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Category: Endometriosis

Until we accept that "women's troubles" are just as important as other conditions such as diabetes, women will continue to suffer, no matter what condition it is that they are suffering from.

Endometriosis in the News – Here’s Why It’s Important!

This morning I received a message from my sister-in-law, directing me to an article in the Guardian about Endometriosis. My initial response was caution, as so often this condition that has blighted my life since my early teens is so poorly represented in the media, if mentioned at all. But as I read through the article I was pleased to see that it was well-researched, quoting leaders in the field, and clearly expressed the challenges faced both by women suffering from it and the healthcare professionals fighting to find a cause and a cure.

I was even pleasantly surprised to find out about the 45 centres across the UK that have been accredited by the British Society for Gynaecological Endoscopy, as this is something I have never heard of. Just recently my GP and I have been searching for an Endometriosis Specialist, as we seem to have come to the end of the line in terms of treatment options. Yet neither of us managed to find out about this, nor did the gynaecologist who saw me last year.

This is why it is so important that awareness is raised through every means possible, so that those who are suffering (and those who are treating them) can access the best possible care, including an actual diagnosis for those who have never been properly diagnosed.

I’m no stranger to misdiagnosis – during my pregnancy my Hyperemesis was never officially diagnosed (or treated), and TJ’s Small Fibre Neuropathy was also misdiagnosed for several years as possible Carpal Tunnel. But I had always considered myself “lucky” to have been diagnosed with Endometriosis at 21, around 8 years after I first developed symptoms. A lot of this came from the fact that both my mother and maternal grandmother had suffered from it, and so we knew how important it was to fight for a diagnosis, especially through all the years of being told it was “normal” to be in pain.

But what the Guardian article clearly showed me this morning is that many of my other “diagnoses” since have most likely been a side effect of the Endometriosis all along (something I have long suspected but not had the courage to prove). Take, for instance, my IBS… I never had any trouble with my digestive system prior to my first laparoscopy in 2005, yet since that day I have struggled massively with pain and nausea that have consistently been attributed to IBS. Over the past 18 months I have been submitted to test after test including a CT scan, Barium Swallow, Endoscopy and Colonoscopy, all coming back clear. The latter, however, was somewhat problematic, due to my “very loopy” colon, and I cannot help but wonder whether some of this may be due to the adhesions which have previously “glued” my uterus to my bowel.

It seems I am far from alone in getting these “misdiagnoses”, as GPs and gynaecologists refuse to accept that the symptoms you’re presenting to them could possibly be connected to Endometriosis. Yet as the article itself states, “One woman in 10 of reproductive age has endometriosis, it is estimated, and yet often their primary care doctors do not know what it is and the specialists to whom they are sent are ill-informed.” Did you get that? The specialists that women are sent to are often ill-informed – no wonder getting treatment is so difficult!

"One woman in 10 of reproductive age has endometriosis, it is estimated, and yet often their primary care doctors do not know what it is and the specialists to whom they are sent are ill-informed."

I’ve said this before, but I’ll say it again – I consider myself “lucky” that my current GP has tried to find an Endometriosis Specialist rather than referring me to a general Gynaecologist. We didn’t have any luck in our search, but the fact is my GP is trying his hardest to get me the best possible care he can. To be believed and have that kind of support is incredible, though it should, of course, be standard!

I’ve seen enough Gynaecologists through the years to develop a certain amount of fear around appointments with them. Despite twice having surgery that has clearly shown Stage 3 Endometriosis, with adhesions attaching organs to each other, I have still had Gynaecologists suggest that “nausea is not ‘typical’ of Endometriosis” and “well, you’re not in too much pain, so bear with it”.

Again, I feel “lucky” that, for me, the Mirena coil actually stops my periods and so the agonising pain that accompanied me through my teen years and early twenties is a thing of the past. I no longer suffer from the pain so great that I cannot move, throw up and develop a raging fever to boot. When I say that labour and childbirth was a cinch compared to the pain I used to suffer every single month, hopefully that will give it some kind of context! But just because I don’t have that intense level of pain any more, doesn’t mean I don’t suffer.

I get “tugging” pains around my ovaries and “stabbing” pains in my rectum, so sharp that they take my breath away. I get mild “cramps” and the awful nausea that feels almost like motion sickness and reminds me of the horrific weeks and months I suffered with HG during pregnancy. And all of this happens completely at random, meaning I find myself suffering 2 if not 3 weeks out of every month. Add in the migraines and complete exhaustion from struggling to hold down a job, raise a son, and generally have a life, and the picture is grim.

Now here’s where I’m going to sound like a broken record – I feel “lucky” that I still have a job. I have faced discrimination in the workforce before and had to put my career plans on hold many times because of how ill I am. In fact, I often make myself more sick by trying to ignore the fact I am ill and carry on just like everybody else. But the truth is I do have a job, I do have a son that I am well enough to play with most days, and I do have some life left to enjoy. Not much, but some. Many women are not so “lucky”.

