The right choice

As mentioned in my previous post, Tim and I have been looking at the changes we are making in our lives to help us move forward with our dreams. Some dreams have been put on hold (regular holidays, a mortgage, driving lessons for me etc) for those that we truly want to pursue now (getting married, having a baby, getting my health better etc)

With this in mind, I have been scouring Amazon to try and find books that will help us to really plan for this major event in our lives (the having a baby one). There is a wealth of information out there, but I am trying to find things that help me understand how to optimise my chances of conceiving in relation to my Endometriosis. Being unable to make my mind up over the cheaper Amazon deals, I walked into our local bookshop and picked up a book to look through and see how helpful it was. And it's pretty good.

With just a quick flick through the book, the things that have highlighted themselves are reducing stress, eating well and making time for each other. This makes me realise, more than anything else, that the decisions we have made to enable me to cut back on work truly are the right ones. With more time at home, I will be able to focus on sleeping well, planning healthy meals with the best foods for us, and letting go of the stresses caused by working in a hectic environment as I do now. Even when I do return to work, it will be far less stressful... I know this, because I am hopefully returning to a job I previously did and my health was actually the best it had been for a long time during the year I worked there.

It is reassuring to have this book that reminds us that although times may be hard in some ways (finances, mostly), we will actually be far better off in so many ways. We just have to hope that we are one of the lucky ones and fall pregnant naturally, because I really do not want to even think about what comes after that.

Of course, this is still a while off. Our wedding is not until October and we are going to wait until after that to have my Mirena coil out (there is no way we want the wedding day to be ruined because I am having a bad period!!) This is, as well, a scary decision. I have had my coil in since 2005, so have no idea what my periods will be like when they return. I mean, I had pain enough before my most recent laparoscopy and I wasn't even having proper periods... when I remember the agony and exhaustion that came with my periods before 2005, I wonder if it will be as bad again. I hope not, especially as I will be starting to get more work around the time we have the coil taken out. Sometimes, although I know I am very, very lucky in so many ways, even in my health, I so hate that fact that Endometriosis can cause so much worry over a decision that should be such an exciting one... I mean, it still is exciting, but it is tinged with worry too.

But, we know that we are doing everything we possibly can to make this easier for both of us, and that is all that really matters. We can't second-guess the future and so we shouldn't really try. Living in the moment is hard, though, so you may get a few more posts like this over the next few months!!

What the future holds...

For a while now I have wondered where to take this blog, but it seems to me that I need to really focus on what is happening in our lives and use it as a real outlet, because right now big things are happening. And I do believe that this means the blog may turn far more towards a focus on endo, marriage and trying for a family than anything else... I hope this means I will make some new blogging friends with similar experiences, but without alienating any of my current readers!

Anyway, I better fill you all in on exactly what is going on. First things first, I finished the Synarel spray (used to induce a pseudo-menopause) just over a week ago, and things are interesting right now. I am constantly exhausted and I can only assume this is due to my hormones doing a rebalancing act. I've also had the odd day of bleeding (bright red) but nothing more, so I am warily waiting to see what happens.

I say "warily" because the whole point of trying the Synarel spray was to give my Mirena coil chance to really get going and help with the endo (my previous one stopped my periods, although didn't stop the endo growing back). I really want a few months of feeling good again, and for that reason I have given in my notice at work and shall be taking a few months out before returning to a previous job which is far more flexible. However, I am also wary because Tim and I are wanting to try for a family soon, and this means having the coil removed and who knows what "fun" that could bring.

The older I get, the harder it is to fight the maternal instinct that, for me, kicked in at a very young age. As a 9 year old, watching my mum work as a childminder, I knew that one day I wanted to be a parent myself. Growing up, I took opportunities to babysit and subsequently work in nurseries and day care, however in the previous year or two, especially since meeting Tim, the desire to start a family has really kicked in, spurred on by the fact that I am now old enough to consider it and that I am seeing friends and family having their own families too. It must also be mentioned that we are aware that the endo could well mean we could have difficulties falling pregnant and though we try not to worry about it, it is something we accept we may have to deal with one day soon.

Of course, to begin with, I was the only broody one of the two of us, but since our nephew was born Tim has caught the baby-bug too and we would like to think that after our wedding in October (my health permitting) we can think about trying for a family of our own. Scary, but exciting stuff. Especially when I watch things like "One Born Every Minute" - that's enough to make anyone want a baby!

This brings me on to another thing - money. We are not rich, far from it, and my coming out of work and considering part-time work only means money will only get tighter. It is the driving factor between us moving - if we ever want to be able to do this, then we need to live somewhere cheaper than in the commuter belt for our capital city. I have struggled with this, as I feel immense guilt at times for putting the pressure upon Tim to provide for us, yet I know that if we are ever to be able to have a family I will need to time to ensure I am strong and healthy and able to care for both myself and the baby. So the change is required. I just feel guilty about it.

