normal, if only my parents had heard about this disease, if only the teenage magazines I read discussed menstruation in more detail, then I might have been able to tackle this problem from a younger age and hit it head on. Now, it's too late for that. The damage to my body is done.

That's why my ultimate goal now is make as many people aware of this condition, this disease, as possible. And if me and Danny are ever blessed enough to be able to have our own children, or whether we turn to adoption, either way, I will certainly make sure that my daughter (or son) knows what to expect. I can't imagine anything worse, after everything I've been through with this, than to think they are too embarrassed to talk about their issues or in the same way to think that everything is normal.

My final, parting words for today are simply to advise that if you are worried about anything with your health in general then to talk to someone about it. And please don't think that heavy painful periods are normal, or that sex should be painful. If you have younger sisters, daughters, nieces, grand daughters, please make sure they know. If we can start catching endometriosis at this optimal time then maybe, just maybe, we could increase the chances of beating it, or at the very least, teach one more person in the world that endometriosis is real, it does exist and it's not just in our heads.

S.
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Thursday, 1 November 2012

Why I write about my health

Image courtesy of http://chibird.tumblr.com/
I'm not actually sure I've ever fully talked about my decisions behind starting this blog.

The reason is quite simple really: endometriosis needs awareness.

When I started EMLWY, back in 2011, I needed support. My coil had stopped working and the pain was back. I was disheartened. I had expected the effects of the coil to keep my endometriosis symptoms at bay for the next 5 years. I hadn't considered it not working.

I had previously had a group on Facebook where I shared information that I came across about the disease but I never really talked about my own problems on there. When Facebook changed, my group was deleted and I felt like I needed a new outlet. I originally started a general blog, not knowing what I wanted to write about. I added a few little photos but then deleted it. It eventually made sense to create EMLWY. A place where I could vent my frustrations and let others know about the disease.

I didn't write very often back then and it's only since my endometriosis flared up in February that I've really embraced the blog and started using it as a source of therapy. I haven't been able to work since February and after being made redundant in May I decided to write more regularly about my experiences, I guess more in the hope that someone would sympathise. That's all I wanted. People to just recognise what I was having to deal with. In the process though, I've found a whole new support system (along with some wonderful people) and I've realised that yes, I have had a shitty year, and yes, a whole world of bad things have happened, but there are people out there who are in just the same position if not worse. That alone has given me a new perspective on things.

I wanted EMLWY to show people what living with this disease was like - what it actually meant to have it there every day, to cope with the emotions of it as well as the physical symptoms. Friends knew I had endometriosis, but I didn't very often talk about what it was doing to my body. EMLWY gave me that opportunity. I felt people needed to know. I felt I had to justify what I was going through because I felt nobody understood. My symptoms had worsened as the disease had spread over the years and yet, still, people didn't even know what endometriosis was. So this blog has become almost no holds barred. Apart from the odd things, I do pretty much talk about everything. I'm past the point of embarrassment now - people need to know... Maybe if I was single I wouldn't talk about quite so many things in detail, but I have Danny, and Danny lives this too.

EMLWY has now become, not only a place for me to seek help, but also a place for others to gain information on the disease and help for what they are going through too. I've spoken to young girls on here and it makes me think about how upset and scared I was at the prospect of this disease at 21, let alone going through this at 16 when I'm battling so many other teenage issues.

My aim all along has been to get as many people to just read the word endometriosis as possible because then they will at least have some recollection of it, even if they don't know what it is. I never push this in anyone's face, all I ask is that you realise there is a disease out there called endometriosis, and it affects millions of women worldwide.

S.
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