But here’s the thing – this shouldn’t be what it feels like to be “lucky”… Every woman with Endometriosis should be receiving the best possible specialist care to ensure that the condition does not rule or ruin their life. That isn’t luck… it should be standard. But until we break this idea that “women’s troubles” should just be tolerated and actually begin to see it as something that we need to find better treatment for, “luck” is what it comes down to.

If you’ve read my blog for a while, you will know that I have campaigned tirelessly over previous years to raise awareness of and better diagnosis and treatment for Hyperemesis, because every woman’s health and wellbeing is important. But the percentage of women suffering from Hyperemesis is far less than that of women with Endometriosis, where an estimated 1 in 10 women (or 1.6 million women in 2012 in the UK alone) have the condition. To put that into perspective, “The numbers are comparable to diabetes – and yet there is only a fraction of the awareness of the condition and help for those afflicted.”

You may wonder why I am mentioning Hyperemesis in a post about Endometriosis, but to me it is all the same battle – women are being drastically failed by our society and medical profession through lack of awareness and lack of funding for research, development and education. Until we accept that “women’s troubles” are just as important as other conditions such as diabetes, women will continue to suffer, no matter what condition it is that they are suffering from. And that is why it is important that Endometriosis is in the news today!

Until we accept that "women's troubles" are just as important as other conditions such as diabetes, women will continue to suffer, no matter what condition it is that they are suffering from.

Living with Chronic Illness – How We Support Each Other

It’s no secret around here that TJ and I have (more than) our fair share of health troubles. Between TJ’s Small Fibre Neuropathy and my combination of Endometriosis, Hypermobility and IBS, life can be challenging to say the least.

It would be hard enough if just one of us were struggling, but when we’re both sick it makes it very difficult to support each other through our darker days. And yet, support each other we do… and we do it well!

Living with Chronic Illness-How We Support Each Other

Some of this comes from the fact that we both know exactly what it is like to feel exhausted the entire time, to have our energy zapped by constant pain (and other symptoms), and to feel that life is entirely unfair at times, regardless of whether this is just our perception or we really are facing discrimination due to our illness.

But the rest of it simply comes from the fact that we love and care about each other, leading us to find ways through the tough times even when it feels completely hopeless.

The past few weeks have been particularly troubling for us, as TJ has had to come off yet another medication due to side effects that are simply unacceptable long-term. He is doing much better now he is off the medication, but it does mean we’re in even more uncertain waters in regards to management of his pain and the extra health issues the medication caused.

And amid all of this, my health has taken a drastic turn for the worse, with more bad days than good (I’m talking 3 day migraines, crippling nausea, indescribable exhaustion). Simply surviving has become a challenge, and at times like this it is more important than ever that TJ and I come together to support each other, rather than falling prey to the misery that chronic illness can bring.

But what does this actually mean? What is it that we do that makes such a difference to how we survive these challenges and even find joy in the midst of them? I’ve been thinking about this a lot lately and here’s what I’ve realised…

We talk. A lot. It sounds simple, doesn’t it, but it really does make all the difference. It doesn’t matter what we talk about, the most mundane conversations can lead to some really interesting insights into what is going on inside the other’s mind. I’m very open and honest and blurt out what I’m thinking and how I’m feeling without any prompting most of the time, but TJ finds it more difficult to express these things. When we make time for each other in this way, it all becomes easier.

I’ll admit that I find it rather annoying when he hassles me to get ready for bed as he’s tired, only to begin telling me all sorts of things once the light is turned out and I’m about to drift off to sleep, but those talks we have before sleep are often some of the most telling! And that’s another way that we support each other – we give each other time. No matter how tired we may be, how inconvenient the timing is, or how many jobs need doing, we make that time for the other person when it’s needed.

Heightened emotions mean that outbursts can come at the most inopportune and unexpected moments, especially if we’ve been holding them in all day to get through everything else we needed to. Knowing that the other person offers safety in which we can let go and show how fragile we’re really feeling makes a massive difference. We both understand what it’s like to lose it, and so we give each other grace for those moments when we’re acting irrationally or taking it out on the other person, when they are the person who least deserves our wrath.

We make compromises. Big ones. When you’re chronically ill, you have to learn to know and accept your own limitations. It means that so many of the things you always thought you could have are no longer attainable without having a serious impact on your health and well-being. If you know anyone with a chronic illness, chances are you’ve heard of The Spoon Theory. TJ and I are well versed in this, and we both know that right now in our lives we are over extending ourselves massively simply to get by day to day… we have to work to make ends meet, we have to find the energy to put food on the table, and we need to provide a safe and happy environment for Little Man. By the end of all that we are usually beat… but we still want more.

This is where we find that it is important to know which compromises we can live with and which we can’t. We can live with a certain amount of pain, but we cannot push ourselves so far beyond our limits that we become unable to function. That financial security we crave is nowhere near as important as being well enough to enjoy what we do have. The higher paid job is not worth the added stress that impacts on our lives. And the larger family we’d have loved is not possible when we are both so ill. We get that. All of it. So we focus on what is most important to us – family, health, and happiness.