So that's where I'm at... a hormonal wreck in some ways and struggling with the stress of changing towns, changing jobs, changing lives... many changes indeed. So I think this blog really will become far more of an outpouring of what is happening than anything truly constructive, so don't expect any well-thought-out posts any time soon!

We interrupt this blog...

for an important issue, not just for Endometrioisis sufferers (as it may first appear) but to all those who care about careful research and dedication to providing correct information in widely read media formats.

My friend Jeanne of Chronic Healing fame brought this article to my attention at the end of last week. Whilst the importance of pelvic examinations and the listening skills of the doctors we see are of utmost importance, the doctor who wrote this (a GYN no less) needs to seriously look into the research and knowledge behind Endometriosis and its diagnosis and treatment (not to mention that for cancer patients). It is a well-known fact amongst Endometriosis patients that the only way to know for sure if you have the condition is through a laparoscopic procedure. Ultrasounds and pelvic examinations will not easily diagnose the condition as this doctor suggests - I wish it were so simple because twice now I have been told for years that there was nothing wrong with me, and pelvic examinations and ultrasounds seemed to confirm this diagnosis. However, following surgery, both times I had to have multiple internal organs disconnected as scar tissue and adhesions had stuck them together. How such a thing is missed on an ultrasound scan must clearly show that surgery is needed to diagnose this condition, yet this particular doctor seems to be completely unaware of or disinterested in this fact. And there are far too many doctors out there like this, which explains why women with Endometriosis spend an average of 9-10 years in excruciating pain or battling infertility before they find out what is wrong... too many years to be told by a doctor that "some women are just like that" and that "you just have to put up with the pain"... and this is pain that can make you pass out, throw up and have hallucinations from the fever it can induce!

But even more dangerous is the fact that this doctor writing the article suggests that cancer could have been diagnosed or "found" through a simple pelvic examination. Surely he must know that to be absolutely sure a combination of tests is best. It is all too scary to think that doctors are happily misdiagnosing patients, but even worse is thinking of women who may, as Jeanne did, come acorss this article by putting "Endometriosis" into a search engine and believing the article to be trustworthy.

Now here is the worst part... several of us wrote comments regarding the article, only to find that comments were closed after only a handful of them were "approved". A retraction was not granted and the editor has yet to reply to letters sent direct. Following Jeanne's example, I felt this needed a mention and so am hi-jacking the blog for one more post to bring this to the attention of any readers I may have. I am nothing if not passionate about helping create better healthcare for patients, especially when I know first-hand the pain and suffering that a particular condition can cause. I am sometimes far too open for some people about my Endo, but having opened up and realised that it was other people's problems when they got embarrassed by the conversation and not my own, I found that many people were receptive and even had or knew someone with Endo themselves. Too many women have or know someone who has Endo, which can quite simply ruin a woman's life at times (and her partner's when he has to deal with the fallout from the pain, emotional and physical), and yet the condition is still so unknown.

I shall get round to adding an Endometriosis awareness badge on here sometime soon and plan to resurrect my "Writing the Pain" series about living with chronic pain, as well as bringing some more spiritual series to the blog. It is time I wrote about what I am passionate about and this marks the beginning of that.

If you feel like doing something about this, please do visit Jeanne's blog, the article, sign the Endometriosis Awareness petition or check out any official site about Endometriosis in the country you live in to learn more about what any one of your female friends may be silently suffering.

Thanks

xx

Headaches and things

This is an endo post, so if that doesn't interest you then skip this one and I'll see you back here shortly!

I'm currently on month 3 of a 4 month induced menopause. I tried one of these last year with terrible results (I only made a month because the Zoladex injection had such awful affects I couldn't function at all). This time round we tried Synarel nasal spray and HRT (Add Back) patches instead of tablets and so far I've been doing ok... tired and achy but ok.

I was also put on antidepressants and for a while was doing pretty darn good. This past month, however, the menopausal symptoms have got to me. Hot flushes catch me out, sleepless nights tire me and headaches spoil my day. I'm at the doctors every month at the moment and last time I went I spoke to her about the lack of sleep and headaches. When I say headaches I mean the ones that make you feel physically sick, throb when you move and/or make it hard to focus on anything. At first I thought it was because I spend more time looking at a computer screen in artificial light all day but then I realised I did that before and my head was fine. Suddenly I was suffering from them 70-80% of the time and painkillers did little to help.