We work together to find new ways of surviving this crazy life of ours – we research our options and make changes accordingly. When I tell TJ that I want to try changing my diet to check for yet another food trigger, he does not question it but supports my decision. And when he tells me he wants to try exercising in a different way, I say “let’s do it”. When you’re chronically ill, you’ll try anything to find a better balance in your life and avoid triggers, even when you know that your latest idea may not work at all. Having someone support you in this rather than dismissing it from the start can make all the difference.

And finally, when all else fails, we care for each other. When, despite our best efforts, we are struck down with such severe symptoms that we simply cannot do more than sit in bed and cry, we allow this to happen. We allow each other to scream, shout, and cry about the injustice of it all, how we’re feeling utterly defeated, and that things will never, ever get any better. We’ve learnt, through the years, that sometimes there isn’t an answer, that sometimes we cannot fix it for the other person, and that despite the heartache that brings us both, we have to accept it.

And so we cry with them, allowing the grief to surface, safe in the knowledge that together we can get through it. None of this takes away the pain, but it does make it far easier to bear. It’s a dance that we have learnt together and will continue to follow and adjust throughout our lives. Living with chronic illness is tough, supporting someone with a chronic illness even tougher at times, but together you can get through it.

Tell me, how do you support your loved ones when ill? And what support do you find helpful when you’re sick?

Doorway

When One Door Closes…

…stop banging on it!

The past couple of weeks, I have been dealing with some really huge emotions. I’ve gone from being positive and excited about our new life (new home, new jobs etc) to utterly miserable about the things that we simply cannot do.

It started with sickness stopping us doing something as simple as a day trip to the beach (reminding me of how often our health keeps us from doing “normal” things) and continued with a really bad month with my Endometriosis (just in time for the ten year anniversary of my diagnosis) that made it even more obvious how much my health issues have prevented me from doing.

And then it was just a slippery slope (made worse by hormones, of course) into remembering how much I had looked forward to having and raising kids, only to have to stop after “just the one“. I cannot tell you just how much my heart and soul yearned for things to be different, for another baby to be in our future, for our “baby days” not to be over. So when the Endometriosis kicked off and made me realise that not only could I not have another child, I was also struggling to do all the things I desperately wanted to do with the family we already have, it all just got a bit too much.

Of course, it all became immeasurably easier once the hormones started to settle down (!) but there was still a sadness underneath it all that wouldn’t go away. Until yesterday…

I was busy looking up quotations to send in a little book to a friend who is going through a tough time of her own right now, and I came across this:

When One Door Closes... Reflections on Life

I can only describe my reaction to this as a kick in the gut. Within those two short sentences I found so much truth that it hit me right to my core. I realised that I had been desperately banging on closed doors, like a woman possessed, for far too long. And it was time to walk away…

When I look back on my life, particularly the past few years, I can see many moments in which I chose to keep fighting a losing battle. I chose to invest far too much of my precious (and limited) energy on trying to make something happen that I knew, deep in my heart, wasn’t right. I’m not saying that what I wanted was wrong, just that it wasn’t my journey to take. And whilst saying goodbye to our dreams is very often the hardest thing we can imagine, sometimes it is the best thing we can do.

I’ve known this, at some level, for a long time. I know that I have touched upon it, more and more over the years, each time coming closer to accepting it as one of life’s great lessons. I know this, because I can look back on my blog and see what I was thinking 3 months ago, a year ago, even five years ago. This is one of my favourite things about blogging – it gives you a tangible record of where you were at each point in your life, how you were feeling, and what you were thinking at those times.

When I look back over old posts, I can see recurring themes that crop up time and again. I see acceptance – accepting my limits, accepting the realities of life, and accepting myself. I see understanding – understanding the journey I’m on, the lessons I am learning, and how this impacts on how I live my life. And I see purpose – what I feel like I’m here to do, and how I achieve that.

However, I also see myself making the same mistakes, over and over again. I realise that this time last year I understood that it’s okay when life doesn’t turn out as planned, yet I still continue to try and make everything fit into an old ideal for my life. I see that at the beginning of this year I fully embraced living a life of “surrender” in which I allowed life to unfold as it did, without desperately trying to “fix” it, and yet I find myself forgetting how to do this. And I see that, yet again, I have been trying to ignore my body’s signals that something isn’t right and I need to make a change…

I have an appointment with my GP next Tuesday to discuss moving forward with dealing with the Endometriosis. It may well involve seeing a consultant to fight for something I have been thinking about for several years now but so terrified of pushing for. It certainly means walking away from a closed door. And in many ways, that scares the hell out of me, because once I walk away, there’s no turning back.

But the reality is that this door has been closed to me for a very long time. I’ve been banging on a closed door, holding myself in limbo, waiting for someone to find a way to unlock it and let me through. Even though that will never happen.

So today, I wanted to share with you the message that is carefully working its way into my heart and helping me to move forward… When one door closes, stop banging on it! Trust that whatever is behind it is not meant for you. 

Rose

Ten Years with Endometriosis

Ten years ago, this month, I was diagnosed with Endometriosis. I was relieved to finally have a diagnosis, and was told how “lucky” I was to be diagnosed at such a young age (I was 21). Whilst I appreciated the sentiment, I didn’t feel very lucky.