The doctor prescribed yet another antidepressant, only this time in a low dose that is commonly used for chronic pain. Amitriptyline it's called, and since being prescribed it I have found several people I know who have tried it. My doctor warned me that I might feel "groggy" or "slightly hungover" for a day or two but to persevere with the tablets. So, I tried my first one when I knew I didn't have to work the next day. Unfortunately, "groggy" is no a word I would use... I was completely out of it!

It took Tim about an hour to drag me out of bed. I just couldn't stay awake and every time he woke me up I'd drift back off to sleep but not even realise I was dreaming until he said something to me and I woke up again. Then we proceeded to move some of the stuff from our house to his parents and I just wasn't with it at all. I almost fell asleep on our niece's bed whilst she was playing with her dolls and talking to me... this never happens, I usually take ages to fall asleep!! The worst part was that I returned to work the next day and still wasn't really with it. And I found out from my colleague and my aunt that both of them had experienced the same thing. Neither had taken more than one tablet and I have refused to take another one too.

So now I am stuck... do I try half a tablet and hope it has less of an effect but helps with the headaches or do I just try and live with the headaches for the month I have left of this menopause? I see the doctor in two weeks time so I will talk to her then, she told me to go back sooner if things got worse, but with all that is going on I don't know if I'll manage to get an appointment anyway (you can't make advanced appointments wit our doctor, it's a call on the day and hope there are some left kind of surgery and as it is in another village I can't get to unless someone drives me there, getting to see someone is somewhat difficult.)

Has anyone else suffered from this kind of pain when going through an induced menopause? Has anyone used Synarel or Amitriptyline? I could do with some advise about this one...

On a more positive note...

Following on from my last post (and also trying to leave it behind) we saw the gynaecologist yesterday and he has prescribed medication similar to the one I was on last year, plus patches to help with the side-effects. We're hoping this may go better than last year. I had hypnotherapy today (more on that in another post) and have been signed off work for two weeks to relax and gie th medication time to kick in. Oh, and I've also asked for an appointment with occupational health, so all in all I am doing everything I can to try and improve the situation and that makes me feel a bit less helpless and a lot more hopeful...

So, moving on, I wanted to introduce an idea to you all. I am currently in the process of writing a series of poems entitled "Advent at the North Pole". Now, as I am hoping this will run once a day throughout the month of December (well, until Christmas Day that is), there is much left for me to do. So, I won't be able to make any pictures to go at the top of each post, and as the poems will be aimed at children (and adults alike), I think it would be nice to have a few pictures, however small or simple, to head each post. So I'm asking a favour of you... would you draw me a picture of an elf, Santa's workshop, his reindeer, the big man himself or anything else associated with the North Pole and send it to me, with permission to post it on my blog (with your name, if you wish, and a link to your blog/site, of course!) It doesn't matter how simple, complex, good, bad, you think it is... anything is better than nothing and I would love to have a group of pictures to post... you could send me more than one if you like...

My email is dreamslastforever [at] hotmail [dot] com

Whatever happened to just being happy?

For those of you who have followed my blog due to endometriosis connections, I am sure you will understand the following blog post, for those of you who have not been affected by endo, I hope you won't see this post as a simple "moan" or "attack", it is simply a truthful expression of how I feel, right now.

These past few weeks have been tough on both me and Tim, and I cannot ever remember crying so much for so long. This past year has really taken it out of me and I feel ready to break, in fact I think I already have broken a little bit, based on the amount of tears that have spilled recently. And these aren't just my own, for poor Tim has had to try and console me, knowing that there was nothing he could really do to make things better. I am battling a "invisible condition" that even I forget is there making me feel so rubbish sometimes... sometimes I forget and think it is all my fault, that if only I could just pull myself together things wouldn't be so bad.

It all started about a month ago when suddenly my urge to have children turned up a gear. A friend at work told me she had dreamt I was pregnant, and then I dreamt we had a baby, two nights running... except the baby wasn't quite ours and we weren't prepared to look after it (as in we didn't have any equipment, feed etc, not that we didn't want to!) This sparked a whole rush a emotions, such as "I want children, now" and "what if we leave it too late to try and find the endo causes more damage and we can't have children?" and "I'm already feeling so ill now, how will my body cope with being pregnant?" and "what if this is all pointless worrying, what if we already can't have children?"... and so on and so forth. I began to get really depressed about how my lifelong dream of having children was becoming a nightmare - why should something so wonderful become a decision that has to be made based more on the best time healthwise and whether we have enough finances, rather than that we actually want children? Why does endo (and all those other factors that affect people's lives) have to screw things up?