Ten Years with Endometriosis

I had been suffering from the most severe abdominal cramps ever since my periods first started in my early teens, and had spent several years dealing with a cycle that could be as short as 2-3 weeks at times. When you feel physically sick and are doubled over in pain during your period, having them come so frequently together (not to mention so unpredictably) can really make your life hell.

Getting a diagnosis didn’t really change anything, other than giving me a name for what I was dealing with. I’d like to say that getting the diagnosis meant that I would no longer have to deal with doctors and gynaecologists who didn’t believe how much it was affecting my life, but sadly that wasn’t always the case! But, still, I had a name for what was happening to me – at least I didn’t have to doubt myself any more…

The past ten years have been hard. I’ve tried pretty much every treatment option available to me, and have unfortunately reacted badly to most. My last appointment with a gynaecologist, at the beginning of this year, set out my options pretty clearly:

  1. Continue as I am, with the Mirena coil, and see how long I can cope with the symptoms
  2. Take Nafarelin, again, to try and keep symptoms at bay as long as possible
  3. Have another laparoscopy

Unfortunately, none of these are great. The Mirena, whilst stopping my periods, does not seem to stop the pain. And as I only came off my last 6 months’ of Nafarelin in February, it just feels too soon to try that again. As for surgery, well my last two laparoscopies were pretty extensive and left me feeling worse than before (my first one set off my IBS, and I ended up with an infection after the second). When I look at the length of relief I get from any of these options, it really does feel rather hopeless.

According to my gynaecologist (not that I ever see the same one twice!) the plan is to get me through to my 40s and then consider removing my ovaries. I’ve always known this was a possibility as my mum had a hysterectomy at 36 and my Grandma had one at 40 (yes, Endometriosis, like Hyperemesis, seems to run in my family!) The problem with this is that I am only 31… I can’t imagine getting through another 10 years like this.

This past week I have felt awful. Admittedly, I have had a virus that has totally floored me, but the worst part is that just as I was recovering from that I have been pulled back down by cramps, nausea, intense bloating, indigestion, the lot. I know it is the Endo, because the symptoms are so typical for me… I was super emotional last weekend in the run-up to it, my pelvis and tailbone have been killing me, and I’ve been dreaming about a combination of babies and ovary pain – you can’t get more hormonal than that!

And I realise that this month the symptoms are worse than last month. And last month the symptoms were worse than the month before. And suddenly I realise I am heading for yet another slide into the abyss that is Endo at its cruellest.

I’m lucky, in that I have support. My mum “gets it” and I have so many online friends who have walked this path before me (and with me). But still, it can feel so lonely sometimes. When your body keeps failing, keeps holding you back, keeps you from enjoying time with your family, keeps you from reaching your dreams, keeps you from living… well, that just plain sucks.

It’s no wonder I’ve been miserable this past week. I thought it was because I was sick. But really, it’s the reality of it all sinking in. It’s realising that, yes I had a virus, but nobody else in the family was so incredibly and completely wiped out by it and the only reason I was is because my body is already working overtime to deal with my crazy hormones and the pain that comes with them.

So now I have some thinking to do. What route do I take? Do I do nothing, or do I go down the medical route? Do I try the gynaecologist’s suggestion of taking Nafarelin constantly, to see if that helps, or is that a bit pointless? According to her, I can take it up to 2 years as long as I take HRT and then longer than 2 years if necessary, only I’d have to start having bone scans after that. But if I do that, how is that any different to having my ovaries removed? Surely pumping my body full of more chemicals just to avoid that surgery for a few more years is a bit mad?

But am I really ready to push for something more permanent? I think I may be getting there, as this week it has really hit me that we won’t be having any more babies (hence my love letter to myself about my journey towards motherhood). The only reason I can think of for those emotions hitting me so suddenly is that deep down, I know I have some big decisions to make. And whilst I know we decided long ago that another pregnancy isn’t an option for us, opting to take that away completely just seems so immense!

So, yeah… this month marks 10 years since I was first diagnosed with Endometriosis. Ten years of having a name for this condition that totally runs my life at times. Do I want to give it another ten years, or is it time to say “enough”?

Let’s Talk About Women’s Health: Endometriosis and Me

It feels like I haven't blogged about Endometriosis in a very, very long time. Too long in fact, because right now I seem to be having major issues with it all again.

I think the last time I posted properly about it was way back in 2010, before I fell pregnant. I commented on it once or twice during pregnancy and then again last year, but to be honest I have been not-so-blissfully unaware of its impact on my life for quite some time. And that's not to say it hasn't been having an impact, but rather other things have distracted my attention from it.

But right now I seem to be living in hell and I'm beginning to think it may be connected to the Endo again (rather than, as I have been woefully saying, lingering affects from being so sick during my pregnancy).

Perhaps this sounds like I am being a bit of a drama queen, but bear with me…

I started suffering from nausea for 2 weeks in every month from the time Little Man was 3 months old. I saw a gynaecologist about this and we discussed my symptoms. He told me that as I had no pain and only nausea it couldn't possibly be the Endo, even though nausea is a very typical hormonal symptom for me. That was summer 2012.