As the weeks went on I got more and more exhausted. My immune system is low due to exhaustion and fatigue (I cannot count the times I have fallen asleep on the bus to work because I am so tired). I am working full-time, commuting which puts my days up to 12 hours out of the house and I am angry that I am doing something any healthy person would find hard, whilst trying to battle feeling ill all at the same time. When did society get so messed up that my generation is worse off than the one before? Why is no choice hidden behind a so-called "free-choice"... no woman really has a choice whether to work or not, it's not that easy. Most women have to work just to survive, and those who can come out of work have to make many sacrifices just to do so... whatever happened to family values (and by that I mean simply being able to put the family first, not having to).

All this was happening whilst a cold caught hold of me... a cold that just will not go away, dragging at my very little energy until I have none left and feel like I just cannot go on any longer. I fear for what damage I could do by pushing myself so far beyond my limits, yet I have no choice when I have to work just to pay the rent. We have no choice, Tim and I, we have to fight on. But what happens when you just cannot fight any longer?

We are left with dying hopes that our appointment with the gynaecologist tomorrow may come up with some solutions for us. I cannot take feeling this low any longer, and I cannot take knowing the adverse effects my mood has on Tim. We are a young couple and life should be fun, not a struggle every day. My manager asked me in my performance review where I saw myself heading and what aspirations I had for the future... I've been told a few times I'm not ambitious enough, but you know what, my greatest ambitions are to be healthy and to have a family, what is wrong with that? Why do we have such a focus on careers and achievements and "having it all"... whatever happened to just being happy?

I know this feeling is, in the big scheme of things, only momentary and that things will get better, but it becomes harder and harder to hold on to that hope when each day just drags us down that little bit further. I grasp desperately at solutions, but none of them work and the guilt that I feel for putting so much pressure on Tim and myself to make our lives easier is unfair to us both. Sometimes I wish we just had a fairy godmother who could come and wave her wand and make everything better... please think of us tomorrow as we head to the hospital for our appointment, for the gynaecologist is our one hope of finding a solution the root of this whole mess - the endo!

Writing the pain - a new project

This week has been hell for me. My whole world seemed to crumble as my emotions got the better of me. Every so often this happens. I can be riding on top of the world one day and the next *WHAM* there I am, completely inconsolable. Initially I thought I was going crazy, but over the years I have noticed a pattern - hormones! Just recently this is what happened, my hormones got the better of me and nothing could stop me from crying. It was at this point, in his desperation to "fix" it, Tim came up with the idea that I should write. So I did.

Writing has always been incredibly therapeutic for me, but this past year I seem to have fallen out of the habit. When I look back I realise that the times in my life when I was most at peace were also the times in my life when I wrote the most.

I am very lucky in that writing comes natural to me. I'm even luckier in that, on the whole, people enjoy reading what I write. (Either that, or they just don't like to say otherwise!!) I've also noticed that the one thing that people always say to me is that they enjoyed the "honesty" of my words, the depths of emotion and the fact I do not hold back. With this in mind I have decided to try a new venture, one which I hope will not only benefit me but also others...

My venture is, to write about life with Endometriosis. I am hoping that what I write will not only be comforting and inspiring to other sufferers but also informational to others and maybe even touch them through common ground, such as similar desires for life and the strength to carry on through the darkest times. Perhaps this is a big task, perhaps it will only serve me... but I hope not!

With this in mind, I ask any of you who read this, to play it forward and pass on the word about this project. I will try and set up a unique page for my "Endo posts" and a link in the sidebar (with icon) that may be posted elsewhere. I would also like to encourage others to try and write/create regarding their life. Endometriosis is an unknown condition to many, and it why so many of us suffer when no-one understands. This could be said of many things in life, I know, but this is the one I struggle with... and writing what you know is the way to move others.

So without further ado, here is my first contribution (written on the bus home last night... yes I write anywhere and everywhere!!)


A Lover Gone Bad

Do you know what it's like to be me,
do you really understand?
Do you have any idea
what hell I live through, every day?
Well, do you?

Anger and fear are friends of mine -
you may recognise them, here by my side
They've visited you when I've come to call,
you thought I was just bein cruel,
didn't you?

Pain is a lover I take to bed,
he comes and goes as he pleases...
have you ever known the hurt of a lover gone bad,
never knowing when he'll return,
or when he'll beat you again?
Have you?

Perhaps I'm too harsh, you do try to help
and I know that you care for me too.
But please, do not tell me "It's not so bad"
or worse, that you understand
unless it really is true.


I'm sure that this may sound very harsh to some, but as always I write from the heart. I know I am loved, and so many people try to help, but so often the overwhelming feeling of having a condition like Endometriosis is being completely and utterly alone. I hope that this poem will comfort those who know that pain only too well, and maybe help to explain to those who don't just what it is like.

Wishing you all a lovely weekend
Amanda