By summer 2013 I was starting to get those niggling pains… the ache around the ovary, the cramping around the womb, the stabby pains in places you do not want to mention. They weren't regular but the fact that they came (along with spotting) whenever I did anything strenuous like scrubbing the kitchen floor or having the odd romantic evening with my husband, made me think things were ramping up a level.

What I failed to remember though was that when I had my last laparoscopy in 2009 I wasn't in huge amounts of pain. I had pain, but not unbearably so – it was all the other symptoms that got me. The nausea, the exhaustion, the random pains that had no pattern. I fell into the ridiculous notion that without pain it couldn't be the Endo (as prior to my first laparoscopy in 2005 pain was the major symptom I had), but I have always known pain isn't a direct indicator of the severity of Endometriosis and as I wasn't having periods thanks to the Mirena I wasn't having that same severity I had suffered from before. I knew this in 2009, which was why I pushed for the laparoscopy when they discovered stage 3 Endo which included my uterus being attached to my bowel. No wonder I felt awful!

But for some reason I did not make these same connections last year. I think I was so concerned with raising awareness of Hyperemesis Gravidarum as that was still so fresh in my mind, that I just assumed the dietary issues I was having were left over from that (after all, even my GP said all that dry heaving could have caused a hiatus hernia!) And then, of course, I was so worried about TJ's symptoms that I never really stopped to consider how bad mine were getting, nor how quickly they were progressing…

But here I am, in 2014, in a very familiar place. I'm exhausted, I am in discomfort, I am sick, and I am losing weight. All of these are such telling signs that something is wrong and I cannot believe I have missed them until they got so bad I had no choice but to notice them.

I guess I just always had something else to blame. In September I had to take two courses of antibiotics which severely upset my stomach – so I thought it was that. In October I started a new job so I thought the stress of that was making me sick. In November I went to a conference and I thought the change in routine upset my system. In December I had the most horrific "virus" and yet now I don't think it was a virus at all… I am starting to worry it was connected to adhesions around my bowel.

In January I had yet another virus, and this time TJ had it too so I just thought it was that lingering on a bit too long. But over the course of December and January I lost a stone in weight and I have yet to put it on. The only other times I have been this small in my adult life has been when I was very sick with the Endo or very sick with Hyperemesis!

Since January I have felt sick most days. For the past few weeks I feel sick without fail 30-60 minutes after I eat. Without fail! That makes eating very challenging to say the least. No wonder I can't seem to put the weight back on.

I am taking medication for the sickness, medication for reflux, and medication for IBS and I am still this sick. It is getting to the point now where I don't know how I am continuing to cope.

I don't know how I am doing it, but I do know why I am…

1. I have no choice

2. I don't know any different

3. I will not be beaten!

 

But that doesn't change the fact that I am really struggling and I need to get on top of these symptoms soon. I am lucky that I now work from home so can at least work around feeling poorly (I have made several phonecalls from bed!) That goes a long way towards helping me cope but the symptoms are still extremely troublesome.

So my difficulty now lies in the way forward. I have an appointment to see a gastroenterologist in April but I am unsure whether I need to see a gynaecologist instead (or as well as). I don't know who deals with these things – I think the Endo is to blame because I have some very telling signs, and yet it is severely affecting my digestive system which has not been great ever since my diagnosis of Endo, so perhaps I need to see both. 

All I know is that I can't keep going on like this. It is for this very reason that we know we can never have another child. For us it is not the Hyperemesis that stops us doing it all again but rather my health outside of pregnancy too. We were so lucky to fall pregnant naturally and have Little Man but we can't do it again… it takes all my energy just to give him a good life, I couldn't split myself between two children. And it hurts me to say that but it is true.

I think I'm heading towards surgery at some point in the near future but I don't know what kind and that is scary too. And this is why I need to start blogging about it again… I need a place to share these feelings, both for myself and for all those women (1 in 10!) who experience the hell of Endometriosis. If I can ignore my own symptoms and doubt myself after all I've been through and all I know about it, what chance have I got of getting anyone else to recognise them and fight for better treatment? 

Endometriosis Awareness: free crochet pattern and giveaway!

Good Morning!

Today I have a real treat for you. My “crochet guru” Jen has kindly created a very special crochet pattern that I’m sure you’ll love as much as I do.

I’ll let Jen explain the pattern herself, but please don’t just “skip” this post if you’re not a crocheter. The pattern is actually remarkably simple once you understand the basics and I shall be having a go at it myself once I get some yellow yarn. And even if you are absolutely certain you’ll never pick up a crochet hook, you could still get a hold of the end product, courtesy of Jen’s generosity and a little giveaway we have planned. So read on and all will be revealed…

I’ve known Amanda since she was a teenager. It seems pretty incredible now that the only time we actually met in person was a luncheon in Glastonbury in 2006.

Glastonbury

The world of online community brings people together in a way they never could before. Where else could the inquiring mind of a middle aged American woman with a family meet the inquiring mind of an English university student under circumstances in which they become friends? Seriously, I ask you?! It’s an amazing thing, and even more amazing now that she is married (hi Tim!) and expecting a son soon. (I, on the other hand, am still a middle aged American woman!)

But I digress! It’s not only inquiring minds that Amanda and I share, we share a love for crafting. Between us, we’ve shared ideas, recipes, patterns and tips. I’ve used her as an excuse to try my hand at projects like the beaded Dream Tree…

Aventurine tree small

…the crocheted cabled Tree of Life afghan…

…and to create the best mix cd of love songs EVER.

I’ve felt helpless though in sharing her journey through endometriosis. While I could offer moral support, it upset me to see the physical, emotional and mental pain it’s brought to her over the years. We’ve all felt it, wanting to fix something for someone who is suffering… it’s very difficult to feel helpless isn’t it?

Normally when I am feeling helpless, I practice ‘random acts of kindness’ and they help me feel more connected not only to the ‘family of man’, but to my own priorities. I help the old woman at the grocery to reach her favorite jam on the top shelf (I’m tall, it happens). I pick up someone’s tab at a restaurant (very rewarding, you should try it!). I spend a day picking up trash at the lake (you’d be surprised how other people join in). These little extensions of myself fill me up in a way nothing else can.

Then, Amanda had an idea! Her idea is to combine my love of crafting, and crocheting in particular, with the cause of endo awareness. Brilliant! So, here we are… I created this hot water bottle cozy with a yellow awareness ribbon, in hopes it will not only bring awareness but comfort to a woman in pain.

Ribbon Cozy2 small

The exact same pattern can also be used to make a tote bag, and I’ve included a pattern for a small pocket purse for carrying personal items as well (because you know we all do!).

Ribbon pocket small

When Amanda asked me about it, I spent a couple of days simmering with ideas. I decided on this “illusion crochet” ribbon not only because it’s cool, but because it is symbolic of hidden issues, and the work so many are doing to bring them to light. If you look at it one way, it’s simply striped…

Ribbon Tote1 small

but change your perspective a little and the ribbon appears.

Ribbon Tote2 small

You can find the free pattern here. I wrote it with beginner crocheters in mind so don’t let the look intimidate you if it is a new technique. If you get stuck you can reach me through my blog with questions.

We’ve also come up with a way for you to win this one from me! (Amanda will fill in the details)

The process of creating these items reminds me that we don’t have to move mountains to make a difference, we just have to make an effort to share our gifts as they are… when we all come together and contribute in our own way, those mountains will begin to move themselves!

So, do you fancy being in with the chance of winning an awareness tote bag/hot water bottle cozy and purse?  Can you picture yourself receiving all of this in the post?

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For more information, help or support, please consider visiting the following websites:

Endometriosis UK

SHE Trust UK

Endometriosis and Pregnancy

I'd like to say a quick thank you once again to Danielle for her brilliant guest post the other day. Please do check it out, and don't forget that her radio interview on the Pelvic Messenger is scheduled to start at 6pm GMT tomorrow (Thursday 28th July). 

It felt great to get some new information and thoughts on Endometriosis onto the blog as I have not written about it myself for such a long time. Part of the reason for this is that due to the intensity of my sickness and physical discomfort during my pregnancy I have had other things on my mind. But in talking to Danielle I realised something that I hadn't consciously accepted.

With Endometriosis being a major cause of infertility, being one of the "lucky ones" who managed to fall pregnant not only without medical interviention but also very quickly meant that I felt a certain uneasiness in sharing the news of my pregnancy and drawing attention to Endometriosis. Despite never having written solely about Endometriosis, I knew that posts about the topic could come up in search engines and bring new readers to the blog who were trying to come to terms with their own fertility issues and to then have them see pregnancy related posts seemed like it might be a smack in the face.

Things were made doubly difficult by the fact that pregnancy has been incredibly harsh on my body. I have been very ill from the word go and it has been an immense battle to keep going most days. I tried not to write too much about my struggles, again for the reason of not wanting to hurt someone inadvertently. And so not only did I steer clear of writing about Endometriosis, but I also limited my writing about Hyperemesis Gravidarum which, like Endometriosis, is a under-researched condition that is often poorly managed by the medical profession and scoffed at by those who believe it is merely "morning sickness".

And yet, despite all of this, there have been many times that I could have written about Endometriosis and pregnancy. Without a doubt, being able to have a baby is one of the most beautiful things and I am so glad that my husband and I escaped the heartbreak of infertility. But at the same time, having had such a challenging pregnancy I know I couldn't do it all again. Most people respond to this with the words "you never know how you'll feel once the baby is born" and "that's just because you are feeling so sick now". What they fail to see is that it isn't just the Hyperemesis Gravidarum making the decision for me (although that is a key point in the way I feel). What they do not realise is that life isn't as easy as deciding to have a baby and simply going for it. 

My husband and I had to think really hard about when the best time for us to try and conceive would be. I have suffered with painful periods since my early teens and since 2005 have had two laparoscopies, gone through two chemically induced pseudo-menopauses, and spent an awful lot of time struggling to cope with the demands of everyday life. Completing my degree was difficult when I was so tired all the time. Commuting and working in a busy environment was almost impossible on my worst days. And making the decision to relocate so that I could work fewer hours each week was exhausting in itself.

We did everything we could to ensure that I went into our pregnancy journey as fit and healthy as I could be. But it wasn't enough. I didn't have much in terms of reserves of energy and getting through the nightmare of Hyperemesis Gravidarum was one of the hardest things we have ever had to do. Despite finally being on anti-emetics, I still feel sick a lot and add that to the pain of unstable joints and regular period-like cramping and stabbing pains which we think are caused by possible Endometriosis adhesions being stretched, and you'll see that pregnancy is not as easy is it first seems in our case. We may be able to fall pregnant naturally, but at what cost?

Don't get me wrong: I would never dream of comparing the hell of my pregnancy with the hell of infertility so many women have to face. But what I am saying is that it is so easy for people to misunderstand what I'm saying and even judge me harshly for it. I don't blame any woman who might read this and think "I'd go through as many 'difficult' pregnancies as possible if it meant I got to have my baby" because I know I would think the exact same thing were I unable to fall pregnant myself. But having experienced it I know that I could never do it again.

I have previously touched on my feelings regarding pregnancy, but it was only when talking to Danielle that I realised just how deep the discomfort this issue brings runs. By worrying about inadvertently upsetting someone I guarded my posts from ever truly touching on Endometriosis, which is still a major aspect of my life. It is almost like there are two groups people affected by Endometriosis, those whose fertility is unaffected and those who face infertility due to it. There are so many groups out there for women facing infertility and within that group there is another division: those who never get the chance to be parents and those who do. I've often read the blogs of women who previously found so much support from the infertile community only to wonder where they fit in now that they are expecting a baby or have a family of their own. And if it's hard for them to know what to say and do, having experienced the same feelings as the readers and friends they now worry about upsetting, then it's certainly hard for those of us who never had to face such things.

But does that mean that we should keep quiet about our own experiences and put on a brave face to hide the pain we are suffering ourselves? I feel almost like I have forgotten why I started writing about Endometriosis in the first place. My initial series on iVillageUK was about trying to conceive and mentioned Endometriosis a lot because at that time I had no idea how my fertility might be affected. Since becoming pregnant and starting a series called "a pregnancy journey" I have barely mentioned Endometriosis and it saddens me that I am missing a great opportunity to spread awareness through such a widely read medium. 

I remember talking to someone about how I would broach the subject of pregnancy on here and deciding that I would try and be as honest as I could about it because that it what this blog is all about. I write about life, my life in particular because that is what I know best after all, and that means writing about every aspect of it. Endometriosis may not be at the forefront of my mind during pregnancy, but it is always nagging away somewhere behind the more obvious things I'm dealing with right now. I worry about how soon my periods will return after the pregnancy is over. I wonder how bad the Endometriosis symptoms may be. I think about the fact that despite so many treatments over recent years the Endometriosis continued to grow and cause more and more havoc on my life, so what is my next option: do I try another form of birth control or see what my body does on its own for the first time in years? And how will all of this affect my ability to do all I want to as a mother? 

Yeah, there are many things I could write about regarding Endometriosis even during pregnancy, and even if there weren't I could still be promoting the work of others like Danielle, because at the end of the day Endometriosis is a chronic condition and it's going to be with me for a long time. But finding that balance between writing about it and trying to ensure I don't come across as "rubbing my pregnancy in other people's faces" is a difficult one. Yet it is one I need to find because if I am to live up to Danielle's kind words about me and the work I do for Endometriosis Awareness, then I need to be writing about it much more frequently than I have in recent months. 

So stay tuned for some new projects and ideas I have regarding Endometriosis over the coming months and please do get in touch if you are, or know someone who is, trying to live live with Endometriosis. It would be great to hear from you. 

And as a last thought, why not consider following me on Twitter? I finally built up the courage to overcome my complete lack of knowledge regarding it and joined up last night. You'll have to give me a few days/weeks to get to grips with how it works, but it would be great to see you there too. My username is @amandaspatch 

TTC: The First Step

For those of you confused by the title of this post, TTC stands for “trying to conceive”. There are a lot of these abbreviations on fertility and infertility blogs and forums and I know how confusing they can be to those of us “not in the know”, so I will try to keep the use of them to a minimum. However TTC is a main one I will use, as it is much quicker than writing “trying to conceive” every time.

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As I am sure you are all aware by now, Tim and I have been waiting until after our wedding to begin TTC. We had hoped to be able to discuss the removal of my mirena and other alternatives for helping with my Endometriosis symptoms with the gynaecologist before actually having it removed, however with my appointment being rescheduled a second time we decided we didn’t really want to wait any longer.

The are several reasons behind this. First, and most important, is the fact that we both feel ready. The second, and almost as important as the first, is the fact that even with a Mirena coil and no periods, new Endometriosis adhesions formed within a few short years between laparoscopies and we daren’t leave it too long after my last laparoscopy in 2009 before TTC. Each time the adhesions occur and surgery is performed, new scar tissue is created, which is entirely undesirable in any circumstances, but especially when TTC.

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There are other reasons too, including how my general health has been in previous years. The above photo was taken in December 2008, shortly after my first “pseudo-menopause” in the hopes of dealing with the return of my Endometriosis symptoms. I felt dreadful and cannot believe that I managed to survive another year of feeling that way as well as moving home twice, going through further treatments and commuting to and from work, meaning I was out of the house almost 12 hours each day.

When I gave up work and set up the Patch, it was to try and regain a certain level of “normalcy” to the way I was feeling, in hopes of being able to start a family further down the line. I reached what I call “breaking point” last Christmas and knew that something had to give and I would be damned if it had been my health and the prospect of having children. I still feel guilty at causing us huge financial strain by giving up work, but I know in my heart we made the right choice.

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Because here we are, in the run up to Christmas 2010, married and excited about having my Mirena removed so that we can begin TTC. No matter the strain of meeting each month’s rent and trying to make a success of my business (or finding part-time work), we couldn’t want for more than to be with each other, dreaming of expanding our little family.

Don’t get me wrong: I am also terrified. I am finally where I have dreamed of being all my life and now I am here it seems far more scary than I ever imagined. Part of that is due to the immensity of the situation and part of it is due to the fact that I am having the one thing removed that has ever truly helped with my Endometriosis symptoms.

I spent years trying different contraceptives and hormone treatments to deal with the Endometriosis, and those of you who have followed this blog for a while will know that the Mirena certainly didn’t protect me from all of the symptoms. But a lack of heavy bleeding each month certainly made a huge difference to my ability to cope long-term with things. I may also have cramps regularly throughout the month, but they never confine me to bed any more.

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But we’re looking to a future that will be bright and full of love and that is all that really matters right now. This blog will not become a running commentary on our TTC journey, but the occasional post will pop up. And don’t forget you can follow my series on the iVillageUK Pregnancy and Baby Channel if you want more regular thoughts on the matter of TTC with Endometriosis.

For now, though, please hold us in your thoughts as we take this first step in our TTC journey.

It’s End-O not “The End”

As you may have read either on Facebook or this week's Life at the Patch update, I had an interesting conversation with a journalist last week regarding Endo and how it had affected my life, particularly in terms of my choice to leave my job and start my own business.

The conversation I had made me realise two things: The first being that I really am incredibly passionate about spreading awareness of Endometriosis and the second being that other people see me as "inspirational" in the way that I view my own battle with it.

I hope this doesn't sound like I am blowing my own trumpet, but I am pleased to hear that people find my way of looking at things "inspirational" and as such, I feel I should be doing more to spread awareness in a way that looks at both the positive and the negative sides of the condition.

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I include the above photo, not because it is pretty, but because it shows just how grey, drawn, ill and exhausted a bad day or few days with Endo can make you become to give you some perspective… 

I'm not going to lie – Endometriosis can be HELL. There are many times in my life that I have felt "let down" by the condition, a recent example being the fact that I was perfectly competent at my old job and could have gone a long way with that career, but my health wouldn't allow it. However, I refuse to become a "victim" of life and have chosen to make something of it. So, in choosing to give up "conventional" work, I have chosen to create my own "career" by devoting my time, energy and skill into creating a safe and happy place for myself and my readers.

Life, to me, is about seeing a possibility and making it work. It is about dreaming big and, if those dreams fall apart, creating a new dream. That doesn't mean I don't find it hard sometimes – by choosing to give up work I effectively accept that we will never be as financially secure as we could have been had we both worked, and our own home, holidays and a better, more fuel-efficient and eco-friendly car are out of the question. But, happiness and health is far more important and as long as we can afford the bills, then we will survive. I may complain about not having enough money for that pair of shoes I love, the trip to visit a friend abroad or the fact that I *still* cannot afford to learn to drive, but I'm not going to let those things darken the beauty that is all around me.

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When I started Amanda's Patch, I didn't really know where I would go with it, just that I wanted, in fact *needed*, to create something. I am a creative person, and by doing what makes me happy I feel better – free therapy, I like to call it. I still don't know exactly where it is going, but it is exciting nonetheless. And since my chat with the journalist, I suddenly realised I wanted to make Amanda's Patch (the shop and the blog) a safe place for people to visit, share experiences, learn and express themselves. The shop is already growing with the works of others, and I do believe I can see a whole new section for the Patch – "It's End-O, not 'The End'"

Stay with me, dear readers, as I develop the Patch further. Dreams are coming true every day and I am loving every moment. But life has its challenges and Endo is one of mine. And so, from time to time, you'll find it cropping up in what I'm doing, from sharing experiences of complementary therapies to the fears and struggles related to starting a family. Too often, the "taboo" of menstrual disorders is left unsaid, or only ever given a voice within it's own subject area (i.e. blogs or networks devoted entirely to it)… I decided a long time ago that I wouldn't keep it a secret from those around me, and that includes those I only know on here. I'm not about to become an "Endo blog"… but Endo is a part of my life and so it will be a part of this site, a beautiful, honest and inspiring part, I hope!